Chapter 2: The Diagnosis (Part 1)
The saga opens in very strange times. An unanticipated mystery unfolds…
It’s hard to say exactly when this all started. Looking back, I can see the signs more clearly, especially knowing what I know now about this disease. But in truth, I never wanted to breathe life into a possible ALS diagnosis. I denied it all the way till the day the doctor confirmed it. And as much as I’d like to, I’ll never forget that moment for as long as I live.
My first symptom reared its ugly head during a fitness consultation with a prospective new client. This was after the shelter in place, so we were all wearing masks. I was stuttering and tripping over words periodically. I apologized and blamed it on the mask.
I continued to notice this slurred speech while at work, particularly at the end of a long day. I honestly thought that wearing and talking into a mask all day was changing the way my mouth was working. That makes sense right? I mean, you’re constantly getting the mask in your mouth, etc. I even googled this supposed new phenomenon that I assumed others were having. Nothing.
When a client finally took notice and mentioned it, my heart sunk. She thought I was either drunk or had had a stroke! Something was definitely going on.
The unusual started to become commonplace.
I lost the ability to sing. I was really frustrated by this as I love to sing and play guitar for my daughter. I blamed it on vocal nodes that must have been caused by the harsh growling sounds I make when chasing my daughter around the house with a teddy bear.
Every muscle in my upper body started twitching... constantly. I blamed it on lifting weights and too much caffeine.
I even noticed that I was having difficulty swallowing liquids if I drank too quickly. But I just blamed that away as well, because I’m always in such a hurry.
2am one night, I woke up, compelled to finally google these strange new symptoms. And down the dark path I went. Like ticking off every line on a check list, I soon found myself staring at a page about ALS and sharing all the symptoms. All the symptoms except for one: weakness.
Weakness being the defining hallmark of ALS, I took this to mean that I was in the clear. I’d love to tell you that I fell back into a restful sleep after ruling out what I could now only describe as the worst imaginable disease, but I could not unsee what I’d seen. Nor could I shake it. I’d never known anxiety like this. My life would soon become a waking hell.
Some may say that their life is divided into before and after their ALS diagnosis. For me, it was more like before and after that morning I first googled “ALS”.