How does it feel to jump from a helicopter flying at 11,000 feet, accelerate in free fall, discover that your parachute won't open and hit an asphalt runway at 90 mph? Gregory White Smith '73 thinks he knows: it feels a lot like being told that you have three, maybe six months to live.
Smith is the author of Making Miracles Happen, which chronicles his own journey through the medical establishment and those of people like Darren Weber, a Special Forces sergeant who lived through a terrifying parachuting accident in 1991. Weber broke about every bone worth having (some in several places), bruised his lungs and tore his liver. Several surgeries later, though, he's alive, which no one thought was possible, and the only residual effect of his accident is a slight limp.
Smith, too, is alive, also unexpectedly. Ten years ago last Christmas, when a brain tumor diagnosed a decade before turned malignant, Smith was told that he would probably not live to the end of the coming year. That night, having smashed metaphorically into a runway of his own, he gorged on sweet rolls and thought about dying in his mid-30s.
Then Smith turned a corner. He seized on "probably." Smith decided that no doctor could know for certain when he or anyone else would die but could only deal in generalities and probabilities, like a weather forecaster, and he determined that if it were possible to beat his disease, he could find the way. What follows in Making Miracles Happen is both the story of Smith's travels and travails in search of treatment and the recounting of many similar stories of others who refused to accept "no hope" for an answer.
Smith writes that people with catastrophic illnesses have a few things in common. Foremost is the sense that they are, indeed, in free fall. Receiving a frightening prognosis, Smith says, is "having your life yanked out from under you. People describe it in different ways--`powerless,' `fragile,' `vulnerable'--but it comes down to this: suddenly, the one thing you thought you had complete dominion over, your body, is in open revolt; and the one thing most important to you, your future, is in somebody else's hands." Inculcated with the idea that "a doctor is a doctor is a doctor" (a notion Smith says is encouraged by medical associations), we listen to one prognosis, perhaps two or three, and then we stop looking for answers. Smith contends that those patients who succeed in finding doctors to care for them properly are the ones who can push beyond their long-held boundaries and see that some doctors are more experienced at some procedures than others, some have better facilities, some are working with experimental treatments that won't be written up for years but are available now--and some are simply more talented than others.
It takes persistence, time and money to pursue every possible avenue for treatment. The people Smith writes about have, at perhaps the weakest point in their lives, fought insurance companies and employers, traveled great distances from doctor to doctor, even paupered themselves--not to mention suffered through grueling medical treatments--in order to find one "yes" among a chorus of "no's." Most commonly, Smith says, they have an "angel" by their sides--a family member or friend who sticks with them through the process and helps them find reasons to continue. Smith's "archangel" was his mother, although he also got a lot of aid from his father and sister and from Steven Naifeh, Smith's life partner and the co-author of the book. Not everyone has this kind of help, he says, and that takes a toll. Smith writes: "Robert Knutzen, the president of a support group for people with pituitary tumors, says simply: `I sit and cry for the ones who have no support.'"
Smith's book is designated "Medicine/Inspiration" by its publisher, and his story is inspiring. Ten years after his diagnosis he is relatively well, though the tumor is still there. It is clear that if he and Naifeh, his parents and some concerned doctors had not been so dogged in their search for treatment, Smith would be dead. But, while he does say that taking control of one's illness and working hard to find good doctors are the keys to recovery, he is careful not to imply that people who sicken and die are, somehow, to blame. Sometimes, he says, a person is lucky enough to be in the right place at the right time, among medical personnel who know how to treat certain kinds of trauma, for instance, and have the chance to do that in time. Sometimes, nothing can prevent a patient from dying. And sometimes, a person decides that living with the results of treatment is not really living at all. With every new treatment, Smith says, he had to weigh his choices, to ask himself, for example, "Would I pursue a treatment that would leave me sightless or speechless, or steal my memory? Would I fight for life at any price?"
Smith says we tend to admire people who go through a long ordeal and can say, "I'm still here," with the emphasis on "still." "What the experts are saying," he writes, "is that patients need to put an equal emphasis on `here'--I'm still here--and ask themselves, `Where is "here"?'" If "here" is acceptable, a place you want to be alive in, fine. If not, that may be where you draw the line and refuse further treatment.
Smith takes the question one step further. He asks whether, after a certain procedure, he will be able to say I'm still here. "No matter how brave and furious the battle, no matter how tolerable the quality of life when the struggle is over, if the disease or the treatment changes me in the process, makes me act like someone other than who I am, if it `coerces me out of my identity,' to borrow Seamus Heaney's phrase, then someone may be `still here,' but that someone is not `I,'" he writes.
Smith's cancer turned virulent again late last year, and he currently is undergoing treatment. But he deals in the book with the question of rejoining the battle. How does it feel to live through a terrible illness and its treatment and to know that the illness may return? How does it feel to know that one day, you may have to decide to stop fighting?
Lucky, Greg Smith says. "Lucky with my family, lucky with opportunities, lucky with friends, lucky with Steve, and, now, lucky with life. The trick, of course, is to make the most of that luck. Shakespeare was right: ripeness is all."