How bad is ALS? It’s one of only two diseases where you get moved right to the front of the government line. While that is a good thing from a practical perspective, it is most definitely a very bad thing. PALS immediately qualify for Medicare and disability. This is because we’re totally fucked. Do not pass go! Go directly to jail! We’re from the government and we’re here to help!
Now, you may not be convinced that my statement is entirely accurate or maybe my sometimes flowery language leaves some of you skeptical. Well How about this? The ALS Association, arguably the world’s leading expert on ALS, has pledged to do “whatever it takes “ to make ALS “livable “ by 2030. Treatable? No. Curable? Big nope! They’re shooting for livable, 8 years from now. 8 years from now for a disease that has an advertised life span of 3 to 5 years. That doesn’t really show a lot of confidence or rally the troops. Does it? Honestly, I question who ever thought that was a good marketing idea. Yeesh! Totally cringe. Sorry. But this is the reality we pALS are up against.
Physically, ALS is a slow, creeping shutdown of movement and motor function. Sandy Morris nailed it when she quoted Shell Silverstein’s wonderful poem, I’m being eaten by a boa constrictor. If you’ve never heard that poem I encourage you to do so. You should also question how you missed such an awesome book. Imagine being slowly eaten away. It’s almost imperceptible at times but its march is persistent. Everyday I get a little bit weaker. Once simple tasks like brushing teeth become more difficult but still manageable until, one day it’s gone. Along the way there are tricks and tools to try delaying the inevitable. Larger grips. Maybe switch to an electric toothbrush? Yet the last time eventually arrives. Swallowed whole , alive, eaten by a boa constrictor. Oh heck, it’s up to my neck! Hahaha! Funny. Not funny. . .
Now apply this decline to absolutely everything. Picking your nose? Scratch an itch? Eat? Wipe your bottom? Either ask for help or sit and suffer. At this point, 3 1⁄2 years into ALS and I’m completely dependent on others for almost everything. If you put me in a corner and left me alone I probably wouldn’t survive more than a few days. But no one puts baby in a corner.
Modern science and technology, along with God’s Grace and unselfish love of family and friends, are the things keeping me alive today. I’m either in an adjustable bed or my wheelchair 24/7. As my hands and arms weaken I am transitioning to using switches controlled by my head to adjust and drive my chair.
I get 95% of nutrition through a feeding tube inserted into my abdomen. Eating and drinking are almost impossible and my foolish insistence to keep eating by mouth risks me choking. I can still make sounds but I communicate by using an infrared eye tracking technology with an iPad to speak and type. I can’t even imagine not having these tools available to me. By definition I’m already on life support. I still have to decide on a tracheostomy, but not today. I credit NurOwn forthat. . .
A hoyar lift and sling and my modified minivan round out my gear. The hoyar lift is required any time I need to move from bed , wheelchair, toilet or shower. When I’m finished with the toilet I
have to be hoisted into the air so my bottom can be wiped and cleaned. A Scott ALS piñata. It’s so humbling, embarrassing and emasculating but I have no choice. I’ve peed on myself countless times. Scharted too. Am I the first person to make a computer say Sharted? Anyway, It’s horrible. Fortunately I am surrounded by a team that loves me and doesn’t give a damn what others think, allowing me to still get out into the world on a regular basis. All of this is very expensive and time consuming. I am so grateful.
I do get asked often if I am in pain. So far no, at least not much anyway. I know others who suffer terrible pain. I’ve been so lucky. There is a myth that ALS is painless. I have yet to meet a pALS that says different. Maybe the myth comes from not being able to speak? Maybe? Hmmmm? Did my Tobii just say hmmmmm? Hmmmmm?
The mental part of ALS is even more difficult, at least for me. You see, while the body seizes up, the mind, heart and a few other systems are largely unaffected. Sexual function still remains which is it’s own cruel joke. Pure fucking evil. Ugh!
So while all of this boa constrictor brunch is happening, the mind is alert and awake. Just me and my thoughts. What could possibly go wrong? Don’t worry, I’m going to tell you! .
I’ve been peeled down like an onion. Emotional Layers have been stripped away leaving only the most raw and vulnerable parts. Of course this takes place in the most public of ways, assuming I don’t hide my head in the sand or wall myself off. Everyone has a front row seat to my emotional nudity. Well, physical nudity too, but that’s a longer discussion.
Honestly I don’t know how I’m not severely depressed all the time. I know I work hard to not be. That’s a part of it. Defiant denial helps a lot. I’m surrounded by the best people and I actively avoid the negative when I can. I also microdose psilocybin. I switched from antidepressants over a year ago because I didn’t like how they made me feel. I’m not recommending this approach but it works for me.
I know I’m holding out for hope and a miracle. I mean, who knows? Right? I do spend time reading and following wisdom’s like Victor Frankle, Ekhart Tolle and Tony Robbins. I took up Steve Gleasons recommendation and downloaded the Waking Up meditation app. Steve is certainly making the best of a bad situation so it’s good enough for me. His motto “Living Impossible” sums things up pretty well for me.
I’ve also turned to Jesus. I’m not here to convince you of anything. You walk whatever path you choose. My faith has been a mess since I was a teenager and I’m far from figuring things out. But being locked in my head I can either talk to myself or chat up God. I’ve lost my ability to throw anymore rocks and really the past five years have just pushed me down on my knees so hard, so many times. Both figuratively and physically. Life is trying to tell me something so I started listening. Sometimes it feels like a submission or a reigning in but I’ve learned a lot. It’s good. . .
I will also say this. The more I’ve opened my heart and mind to Jesus Christ the better my life has become and in the most unexpected and amazing ways. I thought I was coming to Oklahoma to die. But nope! So far I haven’t felt this alive in years. I’m grateful that I have been afforded the opportunity to repair and rekindle friendships and family relationships I’ve neglected. I’ve also made countless new friends and I’ve even found love again. I’m happy.
While I continue to try to hold on to whatever physical ability that remains, the diet of my mind has been my priority because there are still opportunities for personal growth there. The true me, if there is such a thing, is still within my control so I put my energy there. Simple as that.
I see other pALS doing the same thing. Contributing where they can, going back to school online, making art, being an activist etc. it’s wonderful and inspiring to witness. Squeezing every last thing out of this precious life. As it should be.
“They say life is what you make it, and if you make it death, well rest your soul away” . Mother Lovebone wrote that. Most underrated band of the early 90’s. Check them out sometime.
Alright my pALS, that’s enough about me. How are you doing out there? If you’ve had ALS for a while you’re probably listening to this and shrugging your shoulders hahahaha. Been there and done that. If you’re newly diagnosed I’m sure you’re still trying to pick up the pieces of your recently grenaded life. It’s a very scary time with lots of uncertainty. We’ve all been there. We’re with you.
I guess I would encourage you most to reach out to other pALS. Facebook is a good place to start. Twitter is interesting but has mostly reputable information and good intentioned people there. I finally started attending ALS Association get-togethers and it’s been helpful to me. I know the ALSA gets a bad rap from a lot of people. The criticism, at least for the national level, is mostly warranted. They’ve underperformed for pALS, but that’s a different episode. My local chapter in Tulsa has been great. My Sacramento chapter was awesome too. Hopefully they’re finally making some changes. Only time will tell.
The first ALSA meeting I attended was in Tahoe when I was still highly functional. It was just me and Nic. Nic has had ALS for 19 years. At first I couldn’t even look at Nic. My stomach just sank. He was still walking but I’m not sure he should have been. Now, don’t get me wrong, Nic is a complete badass. Funny, stubborn, handsome, just like me. There’s nothing wrong with Nic except for a mild case of ALS, and maybe his sense of humor…
The reason I couldn’t look Nic in the eyes was because I knew I was viewing my potential future. I was afraid. So discouraged and defeated. But that’s why I was there, to face my fears. To look ALS in the eyes and measure myself against it. Man up, so the saying goes. I was uncomfortable and self conscious, over thinking everything. So I took a breath and forced myself to sack up and do what I came to do. I introduced myself.
Nic. Nic didn’t give a damn about anything. He was there to have a burger and deal with the business of ALS. He talked away and I didn’t understand one word of what he said. He said it anyway while I nodded along. I still have no idea how he ate that burger. His hands and arms were bent and crooked. He smashed it down and wrestled it into his mouth, along with the fries, until they submitted. He had some help. Nancy from ALSA Sacramento was there and it was clear they were friends. As the hour played out it became glaringly obvious to me that I have overestimated ALS and underestimated Nic and other pALS.
There is no doubt Nic is an outlier. He was diagnosed young, 25ish I think. But here was this guy living large and out loud. Living life with ALS. In Spite of it actually. I loved it. I’ve actually only hung out with Nic a handful of times because Covid, but we’ve had a good time each time. He’s shown me that living a quality life is still very possible but you need to scratch for it. He certainly has a great group of loving people around him. No doubt that is a big contributing factor too.
I’ve found the same thing in Tulsa, but now I’m in the veteran camp. I go to meetings and connect with the other olds. We Compare notes and share knowing looks with a smirk. I’m not the only one with a mischievous twinkle in the eyes, I just don’t hide mine well. I also see the newly diagnosed pALS and cALS at these meetings courageously looking around the room, trying to make a connection. My heart aches for them. I know that’s why I do what I do. I want them to see in me what I saw in Nic three long years ago. Life, perseverance, humor, confidence and defiance. ALS is hard but it’s livable now! Right now, at this moment!
I hope all of you have access to an ALS buddy. I’m grateful to have several. You also have to be a buddy too. No one can do ALS alone. You all know what I think, fuck ALS. It’s not an angry voice inside my head, just so you know, it’s the Tom Cruise from risky business voice! I’m positive that whatever I think Nic said , he meant fuck ALS too!
Besides, it’s only a mild case of ALS.
