April 22, 2006


In psychology class we had the opportunity to write about what we would do if we became severely handicapped in an accident. We were able to decide what severely handicapped would be and then we were asked to explain why we chose to do what we did. As I talked with my family, friends and teachers about this topic, it has become apparent to me that I define who I am only partly by my physical abilities. This might be different I were a piano player, model, sports player or actor but I’m not. I don’t play sonatas, walk down runways, scores touchdowns or play in movies. If I do they are for friends or for fun. I walk, drive, write, catch, reach, type, touch, hold, see, hear, taste, feel and smell with my body. These are by no means insignificant activities, but overall I think the lost of one or even multiple numbers of these systems would not give me immediate reason to end my life. When I think about who I am and what helps me to find meaning and purpose in life, it is not one of these things. It is my brain.
My brain is not everything, but it helps me to perceive, understand, reflect and account for everything around me. I record my thoughts for the first time and recount them time and time again. I talk with friends by use of my mouth and lungs, but my words come from an understanding of language and thoughts which stem ultimately from my brain. My hands touch, but my brain determines when I should and when I shouldn’t. It perceives sadness and happiness in my friends’ eyes which my own eyes allowed me to observe. It analyzes the sounds which my ears hear, and it then predicts and rationalizes based on those sounds and past experience. My brain is like the central processing unit in a computer, a hub for all the other activities of my body. It is the center around which all the other units function, and like a computer, all the other hardware and software become useless without it.
As a species, we are becoming very talented at replacing limbs, organs and physical function in handicapped individuals. We can transplant hearts, arteries, eyes, kidneys, blood, legs and arms. We even have a universal sign language which replaces the need to speak words to communicate clearly with individuals. All of this innovation has in fact challenged the word handicapped. Individuals pushed aside a hundred years ago for being useless are now on the forefront of every major academic and social scene. Being handicapped, I have heard said before, is a state of mind. Maybe that is all that really matters. If we can control only what we think and what we do, then it seems we are making unprecedented strides in the later. We are able to do things never done before, whether handicapped or not, and thus we have little excuse. We can achieve great heights and become great people by using our physical talents and blessings to serve others, lead others and teach others. Christopher Reeve, as the recent Foundation for a Better Life billboards read, was as much a Superman as a quadriplegic as he was as a fully physically functional actor in the early nineties. Maybe even more so.
So if what we can do is so rapidly advancing, that leaves us with what we think. We can control that maybe most of all and yet it frightens many of us to no end, that we could lose it all in a simple accident or in the contraction of an incureable disease. One day we might be a renowned Ph.D. in Psychology and the next day we are being studied in a psychology book as a textbook-case of severe mental illness. If we were to lose our minds somewhere along the way, would we still want to keep going?
For me the question is a matter of degrees. It seems simple to say I would want to die if one-hundred percent of my brain lost all function. However, it is not simple at any degree of loss below that. If I had eighty percent function in my brain, for example, I might be left with the ability to communicate with others and perceive their feelings, thoughts and behavior. I could still be myself in that capacity and help others significantly in their lives, even though I still might not be able to control my own defecation. The clear line gets fuzzy and my role in this life becomes even more unclear as I consider the possibilities. Am I here to help others, and if so, how do I understand when my time is up? I may see myself as useless and in fact still be quite useful to many, many people. I might be able to speak on behalf of the Special Olympics and become one of their poster children without ever knowing it. I might become another great advocate for stem cell research in the line of great advocates from Christopher Reeve to Michael J. Fox. I might do these things, or I might lay in a bed a sad shell of what I had been. To be or not to be is a matter of being alive, and a person can be living and not be alive.
In my living will, I have written a message to my family and friends which tries to make my future decisions for me. More than to explain the dispersement of what I possess in material items, my message is there to explain how I want people to disperse after I die. I define what death means to me and what future decisions I want made on my behalf; including all actions to be taken by other people reflecting on my legacy and all fruits of my labor which are to be honored and continued after my absence. I have written it in a way that tries to make things clear, but I recognize that it will likely change as I get older. It is an attempt to understand my life and what I desire to be important about my existence, but it also reflects on what I think other people need in their lives such as compassion, peace and love. It is not perfect, but it is where I am.