Laughing Through It: Finding Humor While Living with ALS

dancingwithalsandlife.blogspot.com

AI Comedy Club 

Let’s just get this out of the way: ALS is not funny.

Not even a little bit.

It’s tough, frustrating, unpredictable, and on many days, downright exhausting. But here’s something that might surprise you, life with ALS can still include laughter. Real, honest, sometimes snort-out-loud laughter. And no, it doesn’t mean you’re ignoring reality. It means you’re refusing to let reality take everything.

Because if ALS is going to show up uninvited and start rearranging my life, I might as well get a few jokes in at its expense.

Take the whole “dropping things” situation. Pre-ALS, I would drop my phone and think, Oops. With ALS, when I drop my phone or any other items suddenly it becomes a full-blown event. There’s the stare-down phase (“Can I reach that?”), the negotiation phase (“Do I actually need it right now?”), and finally the acceptance phase (“Cool, the floor owns it now.”). Honestly, if floors could talk, they’d be like, Thanks for all the free stuff.

Or consider the evolution of walking. At some point, what used to be a normal stroll turns into something that looks like a walking zombie! A wobble in the core and upper body, arms just dangling at my side, a leg with a right foot not cooperating and making a weird slapping movement on the floor and dramatic pauses. If nothing else, I have developed my own signature style. Runway models have nothing on this level of originality.

There’s the whole technology thing. Voice control assistants, communication devices, eye-tracking systems, things that sound like they belong in a sci-fi movie suddenly become part of everyday life. The upside? I basically have become a tech wizard. The downside? Frequently, my devices think I said something completely different than what I said in reality. Or people around me think I'm yelling at them, “Go home” or “Stop listening” which are voice commands to navigate my device since I can't use my hands.  I have numbers assigned to each of my apps to open them. When I say the number six the voice control keeps repeating sex instead of six? Creepy!! “Call Mom” becomes “Play polka music.” What?

Losing physical control of my limbs and appendages.  While trying to give a hug to my daughter's boyfriend, now my son-in-law, my hand lands smack dab in the middle of his crotch. I looked at him and said, “You still have time to get out of this situation, because if you marry my daughter, you own me as well!”  I quickly earned the nickname,  “Stacy slick hands!”🙌  I guess the situation didn't bother him too much because he still married my daughter.  A quick side note, I HATE that ALS took away my ability to give hugs, something I mourn constantly! Nowadays, I just need to embrace the hugs I get from others!  Especially from big D! Keep them coming!

Waking up one day, my left hand was in a permanent rock hands or I love you 🤟gesture because I lost control of my two middle fingers which are now bent down in the middle. Since I'm an 80s girl I thought how fitting to have a permanent rock hand! I'm concert ready at all times! Now, if I could only get my arms up to tease my hair again the look would be complete!

At a local restaurant/bar with friends the waiter gives me a nasty look and wants to cut me off because he sees my unsteady gait and thinks I drank too much. When in actuality I didn't have one spirit drink, only boring water.  There are T-shirts that say I'm not drunk I have ALS, my brother-in-law bought me one!

At the dinner table in the early stages of ALS when I couldn't reach the salt, my daughters would say, “Pass the disabled one the salt!”

Let’s not forget the well-meaning advice from others. People love to suggest things or make comments.

“Have you tried exercising? It will help to regain your strength”

“Maybe drink more vitamin water?”

“My cousin’s neighbor’s dog walker read an article about turmeric…”.     

“I found a miracle cure on Facebook, for only 10k”.                        

“I hope you have a speedy recovery.”                                       

“You don’t look like you're sick.”                                            

“I’m glad it’s not cancer.”                                                       

“At least you don’t have pain, right?”

At some point, I just have to smile and nod, or better yet, keep a running list and turn it into a bingo card. First one to get five in a row wins…absolutely nothing, but at least I get a laugh out of it.

And caregivers, my heroes, truly become part of the comedy club. There are moments where something goes hilariously wrong. Like recently, putting dinner on the table at the same time I lose control of my hand on my motorized wheelchair joystick. I ram and dump the table on its side with the entire contents including our hot piping meal.  My spouse says, “You just could've told me you didn't want fish for dinner!”  Or, like attempting a simple task that somehow turns into a 20-minute production involving adjusting my blanket, pillows, and a lot of “Wait, no—other left, pull it down, no up, a little more to the right!”  

And lastly, I should start charging admission fees for visitors because my house has turned into an adventure amusement park with all the medical equipment.  A hoyer lift with a sling turns into a swing or gives cable car vibes, toilet lift with bidet becomes a waterslide splash mountain, motorized wheelchairs are fast moving slick turning bumper cars, hospital bed and lift recliner with full adjustability are basically the slow scenic rides. You press a button and gently rise, tilt, or recline, like the world’s calmest motion simulator. No drops, no spins, just a very controlled “journey” from standing or sitting to lying down. If it were in a theme park, it’d be called “Cloud Cruiser” and people would leave saying, “That was… surprisingly nice.”

I learned quickly that perfection is overrated. Sometimes, the best response is just to laugh and try again or just live with semi-imperfection.

Here’s the thing, humor doesn’t erase the hard parts of ALS. Those are real, and they matter. But laughter creates space. It lightens the weight, even if just for a moment. It reminds me and everyone around me that I am still me. Not just a diagnosis, not just a list of symptoms, but a person with a personality, a sense of humor, and the ability to find joy in unexpected places.

Some days, the jokes come easily. Other days, not so much. And that’s okay too. Humor isn’t a requirement, it’s a tool. One that  helps me get through the day, connect with others, and reclaim a little bit of control in a situation that often feels uncontrollable.

So yes, ALS is serious. But if I can find something, anything, to laugh about along the way, I try very hard to hold onto it.

Because sometimes, the best way to face something incredibly hard…is with a really good punchline.