Dr. Thomas B. Graboys  
Author of Life in the Balance  

Life in the Balance:
Excerpt from Chapter One

My Days

Nothing is second nature to me any more. No task is too simple, no activity so routine, that I can do it without forethought. Is the glass right side up, or will I pour orange juice all over the counter again? When I leave the kitchen to walk to the bedroom, how will I get there? At the party tonight, where will the stairs be, and how will I navigate them? Will I be able to join the conversation? Or will I be standing in a corner, nearly catatonic?

For social gatherings, I have what I call my cassettes: a repertoire of conversational riffs on various subjects that will allow me to enter the conversation and, with luck, appear to be a reasonable facsimile of the old Tom Graboys. Can I pull it off? Can I act the part and mask the reality of dementia? One of my goals in social situations is to have people go away saying "You know, Tom seemed pretty good." It allays the anxieties of friends and colleagues when you look and sound good, even if they cannot fathom the effort it took to muster such a performance.

Without my cassettes, entering a group conversation is like trying to get on the freeway traveling at twenty miles an hour while the traffic is rushing by at seventy. Slowness, an all-encompassing mental and physical slowness, has descended upon me. It is not going to lift.

* * *
Holding on. Much of my life, today and every day, is about holding on to what I've got—or, more precisely, holding on to what is left. There is still happiness in my life: my wife, my children and grandchildren, music, and, now that I can no longer practice medicine, the time to explore new interests such as indoor cycling and writing. There are even days when the "old Tom" emerges, usually briefly, and I feel like my old self, only to awake the next day and come face to face once again with the reality of life with a progressive neurological disease.

For now, I still see the light; but on the other side of this knife-edge ridge I walk, there is darkness, so I hold on. I have discussed this with my wife and adult daughters. There is a point beyond which I do not wish to go. That is the day I can no longer control my bowels and my bladder, a common problem for patients with advanced Parkinson's disease. To me, this is the ultimate regression. I have been in too many hospital wards and nursing homes where patients with severe dementia are lying on the floor or sitting in their own urine and feces, oblivious to the world around them. I have seen the end of this road, and I won't go there.

I am determined not to let Parkinson's, which has stolen so much, steal my dignity. That is what I am really holding on to. Dignity. It's why I exercise, practice yoga, and play the drums. It's why I shave every day. It's why I dress well and make sure I look my best. As a cardiologist with a predominantly geriatric patient population, I often noted in my files when a patient started looking unkempt, a look that signaled that he had surrendered, been beaten down, or no longer cared enough to pull himself together. I no longer save my best clothes for special occasions. Now, every day is a special occasion.







Copyright © 2011 Thomas B. Graboys, MD