Thursday, October 11, 2007

What Do You Do After You've Planned Your Funeral?

One day I'm talking to my younger brother on the phone (who also inherited the ALS gene) and he's telling me that he's gone to seek professional counseling from a psychologist because not a week goes by that he doesn't think that he has ALS symptoms. It is hard to imagine what it is like to have this on your mind all the time and how sad it can make you feel. Of course I asked him what advice the psychologist had offered him. Her idea of a coping strategy was to have him imagine that he put the "problem" in a file folder and lock it in a file drawer and just never open it. I was disappointed and angry. This was no help at all! He told me that she started crying during their session and at least that part I could understand.

We're discussing all of this and I tell him that I've recently made all my funeral arrangements and organized everything and I proceeded to share with him some of the details. Apparently this was more upsetting to him than I was aware of because he blurted out "You shouldn't be planning your funeral! You should be planning a life!" (For a guy who was an emotional train wreck - this was pretty clear thinking.) It sounds obvious but believe me, up until then, it wasn't.

I was nearing my 46th birthday and up to that point no one in my family with the gene had lived past the age of 46 so it seemed natural that I would be preparing for my ending days. What he had just said was maybe the smartest, most loving thing anyone had said to me in a long time. I began to think intensely about his words and the more I did, the more sense they made.

I started out with some basics. I thought to myself what if by some huge miracle I made it to 50? And what if looking back from that point 4 years from now, what will I wish I had done with that precious time? Realistically, if that happened I would surely regret spending it just waiting for the end to come. I would need to chase after something MUCH bigger than the monster that was chasing after me. And it would need to be a challenge, a goal that would focus my energy and leave little time for worrying. It needed to be a serious commitment and time well spent. I wanted to be able to help myself and others who suffer the effects of knowing that they have inherited a fatal gene and I also had a burning question that I wanted to research: Is there a psychological component or trigger for the initial onset of ALS symptoms? So I decided to pursue a degree in psychology and I enrolled at Indiana University Southeast. Within just a few short months I was attending classes and my great adventure had officially begun.

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?