This was a first for me. The progression of my CMT has really ticked up noticeably by the year in my later 40s. I feel like I’m carrying my lower legs and feet with my hips — because I am — and my feet and ankles cry out a lot sooner and recover more slowly. One or two years ago, 10,000 steps a day was OK. 20,000 was hard to push through. Now that’s been cut in half. And the balance issues are as bad as ever because my feet look like the typical case — but with a much higher arch than the one pictured here on the right. (If you’re here for the first time and think CMT only means Country Music Television you can learn more on my About page.)
So falling is a constant concern — and sooner or later a reality. I’ve had bad ones. The last busted up some ribs that hurt for over a month. An older body won’t absorb some of those shocks nearly as well as I have so far. I’ve gone tumbling down stairs and ass over teakettle on the ice. Fortunately, I haven’t broken anything worse than my toes — many times. So much ice last winter—my bad feet killed four pairs of Kahtoola spikes and Yaktrax. A wet tile floor or simply a shower with no bars to grab on? It’s a dice roll for pain and sooner or later the ER. Long, long ago I got in the habit of imagining my teeth going into stair treads every time I start climbing. My right knee goes out a lot unpredictably. I think before I move.
Except when I forget.
I was at WordCamp US this past week/end. WordCamps are conferences for the community of people making, using, and enjoying WordPress—as you are doing right now with this blog. It’s an increasingly aware community that cares about diversity, equity, and inclusion as well as mental health. There’s a group for WordPressers and other pro web workers that I promote here on my About page — and elsewhere — for us “spoonies.” “Spoonies” are people dealing with chronic pain, fatigue, discomfort, etc.,… all kinds of “invisible” challenges easily overlooked by others and frequently hidden out of shame and/or pragmatism. If you want to know what spoons have to do with it, read this. There’s even a Spoonie Wapuu, the cute cartoon WordPress mascot you see heading this blog post.
So that’s the context for me needing to book a hotel room at a place where I knew I’d be on my feet a lot, up late, and pushing my envelope between the cramped cheap seats on a plane and a beer-sodden dance floor.
When I saw the option to ask for an ADA-equipped room, for the first time I thought….maybe?
OK, he didn’t say the ADA room sucked. He said there was a generator running nearby. In fact, there was a giant truck with a generator and air conditioning system running 24/7 right outside the ADA room’s door to cool the whole building I’d be in. He said go check it out a few minutes and come back if it sucks. (In so many words.) Of course, it sucked.
I just wanted to be sure there would be bars in the shower. Not having to step over a tub edge into one would be cool too, but wow — the handicapped shower. Is that me? Shame. Confusion. Am I taking this from someone who needs it more?
You wouldn’t guess this is all going on in my head and life if you saw me. Most people I know don’t know. I was taught to closet the CMT damage early. I even ended up dancing, kind of, on the weekend. Alcohol and ibuprofen help, but it hurts like hell — and I love it.
Use it and lose it. That is the deal with CMT.
For tech people just tuning into this blog for the first time, it’s like massive packet loss — the signal in the long nerves does not get to the farthest points out, or it gets bounced at the final hop. (Of course, that’s a huge simplification, but you get the idea.) For me, it’s mostly the lower legs. For others, it’s the upper limbs. For some, it’s both. For me, it could suddenly become both. My hands have numbed a bit and have lost dexterity; my toes are mostly useless and don’t touch the floor on the left side. I’m a lot shorter on my left much of the time when everything stiffens up like a wire in that leg. The whole system is affected in some way. Respiratory stuff. CMT brains work differently with all the conscious and intentional effort to move. Depression is the most common comorbidity for loads of reasons. I’ve got or gone through all that. And there’s only more ahead because it’s progressive.
But you know, it is far, very far, from the worst hand to be dealt even in CMT.
I love this quote:
Being able to walk pain-free is a blessing. Being able to walk without showing the pain is a skill.
I’m good at pain and not showing it. (It comes out in other ways.)
I’m bad at allowing myself any help.
I try to explain myself more these days, and it’s fucking hard. Sometimes I say stuff like, “I love running too but had to quit in my early 20s.” The last time I did that I got a laugh and a playful tap — “No, you’re just lazy.”
So I take that and stop talking. And I need to tell myself, no I’m not lazy, but I’ve really internalized that often-received message over the years. Running was doing damage in my teens, and I couldn’t make the times I was expected to. My parents pressed me to do track and cross country to keep me busy after school, despite knowing better than I what my situation was. It was painful and humiliating just stomping along, trying to overcome with denial and sheer grit to tune out the feeling. I got invited (and pressured) to run in my 30s and 40s a few times. So I did it and got left behind staggering in awareness of how much worse my legs were getting.
So I cover it up.
But I did request the ADA suite — and I forgot until I checked in. The guy checking me in basically asked me if I really wanted the ADA room, because they had only one left, and in so many words he indicated it kinda sucks.
He didn’t say it sucked. He said there was a generator running nearby. In fact, there was a giant truck with a generator and air conditioning system running 24/7 right outside the ADA room’s door to cool the whole building I’d be in. He said go check it out a few minutes and come back if it sucks. (In so many words.)
Of course, it sucked.
I got another room, and it was fine, but there were no bars in the shower or bathroom anywhere, and I got the tile good and slippy, but I was careful, used extra towels, and I used the curtain bar instead. I didn’t fall. And other people do need the ADA room a lot more than I do.
But all I needed was a simple accessibility fixture that’s good for everyone.
This was a good look into my future, which is always hard for us all to face. it was an opportunity to gather more empathy and understanding. I heard some good people are organizing to get a Diversity, Equity, and Inclusion team in every WordCamp organizing committee. That’s not just about representation in terms of speakers and attendees but making sure people have their dietary needs and accessibility needs met, which we already try to do. But we do need to try harder.
I enjoyed myself a lot at WCUS and learned a ton. But I don’t want to be at another WordCamp where some people cannot bathe securely at all.
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