Let me confess straight off that I was not eager to read this book: The Best Seat in the House: How I Woke Up One Tuesday and was Paralyzed for Life by author and TV writer-producer Alan Rucker. I had been recommended as a reviewer, and felt obligated to honor the recommendation.
After all, as a former medical director of a rehabilitation hospital and current director of a national rehabilitation research program, I was an appropriate reviewer for a book about paralysis. Nonetheless, I dreaded reading it, fearing yet another polemic against “the medical model,” or worse, a depressing personal recital of illness and disability. I have now read the book twice and found it to be thoroughly engaging. The reader is engaged because Rucker is an interesting man, and because of his humor, his frankness, and his impressive honesty.
Rucker tells the story of his attack of transverse myelitis, hospitalization, convalescence, and, most important, his coming to terms with disability. His story reminds me of Thomas Mann's 1924 novel, The Magic Mountain, about a young German man's seven years in a tuberculosis sanatorium, and also of Harvard microbiologist Bernard Davis' story about his year of confinement in a TB hospital. In Rucker's case, the periods of denial, negotiation, grief, and acceptance took years but culminated in a re-examination of his life and values. He was forced to confront issues that he could no longer escape and emerged an emotionally healthier and far more creative person.
Physicians may find this book useful for several reasons. For one, Rucker's story reminds us that we play only a small part in our patients' lives, but that our words can have long-lasting impact. Asked early in the illness for a prognosis, his neurologist wisely replied, “Somewhere between FDR and perfect.”
The story also describes the difficult emotional issues patients face with spinal cord injury: loss of control, loss of dignity, loss of sexuality. In general, the medical professionals Rucker encountered along his journey come out pretty well. Still, I can't help thinking about where our medical system might have done better for him and where I might have done better for my own patients.
Rucker received the best of medical treatment and was then transferred to a state-of-the art rehabilitation unit. He received extensive training in learning to perform activities of daily living, and the staff was obviously caring and did their best to educate him about paraplegia and preventative care. Then he was discharged home with outpatient rehabilitation and outpatient medical follow-up. We follow him as he goes home, attempts to re-engage with his previous life, fails, has a series of preventable medical complications (deep venous thrombosis and pulmonary embolism, pressure ulcers, and infections), becomes depressed, and somehow makes it through with support from an overly stressed family. I might add that this story, on the face of it sad and depressing, is told with wit, humor, and without complaint.
SPECIALIZED SYSTEMS OF CARE
Could his caregivers have accelerated his journey through the stages of grief? I doubt it. Could he have been provided with a comprehensive system of care that provided more support and prevented his secondary illnesses? Definitely. Given the number of subsequent hospitalizations and outpatient treatments he received for these complications, his care would actually have cost less through a more comprehensive system.
The Community Medical Alliance in Boston, for example, has pioneered a nurse practitioner-driven, specialized system for the care of quadriplegic patients. The system emphasizes home visits by nurse practitioners with rapid specialty consultation as needed. Had a system like that been available for Rucker, his caregivers would have had an opportunity to evaluate his situation at home on an ongoing basis, and might have prevented some of the complications.
Perhaps, also, the opportunity to visit Rucker more frequently and longer could have provided a better picture of his life to his physicians than the brief snapshots we obtain in the consulting room. Spinal cord injury, including transverse myelitis, is relatively rare, and few insurance carriers have either the experience or economic incentive to develop specialized systems for the care of these patients. Other countries have already adopted a creative approach for severe chronic medical conditions. France, for example, has established specialized systems of care for patients with chronic respiratory failure. This system involves regional tertiary care centers, secondary hospitals with “step-down” units, and home-care teams coordinated by pulmonary specialists. Perhaps we will incorporate such systems in our next attempt at health system reform in the U.S.
INSIGHT INTO ILLNESS
I think this modestly slim book will be useful for patients and physicians (don't we all become patients eventually?). It is one person's story, but Rucker tries to make his experience useful to others with disabilities and to the general public. Indeed, Rucker points out, “As I turn around and see this great horde of baby boomers behind me, 76 million strong, slouching toward AARP status, I think that maybe I'm just a little ahead of the game in the life-altering-illness/change-your-ways sweepstakes.”
Not all of us have Rucker's talent for writing, but he reassures all of us who fear that when our time of trial arrives, we may not have the courage to deal with it gracefully. There is much straightforward wisdom in the book, some of it painfully acquired, all of it delivered with style: “When you are no longer a hero and no longer a victim, what are you? You're damn close to normal and it doesn't get scarier than that.”