Stage 4 Depression, Stage 5 Anger: Navigating the Limbo of an ALS Shadow

Once I got home from the doctor, it all started sinking in. After all the preparing for an MS diagnosis, it turns out I received a probable ALS diagnosis. It wasn’t even a for sure. It was just, "ALS is not ruled out." So, I was still confused, a little bit feeling sorry for myself, and angrier than ever.

If you’ve ever been handed a life-altering piece of news that doesn’t actually come with answers, you know that specific kind of vertigo. It’s like standing on the edge of a cliff, but instead of being pushed, you’re just left standing there in the wind, waiting for someone to make a decision for you.

I went to bed. And stayed there for a week.

The Week the World Stopped

With the behavior I was conveying, it was textbook depression. I slept for 20 hours a day. I barely ate. Everything around me was falling apart. I suppose it looked like I was giving up.

Looking back, though? I was fighting the urge to give up. I guess I was resetting. I had to take time to absorb a reality I never signed up for. A day turned into a week. But eventually, fighting back and hiding my emotions behind a mask, I knew I had to get up and pretend I was okay. I had too many people depending on me. There was no way I could just check out.

My next logical stop was to schedule a follow-up with the neurologist. I was hoping, naively maybe, that he would make some sense of this medical mess. More waiting. And with more waiting came more time to build up an explosive cocktail of emotions.

I was steadily declining since the first appointment, and I could clearly recognize the toll these doctor visits, and the sheer stress of the unknown, were taking on my physical health.

The Christmas We Don't Talk About

Coming up on Christmas 2012, I had been in the diagnostic grinder for about 10 months. For the sake of my story, I consider December 2012 the date I was "diagnosed." This was when they first said those three heavy letters out loud: A-L-S.

Sure, it would end up being made official much later. But if my first symptom showed up in 2009, and I later learned that ALS was brewing in my body long before the first symptom even manifested, using a single "diagnosis date" just doesn't make sense. It’s a continuum of decay.

By this holiday season, I still had all the heavy symptoms I’ve described earlier, no need to repeat the inventory of my failing body. But over that Christmas, I noticed a brand-new, deeply unsettling symptom.

I was watching TV one day when I suddenly couldn’t control my emotions. Out of nowhere, I started crying. If you know me, you know the truth: I’m usually a pretty guarded, cold-hearted, self-contained person. Uncontrolled weeping is not in my DNA. So this was a complete, terrifying surprise.

Luckily, I managed a clumsy workaround. I would start crying and instantly try to laugh it off. Just laugh through the breakdown. Nobody has to know.

Playing Hardball with the Healthcare System

Maybe your story goes a little differently, but this is mine.

By this point, I had already told my primary care doctor to fuck off. I was supposed to schedule with the neurologist next, but the deductible for the appointment was some astronomically crazy amount. Luckily, the neurologist’s office was at least somewhat accommodating and took the financial burden into consideration. When we contacted them, they suggested I have a second MRI before I see the neurologist again.

So now, I was officially scheduled for a second MRI exam.

Then my brain flashed back to my experience with the first MRI. I remembered how sick the contrast injection had made me. How that systemic sickness had lingered for weeks, and how I never fully recovered back to the baseline condition I was in before the injection.

I had to make an executive decision regarding my health care.

Fuck that!

There was no way in hell I was going through that toxic process again. The date for the MRI came and went. I ghosted the machine. When the clinic called to reschedule, I told them plainly: don’t bother.

I wasn’t worried about what the medical system would tell me next if I skipped it. I’ve always been the guy who accepts challenges, and bucking the system was just the next one on my list. I felt invincible in my stubbornness, completely blind to what was waiting around the next corner.

Little did I know, refusing that MRI wasn't just dodging a bad afternoon of nausea. It was the exact moment I stepped off the map entirely, and the consequences were about to surprise me in a way I never saw coming.