Still Me (42 page)

Mr. Richter and his family helped to bring this bill before each new legislative session for more than two decades, only to be met by resistance from members who felt that no special interest group should benefit from state funds. Considering that 47 percent of all spinal cord injuries are caused by motor vehicle accidents, and that these injuries are not suffered by any special interest group, I found the opposition's logic to be indefensible.

During the last week of the spring legislative session, I was contacted by supporters of the bill who asked if I could help. I called Governor Pataki, with whom I had developed an excellent working relationship during my tenure as president of The Creative Coalition. On Friday, June 23, 1998, the last day before the session adjourned, the governor went down to the floor of the Senate, held up a pen, and told the startled members that he wanted the bill to pass before the end of the day. The result was unanimous passage in both the Assembly and the Senate less than two hours later. On July 14, in a ceremony at the NYU Medical Center attended by the Richter family, doctors, patients, and the general public, the governor used that pen to sign the bill into law.

While this was considered a significant and long overdue victory, the $8.5 million cap that was imposed on the bill meant it could provide only a small contribution to the amount needed for an all-out attack on spinal cord injury. Advocates for research agreed that the budget for the National Institutes of Health and the National Institute for Neurological Disorders and Stroke had to be dramatically increased. In the early 1990s both institutes operated on a combined budget of approximately $12.1 billion. Two to three percent increases were approved each year to keep up with inflation. But by 1995, under the leadership of Congressman John Porter in the House and Tom Harkin and Arlen Specter in the Senate, the Budget Committee agreed to a 7 percent increase. Even with this level of funding, only 22 percent of the grant proposals submitted to the NINDS to study Parkinson's, Alzheimers, MS, and spinal cord repair could be approved. It is hard to estimate how many valuable scientific proposals have gone to waste.

While the 7 percent increase for fiscal 1998 was definitely an important step forward for biomedical research, many advocates felt that the ultimate goal should be to double the budget of the NIH. An increase from $12.1 billion to $24 billion at first seemed (at least to me) an impossible objective. But when I considered that the Pentagon has a $49 billion annual research budget related to warfare, the idea of NIH
²
(as the initiative came to be called) seemed more plausible. I called my friend and ally Senator John Kerry and wrote to the president that the Pentagon's budget was excessive and the necessary funding for the NIH could be accomplished by a simple transfer authorized by the Budget Committee. I also wrote a letter to every member of the House Committee, outlining the profitability of research. I pointed out that pharmaceutical companies throughout the country would be the primary beneficiaries, now that new therapies for a wide variety of medical conditions were emerging so rapidly.

Ultimately, the doubling of the NIH budget in fiscal 1999 did not pass. However, a $2 billion increase was approved. This leap from 7 percent to 15 percent more funding was a huge victory. It meant that more grants could be supported—up from 22 percent to 48 percent—and that the $49 million allocation for spinal cord research would jump to $70 million annually. With the deficit under control and the announcement of a budget surplus in the fall of 1998, hopes run high that the goal of doubling the NIH budget can be achieved incrementally over the next few years.

There were other developments during 1998 that helped me feel that forward progress was continuing (even though I wished everything would move faster). After a long, drawn-out search, Dr. Oswald Stewart, a colleague of John Jane's at UVA, accepted the position of director of the spinal cord team at the Reeve Irvine Research Center. The APA grew from a $1 million organization to a $5.2 million one that Martin Schwab described as the most important private sector group in the field. The consortium idea, which brought eight of the world's best scientists together to collaborate in the search for a cure, proved extremely successful, as the researchers shared their discoveries instead of competing against each other. While I knew perfectly well that the day I would stand up and bid farewell to my wheelchair was still years away, it now seemed reasonably certain that day would come.

Even as I immersed myself in research and politics during late '97 and early '98, I longed to find a project to act in or direct. The creative side of my personality felt seriously neglected, and while I derived considerable satisfaction from working on disability issues, my desire to resume my career was overwhelming. Suddenly it seemed to me that
In the Gloaming
was ancient history, even though only a year had passed since filming in the fall of '96. I wondered what, if anything, would come next.

Then a wonderful acting opportunity materialized, much like the cavalry arriving over the hill to save the endangered settlers at the last minute. ABC bought the rights to Hitchcock's 1954 classic,
Rear Window
. The idea was not to remake the film but to use it as the basis for a new production that would highlight the courage and resourcefulness of a severely disabled individual. And we hoped that the TV film would develop into a thriller with an even greater intensity than the original.

Part of the concept—and for me, the justification for the project—was to spend the first half of the story showing the main character in rehab and starting to rebuild his life. The average viewer, and even many disabled individuals, is not aware of the equipment available for exercise. One way to educate the public is to produce a documentary on the subject. However, even a well-produced and highly informative piece shown on PBS or the Discovery Channel would reach only a relatively small audience. To demonstrate rehab equipment within the context of a compelling story on a major network would be much more effective. In one evening, twenty to thirty million people, drawn in by the anticipation of a good thriller, would also be exposed to a life that is unfamiliar and perhaps even intimidating to them. In addition, our version of
Rear Window
would give us the opportunity to demonstrate the latest assistive technology. Once again, the average viewer would be exposed to the latest devices that promote ability within a disability and allow the patient to lead a more normal life.

In the movie, we showed a voice-activated computer that can do everything from taking dictation to accessing the Internet, making phone calls, and running an in-house intercom system with speakers in every room. The wheelchair we used was actually my own. The sipping straw that allows me to control movement of the chair by mouth can also access the computer and provides me with the same commands as if I were seated in front of the screen. Even the elevator that Jason Kemp has installed in his Soho triplex can be summoned from the wheelchair. Special sensors open the doors and keep them from closing on him if he goes in or out by himself. And Jason's safety is assured at all times, because the locks on the front door and the elevator can be controlled by the computer as well.

You might expect me to have had all these systems installed in my own home, which is fashioned after an eighteenth-century farmhouse. I am somewhat embarrassed to admit that when we renovated the first floor to make it accessible and added a ground-level bedroom, the only high-tech device that we adopted was a voice-activated computer. I rarely even see it, however; it lives downstairs and is used almost exclusively by my assistants, Michael, Sarah, and Rachel. I had learned to use the computer when I was at Kessler, but I soon found that I could dictate five letters to Sarah in the time it would take me to complete one using the microphone at the computer. Of course, I am very lucky to have such capable help in the office downstairs. Not everybody has three assistants to handle all the paperwork and phone calls that have to be dealt with every day. I'm also lucky because I trust them all completely. Each time a Fed Ex, UPS, or U.S. Mail truck pulls upto the front door, the cartons of mail and packages go straight downstairs. I am only aware of what is brought up to me. (For all I know, they could be withholding important documents, keeping precious gifts, and pocketing donations.) Occasionally, an essential piece of mail doesn't make its way up to me, which causes great confusion when the correspondent calls to follow up. But generally everything runs smoothly down in the engine room and Dana and I are grateful that the charm of our house has been preserved.

By contrast, there was nothing in Jason Kemp's home to be preserved. It was constructed by our production designer Stephen Hendrickson and his crew in an abandoned building that was once home to the Otis Elevator Company in Yonkers, New York. Three weeks before the first day of shooting, there was nothing to see but brick walls and bare floors. Within that time, they created the exercise room, the bedroom and walk-in closet, the kitchen/eating area, and Jason's workstation. As we began filming in late July, the art department moved across the street to another abandoned building and created a startling array of spaces: an artist's studio and living quarters on the ground floor, three apartments above, and an art gallery at the top. When the set decoration was complete and the rooms began to fill with people, a fascinating little world emerged that anyone would enjoy peering into. Some critics commented that no one across the street seemed concerned with protecting their privacy. However, when I lived on West Eighty-third Street during my years on
Love of Life
, my fourth-floor walk-up had a little terrace in the back, and I had as clear a view of my neighbors as Jason does. I never had to worry about making plans in the evening; I could just grab a beer, park myself out on my deck chair, and enjoy the show. I never became a certified voyeur, but I did find it fascinating to watch everyone go about their business as if no one were watching.

We were scheduled to begth shooting in late Jane but were delayed until the end of July because the original script submitted by Larry Gross had missed the mark and was considered unsalvageable. Steven Haft, one of the executive producers on the film, found out that Eric Overmeyer, one of the head writers for
Homicide
, was available and interested. He was quickly hired to create an entirely new screenplay. We spent two days together outlining the plot, and he rapidly assimilated my ideas. I suggested we begin with a car accident, then follow the main character through rehab, his return home, and the beginnings of a working relationship with a new female associate at his architecture firm.

Eric absorbed all of this and then crafted the mystery of a psychopathic sculptor and his bizarre relationship with twin sisters. The details I had given him about the workings of my ventilator and the fragility of the hose that enables me to breathe helped him write a climax that many viewers found terrifying.

We had several moments during filming that caused considerable anxiety among the cast and crew. These episodes were entirely my fault, as I planned them in advance. In one instance, we rehearsed the scene in which the villain, Thorpe, slices half of the hose at the back of my vent—where the damage would be nearly impossible to find—so Jason would slowly suffocate. I waited until the scene was lit and the camera moves perfected before suggesting that we allow Thorpe to actually cut the hose.

Suddenly the set became unusually quiet. Our director, Jeff Bleckner, came over and asked if I was absolutely sure, because the take would have to continue for at least two minutes after the hose was damaged. I assured him that this would not be a problem; if I became uncomfortable, I would signal the nurse on duty by sticking out my tongue and she would attach a new hose in seconds. Jeff considered this for a moment, then pulled out his cellular phone to call my head nurse Tracy at her home. She told him that if I wanted to shoot the scene that way, it was fine with her.

When Jeff returned to the set, I explained that it would be very difficult for me to pretend I was breathing on my own if I was actually getting air from the vent—the rhythm of my breathing would be out of sync with the machine. At this point Jeff agreed to shoot the scene my way. (I think most directors are secretly pleased if they can get the most realistic shot, even if there is some risk involved. Whenever I volunteered to do my own stunt work in the
Superman
films, no one rushed in to object.)

Ritchie Coster, who played Thorpe, was truly frightening in the finished film, but on the set he could not have been more modest and considerate. It amused me that every time we were about to film a scene in which he was truly dangerous and psychopathic, he would quietly approach me for reassurance that his behavior would not cause me any real distress. But when the cameras rolled he often added spontaneous actions that were completely in character and made him even more menacing. In one instance, after slicing the hose, he crouched down in front of me and mocked my efforts to breathe. He looked and sounded like a dying fish. In response the expression of humiliation and anger on my face could hardly be described as acting.

There were many scenes, however, that required a very demanding level of acting. The media, as well as many of my friends, made much of this being my first appearance in front of the cameras in nearly four years. I blithely responded that I didn't foresee any difficulty, explaining that having been an actor for about twenty-seven years, performing again should be like getting back on a bicycle. This rather arrogant attitude must have surprised people; after all, to act well you need to practice—to “work the muscles” just like any other performer or athlete. But I have found that I no longer experience nervousness, even if I'm giving a speech off the top of my head to two thousand people. Perhaps the accident and everything I've been through in the last three years have caused this transformation within me; in the past, I often suffered real inner turmoil before public appearances. But now I think my brain has made a significant adjustment; the message I get is, ‘What have I got to lose?” I wish I had been able to experience that attitude years ago; it allows you to relax and enjoy an exhilarating sense of freedom as you perform.