A Little Background
Many people I have interacted with over the years don’t know what ALS is. They know the name; some even participated in the ice bucket challenge. But very few know what it looks like day to day. How it steals the body’s functions and life. So, I’d like to talk about my diagnosis story. I’ll talk about more of my ALS story in future posts but it’s good to start at the beginning. ALS is tricky to explain, and the journey from symptoms to diagnosis can be trickier.
How do you explain ALS without getting technical? Think of your nerves as roads and your motor neurons as mailmen carrying letters from your brain to your muscles. For some, the roads are damaged and the letters can’t arrive. My roads weren’t damaged. My mailmen went on strike. One by one, my motor neurons stopped working. My brain is still sending signals; my nerves are still working, but the carriers have stopped carrying.
A Few Bad Decisions Later
In July 2020, I noticed a small limp in my right leg. I convinced myself it was cheap shoes, long hours, and a poor diet. By September, my hands were weakening, my fingers were curling inward, the limp was worse, and I had random, violently painful cramps in my legs. Still, working 14+ hour days meant I didn’t rush to a doctor like I should have.
When I finally went, my doctor ordered basic tests and referred me to a neurologist. Since neurologists book months out, it was the new year before I got in. That doctor ordered more tests, and when I brought up ALS, he said, “You’re not showing signs of ALS. Don’t worry.” After the blood work came back negative, he referred me to a hospital with a “more robust” neurology department. I later found out he was a month from retirement. Make of that what you will.
I waited three more months for an opening with the new doctor. Now, I don’t want sympathy. I want to make sure nobody puts these things off. Don’t be stubborn or stupid like me. Just get it done. If you’re married to someone like me, push them to not be themselves just once.
Not the Outcome I Wanted
In June, I finally saw the new doctor. He ordered every test he could to make up for lost time: blood work, genetic testing, and some unusual tests like electromyography. That’s where they stick long, needle-like electrodes into your muscles and run electricity through them to measure how your nerves respond. It’s not super painful, but it is very uncomfortable. It’s also vital because it helps show whether the problem is nerve damage or signals from your brain.
After months of tests, the doctor said he didn’t think it was ALS. You see, there are several motor neuron diseases, and because my speech and swallowing were okay, he thought it might be Progressive Muscular Atrophy. But he couldn’t rule out limb-onset ALS. We’d have to wait and see.
Two and a half years later, my speech started slurring. Today, I’m lucky to manage a hoarse whisper. My swallowing declined rapidly. I went from eating Thanksgiving dinner last year to needing a feeding tube placed in April. I’d give up a lot just to taste food again, but I can’t even swallow spit without the risk of choking, never mind a piece of turkey.
The Cruel Realities
It’s an odd feeling when a doctor hands you a death sentence. We all know, somewhere in the back of our minds, that we’re going to die. But it’s usually a distant, nebulous “someday.” For me, that understanding shifted from a far-off “someday” to something just around the corner. I’m now six years into a disease with a five-year life expectancy. Death feels like something looming in the shadows just over my shoulder now.
It was worse for my family. How do you tell your wife your golden years are cancelled; time to prepare a will? Could you tell your kids you don’t know how many Christmases are left? No parent wants to hear that they’re going to outlive their child. But everyone puts on a brave face for your sake while the earth crumbles beneath them. And your heart breaks because their hearts are broken, and there’s nothing anyone can do.
Not My Will
Sometimes life can feel unfair; like a thief stealing everything we hold dear. And if this was all we had, I’d agree. A cold, indifferent cosmos and a slow march to the grave is no life worth living. But hallelujah—this isn’t all there is. These few years on earth are nothing compared to eternity with our Creator. My wife and I will spend countless golden ages basking in His glory. My kids and I will praise our Lord in person for giving us a reason to celebrate Christmas. A time is coming when no parent or child will ever outlive the other.
Because of sin—because of our rebellion—we introduced suffering, pain, and death into this world. Not God. Us. We did it ourselves. These present struggles are hard. They’re physically, mentally, and emotionally taxing for me and everyone around me. But they’re nothing compared with what’s coming for those who believe. If God wants me to use this disease to explain sin, our fallen state, and point people to Him, who am I to argue? It’s an honor and privilege to do His will. I’ll proclaim His perfection to my final breath. And if I cross that finish line praising His holy name, that’s a victory.
Here’s the Good News
Friends, let’s praise God for His goodness and mercy. We corrupted perfection. Worse, we threw away relationship with a perfect, holy, loving God. But instead of dooming us to the hell we chose, He made a way to restore what we threw away. I would’ve paid any price for that. But I didn’t pay anything. He did. He paid it all.
Thank You, God!
Final Question: Have you ever had a moment when “someday” suddenly felt much closer than you expected?
“I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.” Romans 8:18 (NIV)
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