Read Online Nothing Is Impossible by Christopher Reeve - Free Book Online
Authors: Christopher Reeve
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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 × 2”: he believed that because it was classified as an “orphan condition” the National Institutes of Health would not fund spinalcord 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 asleepupstairs. 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
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 × 2”: he believed that because it was classified as an “orphan condition” the National Institutes of Health would not fund spinalcord 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 asleepupstairs. 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
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