So I opened the floor to questions, and I got a couple. I hope you guys know you can always ask me questions and I’ll try to answer them as honestly as I can. The usual disclaimers apply – I speak for myself, not for everyone with ALS, your mileage may vary. Hit me up in comments (anonymously if you like) if you can think of anything else you’d like answers to.
Q. How does progression work? Random parts or a clear path with variable timeframe?
Everyone’s experience with ALS is different. Though according to Dr. Goslin, the rate of progression tends to be steady. If it’s a fast progression now, you can expect a rapid decline until the end. If it’s slow and steady (as mine is) it will remain that way. ALS doesn’t go in fits and starts, apparently – it’s a constant rate. I’m losing the ability to walk, but it’s not as though one day I’m going to wake up and my legs just don’t work. They’re going to fizzle out slowly.
Some people start with the speaking/swallowing difficulties, some people’s starts in the hands, some peoples’ start in the hands and feet at the same time. Some people die within months of learning something’s wrong, some people go for years before being diagnosed because they just figure they’re clumsy or getting old. This is the main reason I can’t speak for everyone with ALS. Our feelings and how we deal with the disease are incredibly varied, but nothing so varied as how the disease manifests in the first place. It’s entirely unpredictable except in how the story ends.
Q. Does it hurt? Not trying to do things but just in general?
The disease itself doesn’t hurt at all. That’s one of the things I was actually lamenting during my diagnosis – nothing hurt, so I couldn’t point to any one thing as the problem. The only pain that ever came as a result of ALS were the occasional muscle cramps in my legs, but they’re rare now that I’m taking neurontin to calm the twitches. Kneeling now hurts because there’s no longer that cushion of muscle protecting me – so my bones are pretty much pinching my skin against the floor. ow. But no, nothing hurts as a direct result of the disease. I don’t feel the neurons burning out. My only clue that it’s happening are the random fasciculations and the progressing weakness.
Q. I know you’re Christian – how does that affect your thoughts? Does it give you something to hold onto or is your faith shaken?
H’oboy. Well. I’ve always considered myself Christian in that I believe in the teachings of Christ. It boils down to – Be Kind. Take care of those who can’t take care of themselves. Believe that you, too, will be cared for. Every major religion has some variant of the Golden Rule. I was raised hardcore Evangelical Christian, and I still hold a lot of the same faith, but I don’t believe in the Bible as a literal record of events, and ..yeah. It’s complicated, and changing. I believe in God, but I don’t believe He’s necessarily involved in the minutiae of our lives. I really don’t believe He cares who we’re having sex with. I believe it is in us to be kind and rise above our animal nature, and that brings us closer to Christ, closer to being like God.
My faith (or whatever it is you want to call this) is unshaken, because I don’t think God was necessarily involved any more than God is involved in the changing of the leaves in Fall. I don’t believe that God will fix this except through the minds of brilliant scientists who will figure out a cure. I think things happen for a reason, but sometimes that reason is that you’re stupid and have made terrible life choices. And sometimes that reason is that your DNA is twisted and you were doomed from the get-go. I have ALS for a reason, and that reason is ..whatever it is that causes ALS. I don’t think I was given this disease as a challenge of faith or a chance to show grace, I think it just happened because sometimes people get ALS. We’ll figure out why some day. I’m not going to wake up magically free of ALS, and that’s okay. It’s not God’s fault. It’s not anyone’s. It’s just how the universe manifests itself.
Though I admit, I WAS cursing the universe a bit when I got shingles on top of all of this. Just a little. Cause…dang, man. Really?
Q. Are there really neat treatments upcoming that hold out some hope?
Stem cell research is going to be the key. If we fix this at all, it’s going to be through stem cell research. It’s what shows the most promise. Recent tests have allowed some early-stage ALS patients to recover a little bit of strength. And while some of that is controversial (spoiler alert: not all stem cell research involves embryos), I also believe that if the naysayers were diagnosed with ALS tomorrow, they’d probably be willing to inject fetuses straight into their spinal column if they thought it would keep them alive.
I don’t think we’ll find a cure in my lifetime – no, that’s not entirely true. We might find a cure in my lifetime, but it will never get through the FDA rigmarole in time to reach me before I die. My only hope is through participating in clinical trials, which will carry some risk, but even if that kills me, it provides a data point. Which is precious. And I really do believe we’ll figure this out. Some day ALS won’t be a death sentence, but I don’t think there’s any chance of that happening with me. And that’s okay. We’re working on it, it’s getting attention.
Q. What are your happy thoughts?
I am loved. Seriously. I am so fucking loved. It’s amazing. I would NEVER have thought in my whole life that I had this many people who cared so deeply for me. Any time this stuff gets to me, I can make myself calm down with the knowledge that there are people who would do anything to help me.
It’s a powerful thing, to know you’re not alone. And I know there are going to be days when that knowledge saves my life.