NOTHING IS IMPOSSIBLE
Reflections on a New Life

by Christopher Reeve





Published by:
Random House,
New York, N.y. 10171.


Copyright 2002 by Cambria
Productions, Inc.
BOOK JACKET INFORMATION

WITH IMAGES BY MATTHEW REEVE

Praise for STILL ME

"A remarkable book ... Reeve's
autobiography is distinguished not only by the
dignified candor with which he describes his
utterly changed world but also by his emotional
directness. ... [Reeve] communicates so
well that it's easy to forget that every word of Still
Me has been wrested from a body in revolt
against a mind clarified by adversity."--
Entertainment Weekly

"A decent human being with a stunning lack of
ego ... Through his honesty, dignity and clarity of
purpose, Reeve has created an involving
book and a meaningful life."--The New York
Times Book Review

"[Still Me] redefines the idea of hero.
... In this detailed and well-written
autobiography, Reeve proves that, in many
ways, he has transcended previous
accomplishments through his courage and character."
--The Boston Globe

"A story of enormous depth: honest,
intelligent and compelling. I have rarely read
anything as moving and would offer one small piece of
advice should you be tempted--read it in a room
on your own so you won't feel ashamed of weeping,
and keep a box of tissues and a stiff drink within
reach at all times."--Sunday Times
(london)

"A memoir that's outspoken, wise, and
tremendously moving ... No doubt, Reeve
is "still me"--but readers of his beautifully
composed book will see that he is now also more--that through
nearly unimaginable suffering and effort, he has
transformed a charmed life into one blessed to be a
true profile in courage."--Publisher's
Weekly

Christopher Reeve has mastered the art of
turning the impossible into the inevitable. In
Nothing Is Impossible, the author of the
bestselling autobiography Still Me
shows that we are all capable of overcoming
seemingly insurmountable hardships. He
interweaves anecdotes from his own life with
excerpts from speeches and interviews he's given
and with evocative photos taken by his son
Matthew.
Reeve teaches us that for able-bodied people,
paralysis is a choice--a choice to live with
self-doubt and a fear of taking risks--and that it
is not an acceptable one. Reeve knows from
experience that the work of conquering inner space is
hard and that it requires some suffering--after all,
nothing worth having is easy to get. He asks
challenging questions about why it seems so difficult--
if not impossible--for us to work together as a
society. He steers the reader gently, offering his
reflections and guidance but not the pat answers that
often characterize inspirational works.
Published on the eve of both his fiftieth
birthday and the seventh anniversary of his spinal
cord injury, Christopher Reeve's Nothing
Is Impossible reminds us that life is not
to be taken for granted but to be lived fully with
zeal, curiosity, and gratitude. That is a
powerful message in itself, but it is the messenger
who gives it its full resonance.

Visit the Christopher Reeve Paralysis
Foundation website at
www.christopherreeve.org and the
Christopher and Dana Reeve Paralysis
Resource Center website at
www.paralysis.org.

JACKET DESIGN: KAPO NG
JACKET PHOTOGRAPH: (copyright)
TIMOTHY GREENFIELD-SANDERS

Also by Christopher Reeve

Still Me

ABOUT THE AUTHOR

Christopher Reeve has established a
reputation as one of the country's leading actors, and
since he was paralyzed in an equestrian
competition in 1995, he has put a human
face on spinal cord injury. Reeve is the
chairman of the board of the Christopher
Reeve Paralysis Foundation (Crpf) and the
vice chairman of the National Organization on
Disability, and he lobbies vigorously for
health-care reform and funding for research. He is
the author of the bestselling book Still Me and
lives in upstate New York with his wife,
Dana, and their children.

ABOUT THE PHOTOGRAPHER

Matthew Reeve is a recent graduate
of Brown University with a B.a. in art
semiotics. He has previously worked for
ABC News and MTV Europe. He is
currently a freelance photographer and
independent filmmaker whose first full-length
documentary will be distributed worldwide in late
2002 and early 2003. Matthew divides his
time between London and New York.





Random House and colophon are
registered trademarks of Random House, Inc.

Grateful acknowledgment is made to Michael
Gazzaniga, Ph.d., for permission to reprint
an excerpt from "Zygotes and People Aren't Quite the
Same" by Michael Gazzaniga, Ph.d.,
originally published in The New York
Times, April 25, 2002. Copyright
2002 by Michael Gazzaniga. Reprinted
by permission of the author.
SPECIAL SYMBOLS
USED IN THIS VOLUME

Computer Braille Code
Begin Computer Braille Code.
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For Dana, Matthew, Alexandra, and
Will, without whom nothing would be possible
Contents

Page
ACKNOWLEDGMENTS ...................... 1

The First Decision .................... 5
Humor ........................... 21
Mind/body ....................... 32
Parenting ........................... 46
Religion ........................ 61
Advocacy ........................ 78
Recovery ........................ 103
Faith ........................... 137
Hope ........................... 153

This braille edition contains the entire text of the
print edition.
NOTHING IS IMPOSSIBLE

Acknowledgments

Ann Godoff, at Random House, did me
the great honor of approving this book without delay
and editing it herself. Sunshine Lucas was an
excellent liaison between us, answering questions
tirelessly and--befitting her name--cheerfully throughout
the process. Jennifer Walsh, my literary
agent at William Morris, represented
both the book and me personally with the utmost
integrity and professionalism.
The original idea was to compile excerpts from
speeches and interviews I'd given from 1995
through 2002. I want to thank Sarah Houghton,
Diana De Rosa, Maggie Goldberg, and
Shyrlee Greenberg for the countless hours they spent
transcribing my spoken words and their gracious
acceptance of the fact that I found 99 percent of
them unusable. Now I know that improvised
remarks don't always translate well onto the
written page.
I want to thank Rachel Strife, Karen
Gerwin, Liza Cohen, and especially June
Fox and my assistant, Laurie Hawkins, for
all the time they spent sitting next to me at the
computer, patiently waiting for the next sentence.
I'm also grateful for their invaluable comments and
suggestions as we proceeded.
I'll be forever grateful to Therapeutic
Alliances, Inc., for the ERGYS 2 bicycle;
to Pulmonetic Systems, Inc., for the LTV
Pressure Support Ventilator;
to Nellcor for the Pulse Oximeter and
computerized carbon dioxide meter; and
to Bioflex, Inc., for the FES Stim Machine.
That equipment has kept me (and I hope will
keep others) in good health and out of the hospital.
My nurses and aides work incredibly long
hours and have honored our whole family with their
skill and commitment. I would especially like to mention
Dolly Arro, Eileen Adams, Bill
Bernhey, Sue Citarella, Maggie Choa,
Henry Ryan, Marlou Sanchez, Shelley
Griesinger, Patrick Connors, Chris
Fantini, Rob Clarke, Jim Hartigan,
Greg Coyle, Mark Pawelec, Frank
Palmer, and Mike Ricci.
Dr. Harlan Weinberg and Dr. Steven
Kirshblum have gone way beyond the call of
duty to help and advise me since my return
home. The X-ray and ultrasound technicians
at Northern Westchester Hospital are
terrific; however, I hope to see them less
frequently in the future. The same goes for
Doctors Howard Levin, Oren Kahn,
Steven Bernstein, David Bank, Eric
Johnson, and Eli Abemeyer, who have all
helped to keep me in one piece. Dr. John
McDonald and his associates at Washington
University pushed me to the limit in conducting their
study. Dr. Linda Schultz, his indefatigable
assistant, deserves tremendous credit for
making it happen.
I want to thank everyone at the Christopher
Reeve Paralysis Foundation and the Christopher and
Dana Reeve Paralysis Resource Center,
all of whom continually renew their dedication and
efforts to help people living with paralysis. My
publicist, Wes Combs, has done an outstanding
job of communicating our message to the public.
Special thanks go to Michael
Manganiello, director of government
affairs at CRPF, for his extraordinary
loyalty to me and his fierce dedication to the cause.
Finally, I want to thank my extended
family--all the Reeves, Johnsons,
Pitneys, and Morosinis. Above all, I
want to say thank you to my wife, Dana, who
is also my best friend and most helpful critic.
There is not enough room on the page for me to list
all the unique characteristics and accomplishments of
Matthew, Alexandra, and W. I hope this book
will give you some idea of how much they mean to me.
The First Decision

As the old saying goes, you better know what you
want because you might get it and you've got to accept
it. Whether you succeed or whether you encounter
adversity, you always have to believe in your worth as a
person. That's what counts.
--Remarks at a success seminar in
Portland, Oregon, February 6,


When I made those comments in 2001, it was no
longer difficult for me to say to anyone that you have
to believe in your worth as a person. But in the
intensive care unit at the University of
Virginia on June 1, 1995, I had no
such belief. Far from it. On that day I regained
consciousness to find myself lying in traction, a heavy
metal ball suspended behind my head attached to a
metal frame secured by screws in each
temple. I learned that as the result of a fall
during an equestrian competition I had broken
my neck just centimeters below the brain stem, and that
my chances of surviving the surgery to reattach my
head to my spinal column were 50/50 at best.
Even if the operation was successful, I would still
remain paralyzed from the shoulders down and unable
to breathe on my own. I heard the whooshing sound of a
ventilator as it pumped oxygen into my lungs
through a long tube inserted into a hole in my
neck. I've lived with that sound for many years.
The moment I understood the gravity of my
situation my immediate reaction was that such a life was
unacceptable, even though I knew absolutely
nothing about living as a vent-dependent
quadriplegic. I realized that there was no cure
for spinal cord injuries like mine and that I would
forever be dependent on others for the basic
necessities of daily existence. My role as
a husband and the father of three children would be severely
compromised, because paralysis had suddenly
transformed me into a forty-two-year-old infant.
I thought it would be selfish and unfair to remain
alive.
I remember going over my life, taking an
inventory of all the cuts, bruises, broken
bones, and illnesses I had weathered, ranging from
mononucleosis to malaria and mastocytosis (a
rare disease that destroys red blood cells as they
emerge from the bone marrow). At age sixteen,
I developed alopecia areata, a
condition that causes patches of baldness in an
otherwise healthy head of hair. Fortunately
I was able to comb over the spots, and there were long
periods of remission when the baldness disappeared.
I was a survivor; I always had been. A part
of me insisted that this situation shouldn't be any
different; another part acknowledged that this time I had
gone over the edge and was free-falling into the
unknown.
The month I spent in the intensive care unit
was an emotional roller-coaster ride created
by my own inner turmoil and contradictions coming from
those involved in my case. The critical care was
nothing short of miraculous. Dr. John
Jane--arguably one of the best neurosurgeons
in the world--achieved the nearly impossible feat of
reattaching the base of my skull to my spinal
column with wire, titanium, and bone grafted
from my hip. Under his watchful eye, a team of
internists and pulmonologists cured me of
ulcers and pneumonia. By the second week I
was able to turn my head about half an inch from side
to side, and I could raise my shoulders
slightly. Dr. Jane was confident that before too
long I would be able to move my deltoids, which
might lead to the functional recovery of my right
arm. Perhaps I could learn to feed myself, and someday be
able to drive a specially adapted car. My spirits
rose.
In the third week of June I was visited
by Dr. Marcalee Sipski, director of the
Spinal Cord Injury Unit at the Kessler
Rehabilitation Institute in West Orange,
New Jersey. My wife, Dana, and my younger
brother, Benjamin, had surveyed rehab centers
from Georgia to Colorado and concluded that
Kessler was the best choice, because I would receive the
highest quality care without having to go far from
home. Dr. Sipski gave me a thorough
examination and then told me point blank that my
injury was "complete"--meaning that the cord had been
severed at the second cervical vertebra (known
as "C-2"). Signals from the brain would never
be able to get past the injury site. Without any
direction from above, the spinal cord would remain
useless and the skin, muscles, bones, and tissues
of my body would begin a steady progression of
atrophy and decay. All I knew about the
regeneration of cut or damaged nerves was that it was
possible in the peripheral nervous system but
not in the central nervous system.
I asked questions about the spinal cord and why the
nerves inside it could not regenerate. Usually I
had these conversations late at night with the residents
and nurses on duty in the unit. (the days were
filled with family, visitors, and the routines of
necessary care.) Nobody claimed to know for certain,
but the prevailing explanation was that it had to do with
evolution. An animal paralyzed by a spinal
cord injury would most likely be a
ready-to-serve meal for another animal higher
on the food chain. Even if nerve regeneration in
the spinal cord was possible it couldn't happen
quickly, so the injured animal would still be easy
prey. Without medical intervention the victim of a
spinal cord injury--animal or human--
usually dies within hours or days, depending on the
severity of the case. Almost every one of these
late-night discussions ended with the conclusion that I
should just consider myself lucky to be alive. I
wasn't so sure.
Apparently no one in my little nighttime
universe knew that a handful of scientists around the
world had been investigating the possibility of
regeneration in the spinal cord as early as the
1970's. In 1981 Dr. Alberto
Aguayo, at McGill University in
Montreal, using a cocktail of growth-enhancing
chemicals, achieved regeneration and modest
functional recovery in rats.
I only began to focus on spinal cord
research in early September 1995. Until
then my primary concern was survival, not only for
me as a patient but for Dana and my three children,
Matthew (fifteen), Alexandra (eleven), and
Will (three). Their love and the love that flowed from
my extended family, as well as from friends and even
complete strangers all over the world, had saved
me from my initial desire to end it all. In
2002, seven years after the accident and in the year
of my fiftieth birthday, I look back with
almost indescribable gratitude at the moment when
Dana knelt by my bedside and said, "You're still
you, and I love you."
Her simple but profound declaration became the
basis for my autobiography, Still Me, which
was published in 1998. But in describing that
scene I never mentioned one critical detail:
in response to my thoughts about ending my life, she
said that we should wait for at least two
years. Then, if I still felt the same, we could
find a way to let me go. On one level, you
could say she used the oldest selling technique in
the book: you offer customers a free trial, a
free sample, with no obligation and no money
down, in order to get them on the hook. On
another level, a much deeper one where our love
and respect for each other has always lived, she
knew that I was only in the first stage of a
natural reaction to tragedy. Asking me to wait
was the perfect course of action. She was giving me
room, the freedom to make a choice, yet knowing
what that choice would be in time.
The first decision flowed from Dana's words and the
look on the faces of all three children when they
came into my room. While Dana supported the
option to reconsider the value of life at a
point in the future, I could tell in an instant
that the children wanted me to live and be there for them now.
I consented to the surgery. I gave the doctors
permission to suction secretions out of my lungs and
use IV antibiotics to treat the pneumonia
that otherwise would have caused my death. Although I
didn't realize it at the time, I had chosen the
path toward survival. Inner turmoil and the
highs and lows caused by contradictory information would
become the norm, but there would be no turning back.
First I had to learn to swallow. Even though I
passed the test, the smell and taste of food were
repulsive. A feeding tube was inserted into my
stomach, and during the night a bagful of
mocha-colored goop containing essential
nutrients dripped down a long catheter into the
site. Once a day a team of nurses and
physical therapists transferred me into a
wheelchair and pushed me down a corridor into the
dayroom, where I could receive visitors and have someone
in my family read letters to me for no more than
thirty minutes. Then it was back to bed.
I couldn't believe how complicated this daily
excursion was. First my head and neck had to be
immobilized in a rigid cervical collar.
Then Ace bandages were wrapped around most of my
torso in order to keep my blood pressure from
dropping when I sat up. Next a rigid
sheet of plastic called a sliding board was
positioned under my body; two nurses rolled
me onto my side while two others slid the
board into place. Before the transfer into the
wheelchair I was gradually pushed up
into a sitting position on the bed. My blood
pressure was monitored every ninety seconds.
Sometimes I would faint, which meant a ten-
to fifteen-minute wait before another attempt.
On a bad day it might take two or three
tries. On a good day I could achieve sitting
up with a stabilized blood pressure in about
twenty minutes. When I could sit up without
"crashing" we were ready for the big maneuver. The
wheelchair was placed against the left side of the bed
and its right arm removed. The bed was lowered to the
level of the wheelchair. I lay flat again and my
team of helpers carefully dragged the sliding
board over to form a bridge between the wheelchair and the
bed. The next step was sitting up again. If that was
successful, I was gently placed in the chair and the
board was taken away. After a few minutes of
adjusting to being in the wheelchair, I was pushed down
the corridor and into the dayroom.
As I started to face reality during the month in
intensive care and six months in rehab, moments
from my former life kept popping into my head. It
was like a slide show, but the pictures were all out of
sequence, as if they had been placed randomly in
the projector. As a long plastic tube was
inserted through my neck and pushed down into my lungs
to remove accumulating fluid, suddenly I would
be sailing in Maine. But before the next slide
appeared on the screen in my mind, secretions were
being suctioned up the tube. A moment or two
later, Dana and I were making love; I was on
a horse jumping over stone walls in the
countryside; I was taking a curtain call after
a performance in the theater, carrying boxes and lugging
furniture up four flights of stairs into my
first apartment in New York. Then it was four in the
morning, and two aides had woken me up
by turning me over onto my other side so that my
skin wouldn't break down from lying in one position
too long. Even though I was flipped from side
to side every two hours at night for nearly three
years after my injury, I almost never slept through
it. More images flashed on the screen, usually
snapshots of my most cherished memories when I
was whole and healthy and free.
Psychologists came to the bedside, but their
tone was often patronizing and I was usually
relieved when they went away. I had to read the
Spinal Cord Manual, which had little to say
about patients with my level of injury.
I had to choose a color for my new
Sip-n-Puff wheelchair, which would allow me
to drive by myself without being pushed. I had to locate
a specially equipped accessible van with
four-wheel drive, heavy-duty shock
absorbers, and a mechanical lift. I had
to approve plans for remodeling our house so that
I could work, eat, and sleep all on one
floor. There were dozens of other issues that had
to be faced. Reality was now my new identity as
a C-2 vent-dependent quadriplegic. My
vision for the future prior to three o'clock on May
27, 1995, I now classified as what would have
been a normal life. Everything after that instant
I now had to accept as the new reality. Deep
inside I was angry, and I probably still carry
much of that anger with me today. But the critical
factor was that in spite of myself, I was adjusting
to my new life.
Dana's intuition about what my state of mind
would be two years after the accident proved to be
absolutely right: I was glad to be alive, not
out of obligation to others, but because life was worth
living. By May 27, 1997, we were settled in
our bedroom in the new wing of our home north of
New York City, having camped out in the dining
room for more than six months. In the
Gloaming, a film I directed for HBO,
had premiered in late April and been warmly
received by the critics and the public. I had become
the spokesman for HealthExtras, a company
based in Maryland that offers low-cost supplemental
insurance to cover nonmedical expenses in the
event of a catastrophic illness or disability.
The American Paralysis Association, founded
by Henry Stifel, Sr., in 1982 after his son
Henry suffered a spinal cord injury at age
seventeen, had now become the Christopher
Reeve Paralysis Foundation. Although it was still
run by a small staff in a Springfield, New
Jersey, office building, the annual research
budget had grown from $300,000 to more than $3
million. I was healthy enough to accept speaking
engagements around the country, even though the travel
required private planes, three nurses,
two aides, and a coordinator of logistics and
accessibility.
Today I am probably busier than I was before
the accident. I have to juggle physical therapy,
my responsibilities at the foundation and
as vice-chairman of the National Organization on
Disability, writing, producing, directing,
family, friends, travel, and much more. When people ask
if I am disturbed by the fact that others pity me,
I have to admit that the problem actually is that
everyone seems to assume I can do almost anything.
On a Thursday in late April 2002,
Dana and I received an invitation from the king of
Spain to fly to Barcelona for the weekend. The
offer was to attend a Formula One race with the
royal family that Saturday afternoon, followed by a
small private dinner and an appearance at a
party around midnight. On Sunday we were to have
lunch at a nearby seaside resort before
returning to New York that evening on the king's
private jet. Needless to say we would have been
there in a heartbeat, except for a few details.
When our logistics coordinator, Diana De
Rosa, contacted all the king's men (or at least
those involved in planning the weekend), she gave
them the dimensions of my wheelchair and soon
discovered that there was room for me at the
racetrack, but not at the party. Apparently our
attendance at that occasion was very important to the
king, but no entrance to the venue was at least
thirty-one inches wide. Diana never got around
to listing some of the other requirements for the trip: a
hospital bed with an inflatable mattress,
supplemental oxygen, voltage converters for the
ventilator and the battery charger for the wheelchair,
accommodations for an entourage of at least seven
or eight people, and contingency plans with a first-rate
hospital in case of an emergency.
Whenever I travel, all those issues have to be
taken inffconsideration, but nine times out of ten I go.
In 1995, a trip down the corridor to a
hospital dayroom was an arduous journey. In
2002, a weekend trip to Spain was only a
question of relatively minor logistics.
Unfortunately the invitation was politely
withdrawn.

On May 3, 2002, Dana and I hosted
the ribbon-cutting ceremony for the CRPF'S new
Paralysis Resource Center near our main
office in Springfield. Funded by the government
through the Centers for Disease Control in Atlanta,
it is the source of information for anyone newly
paralyzed or living with paralysis for any
reason. Simply by going to
www.paralysis.org on the Internet,
patients and their caregivers can access our
website and find referrals to accessibility,
assisted living, transportation, job
opportunities, recreation, and much more. Sometimes
it seems that Dana and I were looking for answers
to many of those questions just the other day. Suddenly seven
years have gone by and we're in a position to give
advice. What I say to others depends on their
condition. I tell people who have been injured
recently and are still contemplating suicide that
life is worth living. Many respond well to the
fact that there are no absolutes. I try
to lift their spirits by making light of some research.
Scientists reverse their findings all the time: first
they say coffee is okay, and then they say it's
not. They go back and forth about the benefits of red
wine, butter versus margarine, how long a mother
should breast-feed, and how many times a week (if
any) you should eat eggs. What about all the people who
are up and around long after a doctor told them they
had only six months to live or would never walk
again? Some people live with paralysis but don't take
care of their health. I suggest that they eat
properly and try to find a way to exercise. It
might help with recovery; at the very least it will
mean fewer visits to the hospital.
Occasionally I hear from people with spinal cord
injuries who have been sitting in a wheelchair for
as much as twenty-one years. Some tell me that there
is no point in searching for a cure; others even
say they are happy with life the way it is and
don't want to be cured. It's difficult for
me to understand their point of view, but I completely
respect those individuals as long as they don't
try to interfere with progress. Less than a
generation ago it would have been almost irrelevant
to ask a patient with Parkinson's,
Alzheimer's, diabetes, muscular
dystrophy, ALS, or a spinal cord injury
not to stand in the way of progress, simply because there
wasn't much. Today all that has changed. Since
the time of my injury, scientists all over the world
have been steadily moving forward, although they are not
progressing as rapidly as many patients would like.
At least they have been saying publicly, and most
of us believe privately, that it is no longer
appropriate or necessary to use the word
"impossible."

Humor

Teacher. "Why weren't you in class yesterday?"
Student. "Sir, I wasn't feeling very
well."
Teacher. "The only excuse for nonattendance is
quadruple amputation. But even then, they can still
bring you to class in a basket."
--My twelfth-grade English teacher,
George Packard, and a classmate,
Princeton Day School, 1970

When things are really bad, you have to laugh. We
use humor to relieve tension and cope with many
things in life that are whimsical and even absurd.
Humor can camouflage jealousy, prejudice,
and intolerance. It can bring people together by common
reference, which was one of the reasons I enjoyed being
an actor. My injury gave me firsthand knowledge that
humor is also one of the best ways--if not the
best way--to channel anger.
Visitors to my bedside at UVA later
remarked that I appeared calm and even
surprisingly peaceful so soon after a major
catastrophe. Inside, though, I was angry
down to my very core. I remember trying my
hardest to seem relaxed for the sake of certain
family members, particularly W. He
understood that I had broken my neck and couldn't
move, but he didn't know much about the future.
Dana and I wanted more than anything to keep him
from becoming traumatized by the situation. While I
drifted in and out of consciousness, she played with him
in the dayroom and was able to make him understand that I was
the same Dad, but different.
Although we managed to spare Will from seeing the dark
side of his injured father, my younger brother, Ben,
my mother, Barbara, and Dana had to bear the brunt
of my outrage. They knew all too well that
one of the worst traits of my personality is
perfectionism. A particularly bad example for
them must have been a visit just before the first press
conference after my surgery. I made it clear--
actually I repeatedly demanded--that they must
convince the media and everyone else that I was an
experienced, capable rider fully qualified
to compete in a cross-country jumping event. I
was injured in a freak accident, not a foolish
one.
Fortunately, in the midst of my
efforts to get the word out from my point of view, which
for me was no laughing matter, others began to see
the lighter side. Not unexpectedly, first out of the
box was Saturday Night Live, which
reported the following news item on their
"Weekend Update":
"Christopher Reeve says that the humor of
Robin Williams gave him the will to live. The
humor of Pauly Shore, however, makes him
long for the sweet release of death."
Next out was Howard Stern:
"Too bad about Christopher Reeve. But
man, his wife is a babe."
Then a sick joke started to circulate around
the country, which made its way back to me in
June of '95:
Quite: "What's the difference between Christopher
Reeve and O. J. Simpson?
A: "O. J. walks."
Looking back now, I'm grateful to the media
and the public for breaking the ice, for introducing
humor at a time when there was ongoing daily
coverage about the gravity of my situation. I had
just learned to tolerate partially deflating the
trachea tube (the "trache") inside my neck.
That allowed air to pass over my vocal cords,
so I could speak instead of just mouthing words. It was a
big step forward, both practically and
psychologically: for the first three or four weeks
I wanted all the air to go directly into my
lungs.
Now that I could talk and had become fair
game for comedy, I was ready to try some of my own:
Nurse, arriving in the morning: "How are you
today?"
Me: "Well, my throat's a little
scratchy, I have an itch on my nose, and my
fingernails need cutting. Oh--and I'm
paralyzed."
I remember thoroughly embarrassing another
nurse her first day on the job. I had been
treated for a skin breakdown in the sacral area, which
had plagued me for months but finally healed. Lying
on my left side I asked her, "How's my
butt?" She replied, "It looks great to me."
I said, "I know that. But what about my skin?"
She turned crimson. For a moment I thought
I'd lost her, but thankfully she came back for
her next shift, and after all these years she's still
here checking out my butt on a daily
basis.
I'm happy to say that most of the seventeen
nurses and aides who work with me today have been part
of the team since I came home in December of
'95. Over time they have transformed from "health
care professionals" to extended family. Many of
them were initially intimidated by me, so I tried
to use humor to make the new recruits more
comfortable. Most of my efforts were rather pathetic, but
they were still necessary to ease frustration and manage
anger. Sometimes I would pull up to a door and
then bark to be let out. During the morning ritual
of putting new bandages on my neck at the
trache site, a nurse would ask if the seal was
tight enough. If I was happy with it, I would
bark like a seal. Once a nurse asked me if
I liked my wheelchair. I told her I
didn't exactly like it but it was a good thing
to legally drink and drive at the same time.
Jokes about the wheelchair helped defuse my
anger about being in one. I also quickly discovered that
when I appeared in public it was best to begin with a
light remark to put the audience at ease. At
the Oscars in March 1996, my opening line
was, "What you probably don't know is that I
left New York last September and I just
got here today. But I'm glad I did, because I
wouldn't have missed this welcome for anything in the
world." Knowing that Jay Leno is an avid car
collector, I made him an offer on The
Tonight Show: "When I'm out of this chair you can
take it, put a Chevy 350 engine in it, and
blast down the freeway." When David
Letterman asked me how I was doing, I told
him and the audience, "I was fine, but I think I
broke my neck again driving over all the
potholes on my way into the city."
In the process of adjusting to my new life,
I began to enjoy slightly sick or
inappropriate humor the most. Of all the
performances in the 1997 ABC special
Christopher Reeve: A Celebration of
Hope, I particularly appreciated that of
Chris Fonseca, a Mexican comedian with
cerebral palsy. He complained about the woman
who received a $2.9 million settlement from
McDonald's after spilling scalding-hot
coffee in her lap, saying, "I've done that. But
I kinda liked it. Do I owe them money?"
Then he told us, "I was in a
restaurant awhile back. I started choking. I
tried to get help. [He made frantic
gestures with his hands.] Wouldn't you know it, I
accidentally proposed to a deaf girl! So I'm
married now."
When I was in rehab, my friend Treat
Williams came to visit and found me in the
dayroom. His first words: "Don't get up."
Another friend described a sailing trip with a
crew made up of a guy with only one leg,
another who had a heart condition, and a third man
with a broken arm who could only work the starboard
side of the boat. My response: "You should have
invited me. I would have fit right in."
Recently a leading neuroscientist told me
that brain damage can help the injured spinal
cord recover. Apparently motor neurons can
regenerate fairly easily in the brain and then
migrate down into the cord. I guess the
logical conclusion is that if you are going to end up
paralyzed, you might as well smash your head at
the same time. Then there would be good news and bad
news: you would walk out of the hospital but have no
idea who you are. (i only suffered a spinal
cord injury; is it too late to pound my head
against a brick wall?)
Luckily my greater appreciation of sick
humor hasn't spoiled the pleasure I find in
humor of the less cynical kind. Over the years
I've enjoyed many moments of simple delight.
One morning Dana and I were awakened at about
5:30 A.m. as three-year-old Will burst
into the bedroom with his arms extended, spinning in
circles, saying, "Look! I'm a
hummingbird!" One of the highlights after my
injury was Robin Williams's sudden appearance
in the ICU dressed in full scrubs,
impersonating a manic Russian
proctologist. During one of his many visits
to our home he watched a nurse suction
secretions from my trache with a coughalator,
basically a vacuum cleaner for the lungs. Robin
grabbed it and went to work on the bedspread, then the
curtains, and was about to start on the carpet before his
new toy was taken away from him.

Since the beginning of my new life, I've
always wanted it to be as normal as possible. The
longing for normalcy applies to every aspect of
living with a disability, from health
to relationships, work, travel, and play. It's
been difficult to find the right balance between managing
my own needs and meeting my obligations to others.
Some days I don't realize how serious and
"heavy" I am. How nice it is then to be
teased. I love it when I approach the dinner
table, which I occasionally hit as I try to park, and
Will picks up his plate, warning, "Look out for the
crazy driver." Or when I tell Dana how
nice her new sweater looks and she reminds me
that I bought it for her birthday three years ago.
My oldest son, Matthew, teases me
relentlessly about my computer illiteracy and
general ignorance of modern technology (i have
to admit that when the occupational therapists tried
to teach me to use a voice-activated computer in
rehab I kept falling asleep). My
daughter, Alexandra, refers to me as "The Big
Cheese" behind my back. I take that as a
compliment, an affirmation for her and our whole
family that I'm still an authority figure and
worthy of the respect they've always shown me.
Most important, all three of my children have a
great sense of humor. Will has a very dry wit and
understands double meanings that would go right over the heads of
many nine-year-olds. Matthew and Also, now
twenty-two and eighteen respectively, enjoy
humor ranging from The Osbournes
to sophisticated exchanges with adults and their
friends in college. It's a great relief to see
that my disability doesn't seem to be holding them
back.
Perhaps the best piece of advice about humor
came from a complete stranger who wrote,
"Laugh now, so you don't end up living in the
past." When people ask me, "How do you keep it
together?" my answer is, "Mostly with duct
tape." It keeps the hose from falling off the
ventilator that keeps me alive; it's good for
taping pieces of the armrests on my chair back
together after I've crashed into something; I use it
to put Will's artwork up on our walls. Chamois
(our beloved yellow Lab) loves to chase
rolls of duct tape when she gets tired of
tennis balls. The company that makes it should use
me in a commercial.
The emotional extremes of adjusting to a
catastrophic illness or disability range from
suicidal despair to recovering an appetite
for life. Somewhere in between is a gray area
of numbness. You don't feel really depressed
but you don't get excited about anything either. One
day blends into another as the same rituals of
care are repeated over and over again. You think about
calling a friend but decide not to because there's not much
to say. Often you have to be persuaded to go outdoors
by a nurse or family member who reminds you that
you've been sitting in your office without moving for more
than six hours. You hear of a recent experiment
in a laboratory described as "an exciting
breakthrough": paralyzed rats treated with X were able
to climb a few steps up a rope ladder six
weeks later. You think, "Terrific. What
does it mean to me or any of the rest of us?"
In my new life I've slipped into that
"numb zone" many times. That's when creating humor
and appreciating it becomes very difficult, but
even more necessary. It doesn't matter if you're not
that funny. (as a friend of Robin Williams for
nearly thirty years I learned that lesson long
ago.) The point is that the numb zone can become
dangerously comfortable. If you get stuck in it for a
long period of time you may end up going back
to square one, when life after a catastrophe has
no meaning.
I'm reminded of a legendary show-business
anecdote about a comedian lying on his deathbed.
When asked how he was feeling, he replied,
"Dying is easy; comedy is hard." Many of us
live in the numb zone whether we are disabled or
not. In fact many people who are suffering from some condition
look at others who are not ill but seem to be
unhappy and wonder what gives them the right
to complain. Everything's relative; no one gets
to corner the market on misery. But I agree
with the dying comedian: sometimes humor is hard, but
it's worth it.

Mind/body

When I was injured I thought that it must be my
fault, that I was being punished for being a bad
person. That's a natural reaction. But part of
what helped me to turn around fairly quickly was the
core of discipline I had developed over the
years. It helped me to see this as a new chapter
in my life rather than the end of it.
--Remarks at the Kennedy Center, Greater
Washington Society of Association
Executives Distinguished Speaker
Series, December 2, 1996

There is great treasure there behind our skull and
this is true about all of us. This little treasure
has great, great powers, and I would say we only
have learned a very, very small part of what it can do.
--Isaac Bashevis Singer

Before my injury I believed that our overall
health is affected by our state of mind, but I was
highly skeptical of those claiming to be healers.
The damage to my spinal cord and all the ensuing
complications led to a reconsideration of those
beliefs. I've had pneumonia, blood
clots, broken bones, and reactions to drugs--which
have all required medical care ranging from pills
to IV antibiotics to hospitalization. I've
also been approached by many well-meaning
individuals who have professed the ability to heal
me noninvasively, using only their "special
powers."
An emergency, such as a blood clot or a
collapsed lung, has always led me immediately to the
ER. Long-term issues of gaining strength and
recovery of function have made me wonder if there
are indeed genuine healers who can, as they claim,
effect change simply by touch. Most have been
easy to dismiss because their claims of past success
seemed dubious at best and their proposals for
treating me sounded very far-fetched.
But twice I let my guard down and allowed
myself to be examined and treated. The first healer
arrived from Ireland--a short, friendly character in his
late fifties wearing a bright green jacket.
My first thought was that a leprechaun had come to save
me. He claimed that acupressure along my
spinal cord would release endorphins that would
relieve the pain and create "a new
environment." I told him that there was no pain, but
that didn't seem to faze him in the least.
Suddenly my right arm twitched and moved a few
inches. He immediately took credit, but everyone in
the room knew that it was only a routine spasm--
an involuntary movement caused by nerves seeking
a connection to the brain. Score: Medicine 1,
Healer 0.
Supernatural health provider
number two actually made a house call.
(try getting a regular doctor to do that.) He
had been recommended by an acquaintance who told
me that he had successfully cured people of ulcers and
cancer, as well as one spinal cord injury. Will
answered the doorbell, and down the hall came a
banker or a stockbroker in his mid-thirties,
dressed in conventional business attire. My first
thought was, "I'm glad he has a day job."
He accepted a glass of water and settled into a
chair in my office. I soon learned that he
had been in the business world until he was
"called" to change his life's work (though
apparently not his wardrobe) five years earlier.
He began his assessment of me by looking at my
hands and noticing that the little finger on the left was
broken. I told him that it was an old
fracture from a family soccer game and I'd
never bothered to have it set. He announced that we
should do "first things first" and that he would heal the finger
right away. I sat silently for over an hour with
my eyes closed because I didn't want to disrupt
his concentration. He massaged the finger, kneaded it,
moved it in all directions, but kept trying
to start a conversation. How did I like living out in the
country? Any new film projects? I see
(looking at a picture of our boat on the
wall) that you're a sailor. Me too! I
kept my answers short, instinctively not
wanting to give him too much information. At last
he announced that he was done. I looked down and
saw that indeed the little finger was lying flat on the
armrest of my chair instead of in its usual
contracted position. I have to admit I was
pretty impressed--especially because, like the
leprechaun, he didn't charge anything for the
session. We made plans for another visit the
next week. But even before he had reached the
front door on his way out, my finger began
to curl up again. It has remained that way ever
since. (it seems that both times I got what
I paid for.) Score: Medicine 2, Healers
0.
In the quest for a cure from disease or relief from
psychological and emotional distress, you could
put pure medicine at one end of the spectrum and
supernatural interventions at the other. I've
always been fascinated by the possibility that the
treatment for disease and the cause of disease lie somewhere
in the middle. I share the widely held
belief that there is a relationship between the mind and the
body that can both create a physical condition and
enable us to recover from it.
As a teenager I suffered from occasional asthma
and a variety of allergies. For some reason the
worst attacks came on when I went to visit
my father. Was that because of mold spores or mildew
or the tall grass around his nineteenth-century
farmhouse? A few of my friends near my home in
New Jersey lived in similar houses, but I
never had a reaction when I visited them. The
only logical explanation had to be that I was
extremely anxious to please my father. It was
difficult to relax, be myself, or literally
"breathe easy" when he was around. Since these
issues were never discussed, it might have been tension
building up inside that often left me gasping for
breath and sneaking off to use my inhaler.
Perhaps the level of stress in the mind
determines the severity of its manifestation in the
body. There is overwhelming evidence that stress can
be linked to hypertension, ulcers, and a compromised
immune system. Many researchers agree that some
forms of cancer are caused or made worse
by repressed anger. When President Nixon was
embroiled in the Watergate scandal in 1973,
he faced the nation and told us, even as beads of
sweat formed above his lip, "I am not a crook."
At the same time he developed phlebitis--a
condition that causes pain and swelling due to partially
blocked circulation--in one leg. Was this a
coincidence, or was it caused by the mental stress
of maintaining a cover-up? Whenever we don't
feel well we tend to blame it on external
causes: the weather, contact with others, the
environment, or even something we ate. These may
well be contributing factors, but we should
acknowledge that the source of many ailments is within
ourselves.
If we accept that the mindstbody connection can
produce harmful effects, then we can assume that
the same connection has a healing power as well.
Before my injury, a positive attitude
probably helped me bounce back from various
injuries and illnesses. But nothing that had gone before
could have prepared me for an experience I had two
years after I was paralyzed.
In the spring of 1997 a small red spot
appeared on my left ankle, probably
caused by irritation from my shoe. Within a
month the red spot had become a serious wound.
It was only an inch and a half wide, but the skin
had broken down, layer after layer, until the
anklebone itself was exposed. Then the site became
infected and turned septic as it spread up my
leg. I was examined by specialists and told that
there was the potential for a systemic infection, which
might prove fatal. If they detected any
indications of that scenario the only recourse would be
to amputate my leg above the knee. I
remember my immediate reaction, which I did not
hesitate to share with the experts: I told them that
was absolutely unacceptable, because I would need
my leg in order to walk. I remember mentally
drawing a line in the sand, establishing a barrier that
could not and would not be crossed.
I was put on a ten-day course of a powerful
antibiotic administered intravenously. As I
sat on the porch of our summer home in
Massachusetts, gazing for hours on end at the
hills surrounding our property, I kept
picturing my ankle as it used to be. Slowly but
surely new layers of skin began to form. Six
months later the wound had closed. Within a year the
ankle appeared perfectly normal.
I don't claim to understand precisely why my
wound healed and my leg was saved. Certainly
Fortaz, the prescribed antibiotic, is an
aggressive therapy. But even the strongest
antibiotics don't always work; I had learned
that from other treatments when I was in rehab.
Looking back at it now, I believe that I
wouldn't have recovered without the drug. But I also
believe that I wouldn't have recovered without an
ironclad agreement between my mind and my body that
I had to keep my leg.
There were many times during the healing process when
I still felt very anxious about the outcome. It was
much like the decision not to commit suicide after my
accident--the decision created consequences of hard
work, sacrifice, and the beginning of a journey into the
unknown. It was relatively easy to tell the
doctors that I would refuse amputation; my
response was instinctive and probably
irrational, driven by my aggressive and
competitive personality. It was far more
difficult to sit on the porch with my leg
propped up on pillows constantly trying to push
doubt and negativity out of my mind. One minute
I would think, "I can do this--I can heal this
wound." The next minute I would think, "What
are you talking about? You don't have any special
powers." Then I would try yet again to picture
my ankle as it used to be and tell myself that it
deserved to be whole. I reminded myself that I had
always recovered from all kinds of setbacks. There
was even good reason to believe that sooner or later
my spinal cord could be repaired and the nightmare
of paralysis would be over. Why shouldn't this ankle
come with me as I moved forward?
Internal chatter after a brave decision is
probably the rule rather than the exception. When a
field commander gives his troops the order
"Follow me!" he might be extremely
anxious or downright terrified. But he has
to project confidence and authority, or the troops
will only reluctantly do their duty without rallying
behind him. In some cases the old adage "Fake
it until you make it" is actually helpful. You
make a choice or set a goal and let people know
about it. Then just getting started leads to the discovery
of internal resources that help us go farther than
we ever thought we could.
My friend David Blaine is perhaps the best
example of an individual who has used those
internal resources to go farther than ordinary people can
imagine. A slender, soft-spoken young man, he
performs unbelievable magic with an air of
nonchalance that almost borders on lethargy. But
what sets him apart are his feats of endurance.
He has been buried alive, frozen in a
block of ice, and most recently, in May
2002, he stood on top of an eighty-foot
pole for thirty-four hours before jumping into a
pile of cardboard boxes. He has been
described as a thrill seeker, a nut case,
a guy who will do anything for publicity and money.
As someone trying to overcome the limitations of a
disability, which requires exercise and discipline,
I take exception to those who so readily dismiss
his achievements.
The truth about David is that he was pushing the
limits of his endurance long before the media had ever
heard of him; that he lived for years just above the
poverty line; and that he prepares for every "stunt"
with rigid self-discipline. He trained for the
pole for over a year, starting at twenty feet and
learning from the best Hollywood stuntmen how
to fall safely into airbags. Once he was
comfortable standing on a twenty-two-inch
platform and jumping from that height, he moved up
to forty feet and gradually worked his way up
to eighty. He never used a harness or a safety
net. Why did he do it? Because he was always
afraid of heights and wanted to free himself from that
fear.
The vast majority of people live within a comfort zone
that is relatively small. The comfort zone is
defined by fear and our perception of our limitations.
We are occasionally willing to take small steps
outside it, but few of us dare to expand it. Those
who dare sometimes fail and retreat, but many
experience the satisfaction of moving into a larger
comfort zone and the joyful anticipation of more success.
A person living with a disability may find the
courage to leave the comfort zone of his own house for the
first time. An able-bodied individual might
decide to face claustrophobia by taking up
scuba diving. Even as our country tries
to cope with terrorism, most of us know
intuitively that living in fear is not living at
all.
David's physical preparation included
daily uphill climbs on a mountain bike so
that he would have enough strength left in his legs to control
his jump off the pole at the end of thirty-four
hours. He also learned to fast for long periods of
time; in fact, he didn't eat anything during the
entire performance.
The most extraordinary use of his own
resources was the power of his mind. He used his
mind to overcome his fear of heights and to summon
the willpower to go without food. His mind kept his
body from failing. When he did jump, he
imagined that he was falling into air mattresses,
which he had done almost exclusively in
practice. The result was a perfect landing.

The victory over the ankle in 1997 was a
landmark for me. Since then I've been much less
concerned about what else could go wrong with my body.
I've also found the self-discipline to exercise
when I don't feel like it, which is extremely
important because overall health and any hope of
recovery can't be achieved without it. I've
learned to stick to a conscientious diet; keeping
my weight under control makes muscular and
cardiovascular conditioning much easier. Since
'97 my skin has stayed intact; as a result
I have the freedom to sit in my chair for
as many as fourteen to fifteen hours. In the old
days I was often limited to five or six. I have
been able to avoid many urinary tract infections and
keep the bases of my lungs functioning almost
normally.
All of that is extremely hard work, and many
times I don't succeed. Just recently I
suffered from severe bloating of my stomach and
difficulty breathing. X rays showed that huge
pockets of air had formed in my large intestine,
which was putting pressure on my diaphragm. The
remedy didn't come from the mindstbody connection;
I made changes in my diet and underwent a
procedure to clear the blockage.
Perhaps I am still in the early stages of learning
to control manifestations in my body with the power of
my mind. At this point it seems that I am able
to respond to emergencies such as the threatened
amputation of a limb. I get the sense that in time
I will discover the ability to do more. But now I'm
confident that when something comes up, when germs invade
and systems fail as they inevitably do, my mind
and body, with the assistance of medicine, will keep me
healthy and prepared for the future.

Parenting

As parents we all have different ideas of what
success means for our children. I think the most
important aspect of success has to do with
finding a real passion for something in life. It
means a responsibility to live up to one's
potential. That has to be discovered; it can't be
forced upon a youngster growing up. We cannot expect
children to be replicas of us. From the minute they
emerge from the womb they are already themselves. That must be
honored, and they must be given the tools and
opportunities to go as far as they possibly can
on their own.
--Keynote address, Brown University
Parents' Weekend, October 2001

When I was born in September 1952, my
father, Franklin, was only twenty-four. Although
our relationship was always complex--and became
increasingly complicated as I moved
into adulthood--as a youngster I delighted in the
fact that he was young too. Because he was a college
professor, first at Columbia, then at
Wesleyan and Yale, his vacations
generally coincided with ours. My brother, Ben, and
I, my half-brothers Brock and Mark, and my
half-sister, Alison, all cherished his attention
and the activities we shared with him when we were very
young.
During the Christmas holidays he taught us
to ski. He and my stepmother, Helen, bought a tiny
cottage in Ludlow, Vermont, close
to several ski areas. All five children were on the
slopes by age three and skiing on our own by four
or five. Once we were on top of the mountain we
waited together as my father stationed himself a hundred
yards below. When he was ready we skied down to him
one at a time until we were all assembled for his
review. Then he would go another hundred yards
down the slope and we would repeat the process
until we reached the bottom.
He had a special talent for communicating with
each child based on age and skill. I was the
oldest and Mark was the youngest, a difference of
nearly ten years, with the others spaced fairly
evenly in between. For all of us, a word of praise
could make our day. On the other hand, because he thought
the lift tickets (about $10) were outrageously
expensive, we had to be the first ones on the
mountain and the last to leave, which could make for a
miserable day. Once the tickets were bought we
skied, weather and snow conditions notwithstanding, with a
thirty-minute break for the bathroom and lunch.
(i don't recall any of us ever complaining about
the cold or asking to go in early for a cup of hot
chocolate.) But we all became expert
skiers; Alison qualified to be an
instructor when she was only fifteen. Today, in
our forties, we are still avid skiers (except
me) and have passed our enthusiasm on to our children.
In the springs and summers of our childhood,
Pa taught us to swim, sail, play tennis, and
paddle a canoe properly--at around nine we
all learned to execute a proper J-stroke,
which enables one person to keep the canoe going forward
in a straight line. Some of these skills were
acquired at my grandmother's lakeshore house in
the Pocono Mountains of Pennsylvania, others
on the Connecticut River and Long Island
Sound. As we grew older, we developed
special interests in addition to learning the
basics. Somehow Pa found time to work and play with
each of us individually. Ben was fascinated by all
things mechanical and electrical, so he
and my father spent hours maintaining the car, an old
secondhand Peugeot. As far as I remember,
it never went to the shop: they repaired faulty
wiring, adjusted the brakes, replaced worn
shock absorbers, and gave it routine tune-ups
as needed.
Mark liked baseball and beachcombing. He and
Pa used to sneak up into the attic, where the old
black-and-white rabbit-eared television lived in
exile, to watch the Yankees. (the TV was not
allowed in the living room as a precaution against
bad habits.) Down in the basement the two of
them created a museum where the most interesting
rocks and seashells collected on cruises from
Connecticut to Maine were on display.
Alison (always called Alya) and Brock were
very musical. Both played the piano, and Alya
played the flute as well. Pa played the
recorder. Visitors who dropped by in the
late afternoon or after dinner were often drawn into the
house by the sound of them playing together. Brock and
Alya both took riding lessons when they were still
quite young. Alya eventually lost interest, but
Brock carried on and still rides today. Although he
wasn't a rider himself, my father used to drive them
to the stables, where he watched with a critical eye
at ringside as they worked with their instructor. When
Alya dropped out and Brock progressed into show
jumping, riding became a unique part of his
relationship with our father.
My special interest was the theater. As a
youngster I did well in skiing, sailing, and
tennis. But by the time I was fourteen, I spent
my summers first in acting workshops, then as a
theater apprentice, and before long, on tour in a
play or performing as a member of a repertory
company. Pa generally liked my work. His
critique after a show was usually kind and
constructive: he was the first to point out that I often
stood onstage with my knees hyperextended, which
made me look tense and inhibited natural
movement. After a performance of The Complaisant
Lover, an obscure English drawing-room
comedy in which I attempted to play an
upper-class gentleman in his forties (i was
seventeen at the time), he approved of my accent
but pointed out that I obviously had no idea how
to smoke a cigarette, which would be second
nature for my character. However, my comic timing
received high marks.
No one in our family had ever been an
actor, which made me feel truly unique.
Pa particularly enjoyed productions in theaters
not too far from the water so he could get there on
Pandion, our twenty-six-foot Pearson
sloop. That worked out pretty well: one summer
I worked in Boston, another in Boothbay,
Maine, and one tour played in four theaters on
Cape Cod. It wasn't until I left
postgraduate studies at Juilliard and entered
the commercial world of film and television that acting
became a source of contention between us. As a pure
academic, he cherished the theater as a place for
language and ideas. He was never very interested in
film, even as an art form, and had nothing but
contempt for television (except as an outlet
for the Yankees).
I'm very grateful that he supported me as I
began to learn my trade, and that, for a time, we
shared something unique. Without his encouragement in the
early years I don't know if I would have
developed the self-confidence to attempt such a
challenging career.

My older son, Matthew, was born in
1979, when I was twenty-seven. I wanted
to be a father while I was still young so that I could be
actively and physically involved with my children for a
long time. I wanted to teach them things firsthand and
introduce them to a wide variety of
activities and subjects, and then give them the
freedom to pick and choose as they grew up.
Alexandra came along when I was thirty-one.
Then there was a long gap until Will made his
entrance in 1992, just a few months before my
fortieth birthday, when I still considered myself to be a
relatively young dad.
I started activities with all three at an
early age just as my father had done. Matthew and
Also were out on the slopes learning to snowplow by four
or five. Will started playing hockey in the living
room with the cap of an apple juice jar and a little
plastic golf club when he was two. Over time
they developed unique talents and interests that
both set them apart and bound us together. Matthew
loved tennis, fishing, and movies. Alexandra
learned to ride. During the filming of The
Remains of the Day in 1992, she and I used
to gallop across the English countryside on
magnificent hunters, courtesy of the
Duke of Beaufort. She learned to play the
bassoon when the instrument was almost bigger than she
was. We used to play duets, with me at the
piano. When we were satisfied with the sound of a
piece we would perform it for the family and add it
to our repertoire.
One of the reasons I enjoyed being a young father so
much was that I had plenty of energy and great
enthusiasm. I loved suggesting activities on
the spur of the moment. I might challenge Matthew
to a game of chess or announce that it was time
to put on boots and go for a hike. If the wind
dropped to nothing when we were sailing offshore, I
used to dive overboard and try to coax everyone
else to jump in. Matthew and Also always worried
that an unknown creature from the deep would come up
to the surface and get them. It was very hard to convince
them otherwise, especially after the day an
enormous basking shark rose to sunbathe just as I
was climbing aboard for another dive.
The list of activities we shared was long and
I tried to make our interaction a two-way
street; they might approach me or I might
approach them with ideas. And we could touch. There were
always lots of hugs, pats on the back, rides
on my shoulders, pillow fights, and games of
tag. The rituals of baths and curling up together
to read at bedtime, putting Band-Aids on both
real and imaginary wounds--all these and more helped
to give them a foundation of security, which every child
needs.
And then, in an instant, the moment my head hit
the hard ground in Culpeper, Virginia, everything
changed. Or so I believed. As I lay in bed
in the ICU, I concluded that I could no longer be
a real father to my three children. I assumed that my
new life as a quadriplegic would not only
mark the end of the life we had known, but cause
enormous psychological and emotional damage
to them as well. How could I relate to them if we
couldn't do things together? How would we adjust to the
loss of spontaneity? What kind of a father would
I be if I literally couldn't reach out to them, if
I was always going back to the hospital, if a
nurse had to be on duty 24/7?
The answers started to come within weeks of the
accident, in the summer of '95. Matthew and Also
stayed in a local hotel and visited me every day.
(will came with Dana or our nanny almost every day
as well.) I kept telling them that I was
okay, and that they should go enjoy the summer instead of
hanging around a depressing rehab center. But they
wanted to be with me. Even if they could only see
me two or three hours each visit, they
wanted to be nearby.
We spent most of the time talking. I quickly
realized that we'd never really done that before. When
Matthew and Also flew over from England to be with
Dana and me for at least a part of every vacation, I
usually picked them up at the airport in
Boston. Then it was a three-hour drive across
Massachusetts to our home in the Berkshires.
I remember listening to the radio together on one of
those trips when they were about nine and five. We
tuned in to a variety of stations that played
classical music, rock 'n' roll,
contemporary top forty, and oldies. I asked
them to identify the meter: Was the piece in
1/2, 3/bled, 4/bled, 6/8, or something
else? How would they describe the tempo of the
classical pieces: adagio, andante,
allegro, or something else? In the rock 'n'
roll and contemporary pop selections could they
distinguish between the main melody and the bridge, also
known as the middle eight? Somewhere along the Mass
Pike, Also piped up in her chirpy English
accent. "Do you know, Daddy," she said, "this is the
first time in such a long time that we've had a real
conversation about something?" I realized that she was right.
Not that we didn't talk, but usually it was while
doing something else. Now I gave them my full
attention, and I soon learned to listen more than
talk. That began a process of discovering that, in
bringing up children and relating to others, sometimes being
is more important than doing. I was also to learn
that even if you can't move, you can have a powerful
effect with what you say.
One special day in Will's life is a good
example. When he was six, he was still afraid
to ride by himself without the training wheels on his
bike. Dana spent hours killing her back as
she bent over to hold his seat as he pedaled around
timidly in front of our garage. I decided
to see if I could help. I told him to start with
his left foot on the ground and to set the right pedal
in the fully raised position. I told him
to grab the handlebars, push hard on the right pedal,
and then put his left foot on the other pedal and
keep going, being careful not to oversteer. I said if
he kept his hands steady the bike wouldn't
wobble so much. He listened carefully and got into the
ready position. Then he froze, afraid
to make that first push. I told him to take his time,
but added that I was prepared to sit in the driveway
all afternoon until he did it. I reminded him that
I would never ask him to do anything too scary or
too difficult. He didn't complain; he just
sat there for quite a long time assessing the situation.
Then I announced that on the count of three he should
start. I made it a long count, but after three I
said, "Go," and he did it. He pushed down, the
bike moved forward, he got his other foot on the
pedal, and off he went. On his first run he
made a complete circle around the driveway.
As he came past my chair the first time, his face
was a study in fierce concentration. The second time
he came by, he was smiling. For the next
fifteen minutes he kept riding around our
circular drive, gradually picking up speed.
After that he wanted to go down the steep hill toward
our mailbox, but we saved that for another day.
If someone had told me before my injury that you
could teach a kid to ride on his own just by talking
to him, I would have said that was impossible. Timing is
very important: words can only have a positive
effect on others if and when they are ready
to listen. And we have to choose our words carefully,
particularly when we are the voice of authority for
people who are vulnerable. In the first weeks after my
injury, I was like a child and the doctors seemed like
parents, while the nurses became older brothers
and sisters. I hung on every word and tried
to interpret the expressions on their faces.
Everything they said and did had an enormous
impact on me. I remembered all of it;
sometimes I replayed scenes over and over in my
head. When I was told that my spinal cord had
been severed and I would never recover any sensation
or movement below my shoulders, I was haunted
by those words for months. When I was told that was
incorrect, my spirits rose again with the possibility
that I was on the road to recovery.
The experience of feeling like a child gave me a
new perspective on being a father. I became
acutely aware that virtually everything that parents
say and do has a powerful effect on our children,
even when we think they're not paying attention. We
have to constantly monitor the level of communication
and be ready to take action if a child is tuning us out
or having difficulty expressing his or
her feelings. During Matthew's freshman year
in college we had a few awkward phone
conversations. He didn't sound like himself. Even
though he said everything was all right, I could sense that
he was telling me what he thought I wanted
to hear. I invited him to come down for the weekend just
to hang out and maybe go into the city for dinner or a
Rangers game. My real agenda was for us
to spend time alone. On Sunday afternoon we sat
together in my office for nearly four hours. I
began the conversation simply by asking him to tell me
everything that was on his mind. I told him he could
say anything and I promised not to interrupt him.
The floodgates opened, perhaps because I removed
any resistance he might have been expecting. He
covered issues ranging from problems with his
professors, other students, the challenges of
college life in general, to aspects and moments
of his childhood that he had never brought up with me
before. I was surprised by much of what he said,
particularly with regard to our relationship. I
suggested that a tendency to be too polite might
have been the source of a communications breakdown when
he and Also were young. Time and again I would ask either
one of them what they would like to do and get the same
response: "I don't mind." Often we ended
up doing what I wanted to do and they dutifully
tagged along on long bike rides, mountain
hikes, and offshore sailing in foul weather. When
I asked them if everything was okay, the usual
reply, even through their teenage years, was
"Fine."
As Matthew went on that Sunday afternoon I
realized I could have done a better job reading between
the lines. As I listened I reminded myself that
none of us has the right to refute someone else's
experience or perception. If a child says that when
a parent did X or said y it caused him
pain, the parent must not say that it isn't true.
I think we should explore what happened and try
to find out what caused that feeling. The worst thing
we can do is to say, "That's wrong, you're
exaggerating, you're rewriting history." Many
times the only thing to say, as long as we really
mean it, is "I'm sorry."
I believe that becoming a parent is a gift,
even though parenting means taking on an enormous
responsibility. It's a miracle that a child can
come into the world and instinctively give us
unconditional love. If we can
return that kind of love and provide a
nurturing environment, the responsibility
becomes less challenging. I was on my feet
when Matthew and Also were born, and thought I was
ready to be a good parent; certainly I would try
to make their childhood in some ways different than
mine. For the first two years of Will's life, all
was well. The children were thriving, and I felt the
privilege much more than the responsibility.
When I decided to live my new life, the
weight of responsibility was suddenly
overwhelming. But because all three were a vital part
of that decision, simply by showing (as Dana did)
that they loved me as much as always, I was able
to overcome feelings of guilt and inadequacy, which
actually made me a better father. I'm very
grateful for that, although I wish I could have learned
the lesson the hard way.

Religion

When I do good I feel good.
When I do bad I feel bad.

And that's my religion.
--Abraham Lincoln, 1860

During the last few years countless numbers of
people have remarked, "Your faith must be a great help
as you cope with your ordeal." Then they ask,
"What is your religion?" That used to put me
in an awkward position, because I could tell they
wanted to hear that I am a deeply religious
person. The truth is that I only found a
religion very recently that I can reconcile with a
lifelong quest for the meaning of spirituality.
Religious studies were integrated into the core
curriculum when I was in the eighth grade at
Princeton (new Jersey) Day School.
Religion was also mandatory in ninth grade; after
that it was optional. The two-year course was an
introduction to the world's religions, and the history
of those religions most closely associated with
contemporary American culture. I enjoyed
learning some of the basic precepts of Eastern
religions such as Taoism, Shintoism, and
Buddhism. I liked the idea that all living
things are sacred and that there are gods in trees,
flowers, the earth, water, and sky. But I found
many of the teachings and much of the history of
Western religions quite disturbing. In my early
teens I sang in the choir of the Presbyterian
church, and was intimidated by frightening images
projected by some of the hymns: "God the Father
Almighty"; "Onward Christian Soldiers
Marching as to War"; "the fateful lightning of His
terrible swift sword."
It seemed to me that this God probably loves
us--His children--but uses scare tactics to keep
us in line. If we are virtuous and righteous in
His eyes, we are safe. He will protect us and
deliver us from evil. But if we transgress
or simply fail to live up to His
expectations, we will be punished accordingly. That
dynamic too closely resembled my
relationship with my own father; why would I
voluntarily choose to re-create it?
Occasionally I attended Sunday school before the
main service in an attempt to broaden my
perspective and to please my stepfather, Tristam
Johnson, a lifelong member of the church.
Unfortunately I didn't learn much in
Sunday school because the teacher was former senator and
pro basketball star Bill Bradley, who was
a Princeton University undergraduate at the
time. My friends and I often went to Mr.
Bradley's home games on Saturdays and
then managed to steer the conversation away from the Bible
to basketball on Sunday mornings.
The religious studies in school, combined with a
thirteen-year-old's burgeoning desire to butt
heads with authority, continued to drive me away from
organized religion. Our class learned about
intolerance, oppression, persecution, and the
accumulation of vast wealth by the church hierarchy at
the expense of the impoverished and uneducated
faithful. We learned that religion started wars,
that the Great Crusades of the Middle Ages were
actually imperialist conquests justified in the name
of Christ. We read about sixteenth-century
explorers and missionaries to the New World who
believed it was their duty to claim as much land as
possible for their countries and to convert the
"savages" to their faith. In biology class,
we learned about birth control and family
planning; when we discussed contemporary
Catholicism in religious studies, many of us
struggled to understand it. We bombarded the teacher with
questions: How can priests be marriage counselors
if they've never been married? Since
poor Catholics in developing countries are
forbidden to use birth control, is that why they have so
many large families living in terrible conditions?
Aren't overpopulation and world hunger going to be
huge problems when we grow up?
In addition to the influences of church and school
during my formative years, my father's atheism was
an important factor. Not only did I
grow up without a foundation in religion, but I
lacked any sense of spirituality as well. I was
preoccupied by the here and now, running on ambition
and self-reliance. As I moved on to college
and then to New York in pursuit of an acting
career, I wasn't looking for answers to the Big
Questions: Why are we here? Do we have a purpose?
Is there a "right" way to live?
In the fall of 1975, I was living in my own
apartment on the Upper West Side and in
rehearsal for A Matter of Gravity, a
Broadway-bound play with Katharine Hepburn.
I had just turned twenty-two and was rather proud of
myself. And why not? I had earned a B.a. from
Cornell, been a graduate student at
Juilliard, appeared in several off-Broadway
productions, and gained notoriety as a likable
bad guy on a daytime TV series. In my
spare time I was taking flying lessons and fully
enjoying my life as a young bachelor in the Big
Apple.
One afternoon on my way to the grocery store, I
came across a young man standing next to a sign on
the sidewalk that read, FREE PERSONALITY
TEST, NO OBLIGATION. Figuring I had
nothing to lose, I followed his directions to the
sixth floor of the prewar apartment building behind
him. The door was unlocked, so I opened it and
found myself in the New York headquarters of the
Church of Scientology.
The whole place was buzzing with energy and
activity. In the main office area about thirty people
were working at their desks or gathered in small
groups, engaged in quiet but intense conversation.
They all appeared to be in their late twenties
or early thirties, ethnically diverse,
clean-cut, and neat. The men wore shirts and
ties and the women were dressed in modest skirts
or slacks. In a far corner, six
Scientologists sat facing each other in two
rows of three. None of them spoke; everyone stared
intently into the eyes of the person
opposite. They were clearly not distracted by the
ebb and flow of workers in the office behind them. I was
amazed by the apparent depth of their concentration, even
as I wondered what the purpose of staring at each
other was.
A young man much like the one I'd met on the
sidewalk, of medium height and build, wearing
a crisp white shirt and a conservative pinstriped
tie, came forward to greet me. He gave his
name, shook my hand warmly, and never broke
direct eye contact as he asked how he could
help. I told him I was interested in the free
personality test, to which he replied, "Of
course. One moment, please." He stepped
away briefly into the office area and came back
with a form for me to fill out. The next thing I
knew, I was seated at a desk in the reception
area writing down my name, address, phone
number, social security number, profession,
date of birth, mother's maiden name, and more. In
answer to the question "Are you affiliated with any other
church?" I wrote "none."
I handed back the completed form and waited while
he looked it over and conferred with several of his
colleagues in the office. They must have reached a
consensus fairly quickly because in just a few moments
he came back with another form, which turned out to be
the actual personality test. He invited me
to return to my seat and respond to all the questions
carefully, thoughtfully, and truthfully, taking as
much time as I liked. There were no right or wrong
answers.
As I looked over the test, I wished it were
multiple choice. I wasn't expecting to have
to write twenty short essays about myself. I
wondered who would grade the paper: Was there an
official tester who was solely responsible for
evaluating the personality of every passerby who
came in the door? I reminded myself that the test was
free and there was no obligation, so why not just fill
in the blanks, get the results, and make a quick
exit.
It turned out not to be quite so easy. I spent
forty-five minutes actually trying to do my very
best. When I turned the test in to my host, I
thought I had submitted quite an objective
assessment of myself. What more could I do,
especially considering that there were no right or wrong
answers?
I had hoped to get the results that
afternoon, but I was told that there wasn't enough time for them
to review my test before the office closed for the day;
I would have to come back tomorrow, but not before eleven
A.m. Luckily my call time for rehearsal
the next day wasn't until after lunch, so I was
free to return. In hindsight, I wish my
rehearsal call had been first thing in the morning.
I appeared at the church at the appropriate
time, even though I wasn't sure why.
Probably it was my competitive nature coming
to the forefront once again: I needed to know the
score. I thought I had hit a home run, so
I probably just wanted to stop by for
congratulations. Wrong. The same host greeted
me just as warmly as he had the day before. Then I was
invited to follow him. He led me down a hall
and into a plush, well-appointed private
office; this was obviously the inner sanctum of the
headquarters, suitable for the president or CEO
of a major corporation.
Before I had much time to take in my surroundings,
in came three apparently heavy hitters of the
organization. They shook my hand in turn and
introduced themselves with the warmth and direct eye
contact that I was now beginning to recognize as a
trademark of Scientology. We settled
in!comfortable chairs and then one of the senior
officials (i've forgotten his title), in a
perfectly cheerful tone of voice, gave me the
bad news. There was no score, no grade, no
quantitative measurement, just their assessment:
I was obviously deeply depressed, suffering from
low self-esteem, and carrying heavy "baggage"
around with me, not only from emotional damage in this
incarnation but from previous lives as well. His
strong recommendation--echoed by his associates,
and my host as well--was that I should begin
"training" immediately.
I've always been very vulnerable to criticism,
so what was said at that meeting had a strong effect.
Maybe my life was all an illusion and I had
no true knowledge about myself--or anything else for that
matter. I agreed to come back before rehearsal the
next day, and to begin studying Scientology with an
open mind.
The basic principles of the religion,
described in the works of its founder, L. Ron
Hubbard, struck me as logical and highly
motivating. An engineer by trade, Hubbard
viewed the human mind as a complex but
manageable computer. Every thought, every emotion, every
experience is stored in the memory banks of the
computer within us. What stops us from experiencing joy
and achieving success is that we are not "Clear":
all the negativity--self-hatred, anger,
jealousy, pessimism, feelings of inadequacy,
and the like--that remains in the computer brings us down.
Unless that negativity is "blown away" we are
"stuck," condemned to repeating the same
mistakes, falling into counterproductive
patterns of behavior and unable to find
fulfillment.
No one at the church was willing to estimate how
long it would take for me to "go Clear," but they
implied that it would require quite some time. The first
step was joining a group like the one I'd seen when
I first entered the headquarters, staring intently into the
eyes of another recruit sitting opposite
me. The objective was to empty our minds of
extraneous thoughts ("clutter") and focus all
our attention on the other person. As we became
completely absorbed in this exercise, known as
"TR-0" (training Routine Zero), we were
to lose awareness of ourselves. Whenever our own
clutter tried to come back in, we were not to be
"upset"; we were to acknowledge its return and then
command it to go away. At first this was nearly
impossible. My head was filled with nothing but
clutter, unwanted thoughts about myself, and
judgmental thoughts about my partner. Gradually I
learned--much like someone studying Transcendental
Meditation--to empty my mind. Then I was able
to share the same space with another person, not doing
anything, just existing. I have to admit that was quite a
high. I left those early sessions, which sometimes
lasted over an hour, feeling both relaxed and
energized.
The TR-0 experience was relatively
inexpensive, costing perhaps a few hundred
dollars. But the next step was "auditing," which was
outrageously expensive and would have to continue for an
unspecified length of time. The church required
a deposit of $3,000 in advance of one-on-one
meetings with an "auditor," which cost $100 an
hour. (in 1975, even the best
psychoanalysts charged about half that in private
practice.)
Having been convinced that I needed auditing, I
put down my deposit and began meeting with my
assigned auditor twice a week.
She turned out to be a very attractive
brunette about my age who had recently come
to New York from somewhere in the Midwest. She had
gone Clear and become a certified auditor in
her home state, arriving not only with these
credentials but the bright-eyed enthusiasm of a
hostess at Disneyland.
We worked together seated on opposite sides
of a wide mahogany desk. In front of her was
an "E-Meter," a simple box with a window that
contained a fluctuating needle and a card with
numbers from one to ten. Two wires running out of the
box and across the desk were attached to tin cans that
I was asked to hold, one in each hand. As my
auditor asked questions my responses would
translate into electrical impulses that flowed
through the cans and the wires, causing the needle
to move. The E-Meter was basically a crude
lie detector. Questions touching issues that needed
to be "blown away" would peg the needle at ten;
anything innocuous hardly registered. I
remember feeling a little foolish, but I had already
invested a huge amount of money so I had to give
it a chance.
One of the reasons that auditing was such a long and
expensive process for most people in training was that
we had to recall the use of almost every kind of
drug. Not just illegal substances, but
painkillers, antibiotics, routine vaccinations
such as flu shots--anything and everything stronger than
aspirin. Hubbard believed that a student could not go
Clear without completely deleting drugs from the
mind's computer. Obviously it's crucial for
anyone to kick a drug habit, but why would he
object to penicillin or a vaccination against
measles? (fortunately there was no list of
forbidden foods, and we didn't have to remember every
cigarette or sip of beer.)
My drug rundown used up four or five
sessions, and then it was on to past lives. I was
asked to go back as far as I could to try
to remember my earliest incarnation. We all
began as souls, or "Thetans," floating somewhere
in space, until we entered a body at some time
in history. Sitting across from my auditor and
holding the tin cans lightly (i had learned that
gripping them too hard caused sweaty palms and
false readings on the E-Meter), I searched
the back rooms of my mind. Nothing there.
Several minutes of agonizing silence
went by as my auditor waited patiently.
Then my growing skepticism about
Scientology and my training as an actor took
over. With my eyes closed, I gradually began
to remember details from a devastating past life
experience that had happened in ancient Greece.
I was the commander of a warship returning
victoriously to Athens after a battle in
Crete. My father was the king and I was his only
son, the sole heir to the throne. Many months
before, when my fleet cast off from the port city of
Piraeus, he had embraced me and made me
promise one thing: on our return we would set
white sails for victory, and black sails in
memoriam if I had been defeated or lost at
sea.
After our glorious triumph we departed the
coast of Crete at night, carrying our black
sails to slip away unnoticed. As a fair
wind pushed us quickly homeward, on board the
celebrations began. There was wine, music,
dancing, and tributes to the gods. I allowed the
men to eat freely; there was no more need for rationing
because we would soon be home.
On the morning of the third day we could make out
the shores of Greece and the city of Piraeus in
the distance. Lookouts on a promontory saw
our ships; messengers were sent to fetch the king.
He arrived with great fanfare within the hour, hastened
to the best vantage point, and eagerly searched the
horizon. By now the ships were in plain view, but
the sight of them was devastating to the king: they were fast
approaching Piraeus, but all were flying black
sails. Carried away by the joyous celebration of
victory on the voyage home, I had
neglected to give the order to change them. The
king, my beloved father, in despair over the loss
of his son, threw himself off the promontory into the
sea and died instantly.
The auditors are trained to listen to the students
without emotion; their job is to write down what is
said and record the indications of the needle on the
E-Meter. But I could tell that my auditor
was deeply moved by my story and trying hard
to maintain her professional demeanor. I sensed
that she was making a profound connection between guilt
over the death of my father when I was a Greek
warrior in a past life and my relationship with my
father in the present.
And that was the end of my training as a
Scientologist. My story was actually a
slightly modified account of an ancient
Greek myth: Theseus' return to his homeland
after slaying the Minotaur in Crete. According
to legend, his father, King Aegeus, was in fact so
distraught by the sight of the black sails that he
plunged to his death in the waters known ever after as
the Aegean Sea. I didn't expect my
auditor to be familiar with Greek mythology;
I was simply relying on her ability, assisted
by the E-Meter, to discern the truth. The fact that
I got away with a blatant fabrication
completely devalued my belief in the process.
Of course that was 1975, and my case may have
been an exception to the rule. Many well-known and
highly respected people credit Scientology for
success in their careers, in relationships, and
especially in their family lives. I fully
support whatever belief systems make us
better human beings. My problem has always been
with religious dogma intended to manipulate
behavior, and a claim by any religion that theirs
is the One True Way.
The end of my encounter with Scientology marked
the beginning of an ongoing search for the meaning of
spirituality in my life. It would take many years,
many well-intentioned but misguided detours, and
ultimately a near-fatal accident for me
to find the answer.

Advocacy

So many of our dreams at first seem
impossible, then they seem improbable, and then,
when we summon the will, they soon become
inevitable. If we can conquer outer space, we
should be able to conquer inner space too--the frontier
of the brain, the central nervous system, and all the
afflictions of the body that destroy so many lives and
rob our country of so much potential.
--From my speech at the Democratic
National Convention, August 1996

We cannot be a strong nation unless we are a
healthy nation.
--Franklin Delano Roosevelt,


During the summer of 1995, the doctors and
staff at the Kessler Institute in
New Jersey worked tirelessly to stabilize my
physical condition. The leader of the team was Dr.
Steven Kirshblum, one of the most dedicated and
compassionate physicians I've ever met. Every
day he was the first to arrive at the rehab center and
one of the last to leave. I especially enjoyed his
departure routine on Friday nights. An
Orthodox Jew, his faith requires him to be
home by sundown. By trial and error he had found
that if he ran at a certain pace on a dry
sidewalk he could reach his front door in seven
minutes. Rain, snow, and slippery conditions
required a slight adjustment. As far as I know
he always made it, even if it meant treating a
patient and looking at his watch at the same time.
He is very slight, only about five foot nine.
And even though he was still in his early thirties when
I was at Kessler, he always stood with his back
curved and his shoulders slouched. I told him with
mock severity that on behalf of all of us in
wheelchairs, the least he could do was stand up
straight. When someone told me that he had played
on the varsity basketball team in college at
Seton Hall, I was shocked. One more
example that nothing is impossible.
The medical issues that plagued me throughout that
summer--severe anemia, pneumonia,
infections, and skin breakdowns--were mostly under
control by mid-October. It was time to think about the
outside world. That meant modifying our home for
accessibility, responding to a barrage of
requests by the media, and defining my role as an
advocate for research and the quality of life for people
with disabilities.
Advocacy soon became my top priority.
It began with a visit from a businessman and a
scientist. Arthur Ullian, a real estate
developer from Boston, had hit a rock and
flipped over the handlebars of his bicycle, leaving
him paralyzed from the chest down. Still in his early
forties, he had already spent four years in a
wheelchair and devoted much of his time to roaming the
halls of Congress in search of any
representative who would listen to him. His mission
was "NIH times 2": he believed that because it was
classified as an "orphan condition" the National
Institutes of Health would not fund spinal cord
research adequately unless their budget was
doubled. He wanted to achieve that goal within the
next five years. With his charm and
persistence he managed to open some doors, but
came away empty-handed.
The scientist was Dr. Wise Young, who was
both young (mid-thirties) and wise (a true
pioneer in spinal cord research). In the early
eighties he was instrumental in the development of
methylprednisilone, a steroid that generally
reduces inflammation at the site of injury by about
20 percent if it is administered within the first
eight hours. In 1995 he led a team of
researchers at New York University, but he
was constantly distracted from his work by the pressing need
to obtain more funding. At the time he was one of the
few scientists who were absolutely convinced that the
damaged spinal cord could be repaired. Arthur
Ullian shared that conviction; the challenge was
to convince the government, foundations, and investors in
the private sector.
As we huddled together in a corner of the
visitors' room at Kessler, they drove
home the point that they had gone as far as they could
go. It would take the leadership of a public
figure to raise awareness and make a difference in
the lives of victims without a voice. I told
them I would learn as much as I could about the history
and the promise of research and do whatever I could
to help.
But before I could take on greater issues,
Dana and I had to cope with the realities of health
insurance. Dr. Kirshblum and the Kessler
administration decided with us that I would be discharged
on December 13. Our insurance carrier
accepted that decision but notified us that the company
would only pay for forty-eight days of nursing care
after I returned home. I was (and still am)
dependent on a ventilator 24/7 and am
unable to eat, wash, or go to the bathroom by myself.
What did they expect us to do after forty-eight
days? The company simply refused to answer the
question; we were entitled to forty-eight days, period.
We requested a backup ventilator for
obvious safety reasons, but were denied. The
case manager said that if my ventilator
failed, Dana or another family member should
use an ambu bag to keep me alive until a
replacement vent arrived from a supplier in the
town of Hawthorne, New York. (an ambu
bag is a soft plastic balloon with a fitting that
attaches to the patient's trachea; someone has
to squeeze it every five seconds to pump
air into the lungs.) Hawthorne is a
forty-five-minute drive from our home, and the
manager of the medical store lives in another
town about an hour away from there. He has the
only set of keys and is the only one
authorized to sign out equipment after hours. The
worst-case scenario would be a vent failure at
three A.m. with Will asleep upstairs. Without
a nurse on duty Dana would never be able
to leave the house overnight, which would prevent her from
going on business trips that provided much-needed
income. She would have to wake up, figure out that the
vent had failed, connect the ambu bag, and
squeeze it with one hand while trying to reach the
office manager on her cell phone with the other.
If Will, whose bedroom was directly above our
temporary quarters in the dining room, were to wake
up and cry because of all the commotion, Dana couldn't
go up to comfort him. If anything else were to go wrong
--such as an episode of dysreflexia, which can
cause a heart attack or stroke if not
treated immediately--we would be out of luck, because
Dana couldn't abandon the ambu bag. Considering
all the necessary steps, Dana would have to keep me
alive for at least three hours until I was
hooked up and breathing on a new vent.
During negotiations with our insurance carrier we
discovered the main reason patients are routinely
denied even the essentials: only 30 percent
fight back. Since 70 percent of their
policyholders are easily intimidated, there
is no upside for compliance. Moral
responsibility does not drive the insurance
industry. Threatened lawsuits are often necessary
to get results.
We didn't have to go that far. But it did take
repeated "Letters of Need" from Dr. Kirshblum
and the Kessler administration, submitted and
resubmitted for more than six weeks, before we were
finally granted round-the-clock nursing care for the
term of the policy. They never did pay for a
backup vent. We bought one ourselves for $3,500
because we could afford it. (it turned out to be a more
than worthwhile investment because the vent has failed
a number of times over the years.) But what about
others in a similar situation who simply don't
have that kind of money?
Since then we have developed an excellent
working relationship and have not had to lock horns with our
carrier. But the solution to the nursing
problem only introduced us to another one:
lifetime caps. Now we were receiving the benefits
we needed, but my care was (and still is) very
expensive. If all we had was our primary
policy, at some point we would exhaust our
coverage by reaching the lifetime cap of $1
million. After that we would be on our own.
Fortunately I am a member of three unions
--the American Federation of Television and
Radio Artists, the Screen Actors
Guild, and the Directors Guild of America
--which meant that $3 million of coverage was
available. Most people only belong to one union or
have only one privately owned policy. In the
event of a catastrophic illness or disability
they will probably reach the cap in less than
three years. After that they often have to sell their
homes or use their retirement savings to afford
quality care. If the care requirements
continue, the end of the line is placement in a
nursing home. I think most nursing homes are
merely human parking garages: patients are
maintained but there is little or no physical
therapy. The usual consequence, especially for
younger individuals who end up there, is serious
depression. I have not run through all three of my
insurance policies--yet.
My first political activity as a patient
advocate was an effort to raise lifetime caps.
Vermont senator Jim Jeffords called in
May 1997, asking me to support S$1114,
the Lifetime Cap Discrimination Act. We
held a press conference in June; then in
July, seeking a cosponsor in the House, I
wrote a letter that was copied and hand-delivered to all
436 members. It said, in part:

A million dollar policy purchased in
1970 is worth only about $100,000 today. It
is ironic that a policy meant to give
customers peace of mind is now being used to force
them out of the private insurance market. ... It
is estimated that only about 10,000 people will exceed
their lifetime cap in the next five years.
Raising lifetime caps will cause an
insignificant increase in premiums (small
businesses are exempt under this legislation). ...
More than 150 organizations support this bill,
which would raise lifetime caps from $1 million
to $10 million, to ensure that health
insurance is there when people need it most.

The bill was defeated in the Senate, 56
to 42, probably because the majority was
skeptical about the low cost of the higher
premiums. Research by the sponsors had shown that
the additional cost would fall somewhere between $9 and
$19 annually for the average company of 250
workers. Perhaps a compromise could have been
introduced that would have required employers and
employees to split the cost. I've been
assured a number of times that the issue will be
revisited, but so far nothing has come of it.
Senators Arlen Specter
(R-Pennsylvania) and Tom Harkin
(D-Iowa), longtime advocates for medical
research, rebounded quickly, taking a slightly
different approach. They introduced S$441,
the National Fund for Health Research Act.
The bill proposed taking one penny from each
dollar paid in insurance premiums, which would
result in a nearly $6 billion increase for the
National Institutes of Health. This time, I
wrote to all one hundred senators:

I firmly believe that medical research is
the key to eliminating disease, reducing human
suffering, and lowering health care costs. ... I have
spoken to executives at several insurance
companies about this bill and have been told that their
profit margin is so small that the donation of even
1% of their income is an unreasonable
hardship. I find this about as credible as the tobacco
companies' claim that nicotine is not
addictive. It is hard to sympathize with
insurance companies when you watch a mother in tears,
begging for a chair so that her quadriplegic son can
take a shower. ... The insurance companies see
this legislation as a tax. My question is: why is it
unreasonable, particularly when they would save so
much money in the long run? Research will keep the
American people healthier, resulting in fewer
insurance claims. We tax oil companies and
use the money to build and maintain highways.
Most states have sales taxes, which are a major
source of revenue for a wide variety of
programs and services that benefit the public.
Why shouldn't insurance companies be asked to help
solve the health care crisis in this country?

The Harkin-Specter bill was also defeated,
effectively ending the fund-raising aspect of
insurance reform. Advocates for disease and
disability groups returned to the campaign to double
the budget of the NIH. At the invitation of
Morton Kondracke, executive editor of the
congressional magazine Roll Call, I
spoke at a press conference in March 1998:

What we've been doing is the equivalent of
launching the space shuttle and then telling the
astronauts, "Sorry, we didn't have enough money
to fill the tank." That is the situation with the NIH
today. Only 22 percent of all grant
applications are being funded. There is a
tremendous amount of good science that is falling by the
wayside.

The next year I offered the following
testimony before Congress regarding the
president's budget request for the NIH in
fiscal year 2000:

Though our government operates on a budget
that is decided annually, our scientists cannot.
New scientific initiatives, experiments, and
laboratories across the United States, once
nurtured and financed, operate on two- and
three- and four-year plans. We must not fund
our scientists who have the potential to alleviate
enormous suffering without giving them the assurance that
we will not put on the brakes and stop the flow of
dollars that will make their progress possible.
... Without your support, spinal cord
victims will continue to sit in wheelchairs,
draining the resources of insurance companies as
well as Medicaid, Medicare, VA
hospitals, and nursing homes. With your continued
support, it is very possible that within the next
three to five years people who are now afflicted with a
wide variety of disabilities will be able
to overcome them. They will regain their rightful place
in society, rejoin the workforce, and at last be
relieved of the suffering they and their families have had
to endure. The plea for adequate funding cannot be
ignored.

In the spring of 2000, the need for increased
government funding was raised exponentially by the
promise of human embryonic stem
cells, which have the capacity to become any cell
type or tissue in the body. But researchers and
patient advocates had to curb their enthusiasm
in the face of strong opposition from political
conservatives and religious groups. The issue
became highly controversial as both sides
debated the beginning of life and the morality of
destroying embryos in order to obtain stem
cells for research. I wrote a short essay
on the subject for Time in June 2000:

It is our responsibility to do everything
possible to protect the quality of life of the
present and future generations. A critical
factor will be what we do with human embryonic
stem cells. ... They have been called "the
body's self-repair kit."
... No obstacle should stand in the way of
responsible investigation of their possibilities.
... In fertility clinics, women are given a
choice of what to do with unused fertilized
embryos: they can be discarded, donated to research,
or frozen for future use. ... But why has the
use of discarded embryos suddenly become such an
issue? Is it more ethical for a woman to donate
unused embryos that will never become human beings,
or to let them be tossed away as so much garbage
when they could help save thousands of lives?
... While we prolong the stem cell
debate, millions continue to suffer. It is time
to harness the power of government and go forward.

The ban on NIH funding of human ES
cells, which went into effect almost immediately after they were
first isolated at the University of Wisconsin
in 1998, continued. Before he left office,
President Clinton issued guidelines that were
embraced by the research community and patients
alike: he would allow the NIH to fund stem
cell research on excess embryos freely
donated from IVF (in vitro fertilization)
clinics. In May 2000, S$2015, the
Stem Cell Research Act of 2000, was
drafted for the Senate. Once again I wrote to every
member:

Testimony from experts at NIH, letters of
support from disease groups, universities,
clinicians, and foundations as well as distinguished
theologians have established beyond doubt that the
ban on federal funding for this research must be
lifted.
... If your young child or grandchild suddenly
became paralyzed because of a spinal cord injury,
or brain damaged in an accident, would you be able
to look him or her in the eye and say that research
on the best hope for recovery is, in the words of
Senator Brownback, "illegal, immoral,
and unnecessary"?

The bill remained stalled in committee and
Bill Clinton left office with the ban still in
effect. One of George W. Bush's first
actions when he became president in January
2001 was to prohibit the adoption of the Clinton
guidelines pending further review. All the
interested parties held their collective breath
while our new president considered the issue.
We watched televised coverage of his meeting
with the pope, who made it clear that the destruction
of a human embryo for any purpose violated
"the sanctity of life." The Catholic hierarchy
across the country echoed the pope's position on
behalf of 61 million Catholic voters.
Whether or not the leaders of other faiths were given
equal consideration is not clear, but many people felt it
was more than inappropriate for the president
to consult with any religious group: it was an
outright violation of the separation of church and state.
Spokesmen for the administration said that the president
was taking the time to meet with a wide variety of
professionals and lay persons on both sides
of the issue.
Finally, on August 9, 2001, the
president announced his position in a nationally
televised prime time address. He said that
sixty-four stem cell lines, derived from
excess embryos created in fertility clinics
before nine P.m. that day, would be made available
to researchers with funding from the NIH.
The new policy received decidedly mixed
reviews. The far right chastised Bush for
permitting any embryonic stem cell research,
even using embryos that had already been destroyed.
Conservatives generally agreed that Bush had given
scientists plenty to work withand were reluctantly
amenable, as long as there would be no more
government-sanctioned destruction of "life." The
consensus among both Democratic and
Republican moderates was that the
president had opened a door; the question was, had
he opened it too much or not far enough? Many
scientists were far more skeptical, especially when
additional details emerged: the great majority
of the lines either were owned by foreign countries such as
India, Australia, and Singapore, or had
already been patented by pharmaceuticals and
biotechs. They questioned what it would cost to obtain
approved cell lines and were concerned that the lines
would have no therapeutic value. Most of them had
been created by combining human cells with mouse
feeder cells. The contamination by cells from another
species might prevent FDA approval for
clinical trials. Dr. Oswald Steward,
director of the Reeve Irvine Research
Center at the University of California at
Irvine, was the first American scientist to obtain
one of the lines in a show of good faith. His
laboratory signed a contract with Geron,
Inc., a pharmaceutical company based in
Menlo Park, California. The line was given
to Dr. Steward and his team of forty-three
researchers dedicated to spinal cord repair,
with the understanding that Geron would retain the rights to the
commercialization of any FDA'-APPROVED
technology that emerged from the Irvine lab. The
first experiments were conducted in February 2002:
paralyzed rats in the acute phase of injury were
injected with the human stem cells. They all
survived, but the extent of their recovery is being
kept secret pending publication in a
scientific journal. The next experiments were
performed in April using the same technique on
rats that had been injured for three or four
months, in order to simulate the chronic phase
of injury in humans. Those results were also
withheld from the media pending peer-reviewed
publication.
My reaction to the president's decision on
August 9 was that he had created a research
project--something to keep scientists busy for a
while without causing too much controversy--instead of
creating a therapeutic project that would lead
to human trials as quickly as possible. Many
scientists and disease groups hope that, given his
overwhelming popularity, he will decide it is
politically safe to revisit the issue.
But because the current policy means that
laboratories will not receive government funding
to harvest excess embryos (which would have
been allowed under the Clinton guidelines),
scientists have had to find other ways to make
progress. The most promising development is
somatic cell nuclear transfer, also known
as nucleus transplantation or therapeutic
cloning. This is therapeutic technology that
does not require the destruction of a fertilized
embryo that could be implanted in a womb and
become a human being. Instead, scientists
remove the nucleus from an unfertilized egg and
replace it with the patient's DNA. Within a few
days, stem cells that will probably not face
rejection by the patient's immune system can be
extracted and multiplied indefinitely. Given
that we have always understood "life" to be the creation
of a union of male and female, I can understand the
moral dilemma of destroying fertilized
embryos for research. But to insist that an
unfertilized egg--which is actually just a cluster
of cells--should have the same standing and be entitled to the
same protections as a human being is beyond my
comprehension.
In August 2001 the House of
Representatives banned both therapeutic
cloning and reproductive cloning (which produced
Dolly the sheep) by a one-hundred-vote margin.
Senator Sam Brownback (R-Kansas)
introduced a Senate version of the bill that would not
only ban all cloning, but actually
criminalize it. Thus a spinal cord patient
could travel to England for therapy, then return to the
United States, walk off the airplane, and
be arrested on the spot. Senators Edward
Kennedy and Dianne Feinstein countered with a far more
rational bill, S$1758, which would criminalize
reproductive cloning but allow therapeutic
cloning to proceed, funded and regulated by the
NIH. In March 2002 I testified before the
Senate Health, Education, Labor, and Pensions
Committee, stating in part:

Any powerful new technology comes with the
potential for abuse. But when we decide that the
benefit to society is worth the risk, we
take every possible precaution and go forward. The
unfertilized eggs that will be used for nucleus
transplantation (aka therapeutic cloning) will
never leave the laboratory and will never be
implanted in a womb. But if we don't make
this research legal, if we don't use
government funding and oversight, it will happen
privately, dangerously unregulated and
uncontrolled.
Our country is about to lose its preeminence in
science and medicine. We took a giant step
backwards in the 1970's when the NIH was not
allowed to fund in vitro research until an
advisory commission could be formed to consider the
issue. In the meantime there was rapid progress
in England and the first "test tube baby" was born in
1978. For purely political reasons we
did not succeed until 1981. Now IV
clinics are commonplace; so far 177,000 children
have been conceived in 400 facilities around the
country.
Today human trials using cloned human
embryos to defeat Parkinson's are under way in
Sweden. In Israel macrophages, scavenger
cells that eat debris in the body, are being used
to repair the damaged spinal cord within two
weeks of injury. The first human subject was a
nineteen-year-old girl from Colorado. Last
week the House of Lords in the UK passed
legislation permitting research on cloned human
embryos for the second time.
Those are not rogue nations behaving
irresponsibly. They are allies, no less
moral than we are. If we act now, we still have
a chance to catch up. I urge the Senate
to defeat Senator Brownback's bill
S$1899 and pass S$1758.

When I started out as a patient advocate,
I thought the major obstacles to achieving a cure
for spinal cord injury would be a lack of funding
and a shortage of scientists willing to dedicate
their careers to an orphan condition. As it turned
out, those would not be the problems. NIH times 2
actually succeeded: in 1998 the NIH research
budget was $12 billion, but the budget for
FY 2003 is just over $27.2 billion.
Today regenerative medicine is attracting
thousands of young postdocs all over the world who
believe that effective therapies for
Parkinson's, Alzheimer's, brain injury,
stroke, MS, ALS, and other disorders of the
central nervous system can be achieved. Instead,
the main obstacle is the controversy over
embryonic stem cells and therapeutic cloning.
The NIH has not been allowed to fund
a single grant for embryonic stem cell
research using excess embryos from IVF
clinics. Because of the questionable viability of the stem
cell lines approved by President Bush, for
many months the NIH received an alarmingly low
number of grant applications, even though Health
and Human Services secretary Tommy
Thompson stated that some $15 million was
available. By May 2002 the restrictions had
eased considerably. An additional seventeen
lines had been created without mouse feeder cells
and the number of grant applications increased
dramatically, even though the issue of
therapeutic cloning remained unresolved.
I've often talked about the transition I have
to make almost every morning: I have to emerge from the
dreams in which I'm completely healthy and able to do
anything and adjust to the reality of paralysis. In
the weeks and months after my injury, that
transition was often very difficult. After a few
years it became less so, because I believed that the
scientists were progressing well, that more funding
would become available, and that the light at the end
of the tunnel would continue to shine brighter every day. I
never imagined for a moment that a heated political
debate over a clump of cells would have such an
effect on me. Now instead of waking up just
to rediscover that I'm paralyzed, I wake up
shocked by the realization that I may remain
paralyzed for a very long time, if not forever.
Once that moment passes, I begin my day.
Rationality and hope return. I'm able to focus
on what can be accomplished: through education, we can
change people's minds, even reverse the positions of
powerful political opponents. I remember
that, like it or not, my role as an advocate is
to speak on behalf of other patients who will never
be heard.
It is impossible to legislate compassion,
yet that is what is needed most. The majority of
legislators who support the most
progressive research have an emotional connection
to the issue--a parent with Parkinson's, a spouse
with Alzheimer's, or a child with juvenile
diabetes. Now we have to reach out to influential
leaders in both the public and private sectors
who are not directly affected wasdisease or
disability. We have to ask them to do something much more
difficult, but something that will make all the
difference: just imagine what it is like to be
somebody else.

Recovery

In 1913, the great Spanish neuroscientist
Santiago Ram@on y Cajal concluded a
treatise entitled Degeneration and Regeneration
of the Nervous System by declaring, "In adult
centers the nerve paths are something fixed, ended,
immutable. Everything may die, nothing may be
regenerated."

In the October 1998 issue of Brainwork,
a leading journal of neuroscience, researchers
stated, "In spinal cord injury, fatalism
is finished, replaced by the certainty that
scientists will find ways to help spinal cord
victims recover."

It began with the index finger of my left hand. I
was sitting in my office talking to Dana late
one afternoon in November 2000. I forget the
topic of our conversation, but I must have been saying
something emphatically because my fingers were moving on the
armrest as I spoke. Dana noticed and asked
me if I was doing it on purpose. I told
her that I wasn't, and she said, "Well, try."
I think if anyone else had asked me to try
to move a finger nearly five years after my
injury, I would have resisted. I don't like
to fail. The enervation necessary to move the fingers comes from
a segment of the spinal cord (T-1) far below the
level of my injury. There was no reason
to expect that signals from my brain could make their
way down the cord and cause a finger to move. But
Dana wasn't putting me on the spot; it was just
a game, and it didn't matter if I lost.
I looked at the index finger of my left hand
for quite a long time, literally trying to establish a
relationship with it. I believe that the body wants
to be whole, and I remembered the process of
healing my infected left ankle several years
earlier. Dana waited patiently, but I got
the feeling that if I didn't do something soon she
would go into the kitchen to start dinner. Staring even more
intently at my finger, I suddenly said,
"Move!" And it did. From the tip to the first
joint, it moved up and down, tapping rhythmically
on the armrest. We both watched in disbelief as
it kept going. After a few moments I
focused again and commanded, "Stop!" It did.
Dana leapt out of her chair and came over for a
closer look. We both knew I had to do it
again, perhaps several times, to prove it wasn't just a
fluke. The second time, I gave the same
instructions and got the same results. The third
time, Dana told the finger when to move and when
to stop. The fourth time, Dana gave the orders
while I kept my eyes shut. It worked again.
She held me for a long moment, and when she
pulled away her eyes were moist. We called
up Dolly Arro, our head nurse, from her station
downstairs to see if I could repeat the
demonstration for her. To put it mildly, Dolly
flipped out. She kept saying, "No way, no
way! I have to call Harlan" (dr. Harlan
Weinberg, the doctor in charge of my case).
I turned to Dana and said, "At least it's good
for a party trick."
I had to say that in order to keep everything in
perspective. I had been exercising on a
regular basis since my days as an inpatient
at Kessler in the second half of 1995.
By early July the bone graft from my hip to the
injury site at C-2 and the titanium
reinforcement wired to the base of my skull had
fully stabilized my neck. My physical
therapist, Erica Druin, started our sessions
by transferring me out of my chair onto a huge
table in the gym. I lay flat on my back on
a thick mattress with my head propped up on
triangular pillows. As soon as I was
comfortable, Erica would take the pillows away and
instruct me to move my head as far as possible from
side to side. At first I could move it about 45
degrees to the right, but only about 30 degrees
to the left because the tendon on the right side of my
neck is shorter than the other--Dr. Jane had
had to cut it to gain access to the cord. While that
movement may not sound like much, it was a sign of
real progress: I no longer had to wear the
dreaded cervical collar and was actually being
challenged to turn my head with maximum effort.
We always did at least three sets of twenty
repetitions of the side-to-side motion, adding more
when I wasn't too tired. Then we introduced
sets of raising my head off the mattress and
easing it down again. At first I could only muster
the strength to lift my head up a few inches. But
before long, with Erica's encouragement, I
could raise it high enough to see my feet and hold it
in that position for a very painful but highly satisfying
thirty seconds. With daily repetition my
neck regained lost muscle mass and
flexibility.
We moved on to shoulders. I was already able
to move them a little when I arrived at Kessler.
Erica worked with me, both in the chair and on the
mat table, by pushing my shoulders down and then
applying resistance as I strained to lift them up
again. The left side was decidedly weaker than the
right, so she moved our sessions to the biofeedback
department. I parked my chair in front of a
computer screen; electrodes placed on the
trapezius muscles of the shoulders provided a
real-time readout in the form of a graph as I
exercised. The right shoulder excursion was about 50
percent of normal, but the movement of the left
peaked at a pitiful 10 to 15 percent. I
told Erica that was unacceptable, which played right
into her approach to my physical therapy: show a
Type A personality a display of his
achievement (or lack thereof) and you can harness his
competitive nature to motivate improvement.
The theory behind the motor deficit on the left
side was that I had a case of Brown-S@equard
syndrome, a common outcome of spinal cord
injury, which causes greater functional recovery
on one side of the body and greater sensory
recovery on the other. Erica and I had decided
to ignore that diagnosis, just as I had decided
to ignore the opinion of experts who declared that I
would never regain any functional or sensory
recovery whatsoever. During the ensuing months at
Kessler I spent hours in front of that screen
working on my left shoulder. By the time I was
discharged in December the right was up to 60 percent
of normal and its weaker brother had improved
to 40 percent.
Considering that only a few individuals with
injuries just centimeters below the brain stem live
long enough to go to a rehab center, I'm extremely
grateful that I ended up in the hands of Erica and
Dr. Kirshblum. Instead of relegating me to the
ranks of hopeless cases, they optimized my
care, using me as a test case to see what a
C-2 vent-dependent quadriplegic could
accomplish. They continued to work on strength and
mobility in my neck and shoulders, but soon added
proactive therapies usually reserved
for patients with lower-level injuries.
The first was functional electrical stimulation
(Fes). Its purpose is to prevent muscle
atrophy and to maintain good circulation. In
1995 FES was still considered experimental, even
though there was no danger to the patient and the benefits
seemed to be more than obvious. The technology
is simple: electrodes are placed on
targeted muscle groups with wires that connect to a
box, about the size of a laptop, called the
E-Stim. The therapist sets the electrical
stimulation parameters based on the patient's
size and physical condition. The electrodes
are rotated every session, just as an athlete
rotates exercises in the gym. All that was
available at Kessler was a pair of pants with the
electrodes sewn in, so I was only able
to stim my legs once or twice a week. It
was fairly primitive by contemporary standards, but
it was a good start.
The next proactive therapies introduced in
rehab were a stationary FES bicycle and a tilt
table. For the FES bike, I wore a pair of
shorts and individual electrodes were placed
on the quadriceps and hamstrings. The current from
the E-Stim machine caused those muscles
to fire, enabling the legs to push the pedals of the
bike. In the early sessions I could only reach
the desired goal of 45 rpm for a few minutes.
Eventually I was able to keep up that pace for
thirty minutes nonstop, which gave me the added
benefit of a good cardiovascular workout; usually
my heart rate would increase by as much as forty
beats per minute.
The tilt table is for weight bearing and
maintaining bone density. Patients are
transferred from their wheelchairs onto a
special table while it is in a horizontal
position and secured with straps around the knees,
waist, and chest. Then the table is manually
cranked up according to the patient's level of
tolerance. (it requires many attempts
to achieve the full upright position because the
transition from lying flat to standing causes a
rapid drop in blood pressure.) Putting a
C-2 quadriplegic on a tilt table with the
goal of having his entire weight supported
by his legs and feet is extremely
proactive.
The tilt table experience gave me a
tremendous psychological boost. It meant that
Erica as a therapist and Kessler as an
institution believed it was worth preparing me for the
possibility of walking again someday. After three
weeks of trying, I was able to stand at 90
degrees. For the first time since my injury, I was
six foot four again. Dana used to stand on the
footrest of the table and lean against me with her head
on my shoulder, just like the old days.
Unfortunately for most patients, the end of
rehab means the end of therapy. Tilt tables,
FES bikes, and E-Stim are all
extremely expensive because the market for them is
relatively small. Insurance companies
won't pay for the patient to use them at home and
they usually won't reimburse rehab
facilities that would like to use them for outpatients.
I was extremely fortunate to be able to purchase
some of that equipment, and some of it was donated by the
manufacturers. Even as I turned my
attention to directing (In the Gloaming,
1996-97), acting (Rear Window, 1998),
writing (Still Me, 1997-98), and advocacy
(endless), I was able to maintain a regimen of
exercise at the same time.
Except for the movement of my neck and
shoulders, which is entirely voluntary (because the
enervation is above the level of my injury), any
other movement has been involuntary, requiring
mechanical or electrical assistance. That's
why the discovery that I could move my left index
finger on command was such a momentous event.
In late November 2000 I traveled
to New Orleans to give the keynote speech at
the annual Symposium of Neuroscientists.
Among those in attendance was Dr. John
McDonald. At the time he had recently
completed his postdoctoral studies in St.
Louis with Dennis Choi, M.d., Ph.d.,
one of the world's leading researchers and one of the nine
members of the consortium funded by the Christopher
Reeve Paralysis Foundation. His original
plan after graduating from medical school was
to become a neuroscientist specializing in
strokes. Apparently my injury caused him
to choose a different path. We had met in the
spring of 1999, when I spoke at a
fund-raiser for the Barnes Jewish Hospital
in St. Louis. Although he was only thirty-four
years old, slightly stocky, with a
boyish face and a carefully coiffed hairstyle
reminiscent of early Robert Redford, it was
immediately apparent that Dr. McDonald had
acquired a vast knowledge of the spinal cord in a short
period of time.
He came into the room set aside for me as
I was preparing to join the neuroscientists at the
obligatory cocktail party. We chatted for a
few moments and then he asked me if there was
anything new. I told him that I was doing
pretty well, that I didn't have any infections
at the moment, and that I was breathing without the
ventilator for longer periods of time. Then I
told him there was one specific improvement that
he might find interesting and showed him the voluntary
movement of my finger.
I don't think he would have been more astonished
if I had just walked on water. It took him a
moment to recover, but when he did he practically
ordered me to perform the movement inside an
MRI. The purpose would be to establish which part of
my brain was sending signals down the cord, out
into the peripheral nervous system and into a small
subset of muscles in my left hand. Diana
De Rosa, our coordinator of travel and
logistics, reminded me that I was scheduled
to appear at another fund-raiser in St. Louis
on November 19. I was supposed to fly
home the next morning, but there was no reason not
to postpone the departure if the MRI at
Washington University was available. Dr.
McDonald said that it would be, even if he had
to drag another patient out of it by the heels.
And so began an extraordinary collaboration
that continues to this day. I gave my speech on
Sunday night and was over at the MRI facility
by eleven o'clock on Monday. There I was
introduced to Dr. Maurizio Corbetta,
assistant professor of anatomy and
neurology at Washington University, trained
in Milan but establishing his career in the United
States. A contemporary of John's, he was
already a recognized expert in MRI
radiology at the time of our first meeting. After the
introductions to his associates and staff, he
pulled up a chair and told me what would happen
in the MRI. First they would map my brain at
rest; then they would ask me to move my tongue from
side to side on command; finally I would see a
flashing green light, the signal to move
my finger as much as I could. He asked to see what
that would look like, so I performed my "party trick"
once again. As soon as he saw the finger move
he hurried out of the room with his whole team in hot
pursuit.
I found out later that Dr. Corbetta was so
skeptical about voluntary movement that he
hadn't even bothered to turn on the MRI before I
arrived. The instructions were actually a test to see
whether it was worth the time and expense of firing up
the equipment. Just as there was virtually no information
in the Spinal Cord Manual for patients
with injuries above C-4, there was apparently no
precedent for recovery of function five years
after the initial trauma. The common wisdom was that
whatever recovery was possible would occur within the first
six months, although there were several isolated
cases of limited additional recovery two
years postinjury. Five years was simply out
of the question.
The MRI session lasted a little more than three
hours. At the time I thought my greatest
accomplishment was that I didn't have to be sedated.
(in 1995 I made many trips down that long,
claustrophobic tunnel; my greatest anxiety
was air hunger, because the hose connecting me to the
ventilator had to be lengthened by as much as fifteen
feet. Usually I needed supplemental oxygen
and tranquilizers.) The reason for the tongue
movement was to map normal brain activity above
the level of the injury, which could then be compared to the
brain activity triggering motion far below it.
While we waited for the results, John and his
assistant Linda Schultz came back to the
hotel with me, Dolly, Diana, and our aide,
Chris Fantini, for an early dinner. I thought
I was done for the day, but John had other ideas.
As I tipped back in my chair to relax, he
came over and said, "Let's see you move your
other fingers." I decided that my thumb might be
the most likely candidate so I focused all
my attention on it, trying to make the same
connection that I had established with my index finger.
After a few moments of concentration I silently
ordered my thumb to move. It did. First there was
a flicker, and then with repetition the movement
became increasingly obvious. John asked me
to move the thumb and forefinger simultaneously.
Both digits immediately did as they were told. (a
quick thought flashed across my mind--was this
happening because I had been an actor for
twenty-eight years and now it was "showtime"?)
John asked me to move the other fingers of my
left hand, first in order and then randomly in rapid
succession. I have no idea how or why they all
responded. But considering the fact that none of them
(except the forefinger) had moved voluntarily in
more than five years, they put on quite a show. Now
that we were on a roll John asked me to move the
fingers of my right hand. The result? Complete
failure. Not one of them would budge. Feeling
my frustration, he told me to forget about it and
raise my whole hand instead. (only John
MacDonald would choose that moment to move on
to a much more difficult task.) He supported
my arm above the armrest of my chair and let the
wrist relax with the fingers pointing downward. On his
command I tried to lift my right hand, something I had
never even considered attempting before that moment. I
could feel my whole arm tightening inside and a
burning sensation from the shoulder down as I strained
to make my hand move. My mind wandered back
to my weight training for Superman, when I could
bench-press more than my own weight. Now I was
using the same amount of effort to pick up my
wrist. How pathetic. I told myself that wasn't
fair--everything's relative. Back to work.
Nothing is impossible. No reason why my hand
should come up, but no reason why it shouldn't, either.
The others came over to cheer me on. Now I
had an audience, which was probably just what I
needed. I gave it everything I had. My fingers
started twitching, which meant that signals from the brain
were getting through. Then, in agonizing slow motion,
my wrist started to move and the hand rose up. It
stopped in the level position (which I thought was
amazing) but the crowd wanted more. John and Linda
encouraged me; Diana, Dolly, and Chris
resorted to threats, the worst being no dinner and a
labor strike, which would mean spending the night
sleeping in my wheelchair. That did it. I was
laughing and struggling at the same time, but I finally
managed to bend my wrist and raise my right hand
all the way up.
Then, as we were eating dinner and I was indulging
in a celebratory glass of red wine, the phone
rang. It was Dr. Corbetta reporting on the
preliminary results from the MRI: the
electrical impulses commanding both the tongue
movement and the finger movement came from the
correct part of the motor cortex in the brain.
This finding was also completely unexpected, because the
conventional wisdom was that after a severe trauma
to the central nervous system the brain would have to find
alternate ways to communicate with the body below the
level of injury. Many spinal cord patients
have had the frustrating experience of wanting to move
a leg, but getting shoulder movement instead. Often
it takes months and even years of rehab to learn
to compensate for the brain's tendency to give
inappropriate commands after injury. An
appropriate cause-and-effect relationship between
the motor cortex and a targeted movement was
decidedly "out of the box."
Because there had been no medical intervention,
Dr. McDonald put forward the theory that the
new movements were the result of regular
physical exercise. Perhaps
"activity-dependent training," the official term
for my workout regimen, had awakened dormant
pathways in the spinal cord or caused some
small amount of regeneration. We agreed
to undertake an official study with a patient
population of one. My job was to maintain and
document regular exercise; his was to quantify and
verify my progress using accepted scientific
methods.
On December 10, John and Linda
traveled to our home in Westchester County,
north of New York City. The first order of
business was a complete ASIA examination,
conducted at my bedside. This is a test,
devised by the American Spinal Cord Injury
Association, used by physicians to assess
sensation and motor function. The sensory testing
is done with a Q-tip and a safety pin. The
patient is asked to close his eyes and feel the
soft brush of the Q-tip on his face. With that
sensation established as 100 percent normal, the
physician moves down the body and applies the
same gentle touch at random. The patient is
asked to describe exactly where the Q-tip is
and give a percentage score in comparison to the
sensation on his face. Each answer is graded from
0 to 5, with 5 representing full sensation and
accuracy of location. The safety pin is
applied in the same way, but the test is even more
difficult because the examiner uses both the sharp and
dull ends and the patient is asked to discern the
difference.
The motor function test is another
head-to-toe assessment with the patient still in bed.
There is a checklist of prescribed voluntary
movements, measurements of the effort required
to move parts of the body against resistance, and an
evaluation of synapse time--the time it takes
to initiate movement when the patient says "G."
After we finished the official ASIA exam,
John handed the forms to Linda and took out his
video recorder. He wanted me to repeat the
movements I had demonstrated in St. Louis a
mere three weeks earlier. This time I was ahead
of him. Expecting that he would want to see
improvement, even in such a short time, I had
been practicing almost daily. Under the scrutiny
of the video recorder's blinking red eye, I
moved the thumb and index finger of my left hand.
This time the movements were greater and I could initiate
them much faster. I was able to raise my right hand as
before, but now I could flex it in one smooth motion
that took less than ten seconds. When John
or Dolly pressed a hand against the ball of my
left foot, I could push it away. I was able
to move individual toes on both feet. I
hadn't worked on my toes before, so I was thrilled
to meet the challenge of this surprise request.
The most impressive movement, according to John, was
a demonstration of sphincter control--not normally
something I would brag about, but extremely
significant in my condition because the enervation comes
from the lowest segment of the spinal cord. If you can
contract the sphincter on command it positively
proves that there are intact, functioning pathways
all the way from the brain to the bottom of the cord.
The ASIA scale ranges from A to E:
A represents virtually no movement or
sensation, while E is the classification for a
score of 100 percent in both areas. My first
ASIA exam was conducted at Kessler on
July 5 and 6, 1995. In the categories
of Motor Function, Light Touch, and Pin
Prick, I scored 2 percent, 8 percent, and
6 percent, respectively, which made me an
ASIA A. Now, on the ASIA exam
conducted by John McDonald six and a half
years later, I scored 10 percent on
Motor Function, an incredible 56 percent on
Light Touch, and a significant improvement
on Pin Prick, up to 22 percent.
John used every superlative in the
book when he showed me the scores. He was the
proverbial kid in a candy store, a
four-year-old on Christmas morning. I
appreciated his enthusiasm and was gratified
to learn that my daily regimen had been
worthwhile. He left on cloud nine, but I was
left to face the reality that nothing in my everyday
life had changed. I had graduated to ASIA
B, but I was still in the same chair, still on the
same vent, still requiring professional care
24/7. I took some consolation in the fact that
I was recovering and that I had just scored a major
upset in the world of science and medicine. At the
same time I felt bad for people with degenerative
diseases such as ALS, multiple sclerosis, and
muscular dystrophy. What could exercise do for
them? Just like victims of Parkinson's,
Alzheimer's, diabetes, and so many other
diseases, they need scientific research as much as
I do. We discussed our priorities internally
at the CRPF and decided that funding cutting-edge
research would remain our primary mission; at the
same time we voted to allocate more money for
quality-of-life grants. On May 3,
2002, we opened the Christopher and Dana
Reeve Paralysis Resource Center
to provide critical information and support for
victims and their families suddenly facing
paralysis.
I followed Dr. McDonald's instructions
to keep exercising and trying to make my body
move. The exercise was carefully regulated, but
it was left up to me to experiment with movement.
John's advice was to try anything, because that was the
only way to find out which pathways were still intact and
to see if others could be reawakened. Fortunately
Chris Fantini had just completed his training and was
now a licensed physical therapist. We worked
together to create a protocol that would test enervation and
muscle strength in every area.
Because I had spent years riding the FES
bicycle on a fairly regular basis, we
decided to see if I could create spontaneous
movement in either leg. As I lay flat Chris
would place my foot on his right shoulder and then
push my leg forward until it was bent 90
degrees at the knee. I would say "g" to let
him know that my brain was issuing a command, and then
push as hard as I could to straighten out the leg. The
first few times nothing happened. Saying
"g" to my leg was about as productive as saying
"drop" to Chamois when she fetched a tennis
ball. Repetition was the key: during the fourth
or fifth attempt I could see the quads in my
right leg start to flicker and Chris could feel my
foot pushing against his shoulder. Soon the left
leg followed suit and Chris had to lean against my
feet, providing resistance to make the exercise
more difficult as the movements grew stronger.
Building on my ability to flex my right
wrist, we moved on to the forearm. Chris or one
of the other aides who had been taught the routines
placed my forearm across my chest, supporting the
weight of the arm with an open palm under the elbow.
The task was to fully extend the forearm, using my
triceps and forearm extensors. Strength was not an
issue, thanks again to regular E-Stim of my
arms over a long period of time. The challenge was
to establish the same connection that made it possible
to move one finger with signals originating from the
correct part of the motor cortex. As I began
to experiment with movement, the problem was overflow:
muscles would fire in irrelevant areas.
Biceps and deltoids might kick in when I
only wanted activation in the triceps. But I
knew that overflow could be controlled with practice;
it was a much more tractable condition than minimal
movement or none at all.
Forearm extension from placement across the chest was a
routine maneuver in the range-of-motion
protocol dating back to rehab in 1995. My
body and mind were well accustomed to somebody else
moving my arm for me. Now we were attempting
to harness strength, habit, and willpower to move it
on my own. It only took about a week
to discover that when I sharpened my mental focus--
in this case trying to concentrate only on my
triceps--the overflow subsided. Now I was able
to extend the forearm, tenuously at first, but then with more
speed and assurance. Within a month the synapse
time to initiate movement in both forearms and both
legs was practically instantaneous--a sure
sign that just like the index finger, the signals were coming
from the correct part of the motor cortex.
By January 2001, I was spending as much as
three to four hours a day on physical therapy.
We would work the lower body one day, the upper
body the next, combining E-Stim, the FES
bike, and voluntary motion against resistance. The
forearm extensions had led to gaining the
ability to fully extend both arms and raise them
up like wings. Then I learned to start with my arms
fully opened horizontally and bring them down
to rest at my side. I could do this one at a time
or simultaneously, with an aide giving light
support at the wrists and elbows.
One day I decided to see if I could sit
up by myself out of the wheelchair. Again, there was no
reason to assume I could do that, but no reason
to assume I couldn't. (i had been using the
E-Stim on my abdominal and paraspinal
muscles as part of my regular routine.)
Dolly and Chris positioned the chair next to the
tilt table and transferred me onto the edge.
Chris stood behind the table in case I fell
backward, while Dolly covered the front. I
asked her to plant my feet the width of my
shoulders to give me a base of support, and I
asked Chris to pull my upper body fully
upright, making sure that I wasn't leaning left
or right. Then I asked them both to let go.
Nothing happened, which (for once) was exactly the
desired outcome. I just sat there. All the other
exercises required strenuous effort; sitting
upright on my own required me to relax and allow
the continuous, subtle interactions of nerves and
muscles to create balance. When I started
to fade to the right or the left, I commanded the
muscles on the opposing side to compensate and
bring me back to center. I was overjoyed to find that
sitting on my own wasn't very difficult. I
reflected on the fact that balance is natural,
it's where the body wants to be. Maybe after all
these years it still remembers. That's why
practically anybody can get on a bicycle
after twenty years and pedal away.
I closed my eyes, just as an experiment. I
didn't know if visual reference was necessary to keep
me upright. Once again, nothing happened. For
nearly five minutes I remained motionless, and
then I started to slump forward as fatigue set
in. My head, which weighs about twenty-six
pounds, was the first to go and then my upper body
followed. But I had been sitting virtually
untouched for more than half an hour.
Today I look back at that experience as one
of the three most significant milestones in my
history as a spinal cord patient. The first was
discovering that my injury was not complete; the second
was finding out that I could breathe on my own,
if only for short periods of time. The ability
to initiate movement far below the level of my
injury and simply to sit with little or no assistance
meant there was even more reason to hope.
I went back to St. Louis in February for
another round of testing and evaluation. The
functional MRI showed that all the movements I
had acquired since the last visit were also being
directed by the correct part of the motor cortex,
with some recruitment from the opposite hemisphere
of the brain. The ASIA exam was a great
success: because my motor and sensory scores had
improved dramatically, I was reclassified as
an ASIA C. Dr. McDonald was again
ecstatic, describing these results as "history
in the making." I was encouraged by the thought that since
my improvement was the result of exercise, it
might translate into insurance companies paying for
equipment that could help other patients recover enough
function to return to work or school. Wouldn't it
be more profitable to give patients who meet
certain criteria the tools and training they need
to get better and go away?
Proof of that principle had already been
convincingly demonstrated by Dr. Reggie
Edgerton at UCLA. Guided by the theory that it
doesn't take much brain activity to walk, he
experimented with paraplegics who had control of their
upper body but were paralyzed from the waist down.
He placed these patients on a treadmill,
flipped the switch, and their legs responded as the
machine went into motion. At first they needed the
assistance of several physical therapists
to place the feet correctly and to avoid
sprained or broken ankles. Gradually Dr.
Edgerton and his team found that if the average
patient stepped on the treadmill an hour a day
for approximately sixty days, he or she would
then be able to walk over ground on their own assisted
only by a cane. When I visited his lab I
saw an eighteen-year-old paraplegic who had
completed the training get out of a chair by himself,
walk quite normally across the room, sit down in
another chair, then get up again, still completely
unassisted, and walk back to his original
seat. Technically speaking he was not cured, but because
of this specialized activity-dependent training,
he had achieved extraordinary functional
recovery. He is no longer a burden to his
insurance company. In my case it was
obvious that hard exercise was keeping me out of the
hospital, but I still wondered how and when it would
significantly change my life.
'In the following paragraph,
(2) represents subscript 2.'
I returned home and intensified my workouts.
I rode for longer periods of time on the bike,
increased the repetitions of my voluntary
movements, and raised the voltage on the
E-Stim machine. I put more time and effort
into breathing on my own, trying to develop enough
strength in my diaphragm to eventually wean myself
off the ventilator. Professors Daniel
Martin and Paul Davenport from the University
of Florida at Gainesville introduced a
novel theory. During exercise, carbon
dioxide builds up in the body. That triggers
a demand for more oxygen, and the average person
responds by breathing faster. Their approach (which
they had successfully demonstrated in rats) is
to reduce the amount of air pumped into the patient
by the ventilator during exercise and let the
level of CO(2) rise as high as the patient
can tolerate. With enough repetition, as the patient
is suffering the equivalent of pulling six g's
in a jet fighter, the brain stem should get the
message and kick-start autonomic breathing. The
normal range of CO(2) in the bloodstream
of a person at rest is anywhere between 35 and 45
percent. When I started using their weaning method
my CO(2) was a feeble 25 percent. By May
2002 my resting percentage was up to 34
percent, and when I was on the bike I could endure
levels of 47 to 49 percent for as long as
forty-five minutes. Autonomic breathing
hasn't happened yet, but I'm still trying.
July 8, 2001, was another watershed moment
--literally. I was in St. Louis again for more testing
and John decided it was time to throw me in the
pool. Of course he didn't actually throw
me, but it was an "out of the box" experience both for
me and for his staff of physical therapists. No
patient had ever gone into the pool while attached
to a ventilator. Most rehab facilities
wouldn't even consider aquatherapy for a
vent-dependent quadriplegic. What if water
gets into the hose? What if the ventilator
falls into the pool? John's answer: somebody
with an IQ above double digits holds on to the
vent, and two or three others keep the hose out
of the water.
Soon I was floating on my back for the first
time in six years, with just a collar around my neck
and an inflatable belt around my waist. I
relaxed completely and reveled in the sensation of the
warm water all around me. A therapist held my
shoulders and gently made my body "snake" from
side to side. I watched my feet, which now
seemed far away, swishing back and forth. I had
the sense that my body was actually lengthening as the
vertebrae were relieved of the compression they have
to withstand when I sit in my wheelchair.
After ten minutes of sheer bliss they put me
to work. I had to perform every movement I could do on
land, and then some. Suddenly a therapist said, "How
about standing?" I could tell that the only acceptable
answer was "Sure." The next moment many hands were
holding me upright. Someone put rubber boots on
my feet and secured five-pound weights around
my ankles. I was asked to bend my knees and
let my body down until the water level was just
below my trachea. The next move would be to push with
my legs and stand. I focused on my quads,
once again making the connection that had by now become
an integral part of my life. When I was ready
I gave myself a silent "G." The muscles
fired and I shot straight up. Suddenly I was
towering above everyone around me. John, Linda,
Dolly, a documentary film crew, and various
onlookers applauded and cheered as if they were
watching a moon launch.
But there was more to come. Now that I was standing, of
course the next thing to do was walk. I had taken
steps on Dr. Edgerton's treadmill before, but
there my body was suspended by a harness and the motion
of the treadmill made my legs move. This was
completely different. For the first time I was actually
being asked to initiate walking on my own.
The helping hands still held me upright. As I
shifted my entire weight onto my right leg a
therapist told me to look at my left foot and
kick it forward. That was not much different from pushing
my leg forward, which I had done hundreds of times
against Chris Fantini's shoulder. I kicked
hard from my left knee and suddenly saw that my
left foot was now ahead of me, a few inches
above the bottom of the pool. Another therapist
told me to push off my right leg and transfer my
weight to the left. It worked. (one small step
for man, et cetera ...) Then we repeated the
process, kicking the right foot forward and shifting
weight to take another step. In that first
attempt I took eight steps before I reached the
end of the hose and had to be floated back to home
base. As we continued my body seemed
to remember what to do. The leg thrust and weight
transfer became easier and looked more normal.
By the end of the session I had walked in water
eight times.
By September 2001 my exercise program
included weekly aquatherapy at the Gaylord
rehab facility in nearby Connecticut. The
first six sessions were supervised by their physical
therapists and then I was allowed to use the pool with
two nurses and two aides from our team. The
two hours set aside for me on Friday afternoons
soon became a precious reward, an eagerly
anticipated treat at the end of the week. We
don't have enough people to help me walk, but we still do
most of the other exercises. Some days are better
than others, usually depending on how well I
sleep the night before, but the overall progress
has been extremely gratifying.
The payoff came on January 20, 2002,
when I traveled to St. Louis once again for the
assessment that would complete the study. The
evaluation took three days. In addition to the
usual physical exam, the ASIA exam, and
another three-hour session in the MRI, John
and his team measured all the muscle activity,
including the diaphragm, with an
electromyogram (Emg). I felt like a
giant pincushion, but I knew that the EMG
needles would give a more accurate reading of
synapse time and the degree of enervation needed
to create movement.
Fortunately for all concerned, I hit a
home run. The Motor Function score went
up from 11 to 20, Light Touch jumped from 57
to 78, and the Pin Prick total soared to 56 from
a previous high of 22. Now John had
accumulated enough data to publish a scientific
article demonstrating that activity-dependent
training promotes functional recovery in
chronic spinal cord injury. He said the test
had to be so thorough and repeated over a long
period of time (almost two years) because thirty
neuroscientists could stand at the bedside, watch
me move, and still say it wasn't happening. The
article would be certain to cause controversy. We
hoped it would also cause rehab facilities and
neuroscientists (as well as insurance
companies) to look at physical therapy in a
new way. Perhaps the aggressive approach that had
led to significant improvement in my case would
now be used to treat not only other spinal cord
patients, but victims of strokes, MS, and
other central nervous system disorders as well.

Faith

Universalists believe that God is too good
to damn people, and the Unitarians believe that people are
too good to be damned by God. ...
Universalists believe in a God who
embraces everyone, and this is central to their
belief that lasting truth is found in all
religions, and that dignity and worth is innate
to all people regardless of sex, color, race, or
class.
--Minister Thomas Starr King, can. 1800

... And we are willing to make public, as
part of our religious practice, what we
believe--that the human family is one, and that the
love that binds us is greater than the fears that
divide us.
--Barbara J. Pescan

After my encounter with Scientology I moved
on in my search to discover the relevance of
spirituality. But during the next twenty years,
culminating with my injury in 1995, I tended
to focus on the Big Questions only when I was not
preoccupied with activities and issues of the
moment. Others tried to impose their beliefs on
me: the Scientologists begged me to return, and
my acting coach in the eighties wanted me
to become a follower of the Buddhist leader Baba
Muktananda. During the Superman years I
received hundreds of letters from fans explaining that
Jor-el is God and his son Kal-el
(superman) is Christ, sent from Krypton
to be raised by a humble family in Kansas before
beginning his mission to save the world. I could
appreciate the obvious parallel, and I did
consider Superman to be a significant
mythical icon in popular culture. But if
religious individuals saw Superman as
Christ, and identified me as Superman, then
what? How did I ascend from working New York
actor to present-day Messiah?
In 1987, Gae Exton and I went our
separate ways. Our relationship had been
tenuous for some time. I returned to New York
in early February as soon as I finished
filming Superman IV, leaving Matthew
(seven) and Alexandra (three) behind. The separation
was amicable and we readily agreed to put the best
interests of the children above all else: joint
custody, British and American citizenship,
and mutual consent on all important
decisions. Still, I was nearly overcome with
guilt. As a child of divorce myself, I could
only hope that they wouldn't have as hard a time as I
did.
Now that I was living three thousand miles
away, I needed to find ways to ease the pain and
to remain a strong presence in their lives. In
late February I hosted a documentary on the
future of flight, which was filmed at the Air and
Space Museum in Washington. I kept a
video recorder with me and made tapes of myself
next to the Spirit of St. Louis, at the
Washington Monument and the Jefferson
Memorial. I even included a drive-by
glimpse of the White House. Back in New
York I taped kids in the park where we had
played countless games of hide-and-seek; I
went to the corner deli to tape greetings from the
man who used to give Matthew a banana when I
got my morning coffee; from the roof of our apartment
I took shots of the Museum of Natural
History across the street, our second home on
rainy days. At the end of the video I looked
into the camera and told them we'd see each other very
soon.
I did my best to sound positive and cheerful,
but even as I dropped the tape off at the post
office, I wasn't sure if I'd been able
to mask the pain. I needed a real distraction,
anything that would make me feel better. Drugs
and alcohol were out of the question; I didn't want
to escape reality by making myself less conscious.
Flipping through my mail as I walked back from
the post office, I came across a brochure for
"Loving Relationships Training." I gathered from
the material that their mission was to help people find
happiness by learning to love anyone and everyone we
meet on life's path. Weekend seminars,
open to newcomers and graduates alike, were
held several times a year in cities
around the world. The next one in New York was
only two weeks away. I decided that was more
than a coincidence; maybe I was meant to find out
about this source of spiritual healing at one of the lowest
points of my life.
I reserved a place and showed up at a
midtown hotel on Friday afternoon to begin my
weekend of LETTERT. At the registrar's desk
I filled out forms that included complete
confidentiality and handed over a check for
$1,500. Then I found myself in one of the
ballrooms of the hotel, seated among three
hundred others waiting patiently for the seminar
to begin. I looked around and saw apparently
normal people of all ages and descriptions. At
least no one seemed tense or semirobotic, a
marked contrast to many of the Scientologists in
1975.
Soon a side door opened and the leaders joined
us--a man and a woman in their early forties, both
fit and attractive in a well-tailored suit
and a colorful designer dress. There were no
workbooks, no videos, no E-Meters or
personality tests. They simply began talking,
taking turns as they addressed us. Although they must
have delivered the same message many times before, they
didn't sound rehearsed and I didn't feel that
I was attending a lecture. They were relaxed,
warm, and intimate in front of such a large
gathering; if you've ever heard Deepak Chopra
speak you get the idea.
They began by going into more detail about LETTERT as
a basis for living, and then explained how we would
spend much of the weekend in practical
application. The premise was simple: All
human beings are equal and equally worthy of
loving and being loved. All our relationships must be
informed by love, whether inside the family, among
friends, or even in the fleeting moments as we pass
others on the street. When we sit down at a
restaurant, how many of us really pay attention
to the waiter? We might listen for a moment while
he reads the specials, but could anyone
describe him accurately after dinner? The same
applies to bus drivers, tollbooth
collectors, all the people we scarcely notice
as we follow our own pursuits. All it
takes is a brief moment of eye contact, which
acknowledges the equality of another human being.
Even that is a loving relationship.
Like other simple equations, many people find that one
almost impossible to solve. How does one become
able to love a relative when there has been nothing
but jealousy or hatred for years? Are we
expected to love someone who has deliberately
harmed us in some way? The first step, which we were
asked to take on Saturday morning, was to declare a
statute of limitations on damage done to us by our
parents. Now we used notebooks, putting it in
writing that the statute had expired. From this day
forward we agreed individually and collectively
to forgive any grievances still held against them.
Next we made a list of all the people who immediately
came to mind as enemies, detractors,
rivals, and anyone we had ever envied or knowingly
deceived. We were given only ten minutes to think of
names and write them down, which was probably a good
idea because most of us could have gone on for hours.
The next task was to list ten words that best
described ourselves, not taking into account what others
might think. Then we had to write down ten words
defining the person we would like to be--not a role
model, but the embodiment of our own potential.
After that we were given a few moments to find a
partner. Each pairing would remain together for the rest
of the weekend. This was a scary proposition, because
I have to admit I had not evolved to being
nonjudgmental. Put simply, I didn't
want to get stuck with some weirdo. (actually,
most people thought the weirdest thing about the weekend was that
I was there in the first place.) Fortunately my
radar had identified three very attractive
women in the group on Friday afternoon, so I
immediately made a beeline for Choice A and
managed to get there before the competition. I should have
made a mental note that I might not succeed with
LETTERT: we had just spent a day and a half learning
that everyone is equal and equally worthy of love,
and here I was practicing basic Darwinism. We
had to move quickly because there was no negotiating;
once eye contact was made with one of the other 299
people in the room, that was it.
My partner was a tall, very good-looking blond
woman in her early twenties. She had left
her small hometown in Pennsylvania
to pursue a modeling career in the Big Apple
when she was only eighteen. Apparently she was
successful at work but unlucky in love. She
described herself as habitually attracted to the
wrong men--ones who broke promises,
mistreated her and diminished her already low
self-esteem. I shared with her my wish that people would
stop assuming that some of us have no problems.
The one-on-one tasks continued the rest of the afternoon
and most of Sunday morning. We wrote and
exchanged lists of people and things we love, hate,
want to remember, and would like to forget. As usual
we weren't given much time, but now I found it quite
exhilarating to free-associate. It was very
liberating to write down the first thoughts that came
into my mind and then share them, uncensored, with someone
I had never met but to whom I soon felt I
could say anything.
Then all three hundred of us split
into groups of fifteen to twenty, including our
partners, and fanned out to a number of restaurants
in the area for lunch. By this time we were all on a
high, having affirmed the positive and banished the
negative. The waiters were literally overwhelmed
with respect. We ate our food slowly, taking
time to savor every bite. We listened intently as the
man who was one of the two leaders of the seminar
described the mind-blowing spiritual experience of
Harmonic Convergence, which, according to Mayan
prophecies, marked the beginning of a new age of
universal peace. Then he moved on to the next
step for LETTERT graduates who were serious about
going further: rebirthing in a hot tub. I had
no idea what that meant but I wondered where, when,
and did my partner get to come?
Sadly, at that point they lost me.
Rebirthing was conducted by two certified
rebirthers working with one LETTERT graduate in
someone's home--presumably a rebirther who
could afford a New York apartment with a hot tub.
The theory was that when most of us were born it was a
highly traumatic experience: we emerged from the
dark comfort of the womb to be greeted by harsh lights,
frightening creatures in masks, and a sudden,
violent slap on the back. Apparently this first
impression of the world is so overwhelming that we spend
our lifetime crippled by fear and anger. The sheer
effort of coping with those feelings or struggling to deny
them prevents us from becoming the free, loving, and
fulfilled people that we deserve to be. Rebirthing
sessions in the hot tub are meant first to re-
create our actual experience of being born in this
lifetime. Then the student and the rebirthers work together
to replace that horrific scenario with its exact
opposite. Curled up in the fetal
position in the moments before birth, we emerge
to find ourselves immersed in soothing warm water and
cradled by loving arms. The first sounds we hear are
gentle music and soft voices welcoming us into the
world.
Needless to say, the three rebirthings I had were
extremely pleasant, almost to the point of
sensory overload. The problem was that it seemed
obvious what was expected of me. I tried my
hardest to place myself once again inside my mother's
womb, but in spite of a long career as an actor
with a vivid imagination, I couldn't do it. The
rebirthers gave me more love and support than
any baby could ever hope forand were quite emotional about
my "breakthrough." I knew it would be downright
cruel to tell them I was faking it. They urged
me to be rebirthed at least twice a month (at
$200 a pop) to reaffirm my innocence and
to prevent negativity from working its way back
into my life. I assured them I would give it
serious thought, but after the third session in the hot
tub I never contacted them again. I thought about
staying in touch with my beautiful partner but decided
against it because rebound relationships usually don't
work. For the best interests of the children, as well as
myself, at that time I needed to be alone.
The reason I disengaged from LETTERT was much the
same as the reason I disavowed Scientology:
I don't believe in instant fixes. I
don't believe we can write an affirmation
to forgive our parents or others who have wronged us and
consider it done. I don't believe we can
write a new script for our lives
by simulating a pleasant birth.
I think that if we want to be true to ourselves,
finding answers to the most important questions of
life is a process. The time it takes to make
genuine discoveries and find true beliefs varies
with every individual. For most of my life faith was
a very difficult concept. I understood it to mean the
willingness to believe in the value of something that can't
be known in advance or even defined, but I couldn't
put it into practice. I was the customer who
demands an extended warranty or a money-back
guarantee. As an actor my job was to serve the
story, and I truly enjoyed the process
involved in doing that. Many actors get tired of
playing one part for a long time; I always enjoyed
long runs (such as A Matter of Gravity,
Fifth of July, and The Aspern
Papers) because every performance was an opportunity
to learn more about the character and the intentions of the playwright,
with a safety net of knowing the outcome in advance.
My first act of faith was not a religious one;
it happened when Dana and I were married. I had
always been afraid of marriage, perhaps because there had
been a long history of failures for many
generations in my family. But on a spring day in
1992, next to a picture window overlooking the
Berkshire Mountains in Massachusetts, I
repeated the vows because somehow I absolutely
believed that they were true. I couldn't know or
define our future ahead of time; I acted on
faith. It was an enormous step forward.
Three years later I lost the use of almost
my entire body. My identity and self-esteem
had always been based in the physical world. I
cherished health, athletics, travel, and
adventure. At first I couldn't imagine living
without those things. In an instant, paralysis
created an indescribable void. Family,
friends, and well-wishers from around the world assured me
that prayers and my faith in God would comfort me.
I tried to pray but I didn't feel any
better, nor did I make any kind of
connection with God. I wondered what was wrong with
me: I had broken my neck and become
paralyzed, possibly forever, but still hadn't found
God. A close friend about my age had lived through
tremendous upheavals since childhood and finally
found faith. His advice to me was "Fake it
till you make it." In other words, just pray and
sooner or later it will have meaning. I tried and
failed. Even in the sleepless predawn hours
at Kessler, my mind wandered and my emotions
overcame me.
Finally I decided to stop beating myself up. I
wasn't in school anymore and I didn't have
to get good grades in religious studies. When
reporters continued to ask me about the importance of
religion in my life I began to answer
by saying that I'm not sure if there is a God, but
I try to behave as if He is watching.
Gradually I have come to believe that spirituality
is found in the way we live our daily lives.
It means spending time thinking about others. It's not
so hard to imagine that there is some kind of higher
power. We don't have to know what form it takes or
exactly where it exists; just to honor it and try
to live by it is enough. Because we are
human we will often fail, but at least we know that
we do not deserve to be punished. That knowledge makes us
safe and willing to try again.
As these thoughts unfolded in the process of
learning to live my new life, I had no idea
that I was becoming a Unitarian. In my late
forties faith and organized religion
unexpectedly converged. Dana, Will, and I
attend services regularly, bringing along
whichever nurse happens to be on duty. Sue
Citarella, a lifelong practicing
Catholic, has come with us a number of times and
finds the welcoming, nonjudgmental atmosphere
to be very rewarding. In the words of our minister,
"We see our church as a place where people can be
truly religious because they can be true to themselves,
where honest doubt is not taken for heresy, and where the
beliefs of the past and the present become the
inspiration for future growth and discovery."
Dana and I were talking after church not too long
ago, reflecting on the service and religion in
general. I told her that what I liked about
Unitarian Universalism is that you are not
presumed guilty when you walk in the door. You
don't have to confess your sins to a priest and be
told that ten Hail Marys and five Our Fathers
will make you square with God for at least another
week. God isn't a warrior or a terrifying
father figure who will embrace you in his arms but
take you out to the woodshed in an instant if you
misbehave. This church doesn't demand a
percentage of your income in order to belong. This
God understands that many of us don't know where He
lives or even how to spell His name. He knows
that it isn't easy for us to love ourselves, our
families, or even our neighbors, let alone
the rest of humanity. Instead He asks us just to do
our best, trusting our innate ability to discern the
truth. As Abraham Lincoln said, "When I
do good I feel good. When I do bad I feel
bad. And that's my religion."
In the 1960's, hippies painted their vans
with the symbol for peace and the words "God Is
Love." Most of them were probably thinking about
sex, but in the deepest sense of the word what they
wrote was actually quite profound. I think they and
Honest Abe were right.



Hope

Hope is itself a species of happiness, and,
perhaps, the chief happiness which this world affords: but, like
all other pleasures immoderately enjoyed, the
excesses of hope must be expiated by pain; and
expectations improperly indulged must end in
disappointment.
--Samuel Johnson

Anyone familiar with Superman knows that ever
since he was created by Jerry Siegel and Joe
Shuster in 1938, his purpose has always been
to symbolize and uphold the values of "Truth,
Justice and the American way." During the
filming of the first Superman at Pinewood
Studios in England, on the wall of his office
director Richard Donner proudly displayed a
model of Superman in flight. The superhero
carries a banner with only one word:
"Verisimilitude," which the American
Heritage Dictionary defines as "the quality
of appearing to be true or real." The challenge
for the production team was to make the miniature,
optical, mechanical, and flying effects
absolutely convincing. Everyone involved in the
film knew that the one-line tease on the
advertising posters was going to be "You'll believe
a man can fly." That was a very tall order given
the state of film technology in 1977. The
challenge for me as an actor was to equal the
achievements of the technical experts; if they could
create verisimilitude, then I had to do the
same. The first step was to examine the values
embraced by the character and passed down for generations.
Truth and justice seemed relatively easy
to understand, but what about "the American way"? What
does that mean? Is the American way different
from the way of other countries that uphold
democracy and human rights? Isn't it
dangerous or at least counterproductive
to imply that the American way is somehow better
than others?
I posed some of these questions to Dick Donner
soon after I arrived in London to begin
preproduction for the film. He seemed pleased
by my enthusiasm and by this evidence that I was taking
my job seriously, but told me to go figure it
out. The first day of shooting was only three months
away and he was up to his neck in
technical problems. Every department seemed to need
final decisions yesterday.
After considerable thought and discussion with friends,
including a number of politicians who were fans
of Superman, I decided that because the character is a
hero for the entire world, nationalism was not an
issue. When Lois Lane asks Superman,
"Who are you?" he replies, "A friend." That
makes him, above all else, a symbol of
hope. In the face of adversity, hope often
comes in the form of a friend who reaches out to us. I thought
about other aspects of the American way and the
basic rights of pluralistic societies:
equal opportunity, equal rights, tolerance,
free speech, and fair play. For centuries
wars have been fought in defense of those rights. In
countries where they never existed or were taken
away, millions of people have risked their lives
to escape. Most of them left with only a few
possessions and the hope of not being turned away by a
free society.
To say that I believed in Superman is quite an
understatement. Of course I knew it was only a
movie, but it seemed to me that the values
embodied by Superman on the screen should be the
values that prevail in the real world.

When I suddenly became a quadriplegic
my deepest, almost overwhelming reaction was
simply "It's not fair." Intellectually, I
knew that life isn't fair and that bad things can
happen to any of us at any time. Emotionally, I
couldn't control myself. I demanded an answer to the
apparently unanswerable question: Why me? What
did I do to deserve this? It's not fair. With time
my irrational anger about the injustice of my
injury subsided. But the experience left a
residual effect that still informs the way I look
at the world today: I want to see fair play. I
don't care if it's proper officiating in
baseball games, how coaches make up teams
in Pee Wee hockey, ethical conduct in
business, or how we choose our
representatives in government.
Although I am a registered Democrat, like many
of my friends I vote for candidates based on the
issues. Here in New York State I
supported Democrats Hillary Clinton and
Charles Schumer for the Senate, but voted for
Republicans Rudy Giuliani and
George Pataki for mayor and governor,
respectively. When I joined other
advocates in the early 1990's to save the
National Endowment for the Arts, two of our most
formidable opponents were Senators Arlen
Specter (R-Pennsylvania) and Jesse
Helms (R-North Carolina). Since
1997 I have worked closely with Senator
Specter on health care reform, rights of the disabled,
and increased funding for biomedical research. When
the Senate voted on the Animal Welfare
Act of 2002, Jesse Helms introduced
an amendment excluding rats, mice, and birds
from the protections afforded higher animals such as
dogs and primates. If the Helms amendment
had been defeated, researchers would have been
required to conduct experiments on rats, mice,
and birds under the same conditions as an operation on
a human being. The expense involved would have put
an end to much of the critical basic research
currently under way across the country. In my younger
days I would never have imagined siding with Jesse
Helms on anything. With time I've learned that
the most effective way to change policy in
Washington is to join forces with the most influential
allies on a case-by-case basis.
Those examples of nonpolitical alliances
are meant to give a context to the 2000
presidential election. I believe the outcome
had a direct effect on the hope for a radical
overhaul of the electoral process, the hope for
an enlightened energy and environmental policy,
and the hope for government support of the most
advanced biomedical research.
Those of us who hoped for a fair debate leading
to governmental approval of therapeutic cloning
were extremely disturbed by a media opportunity
that took place at the White House on
April 10. The president urged the Senate
to pass the Brownback bill, S$1899, which would
ban all forms of cloning. He stated, "I
believe all human cloning is wrong, and both
forms of cloning ought to be banned, for the following
reasons. First, anything other than a total ban
on human cloning would be unethical. Research
cloning would contradict the most fundamental
principle of medical ethics, that no human
life should be exploited or extinguished for the
benefit of another."
At the president's side, in full
dress uniform, was former New York City
police officer Stephen McDonald, still confined
to a wheelchair sixteen years after suffering a
gunshot wound that left him paralyzed from the
shoulders down. Officer McDonald is a
devout Catholic. When he was interviewed by the
media after the president's press conference, he
said that his accident was "God's will" and echoed the
pope's position on the sanctity of human
life.
As I watched the event live on CNN I
felt great sympathy for Stephen McDonald,
who took the trouble to visit me with his family
soon after I was admitted to Kessler. He had
many helpful things to say about living with a high
cervical injury. As an anxious father
particularly concerned about our youngest, Will, I was
delighted to meet his son Connor, who was not yet
born when his father was paralyzed. We only met
for a short time, but he seemed to be a perfectly
normal nine-year-old and I could sense a
special bond in spite of--or perhaps because
of--Stephen's disability. Patti
McDonald, Stephen's wife, was a great comfort
to Dana; they talked many times about the issues
facing the families and caregivers of people living with
disabilities. That's why it was painful for me
to see him strategically placed next to the
podium on television that day. I felt he was
being used. Politicians do this sort of thing all
the time. Is there any elected official who
hasn't been photographed reading to small children?
But the issue of therapeutic cloning was a
current debate that stirred up emotions as well
as ethical, moral, religious, and political
concerns. I thought the president was unduly
attempting to exert his influence, especially in
light of the fact that the bioethics panel
appointed to advise him had not yet issued its
opinion. Once again, what happened to fair
play?
I'm certain that I was only one among many who
were greatly relieved to find an op-ed piece in
The New York Times on April 25
by Michael Gazzaniga, Ph.d., director
of the Center for Cognitive Neuroscience at
Dartmouth College. A fellow of the American
Association for the Advancement of Science and the
American Neurological Association, he
is also one of the distinguished members of the
president's advisory panel. He wrote:

It was a surprise when, on April 10, the
President announced his decision to ban cloning
of all kinds. His opinions appeared fully
formed even though our panel has yet to prepare a
final report. ...
Some religious groups and ethicists argue that
the moment of transfer of cellular material is
an initiation of life and establishes a moral
equivalency between a developing group of cells
and a human being. This point of view is
problematic when viewed with modern biological
knowledge.
We wouldn't consider this clump of cells even
equivalent to an embryo formed in normal
human reproduction. And we now know that in
normal reproduction as many as 50 percent
to 80 percent of all fertilized eggs
spontaneously abort and are simply expelled
from the woman's body. It is hard to believe that
under any religious belief system people would
grieve and hold funerals for these natural
events. Yet, if these unfortunate zygotes
are considered human beings, then logically people should.
...
The biological clump of cells produced
in biomedical cloning is the size of the dot on
this i. It has no nervous system and is not
sentient in any way. It has no trajectory
to becoming a human being; it will never be implanted
in a woman's uterus. What it probably
does have is the potential for the cure of diseases
affecting millions of people.
When I joined the panel, officially named the
President's Council on Bioethics, I was
confident that a sensible and a sensitive policy
might evolve from what was sure to be a
cacophony of voices of scientists and
philosophers representing a spectrum of
opinions, beliefs and intellectual
backgrounds. I only hope that in the end the
President hears his council's full debate.

The temperature of the debate rose
dramatically in May 2002. Proponents on
both sides of the Brownback bill ran
television ads in Utah, North Dakota,
Georgia, and Washington, D.c., trying to win
swing votes and threaten senators who were
up for reelection. Supporters of S$1899
such as the Family Research Council tried
to convince the public that therapeutic cloning means
"killing babies" and the creation of "embryo
farms." Opponents explained somatic cell
nuclear transfer and pleaded with the Senate,
"Don't legislate away hope."
A poll taken by the highly respected firm
Caravan Inc. showed that 68 percent of the
American public was in favor of therapeutic
cloning, 28 percent were opposed, and 4 percent
had no opinion. Opponents of the research who
objected because of deeply held religious or
ethical convictions, who were absolutely true
to their beliefs (like Stephen McDonald), I
felt had to be respected. Much more troublesome were
senators like Bill Frist (R-Tennessee),
and of course Senator Brownback, who seemed
to lack a consistent point of view.
In testimony before a Senate
subcommittee, Senator Brownback stated that
he was in favor of in vitro fertility clinics
and added, "Many of my friends have had fine children that
way." Senator Harkin pointed out that during the
process of creating a viable embryo for a couple
that could be successfully implanted in the woman's
uterus, an average of eight to ten fertilized but
now unwanted embryos are routinely discarded as
medical waste. Brownback replied, "I
understand the majority of them are put up for
adoption. But let's return to the question of
cloning."
According to the 1999 Centers for Disease Control
report "Assisted Reproductive
Technology Success Rates," 250
babies were born to couples using five IVF
clinics in Kansas that year. An estimated
6,000 eggs were retrieved and approximately
70 percent of those were successfully fertilized and
developed, creating some 4,000 embryos.
Consistent with the average statistics in 400
IVF clinics across the country, a third of the
embryos in the Kansas clinics didn't
develop enough to be useful; a third were frozen for the
possible creation of a sibling; the remaining third were
thrown away with the informed consent of the donors. According
to Sean Tipton, director of public
affairs for the American Society for
Reproductive Medicine, only one of the five
clinics in Kansas offers an embryo
adoption program. In addition, he estimates
that in the twenty-one-year history of in vitro
fertilization in the United States, less than
100 families have had children through embryo donation.
If Senator Brownback doesn't know the
facts, even in his own state, is he qualified
to propose legislation on the issue? If he
is aware that any leftover embryos are
legally being destroyed in Kansas, how does he
condone that in light of his fervent opposition to the
use of an unfertilized clump of cells for
therapeutic cloning? In an interview with
Charlie Rose on PBS he defined that
less-than-five-day-old cluster of cells as
"an individual." Then he suggested to Dr.
Harold Varmus, former director of the NIH,
who was also on the program, "Why don't you
experiment on me instead?" Dr. Varmus had the
courtesy not to press him on that point. I would not
have hesitated to ask him how that would work. Is he
suffering from a disease that might be cured
by therapeutic cloning? Would he be willing to have his
own DNA extracted from a piece of his skin,
then transferred into an unfertilized egg in
order to harvest stem cells that could be used to cure
him?
Senator Frist made statements that were equally
puzzling to me and perhaps to thousands of others who know
that, as he is the only doctor in the Senate,
many of his colleagues looked to him for guidance on
the issue. When we entered into a discussion on the
record following my testimony on March 5,
he said that he fully supported embryonic
stem cell research. But after I left the room
he stated that it was "irresponsible" for me to link
human stem cells with therapeutic cloning, adding
that he was adamantly opposed to all forms of
human cloning. However, an overwhelming number
of researchers and clinicians in the United
States and around the world have published articles and
gone on record urging therapeutic cloning to go
forward. They say it might turn out to be the
safest method to cure patients because it
minimizes the chances of the immune system's
rejection of stem cells. As a doctor
Senator Frist is bound by medical ethics
to prescribe the best treatment for his patients.
By supporting the Brownback bill, which would not
only ban therapeutic cloning but criminalize
it, many disease advocates, myself
included, felt that Senator Frist was making the
wrong decision both as a doctor and as a
senator. When it was revealed in May 2002 that
he was on the short list to replace Vice
President Cheney in Bush's bid for
reelection, more light was shed on his opposition
to therapeutic cloning.

And then I turned fifty. That's an
important milestone in anyone's life.
Unfortunately it carried added significance for
me, because I stated seven years earlier that I
hoped to stand on that occasion and toast everyone who had
made it possible for me to do so. I spent that
evening at a festive occasion surrounded by family
and friends, in good health but still seated in a
wheelchair. In the weeks and months leading up
to my birthday many people wanted to know what happened.
Was I misinformed, na@ive, or just plain
ignorant when I made that statement in 1995?
Some scientists offered the opinion that if the
NIH had been allowed to encourage and
adequately fund embryonic stem cell
research immediately after those cells were first isolated
in 1998 I might have made it. The cures that
millions want so desperately for so many
diseases might have been achieved.
I can honestly say that there is no point in
becoming obsessed by what could have, should have, or might
have been. My intention was to create a commotion,
to provoke a reaction from scientists,
politicians, and the media by proposing a
difficult but not necessarily impossible
challenge. I remember asking Dr. Wise
Young not to give me too many details about
regenerative medicine and the enormous
complexities of spinal cord repair; I was
willing to be the fool on the hill, even though I
had promised to learn enough about the science to establish
credibility. President Roosevelt, ill and
disabled himself, envisioned a healthier, stronger nation and
created the National Institutes of Health. Then
he challenged scientists to conquer polio, and the first
vaccine was developed in less than nine years.
President Kennedy challenged the nation to land a
man on the moon in less than a decade before the
technology was even on the drawing boards. Four
hundred thousand Americans in both the public and
private sector worked together against the clock and
made it possible for Neil Armstrong
to take that giant leap for mankind in 1969.
Certainly I was na@ive, but I didn't see
anything wrong with emulating two of the greatest
leaders of the twentieth century.
All over the world there are scientists,
doctors, therapists, politicians,
pharmaceuticals, biotechs, foundations,
universities, health care providers, and
untold others doing their utmost, even devoting
their entire lives to the relief of human
suffering. What I didn't expect was that in this
country, home of "Truth, Justice and the
American way," hope would be determined
by politics. When I learned that human trials
for spinal cord regeneration were delayed for two
years by a small pharmaceutical company that
claimed partial ownership of a scientist's newly
developed technology, I was outraged to witness
further proof that "success has a thousand fathers,
while failure is an orphan." I had always
assumed that hope was based on the advancement of
scientific knowledge and the funding to realize its
potential.
Moral and ethical questions have always attended the
birth of new ideas and new technologies.
Litigation of patents and the ownership of
intellectual property is a more frightening
obstacle. As therapies emerge and make their
way into the marketplace, the pie will be very large and
everyone will want a piece of it. If we don't
resolve those political and economic issues
soon, progress may reach an impasse,
giving an inverse meaning to the concept that nothing is
impossible.
Keeping hope alive requires endurance and
hard work, much more than I ever anticipated. As
Samuel Johnson wrote in the eighteenth
century, "The excesses of hope must be
expiated by pain; and expectations improperly
indulged must end in disappointment." We have already
experienced pain and disappointment; in fact it may
continue for some time. Reaching the ultimate goals
of today's biomedical research is certainly going
to be extremely difficult. But ultimately
I place my trust in the words of Robert F.
Kennedy, who said, "The future does not belong
to those who are content with today, apathetic toward common
problems and their fellow man alike, timid and
fearful in the face of bold projects and new
ideas. Rather, it will belong to those who can
blend passion, reason and courage in a personal
commitment to the great enterprises and ideals of
American society."
Not long ago I wrote an essay about
hope. It's a story about surviving an almost
impossible situation; perhaps it's also the best way
I can describe how I feel about my new
life:

The Lighthouse

I have always loved sailing. I loved being out on
the water, in harmony with the boat, feeling the
exhilaration of slicing through waves, leaving land behind.
The most precious moments were shared with friends, working
together to bring out the best in the boat and in ourselves.
In the late fall of 1978, I helped
deliver a forty-eight-foot sloop from
Connecticut to Bermuda. There were five of us
onboard for the journey down the Connecticut
River, eastward on Long Island Sound around the
point at Montauk, then due south in search of a
tiny island 564 miles off the Carolinas. We
expected a passage of four to five days.
Casting off just before midnight, we caught the
ebb tide that would push us quickly downriver and out
into the Sound. With a bracing 15-knot breeze behind
us, we sped past the houses on the shoreline and
watched them go dark as people settled into their cozy
beds. We had on thermals, sweaters, and
foul-weather gear to protect us against the
38-degree October night. Clutching our
mugs of coffee, ducking now and then to avoid the
stinging spray from the bow wave, we embraced the
adventure ahead.
By daybreak we had rounded Long Island and
Montauk lay astern. As it disappeared over the
horizon we knew we would not see land again for the
next four days. The wind shifted to the west and
picked up to 20 knots; the boat was "in the
groove" as we sped southward at nearly 15
miles an hour. We shifted into the routine of
offshore sailing, each of us on watch for four
hours then off the next four. All of us were
experienced sailors but we hadn't met before the
trip. Three were from England, one was a
Canadian friend of the owner who lived in
Toronto, and I was the American.
The next two days passed quickly as we
enjoyed good weather, took turns
preparing reasonably appetizing meals, and started
to get acquainted. Although the boat was equipped with
radar and the most advanced electronic navigation
system of its time, we still tracked our progress
as sailors have for centuries--with a sextant and
dead reckoning. Every few hours we tuned in to the
weather reports on the high-frequency radio.
On the afternoon of the third day we didn't like what
we heard.
The storm came from the north and reached us just before
dark. We were sailing directly downwind with the
mainsail and jib full out at right angles to the
boat. The rain came first, then the following seas
rose until they towered above us. Suddenly the
wind gusted to 30 and 35 knots; all hands
came on deck to take down the jib and put two
reefs in the main. Even with the reduced sail
area, we were now sledding down mountainous waves,
the bow crashing into the troughs below as the storm turned
into a full-blown gale.
We couldn't see anything beyond the dim glow of the
running lights. Adrenaline rushed through our veins
as we fought to stay in control of the situation. I was
afraid that the electronic systems might fail
if water flooded the cockpit and found its way
below, making it impossible to determine our
position. We weren't maintaining a course; we
were just trying to survive.
The gale pursued us through the night and into the
following day. When we came off watch we
stumbled below, grabbed a few crackers to keep
something in our stomachs, and crawled into our bunks.
The only relief was that with the dawn we were able
to see the chaos around us. Even though the
helmsman's compass was swinging wildly back and
forth, now we knew that our average heading was south.
And then we saw the light.
It was dim and distant; we could only see it
when the boat was lifted on the crest of a wave.
Every time we came up, all eyes strained to find
it again through the blinding rain. Soon we realized that
the light flashed for two seconds at
ten-second intervals. Someone went below to check
the charts. Dead ahead of us, forty miles away,
was Gibb's Hill Lighthouse at
Southampton, Bermuda.
Lighthouses--tall, sturdy, and built
to withstand the pounding surf and raging winds--warn
passing ships to avoid crashing into rocks or
dangerous reefs near shore.
Lighthouses have guided sailors through troubled
waters for as long as anyone can remember. Seeing
that lighthouse was like being held in the arms of a parent
or a long-lost friend. Now it didn't matter if
our modern equipment failed. All we had to do
was not lose sight of it and let nothing keep us from
reaching its warm embrace.
At some time, often when we least expect it,
we all have to face overwhelming challenges. We
are more troubled than we have ever been before; we may
doubt that we have what it takes to endure. It is
very tempting to give up, yet we have to find the will
to keep going. But even when we discover what
motivates us, we realize that we can't go the
distance alone.
When the unthinkable happens, the lighthouse is
hope. Once we find it, we must cling to it with
absolute determination, much as our crew did when
we saw the light of Gibb's Hill that
October afternoon. Hope must be as real, and built
on the same solid foundation, as a lighthouse; in
that way it is different from optimism or wishful
thinking. When we have hope, we discover powers within
ourselves we may have never known--the power to make
sacrifices, to endure, to heal, and to love.
Once we choose hope, everything is possible.
We are all on this sea together. But the lighthouse
is always there, ready to show us the way home.