Five Years Of ALS

Five years. That's how long it's been. Five years and one day, really. Five years since I sat in the sterile hospital room, David and Elizabeth beside me. Five years since the young neurologist in residence changed my life forever with three simple letters. "We think you have ALS." After a mere moment to absord the news, she asked me if I knew what it meant. I did. I asked "How long?" Then, on that day five years ago, she said "36 months we think." They thought wrong.

Most people with ALS die within 36 months of diagnosis. So, for that young neurologist, that was her best guess. Their expectation is that I would be like most others. My legs were already pretty much gone. The disease would progress as quickly through my arms and into my breathing muscles, along the way stealing my ability to speak, eat, and drink. They thought I had "regular, plain old everyday ALS.

They were wrong.

One piece of advice I took to heart on that heartless days was from the senior neurologist, the one who confirmed the diagnosis before wishing me luck and releasing me from hospital. He said "If there is anything you want to do, do it sooner rather than later." I didn't know it that day, but I wanted to roam about the country, the continent, the world. I wanted to travel. I have always loved to travel, and, according to the neurologists, I didn't have a lot of time left to do it.

They were wrong.

They got almost everything wrong except for the path of progression. They learned from me, over time, their guesses getting better as I got worse. ALS has moved slowly up my body, stealing everything it can along the way. I has stolen my legs, my core muscles, my energy, my dignity, even my money. Today it is stealing my arms, my facial muscles, my shoulder muscles, my neck muscles. It continues to destroy my core muscles, even though much of their strength is already gone.

But I am still here. Most, some say as much as 90%, of ALS patients don't make this milestone, this five year mark. Pretty much everyone who was diagnosed around the time I was has passed away, or gone to mechanical methods to prolong their life, something I will not do.

I am not sure if I am happy or not about this extra time. Torture is not pain, or loss. Torture is time, time spent knowing what is coming next, but not knowing for sure when it will come. The time has made the torture of progression longer, giving me more time to feel the losses. It has also given me more time to live, to love, to laugh. It is a true mixed blessing. I'm not really sure how I feel about it. It just is. Just like ALS.