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.

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?

Learning What It Means To Inherit The ALS Gene

ALS is not a fight you can win. It is not like cancer that can go into remission, it is not like blindness or Muscular Dystrophy where you still have a life. If you are a fighter it is like having your hands tied behind your back while you are beaten to the ground. It is like being sentenced to death and buried alive because your mind still works just fine. And the end is the worst. In my family it only takes about a year until your breathing is stilled. In the last months you are trapped in the belly of the shark.

Like Huntington's, it is a disease of the damned. There is no treatment - there is no cure. When you get ALS there is no hope. There is nothing you can do to prevent it. You can take good care of yourself, you can be fit and strong like Lou Gehrig, it makes no difference. You are finished.

Without any hope of beating it, it is probably best not to know that you have inherited this gene. Of course, when you do know, your mind works on what steps you can take to avoid this disease but there are none and you go a little mad with the idea of that.

So the question you must ask yourself is how do you live a happy life with the knowledge that your next step may be the one that falters or the glass you drop on the kitchen floor may be your first symptom?

ALS is torture to the mind even though it is the body that degenerates. That all the power in this belongs to God and I have no tools to prevent the eventual onset of symptoms is pure torment. I am angry - I want a fair fight. At least a judge and jury before I am sentenced. God give me any impossible task and if I succeed may I not please live?

We live for today but we dream of the future. What we do today lies squarely in the context of our plans for tomorrow. Close your eyes because this tomorrow is a pit of darkness.

Everyone dies. But we are programmed for survival. Life is sacred. We struggle to overcome disease and disability. It is not in our nature to easily accept death. Although I do not yet have any symptoms, I have lived in fear for many years. I am learning, I am loving, I am planning a future. I am slipping through the woods at dusk, quietly, lightly, as though I am being hunted by a predator from the pit.