In the grand scheme of things, having ALS means very little to me. It is simply the mechanism by which my body will most likely die, something which is going to happen sooner or later anyway. To be sure, living with ALS is not insignificant. But relative to my existence, it’s only a detail. What keeps me awake at night is what comes next, what will happen when my body finally surrenders. And I’m terrified the answer might turn out to be: nothing.
I have avoided this topic in my writing, in my life, for too long. It is at the core of what I think about every day. Does God exist? Why am I here? Does my life have meaning? Is there life after death? These questions have plagued me since I was very young. I feel like a paradox. Even though I’m a skeptic about God, I simply cannot wrap my brain around the notion that I could cease to exist when I die. Perhaps it’s a defense mechanism for self-preservation. Or perhaps it’s an innate sense of a life after this one, of a soul within me that will go on.
For all my heady pondering, I haven’t actively done much to develop my faith and spirituality in the past several years. Easier to focus on daily tasks and avoid the stress of existential dilemmas. I kept telling myself I had years to figure it all out, that I’d do it when I was sitting around a nursing home with time to spare. I no longer have that luxury.
My faith has oscillated a great deal. I was raised in Baptist and Lutheran churches. No doubt my personality and moral values were shaped by those experiences. I reached the zenith of my faith during my junior year of high school after I attended a retreat called “Teens Encounter Christ." It was a life-changing experience. My belief in God was strong and I thought it would stay that way. But it faded. For my part, I didn’t foster the relationship very well. Yet I always felt as though God didn’t work hard enough either. Maybe I was just blind to the messages.
Envy is considered by many religions to be a sin. If so, I am as guilty as any human being alive. I am enormously jealous of those with faith. I desperately want – I need – the foundation that belief in God can provide. I stress about it every day, to the point of depression. A strong faith would make the weight of my dying virtually disappear. Sure I’d still be sad and frustrated, but I could live in peace knowing that my life had value, meaning, and purpose.
I recognize that questions can be healthy. I’m not an advocate of blind faith. But I value the notion of faith so much that I’m hesitant to discuss my skepticism with anyone. I don’t want to spread any doubt, and frankly, I get scared of what others will think of me. I’m most familiar with Christianity, but suffice it to say that I’m open-minded to aspects of all the major religions. Some might call it sacrilege, but I really don’t care much about the details. Ultimately I want to know the truth of course, but I’d take belief even if doesn’t turn out to be true. Kind of like I’d love to believe that my ALS will stop progressing. Even if it doesn’t, my daily worry would be reduced dramatically.
I am not content being a skeptic. I may have put my search on hold for awhile, but my quest has a renewed sense of passion. And urgency. Ironically, I believe we can’t really know the entire truth – not like we’d prefer to while on earth anyway – and that makes this life wonderful and precious.
So maybe my illness is an opportunity to find some inner peace. A peace I may not have found otherwise. Even if I never make up my mind once and for all, I’m hopeful you and I will meet again in the afterlife, in heaven, and all our earthbound worries will be long forgotten.