By Wheelieoutthere
Sometimes I go around sniffing. You know, like a dog goes around sniffing? I'm driving my wheelchair in circles, sniffing.
Then my poor wife comes along. She says, "What are you doing?
"Do you smell that?"
"Smell what?"
"That! Can't you smell that?"
Now she's going around sniffing. Rolling her eyes. "I don't smell anything. Let's go."
"Hold on." Now I'm turning my chair in the opposite direction. I'm going to trick the smell. But it's smarter than me. "Hey, would you smell my shirt?"
She sighs and does it. Nothing. Somehow, after all these years, she hasn't strangled me yet. But she draws the line at the garbage can: I've got to do that one myself. Maybe it will turn out to be a smelly old hamburger or something, I hope.
An old dog sleeping by a bench looks up for a moment, thinking, "What are you working on, buddy?" But he sizes me up for an idiot and goes back to sleep.
These are the things I do ever since my first public accident. Right, I mean that kind of accident. Yes, I'm going THERE.
Around the time of diagnosis, I was getting my crash course in MS, quite literally, because I was falling several times a day. My balance and foot-drop were so bad that even a cane or walker could not prevent falls. At the same time I was having problems with urgency and bladder control. In spite of pills, control pads, different catheters and all manner of cringey rubbery, hosey things, the failures were constant. It didn't matter how hard I tried, accidents happened at - or right before - work, school, and most importantly family functions. Social life? That evaporated about the same time as my confidence.
The cruelest part was how mobility and bladder problems combined. With prescription meds like Ditropan (oxybutynin) and others, the advice is to drink a lot of water. But drinking a lot of water doesn't work too well when you're clattering down the hall in a walker. So how do we solve this dilemma? We didn't, and my medical team never had answers. Really, this had nothing to do with the meds, because you have to drink water regardless, right? The problem was that I had pretty weak medical supports. Plus a ton of bruises and stinky laundry. Welcome to chronic life, kiddo.
With something like this, your entire existence -- your schedule, your social life, your work life, your time, your nerves, you ego, your sleep -- takes a merciless pummeling. But this is not a sad story, because it has a happy ending. True, the root problem did not disappear. However, MS becomes livable when it levels off and you can start managing your symptoms and techniques. Life has returned to normal (my version of normal) and I'm never going back.
Still, That Smell is burned on my brain. I don't have PTSD, but I definitely have Pee TSD. When I smell anything close to it, the hazard-lights in my head start flashing. That smell could be anywhere. My clothes, my seat cushion, my wheelchair, medical supplies, skin, tinfoil hat, anywhere! It could be somebody else's smell, or something else's dog. Or it could be nowhere at all. Am I smelling this smell, and nobody else is? Am I not smelling this smell, and everybody else is? Am I losing my mind? Maybe I should spin my wheelchair in the opposite direction... right... NOW. But the good news is that these surprises are far, far fewer than ever before. (A major shoutout here to my incredible wife/caregiver, who ought to have eight arms to manage it all but somehow gets it done with just two!)
The other good news is that besides successfully managing symptoms, I'm just more confident with my MS. Because of course the smell is not there. Almost all of the time it's not. Occasionally it might be, and guess what? That's not the end of the world.
The ones who I admire the most are those who've reached the point where they just own it. With MS, with disabilities, they embrace it all and wear it like a full-length flashy gown. It's no sin, it's your skin.
When I was in grade school we read a short story about a summer camp for kids with disabilities that sounded a lot like Crip Camp, last year's amazing Oscar-nominated documentary about a camp that helped raise up a generation of world-changing activists. The campgoers in the short story were friends with a unique bond and snarky teenaged senses of humor. The one thing I never forget is that one kid is named Acrid. He had that smell. He also had a great time. He was an equal of the others, and was loved equally by them. That riveted me. Little did I know that he was the shape of things to come.
I'm now many times older than Acrid, but I still don't have his zen. I'm still trying to achieve total Acrid Zen. So if you see a guy sniffing around the park, or a flustered lady strangling him, don't call the cops. We're just working through our thing.
(Extra Credit: does anybody know the name of that story?)
