By People Staff
May 11, 1998 12:00 PM

Seated in his breath-operated wheelchair, Christopher Reeve rolls into the sunny sitting room of his Pound Ridge, N.Y., home. Around him, the house is buzzing. In the hall, Reeve’s 5-year-old son Will—whose school Reeve and his wife, Dana, visited earlier in the day for a parent-teacher conference—plays with Chamois, a yellow Lab. In the kitchen, Reeve’s visiting daughter Alexandra, 14, rummages for a snack. Two Christopher Reeve Foundation employees labor in a downstairs office, and a nurse stands by to check Reeve’s pulse and offer sips of water.

Nearly three years after the May 27, 1995, riding accident that left him paralyzed from the neck down, life at the Reeve household has reached “a new state of normal,” says Dana, 37. But, as Reeve details in a new memoir, Still Me (Random House), staying healthy is an ongoing struggle. “The longer you’re in a chair, the more you have to fight to keep your body from deteriorating,” says Reeve, who spoke to PEOPLE correspondent Elizabeth McNeil.

Since his release from New Jersey’s Kessler Institute for Rehabilitation in December 1995, Reeve, 45, has surmounted several medical setbacks, including a broken arm and a bone-deep infection in his ankle. But he has regained sensation in his left leg (he still cannot move it) and some movement in his shoulders and chest. Although he is able to breathe for up to 90 minutes without his respirator, doctors told him he was relying too much on neck and shoulder muscles. “Now I do it in sessions of 5, 10, 30 minutes,” he says. “I’m off the vent for less time, but it’s time well spent.”

After the accident, Reeve vowed to walk by his 50th birthday. “We might even be ahead of schedule,” he says now, noting that scientists have regenerated severed spinal-cord nerves in rats. Reeve’s doctor, Kessler’s Steven Kirshblum, calls Reeve’s chances for further recovery “hard to say.” But, Kirshblum adds, “we have made great strides in the last few years. There is a great deal of enthusiasm for spinal-cord research.”

Much of that enthusiasm can be traced to Reeve, who has pressed Congress for funds and raised more than $2 million by speaking at benefits and by creating the Christopher Reeve Foundation (1-888-711-HOPE), which supports lobbying efforts. “It’s not a job I would have chosen,” he says, “but one that I fully embrace.” Having directed the 1997 HBO movie In the Gloaming, he may soon star in an ABC remake of Rear Window. “Right now everything I do,” he says, “has to be worthwhile.”

Nothing is more so than time spent with Dana and Will and with his other children, Alexandra and Matthew, 18, who live in England with their mother, social worker Gae Exton. “The circumstances have changed, but the relationship hasn’t,” says Dana, who wed Reeve in 1992.

Being thrown from his horse at the Culpeper, Va., competition was “a freak accident,” Reeve says. “But I agonize, because I think how much easier life could be. I’m not trying to be a hero. I’m just trying to cope the best I can.” In the excerpt that follows, Reeve details just what that involves.

‘You’re Still you’

Five days after the accident on Memorial Day weekend 1995, I became fully conscious and able to make sense. Dr. Scott Henson and Dr. John Jane, chief of neurosurgery at University of Virginia Hospital, explained my situation. They told me in detail about the extent of my injury and said that after the pneumonia cleared from my lungs they would operate to reconnect my skull to the top of my spine. They didn’t know if the operation would be successful, or even if I could survive it. They had a plan, but it was extremely risky and they needed my consent. Dana had insisted (over the objections of some of the family) that the doctors discuss everything with me and that nothing be done without my permission. I answered somewhat vaguely, “Okay, whatever you have to do.” Ever since childhood I’d been used to solving my problems. Whatever scrape I would get myself into, I was always sure of a way out. So at first I thought this was just another temporary problem. I needed surgery, but I’d be up and around before long. It was only after the doctors left that I began to absorb what they had told me: This is a paralyzing injury.

Dana came into the room. We made eye contact. I mouthed my first lucid words to her: “Maybe we should let me go.” She said, “I am only going to say this once: I will support whatever you want to do, because this is your life and your decision. But I want you to know that I’ll be with you for the long haul, no matter what.” Then she added the words that saved my life: “You’re still you. And I love you.”

If she had looked away or paused or hesitated even slightly, or if I had felt there was a sense of her being noble, or fulfilling some obligation to me, I don’t know if I could have pulled through. Because it had dawned on me that I had ruined my life and everybody else’s. But what Dana said made living seem possible, because I felt the depth of her love and commitment. I was even able to make a little joke. I mouthed, “This is way beyond the marriage vows—in sickness and in health.” And she said, “I know.” I knew then that she was going to be with me forever. My job would be to learn how to cope with this and not be a burden.

After 10 days in intensive care, I was ready for the operation. One of the greatest concerns of the surgical team was how to turn me face down without doing further damage to my spinal cord. Eventually, Dr. Henson held my head and 10 people slowly turned me over. They put me on a table with a cutout for my face. For the next eight hours they worked to put me back together again.

At the time I had no idea that the kind of surgery they would perform on me had never been done before. Dr. Jane had to reattach my head to my spinal column without causing brain damage. He placed wires under the bony coverings of the spinal cord. He took bone from my hip and squeezed it down to get a solid fit between two vertebrae. Then he put in a titanium pin the shape of a small croquet wicket and fused the wires with the first and second vertebrae. Finally, he drilled holes in my skull and passed the wires through them.

When I came out of the surgery, I looked like a prizefighter whose face had been badly pummeled. My spirits were on a roller coaster ride. There were moments when I would feel so grateful—when a friend would come a long way to be with me, talk to me, cheer me up. But the time would come when everybody would have to go. I’d be given a sleeping pill at about 10:30 or 11 o’clock, but by 1 or 2 it would wear off. I’d wake up and be staring at the wall, staring at the future, staring in disbelief.

I was still very afraid, largely because I couldn’t take a single breath on my own. And the connections of the hoses on these ventilators are tenuous at best. The nurses put tape over the joints, but they don’t always hold very well, and you lie there at 3 in the morning in fear of a pop-off, when the hose just comes off the ventilator. I had several. After you’ve missed two breaths, an alarm sounds. You just hope that someone will come very quickly, figure out where the break is, and put it back together. But it’s not like holding your breath underwater. In my case, there’s no breath left in my body. When I exhale, the breath is gone.

Becoming completely dependent on others is a terrible adjustment to make. One doctor at UVA was the bane of my existence. She came in at all hours of the day and night to poke and prod. She would also talk to me as if I were 3. Finally, I couldn’t stand it anymore. I yelled, “F—you, I’m a 42-year-old man. You treat me like one or don’t come in this room again.”

When I would finally sleep, I’d be whole again. I’d go off and do wonderful things. I’d be riding again, or I’d be with Dana and Will, or I’d be in Maine, or I’d be acting in a play. Then suddenly I would wake up and look at the upper-right-hand corner of my room and see the screen with all my vital signs going across it—my heart rate, my blood pressure, my blood-oxygen-saturation levels (SATs). And I’m lying there all too alert, just staring at the numbers on this screen. Little purple beeps going along. I’m thinking: I’m tied to all of this, and I can’t get free. I won’t be able to fly, won’t be able to sail, won’t be able to ride, won’t be able to ski, won’t be able to make love to Dana, won’t be able to throw a ball to Will, won’t be able to do a f—-ing thing.

And my eyes. I was afraid to have the bed turned away from the monitor. I became terrified if I went below about 97 percent. I thought, Oh, no, the SATs are going to drop, I won’t be able to breathe, I’m going to die.

Three weeks after the operation, Reeve began to think about rehab facilities. Wanting to be near home, he settled on the Kessler Institute for Rehabilitation in West Orange, N.J. On June 28 I was taken to Kessler. I no longer needed to be in intensive care, but I still required a great deal of attention. I was emotionally fragile as well. Kessler is a first-rate institution—light, open, and spread out among lawns and trees—but it is still a place for the ill. I looked around and saw nothing but green walls, linoleum floors and damaged people. I had a hard time realizing that I was going to spend quite a long time in an institution devoted to the disabled. I couldn’t accept myself as one of them.

But little by little, I began to emerge from my isolation. I started to visit the other patients, and soon they came to visit me. Acceptance of your condition is an essential first step in rehab. Ordinary functions are now completely different. For example, every couple of nights you need to take a shower. The prospect absolutely terrified me: “What if something happened to the vent in the shower? What if water got into the trach or the tube from the ventilator to the opening in my throat?

Finally, after stalling for a week or two, I agreed to try it. Dana was with me, and she literally had to walk into the shower with me and stay there, just so I could see her and talk to her. I’m not sure what my deepest fear actually was, but my condition made me feel open to every imaginable terror.

An aide named Juice got me through it. My first time in the shower, as I lay on the stretcher still very frightened, Juice said, “You think you got it bad? One time we had a lady here who had a spinal cord injury, and the way she got it was, she was on the porch of her house and her dog went into cardiac arrest. So she started to give mouth-to-mouth to the dog. She closed the dog’s mouth and was breathing into his nose. She was so worried about the dog that she forgot where she was. She fell off the porch and broke her neck. The dog died anyway.”

I laughed so hard that tears were streaming down my face. All sense of propriety and any compassion for this poor woman went out the window. The worst part was that the story was true, yet I nearly went into convulsions from laughter. I felt guilty for laughing, but somehow I think it helped me accept the idea that life is more unpredictable—and even more absurd—than any of us can imagine.

Getting permission to stay longer in rehab was a major victory in our ongoing battles about insurance. During most of my stay at Kessler, Dana and I had to spend a tremendous amount of time writing passionate letters, fighting for reimbursement for medical necessities. The company even refused to pay for a backup ventilator. Their argument was that if the vent failed, I could be kept alive by a nurse or Dana using an ambu bag while another ventilator was brought over from the supplier’s office in Hawthorne, half an hour away. But the person on call for such emergencies might live in another town, as far as an hour away. And of course if the vent failed while I was out of town on a speaking engagement (my major source of income), I would be left in an impossible situation because you can’t talk while you are being “bagged.”

Over the next couple of weeks—it was late fall—Dana and I made arrangements with a home-care nursing agency for 24-hour-a-day nursing, plus a staff of aides to lift me in and out of bed and do work around the house that I would ordinarily have done myself. I also had to come to terms with the fact that because of the danger of a pop-off or a sudden vent failure, I would never be able to be alone again, even in my own house.

After nearly six months at Kessler, Reeve was sent home in time to celebrate Christmas with his family.

As I began life at home in early ’96, I was reluctant to make any trips; not only because they would be mentally and physically challenging but because I was not eager to be seen in public. A real turning point came in February 1996, when the producer Quincy Jones asked me to make a special appearance on the Academy Awards.

As soon as I hung up the phone, it dawned on me that I had just agreed to appear live in front of two billion people, in a wheelchair, breathing on a ventilator, and with no way of knowing whether my body would remain still during my five to seven minutes onstage. I rolled into the kitchen and told Dana what I had just agreed to do. One of the things I love most about her is that she gives instinctive, honest answers to even the most difficult questions. She immediately said: “Do it.”

Every possible consideration—hotel rooms, security, vans and a private jet—was extended to me and Dana and our large staff of nurses and aides. Several times I considered backing out, but the part of my personality that likes challenges finally won the debate. I knew it would be risky, but if I spasmed onstage I planned to ad-lib some line about wanting to dance—feeble perhaps, but a way to let the audience know I was all right.

As I rolled into position onstage at the Dorothy Chandler Pavilion, I went a little too fast and bumped over the threshold of a doorway. Just what I’d been afraid of. Miraculously, my body didn’t move an inch. I felt I was “in the zone.” My name was announced, a curtain went up, and I was revealed center stage in my chair. I looked out at a sea of friendly faces. I felt truly embraced by the audience.

The Academy Awards appearance gave me the courage to accept the many public engagements—giving speeches, visiting rehab centers, lobbying in Washington for more money for biomedical research—that have now become such an important part of my life. But another completely unexpected benefit came out of the Oscar adventure. During my stay in Hollywood I entered buildings through garages, kitchens and service elevators and met cooks, waiters, chambermaids and maintenance crews. Many of them said they were praying for me. Others looked me right in the eye and said, “We love you, Superman. You’re our hero.” At first I couldn’t believe they meant it. Then I realized that they were looking past the chair and honoring me for a role that obviously had real meaning for them.

At home, my schedule begins at 8, when a nurse and aide come in. The nurse counts out my 20 pills, which I take in one swallow of cranberry juice. Some are vitamins, some are to help control my spasms, the rest are to keep my bladder from shrinking and to maintain the proper functioning of my bowels. I treat myself to a cup of coffee, which I drink all at once from a straw. Then we begin the painful process of moving my body from the position I’ve been in all night.

My joints and muscles are frozen, and I can barely turn my head because my neck is so stiff. I sleep with splints on both feet to prevent foot drop; if the tendons and ligaments are not flexed and are allowed to atrophy, it will never be possible to stand or walk. There are splints on my arms, too, which keep my fingers in a natural position. Otherwise they would clench into fists and ultimately never straighten out.

Once everything is removed I am rolled onto my back. But my body rebels no matter how gently they try to move me; my arms and legs flail wildly, and my chest tightens, making it difficult to breathe. The nurse turns on the oxygen that is always ready at the bedside. Because my muscles are still strong, it often takes the full weight of both the nurse and the aide to control these spasms and force my body to lie still.

Then the nurse holds down one leg. while the aide stretches out the other one, first working it almost 90 degrees out to the side, then pushing my knee up to my chest, then straight up, and finally doing the “frog”: pushing the knee from side to side in a bent fashion. All the while the nurse is looking intently for any red spots, which are almost always caused by some kind of pressure: the heel of a shoe, or the outside of a knee pressing too tightly against the wheelchair. If these pressure sores aren’t immediately given proper treatment, serious problems can develop very quickly.

The working of my muscles typically takes about an hour. Then I’m given a sponge bath from head to toe. The bandages around the trach are changed, and new dressings are applied to my ankle and at the site of my superpubic catheter. By this time I’m ready to be dressed. Because my clothes have to be put on while I’m still in bed, I particularly hate days that end with a black tie gala. These events are definitely worthwhile, but since my aides are available only for morning and nighttime care, on formal occasions I have to dress for the evening at 9 in the morning.

Even on days when I can stay home, getting dressed takes time and, more important, the ability to accept not being able to do any of it myself. When two people have to roll you back and forth in order to put on your underpants at age 45, it’s a difficult lesson in patience and acceptance. I pick out my wardrobe. Finally I’m ready to be lifted into the chair. The entire ordeal of getting up can take as much as three hours.

When I’m not on a tight schedule, I always do some kind of exercise as part of the morning ritual. We keep a chart of each day’s activities so that every muscle group is worked equally. Apart from the physical benefits, I have found that exercising the body helps me focus on the future. The very real possibility that an injured spinal cord can be repaired is a testimony to the dedication, perseverance, compassion and skill of a few great minds. The least I can do is try to match their dedication.

After exercise, I eat a light breakfast of cereal or a piece of toast with tea, and occasionally an omelette to keep my protein levels up. The minute there is a lull in the action, my three assistants come in armed with faxes, letters, messages and the appointment book. Business that involves the American Paralysis Foundation, the Christopher Reeve Foundation or political activity in Washington gets top priority. We also try to answer as many requests as possible from the spinal cord community. When I can’t attend an event, I often record a video message to be played at it.

I try to finish the workday by 5:30 so I can spend time with Will, and with Dana if she’s back from her appointments and auditions in the city. We eat dinner at about 6:30 or 7 o’clock; usually fish or red meat with spinach, broccoli or salad, which I need to promote healing of any skin breakdowns and to maintain my overall health. After dinner Will and I race around the driveway if it’s not too cold. My wheelchair is no match for his bike, even if he gives me a head start. But I love the fact that he enjoys beating his dad, just like any other kid.

When we’re at home, I generally go to bed at 9:30, which is very much against my nature. When I was on my feet, I never went upstairs until 11:30 or midnight. But now I have to go in early because the process of putting me to bed takes nearly two hours. A nurse and an aide share the workload. First they take the legs and the left arm off the wheelchair.

Then the aide gets a firm grip on the canvas lifting pad that remains underneath me at all times and positions himself to carry my upper body. The nurse gets a grip under my knees. On a count of three they lift together and set me down gently (most of the time) on my bed.

Next comes the process of undressing me, which I have finally come to accept. Often I listen to music or watch TV so I don’t have to think about being taken care of like a baby. Once my clothes are off I’m given another sponge bath, and every other day they wash my hair. About once a week I’m transferred onto a special plastic chair and treated to a proper shower.

After I’m clean I choose a T-shirt to sleep in, and I decide on the number of blankets, depending on my temperature. Because the connection between my brain and the nerves in my spinal cord has been disrupted, my body frequently responds inappropriately. People around me might be dropping from the heat while I’m asking for a space heater and more blankets. Almost every night I wake up at 4 in the morning feeling that I’ve been placed in a broiler.

Once I’m settled in bed, the aide stretches all my muscles again. After 12 to 14 hours of immobility in a chair, this is a great relief and one of the highlights of my day.

When the whole regimen is over, Dana joins me in the narrow bed, and we spend time together until we say good night and she has to move to her own bed beside me; there isn’t room for both of us in mine. By now it’s nearly midnight. I take my “sleepers”—a Benadryl tablet and a mild sedative. I hate having to take any kind of drug at bedtime, but without them my body would spasm during the night. Within a half hour I’m dreaming, whole again and off on some adventure.