And Vicki isn't the only one. People are forever helping me in small ways—making things easier for me is how people respond to my illness, helping me as I fumble to put on a seat belt, for instance, or as I try to slip my feet into the foot straps on an indoor spin bike.
Every day, I take my own measure: Is it getting worse? What will the future bring? Can I hold on? Can I live my life with the current level of dementia? How much loss can I accept? When these questions threaten to take hold of me, I use yoga discipline and literally try to move them aside; for the questions are unanswerable, the answers unknowable.
After the existential questions, the one that persists most cloyingly is whether this disease has taken from me the last remnants of being a physician. Throughout my adult life, my identity has been inextricably linked with being a doctor, a caregiver, a healer. Today, my stethoscope, the accoutrement that more than any other identified me as a physician, is gathering dust, and I know I will never wear it again. Unable to attend to patients, I had to ask whether holding on—by keeping current with the major journals, attending grand rounds, or appearing at hospital meetings—made sense. Even sitting still, a task made difficult by muscle cramps brought on by Parkinson's, was making it impossible to sit through grand rounds and meetings. Besides, would I merely be clinging to my unrecoverable past, a sad shadow of my former self? Did I have anything left to contribute? Am I a real doctor any more? At times, I feel guilty that I can no longer care for the thousands of patients who were depending on me. Accepting that I can no longer practice puts me face-to-face with the reality of who I am now.
Nearly every day, I see—or talk by phone with—friends, family, and colleagues who ask, "How are you doing, Tom?" They mean well, of course. These are people with hopes for me, and they want me to know that they care. But each time the question is asked, I am reminded of how much has been lost. What can I say to this question? "Fine," is my usual reply, but I am not fine. I would rather find out how they are, how their kids are, what's happening in their lives. I want them to see that Parkinson's has not made me self-absorbed. I want the conversation to show them that I took a huge neurological hit and that I'm still standing. But the normality that almost all people with a serious illness crave is forever beyond my reach.
To hold on, to try to maintain the status quo, I constantly monitor myself for signs of decline. But I am hardly passive, and I do not accept the inevitability of further decline, even though I know, intellectually, that it is likely. I believe that I can at least slow the pace as long as I don't surrender, and writing this book was one way of not surrendering. Though I could not write it without help, the intellectual engagement required by the process was a way of exercising mental muscles. To keep my body fit, I exercise regularly. Spinning classes have boosted my energy and my sense of well-being, as has yoga. And though I deeply regret no longer being able to practice medicine, I now have more time to focus on my own well-being.
Despite the myriad symptoms and problems that I have to struggle with every day, I am optimistic that I can keep my situation stable. I believe this because I have to believe it. I have to believe that tomorrow can be as good as today. That is the most that I hope for.