Back in my 20s, I had a friend—let’s call her A because her name started with an A. And let’s call me L because my name starts with L. Who were we? It’s hard to label things, but Bohemian chic comes to mind.
We joked, ironically, about starting a company called Big AL’s Trucking. We envisioned owning a fleet of trucks and running a business. It was just a silly, lighthearted joke—a running gag.
Little did I know that, since Big AL’s Trucking never came to fruition, it would manifest into the Big ALS for me.
Who would’ve thought that this hyper, determined woman would one day face amyotrophic lateral sclerosis? That at the still-young age of 50 (because isn’t 50 the new 30?), I’d be staring down a diagnosis like this.
Seriously, I turned 50—an age I dreaded. The weeks leading up to my birthday were filled with a deep, suffocating depression. Then, one day, my hand just stopped working.
It was strange. Sudden. How could I lose function like that in a single day? I sat with the loss, trying to process it, knowing it couldn’t be age-related. After all, I’d been going, going, going for 50 years. This didn’t make sense. The weakness wasn’t minor—it was profound. I couldn’t turn the key in my car. I couldn’t tie my shoes. I couldn’t even switch my electric toothbrush on and off.
So, I called my doctor. I assumed it was a nerve issue, maybe related to the chronic scapular winging I’d dealt with for years. The doctor examined me, took a detailed clinical history, and ordered an EMG to see what was going on with my nerves. He suspected the problem stemmed from my brachial plexus—the network of nerves coming from my neck and leading down my arm. He noted that it didn’t seem to involve just one nerve, and I didn’t have the common symptoms of carpal tunnel syndrome.
But here’s the thing: as a woman, I’d been conditioned to assume nothing would show up. That it was probably psychosomatic. Even though the weakness worsened with exercise or activity. Even though it was unmistakable. No more downward dog or push-ups for me.
The EMG—the one I assumed would show nothing—came back with diffuse findings. Whatever that means. The physiatrist said I needed to see a neuromuscular specialist. She mentioned that my test could indicate motor neuron disease.
Disease? That didn’t sound minor. I had never heard of this diagnosis.
The neuromuscular doctors were thorough. My clinical exams were, by my interpretation, off the charts. They said they needed to test for mimics: HIV, hepatitis, Lyme disease, heavy metals, and autoimmune disorders. Never in my life did I imagine wishing for something like MS or HIV. But now, I was begging. “Please. Anything but this.”
They ordered a follow-up EMG for my leg. Unfortunately, all the lab work came back negative.
I sought a second opinion at another top hospital. They reviewed my previous notes and conducted their own physical exam. Their findings also pointed to motor neuron disease. I asked, “But what else could it be besides ALS?”
The doctor, a top neuromuscular specialist in Boston, shook his head. “Nothing.”
By this point, I’d already started to come to terms with the possibility. The initial shock had passed, but hearing it reaffirmed felt like a hammer to the chest.
Let me stop here for a moment. This is absolutely terrifying. And besides some twitches, exhaustion, and hand/arm weakness, I don’t even feel that different—at least for now.
But I can’t imagine a worse diagnosis. My kids—oh, my kids. I’ve been essentially solo-parenting. My husband travels constantly for work, often gone for weeks or months at a time. One of my kids has their own complex health issues, and no one else knows the ins and outs of supporting them. And my sweet 11-year-old—how can I tell them?
Beyond my family, my house is not accessible. I live two hours from Boston, where my specialists are. I have limited means and financial insecurity. How will I keep working as my body deteriorates? I’m unprepared. This diagnosis is unfathomable, incomprehensible.
Almost three months to the day of my first EMG, I traveled to Boston for further testing. Three hours. Three neuromuscular doctors. Dozens of needles and electric shocks. An ultrasound of my tongue. Finally, they sat me down.
To summarize, they said: “These findings, along with your physical exam and symptoms, indicate ALS.”
I knew this was coming. I’ve been reading about ALS for three months. But now it became definitive, no more testing needed. Five neuromuscular doctors all agree.
Now what?
Luckily, I’m the determined type. I pushed to be seen as soon as I knew something was wrong. Most people take a year or longer to get a diagnosis, I got it within six months. Now, I can start medications that might slow the nerve damage. But what does that leave me with? Ninety percent of people with ALS die within a few years. I’m literally 50 and fucked.
How could I have possibly known that joking about Big AL’s Trucking would lead to the Big ALS a quarter of a century later?
And where’s my imaginary character Tom to pop in and say, “This has all been a terrible mistake”? Wouldn’t it be great if I could conjure up a cure?
In the meantime, I’ll keep processing, crying, planning, and getting on with life. I’ll have to eliminate so much from my house, sell furniture, donate truckloads, and find an accessible home closer to my specialists. And when they bury me, please fill my casket with all the things that bring me joy. Sure, it’ll be heavy. But I’m not ready to give anything up just yet.
