Thursday, October 4, 2007
How I Got To This Place
Years ago my family was among many others who particpated in research that attempted to locate and identify the specific gene that was responsible for familial ALS. In spite of my extreme aversion to needles, I mailed blood samples to Duke University and later to Northwestern University in Chicago. In exchange for our participation in this research we were notified that in the event the gene was isolated, each participant would have the opportunity to be informed as to whether they had inherited the ALS gene. Of course I wanted to know. I wanted to know that I did not have the gene. Really, I did not think much beyond that. I just wanted to disperse this dark cloud and get this behind me so I could get on with my life. I expected to be told I did not have this gene. Always the optimist. Other members of my family were sure they had inherited this gene and, as it turned out, the individuals who felt this way did not. I can tell you that the news I received was a shock. I began having nightmares, I quit my job, I began to drink heavily. Why wouldn't I? I have been watching my family die off one by one since I was old enough to understand the concept of death. My grandmother, my uncles, my mother, my brother, my cousins and now already their children just barely into their 30's. My terror could not be measured. Within a few short months I crawled out of that bottle because trying to kill myself would just be like beating ALS to the punch. I grew stronger but I lived in abject fear. I discovered that life, no matter how short, was to be cherished. I learned that there is so much bullshit in the world and that I had an innate meter for measuring it. (Often the needle in that meter went into the red zone.) I learned to appreciate the kindness of strangers, the intimacy of family and the shortness of time on this beautiful earth that all humans face. Still though, I had to find a way to face my fears. I had to chase after something bigger than the Monster that was chasing me. What could that be and how would I do it?