Who knew that ALS could be such a funny disease? I don’t mean that the everyday fight is funny, but the situations and perceptions that ALS creates can be extremely humorous.
My first glimpse into the disease’s funny side came at Christmas 1995, when I made my first trip out in my power wheelchair with my sister and she got the last accessible parking space at the mall.
As we were laughing about her struggle to release my chair from the van locking mechanism, an elderly gentleman approached us in a huff. He proceeded to scold and curse us out for taking the last handicapped spot, saying he deserved it more since he was much older than I. To which my sister yelled, “Oh yeah? Well, we’re more handicapped than you are!” So much for a smooth first outing.
It was at a St. Louis Rams football game that I realized just how weird the general public can be about those of us with disabilities, especially when they’ve consumed a certain amount of alcohol.
During halftime, my brother and I were waiting patiently in line for the bathroom when a very inebriated gentleman approached. He proceeded to fall all over me saying how great it was that I was brave enough to come to the game. I suppose that was nice, except that he kept gushing and following us, to the point that my brother had to ask him if he wanted to join us in the handicapped stall!
It’s not just the general public. We’ve had more weird and bizarre responses to my ALS from the medical establishment than from anyone else. These incidents range from the nurses and aides who literally yell at me because apparently they think ALS causes deafness, to the occasional hospital staff who ask my wife if I’m retarded — I assume because of my slurred speech (or at least I hope so). My wife has started responding, “No, he’s definitely not retarded, but sometimes he’s a little perverted.”
All you had to do was ask
Hands down the most hilarious incident occurred during one of my ICU visits, when two aides were in my room gossiping. I guess they thought I was comatose, because their gossip switched to a discussion of a sexual nature. This became an embarrassing moment for them when I began to laugh and they realized I’d heard everything they’d said.
Speaking of sex, I noticed, when it was announced that Lisa was pregnant with our second child, that certain family members seemed befuddled, especially my older brother. I wrongly assumed he was worrying about how we’d deal with our newest addition. A week later, I found out what was really bothering him.
“Jeff, I don’t mean to be nosy but everyone’s wondering — how is Lisa pregnant?” Dumbfounded, I sputtered out, “What? Well, pretty much the normal way everyone gets pregnant, but I thought you understood the birds and bees since you have five kids.” To which he said, “Well everyone thought you were like Christopher Reeve and couldn’t do that!”
All I could do was laugh at the thought of my family having a discussion about this topic — which to my shock and surprise also had been the subject of discussion and assumptions by Lisa’s family. After our third daughter was born in April, I’ve been told that some family members now brag to their friends about my virility! Go figure.
From the mouths of babes
Some of the funniest and sweetest moments of my journey with ALS have been with children. Questions have ranged from, “Why are you in a chair that moves? Can I have a ride?” to my favorite: “Hey mister, are you a robot?”
I love to hear my daughters explain ALS to others because they view the disease as normal. When asked what’s wrong with me, they matter-of-factly reply, “He just has ALS, so he can’t move his arms and legs.”
Recently my oldest daughter had a slumber party with three of her friends. When they saw me being moved to bed in the Hoyer lift, they thought that was so cool and proceeded to move each other around in it, giggling and laughing as they did.
The eldest isn’t the only one to enjoy the Hoyer, though. Every night our 3-year-old treats us to a little show using the Hoyer to spin like someone in a circus act, sometimes spinning so fast that she staggers when she’s done. Children just don’t have the hang-ups that most of us adults do when it comes to things like ALS. Wouldn’t it be nice if the adults around us had the same attitudes about ALS as children?
While we all recognize the serious side of ALS, we also need to take time to get a good laugh out of the humorous side. I know I certainly have, which may be why I’m still going strong more than 12 years after my diagnosis, although functionally I’m a quadriplegic on a ventilator.
Well, perhaps I should qualify that, for any of my family reading this: I’m a quadriplegic in my arms and legs only. I don’t want to start that rumor again!
Jeff Lester (“ragingbear”), 39, founded and hosts the weekly “Living with ALS” chat on the MDA Web site www.mda.org/chat/calendar.html. He also co-edits the “Will Hubben ALS Research Digest”. Jeff and his wife Lisa recently opened an online gift store, Raging Bear’s Closet (www.ragingbearscloset.com). A portion of sales benefits MDA and other ALS organizations.