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Over the past year—from December 1997 to December 1998—it seems to me that everyone else in my family has grown and learned and developed in many ways. Certainly my disability has not slowed anyone down. Will is now in first grade. He’s four foot two and obsessed with sports. In order of importance, hockey comes first, followed by baseball, soccer, and lacrosse. I try to attend as many of his practices as possible, sitting behind one of the goals as he works on stickhandling, skating backwards, and (most important) learning how to stop. We often go into New York for Rangers games, diehard fans no matter what. In fact, Will is on a first-name basis with most of the players. It gives me great pleasure to take him into the locker room after a game, because he’ll go right up to Wayne Gretzky or goalie Mike Richter to compliment them, whether they’ve won or lost. But once he went up to Colin Campbell, the Rangers’ coach at the time, and suggested that he bench Richter the next game because he had let in a couple of soft goals. I was sure that we would no longer be welcome in the locker room (and I was very relieved that no one else—especially Mike—had heard Will’s coaching advice). Colin Campbell smiled at Will and said he’d think it over.
Will is also interested in the piano and chess, which gives us many opportunities to spend time together. I coach him on the piano; he almost always gets the notes right, but keeping a steady rhythm is more difficult. After a fifteen to twenty minute session, I ask him to put the book away and just improvise, to use the piano freely and experiment with the possibilities of the entire keyboard. He loves this, and often produces pleasant melodies. The only condition I impose is that he has to keep his wrists up. When we play chess, he knows the key is to control the center of the board. I used to make deliberate mistakes to see if he would spot them and enjoy capturing another of my pieces. Now I have to concentrate on my own game, because he no longer needs any giveaways.
Dana spent much of the last year improving her already fantastic singing voice with Bill Schumer, one of the best coaches in the business. She performed at a number of benefits, and in September began rehearsals for a three character Broadway musical called More to Love. The star was Rob Bartlett, best known as Don Imus’s sidekick on his morning radio show. The director was my old friend and mentor Jack O’Brien, who had hired me for my season at the San Diego Shakespeare Festival and then recommended me for Juilliard.
Rob had started in the business as a stand-up comic, and the play was less of a play than an opportunity for him to perform various routines. The setting was the garage of his house, which was filled to the rafters with bric-a-brac, refrigerators, tennis rackets, piles of old newspapers and the like. Dana, playing his wife, had the thankless task of nagging at him to clean it up and throw out the garbage. Of course Rob didn’t make much progress, because almost every time he picked up an object, it became a prop for a comedy routine. Dana had one song and a slinky dance number to perform in one of Rob’s fantasies. But even though she pulled it off brilliantly, it couldn’t save the show. Dana got glowing reviews but the critics were otherwise merciless, and it closed after only four performances. None of us expected the show to have a long run, even though the audiences seemed genuinely to enjoy it. The producers had barely scraped together enough money to open and had no reserve funds to keep the production running in spite of the positive word of mouth.
Dana had given her all to her fellow cast members and the audience, but when the play was abruptly canceled, she didn’t waste any time brooding about it (as I certainly would have). Many of her friends called to commiserate, but within a few days she had put the experience behind her. Once again, as at the time of my accident, her resilience and strength of character prevailed.
Matthew, whom I still vividly remember carrying on my shoulders during visits to the Bronx Zoo, is now a freshman at an Ivy League university. He lives off campus in a small apartment that has a parking space for the Jeep convertible he was able to buy secondhand with money saved from working at my brother-in-law’s restaurant on Cape Cod. He’s six foot three, in terrific shape, and when he turns on the British accent the effect on the women in his class is impressive. It’s great to have him nearby—a two-and-a-half-hour drive away instead of a seven-hour flight over the Atlantic. He often comes down to visit; I was especially pleased that he was able to attend the premiere of Rear Window. Our level of respect and communication remains high. Now that he has reached an age that I still remember clearly myself, I feel that perhaps I am more valuable to him as a friend and advisor than I was in the past. Gae deserves full credit for Matthew and Alexandra’s upbringing; after all, I was no longer a part of their daily lives after they were seven and three, respectively. But we made all the important decisions together with hardly any difficulty, because our ideas about what was best for them were compatible. They never had to choose one parent over the other, because our values were so similar. I believe they have always been equally loved and feel equally loyal to both of us. And even though Matthew and Al consider London their real home, whenever they join Dana, me, and Will for any period of time, we are very much a family.
Alexandra is flourishing both at school and in her personal life. She is one of the leaders of her class and is extremely conscientious about her studies. About the time of her fifteenth birthday in late November of 1998, I received a framed photograph in the mail. It showed a beautiful young girl with windblown blond hair and dramatically made-up eyes, bundled up against the weather in an elegant brown coat. It took me at least thirty seconds to realize that I was looking Alexandra. With the picture came a note explaining that she had done a shoot at their house in the country with a makeup artist, stylist, and photographer who were friends of Gae’s. She wanted to know if I thought it was okay for the photos to appear in a four-page spread in Tatler magazine, one of the most prestigious in England.
My first reaction, after I got over the shock of seeing her professionally styled and photographed, was gratitude that she had asked for my permission. Again I felt truly blessed to have the respect of two teenage children; how much more difficult my life would be if I had rebellious youngsters to contend with while having to deal with my own situation.
I wrote back and told her that I had no objection to these pictures being published and that if she wanted to model occasionally for the top magazines, that would be okay as well. The only conditions I insisted on were that modeling must not interfere with her schoolwork, that she had to go to college, and that runway modeling was absolutely out of the question. Gae agreed with me completely, so that even if Al had wanted to rebel (which she didn’t), she would have come up against a united front. Again, thanks largely to Gae’s parenting, Alexandra considers all the attention as something of a lark and is not unduly impressed with herself.
Gone are the days when Matthew and Al spent three weeks with us in Williamstown over the Christmas holidays. Now both of them have to keep up with their homework instead of going skiing every day. So this year, they’ll be with us for only about ten days. Then Al will go back to London to prepare for a series of exams, and Matthew will go back to school.
Last summer Al was with us for nearly six weeks. Dana and I worried about how she would spend her time, because I had to begin shooting Rear Window on July 26 and wouldn’t finish until the end of August. And the location was not a beautiful village on the coast of Maine but an old warehouse in Yonkers. Before she came over from England, I arranged for riding lessons and tennis partners and places to swim, all the while feeling guilty that I would have to concentrate on the movie and wouldn’t have much time to spend with her.
I was taken completely by surprise and felt genuinely honored when Al revealed that she would prefer to spend her time with me. Every morning, she taught me my lines as I exercised and prepared for the day. Then she came with me to the set and helped with anything that needed to be done, from making phone calls to writing down my suggestions for revising the script. During the actual filming, she would always watch the scene
on one of the monitors. Gradually she began making comments and suggestions, at first very timidly. But soon, because I found her advice so valuable, I encouraged her to speak up. Before long I would look to her for feedback after nearly every take. She never went riding or took a day off during the whole shoot, and even if the work went on until one in the morning, she never left before it was over. I was more than pleased when my fellow producers agreed to give her a screen credit as my assistant.
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As for me, I would still describe my life as a ride on a roller coaster, though not a very dangerous one—more something you might find at a country fair than at Coney Island or Great Adventure. One very curious change has occurred over the last year. My optimism about the future remains intact. But whereas three years ago I was challenging the scientists who remained skeptical, now many of them are extremely excited about all the breakthroughs and the promise of the future, while my own attitude has become more philosophical. I realize that it will take tremendous cooperation among researchers to effect a cure, and that the hardest battle lies ahead: the fight for more funding, FDA approval of new drugs, the difficulty of organizing human trials, and the question of who owns the rights to the underlying research that has brought success. My future and the future of the other 1.2 million spinal cord victims around the world depends on how all of that plays out. No one can accurately predict how long it will be before the average patient can expect to begin the process towards being cured. The most optimistic timeline seems to be another year until the beginning of three sets of human trials, which would take two years to complete. I would join the third phase, which would begin approximately two and a half years from now. Then a pump would be implanted in my abdomen or shoulder with a small tube connected directly to my spinal cord at the site of my injury. A constant flow of the IN-1 or L-1 antibodies would have to be delivered into the cord around the clock for possibly as long as three years. Some scientists believe that connections with surviving pathways of nerves will allow the fairly rapid recovery of some functions, such as the ability to breathe and to use my arms. Others are convinced that because I have been injured for a relatively long time, whatever nerves are still intact have lost their myelin coating, making them useless. If that is true, then new nerves will have to grow all the way down the spinal cord to the lumbar region in order for me to walk, a process that would take an additional two years. Of course I would benefit from gradual recovery along the way, but the ultimate goal, to walk away from the wheelchair, would be that much further off.
Because of all the uncertainties of how and when recovery will occur, I have taken a step back psychologically from the whole issue. There is now no question that spinal cord paralysis will be cured, and that it will happen in a relatively short period of time. But I find it very depressing to play a guessing game; my experience over the last three years has taught me to remain more detached. Instead I do everything I can to help. In public, I am still an exuberant cheerleader. There is tremendous momentum in the spinal cord field, and part of my job is to keep it going. Privately, knowing all the complications, I am more subdued than I used to be.
As I mentioned before, my work is divided between creative projects and health-related issues. I am grateful that I have been successful in both areas. But I have to admit that I still wake up every morning and have to get over the shock of not being able to move. I am still jealous when I watch others merely stand up and stretch or walk down a hallway. Every time I think about all I took for granted in the past—making love, sailing, acting onstage, or simply giving a friend a hug—I am conflicted between the desire to revisit these memories and to keep them alive, or to try to let them go now that they are receding further into the distance.
Lately I have begun to perceive my life as a continuum, rather than two parts divided by what happened on May 27, 1995. I’m thrilled when someone remembers something we shared at some point in my life. I believe this reaction means my mind and spirit refuse to let the injury define who I am now. And when I look to the future, I see more possibilities than limitations; otherwise, I wouldn’t have the willpower to eat a proper diet and exercise in preparation for recovery.
As we passed through the night during the last imaginary voyage on the Sea Angel, we were unsure what kind of light beckoned ahead. Now as we draw closer it seems it just might be the entrance to a safe harbor. No one knows how much further we have to go, but somehow we’re certain we’re not going to sink. When we first set sail, none of us could have imagined what was going to happen. But we weathered every adversity that came our way; the boat proved to be stronger than we ever realized. Whether or not this light up ahead shows the way to our final destination is not so important now. However long the journey, we will survive.
December 1998
POSTSCRIPT
Dr. Jane was right. About a year after I left Kessler, sensation returned at the very base of my spine. I am, after all, incomplete. The MRI taken at U.C. Irvine in the fall of 1997 also showed that the ventral side of the spinal cord that controls motor function was completely intact. The gap at C2 that prevents messages sent by the brain from being transmitted to the body was only twenty millimeters long. If you were to put your little finger over the site of the injury you would be looking at a picture of a completely normal spinal cord. According to Dr. Schwab, these circumstances make me a prime candidate for the first human trials in regeneration. Because the gap is so small it appears likely that as the nerves regenerate they will be able to make appropriate reconnections. My chances of significant recovery now are greater than anyone could have expected just a few short years ago.
MISSION STATEMENT OF THE CHRISTOPHER REEVE FOUNDATION
Founded in 1996, the mission of the Christopher Reeve Foundation (CRF) is to raise funds for medical research leading to the effective treatment of and—ultimately—a cure for spinal cord injury paralysis. CRF serves as a source of information and a voice for all people with disabilities. Through grants, CRF also supports programs that focus on quality-of-life issues for all people with disabilities.
To make a donation, or for more information, write or call:
Christopher Reeve Foundation
P.O. Box 277
FDR Station
New York, NY 10150-0277
1-888-711-HOPE
CHRISTOPHER REEVE CREDITS
MOTION PICTURES
Village of the Damned (John Carpenter, director)
Speechless (Ron Underwood, director)
Above Suspicion (Steve Schachter, director)
Remains of the Day (James Ivory, director)
Noises Off (Peter Bogdanovich, director)
Morning Glory (Steve Stern, director)
Switching Channels (Ted Kotcheff, director)
Superman IV (Sidney J. Furie, director)
Street Smart (Jerry Schatzberg, director)
The Aviator (George Miller, director)
The Bostonians (James Ivory, director)
Superman III (Richard Lester, director)
Monsignor (Frank Perry, director)
Deathtrap (Sidney Lumet, director)
Superman II (Richard Lester, director)
Somewhere in Time (Jeannot Szwarc, director)
Superman (Richard Donner, director)
Gray Lady Down (David Greene, director)
TELEVISION
Black Fox (CBS miniseries)
Sea Wolf (TNT movie of the week)
Mortal Sins (USA Network movie of the week)
Tales from the Crypt (HBO)
Death Dreams (Lifetime)
Bump in the Night (CBS movie of the week)
Road to Avonlea (guest star on Disney Channel series)
The Road from Runnymede (PBS/Constitution Project)
Carol and Company (guest star)
The Rose and the Jackal (TNT)
The Great Escape: The Untold Story (NBC movie of the week)
Last Ferry Home (WCTV-Boston/Hearst E
ntertainment)
Anna Karenina (CBS)
The American Revolution (PBS series)
Love of Life (CBS)
THEATER
BROADWAY
The Marriage of Figaro
Fifth of July
A Matter of Gravity
The Aspern Papers (London)
OFF-BROADWAY
The Winter’s Tale
My Life
REGIONAL
The Guardsman
Death Takes a Holiday
Love Letters (Boston, Los Angeles, San Francisco)
Richard Cory
The Greeks
Summer and Smoke
The Cherry Orchard
The Front Page
Camino Real
Holiday
The Royal Family
John Brown’s Body
Troilus and Cressida
The Way of the World
The Firebugs
The Plow and the Stars
The Devil’s Disciple
As You Like It
Richard III
The Merry Wives of Windsor
Love’s Labour’s Lost
South Pacific
Finian’s Rainbow
The Music Man
Galileo
DIRECTING
In the Gloaming (HBO; Emmy nomination, won four Cable Ace awards)
Appendix
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SELECTED SPEECHES
SPEECH AT THE DEMOCRATIC NATIONAL CONVENTION
August 26, 1996
Over the last few years, we’ve heard a lot about something called family values. And like many of you, I’ve struggled to figure out what that means. But since my accident, I’ve found a definition that seems to make sense. I think it means that we’re all family, that we all have value. And if that’s true, if America really is a family, then we have to recognize that many members of our family are hurting.
Still Me Page 29