My walk has changed quite a lot over the years and with it the random things people have said to me, unknowingly commenting on something that is a disability. Here is one of those situations.
Back in Paris my buddy Finn was getting ready to move back home to Ireland. He celebrated his last night in town by inviting all his friends (mostly Irish, some American, maybe a couple French) out to one of our go to hangouts, his favorite Irish bar The Coolin (which I only just discovered in writing this was closed in 2015). I arrived late as always, ordered a pint of Guinness, and a shot of Jameson- my usual whenever we went to this bar. Something to calm my nerves as I walked into a large bar before heading to a table with loads of people most of whom I did not know.
With the nerves in my legs eased by my shot of whisky I headed over to the big table of friends to join in the goodbye celebration. We stayed around until closing so it was time to move on to another place. Every where else we looked to go was closed so the crew decided to head to a friend’s apartment. We were getting near the closing of the metro so if I stayed out, I would be stuck until the trains started to run again. Finn convinced me to stay out and off we went to continue our little fete at chez un ami.
We danced, we laughed, we drank more Jameson and Guinness. We lamented the departure of our friend. As the night turned into morning and we all grew tired we said our final goodbyes and headed out in groups once the metro started to run again. I left with two guys I had just met that night. As I suspected a night of no sleep had turned my normally awkward gate that could be confused with me just having had too much to drink, into something much more obvious and weird. We stepped out of the building onto the main street to figure out where we had to go to get to the metro stop and one of the guys noticed the change.
He asked me: why are you walking like you just shit your pants?
I laughed, because how could I not? That was the most unique way anyone had described by walk, and the question was delivered in such a refreshingly direct way. Also it was said by a guy with an Irish accent so he could have said much worse and I would have been enchanted by his brogue regardless.
I told him I hadn’t, but my reasoning would probably make him feel like shit.
I explained my current situation – that I had had some issues with walking as a kid, got diagnosed with cerebral palsy, but that diagnosis no longer fit my symptoms so I don’t really know why I walk like I have shit in my pants, but I am doing tests with doctors to try to figure it out.
This was the first time I had succinctly, and without fear, explained what the heck was going on with me and I was pretty proud of myself. What I was not proud of were my following Debbie Downer comments. The guy went on to say something positive of oh I am sure they will figure it out and there is probably a simple cure for it. What I wished I said was something simple like “fingers crossed,” or “here’s hoping,” or “and if not, I can always change my name to ‘Poopy-pants McClurg.'” Instead I was totally negative, which is so unlike me. I think Paris had gotten to my at this point and my rose-colored glasses had some cracks in them. I said I had been through a bunch of tests already and while the deadly things were ruled out I really doubted there’d be a fix to whatever was wrong with me. Queue awkward silence.
I have no idea what else we talked about, but the subject was switched, we found our trains, said our goodbyes, and never saw each other again.
What I like about this story is how I still laugh over how he described my walk. I actually used that description to explain to a nurse how I normally walk after an incident where I was clocked in the leg with a golf ball- that is a story for another time. It’s also a reflection of how I feel about my disease: I can laugh about it, while at the same time be totally bummed about it. There are so many mixed emotions. It can be no big deal one day or one minute and then it can be something that makes me sad for my current state and fearful for my future. The best way I know of to get out of that negative emotional rut is to laugh.