During my latest physiotherapist appointment, we found out that I can walk a grand total of 68 metres in five minutes. And then I need to take a break because my arms hurt. Yes, walking makes my arms hurt. That is a thing when you use a rollator, apparently.
I was diagnosed ten years ago, but have obviously been alive longer than that, so you can imagine it hasn’t always been like this. My parents enjoy walking and travelling, for example, and when I was younger, well, I had no choice but to go along with them. Today, I look at photos of those trips and marvel at how I was able to do all those things. Walk. Run. Climb stairs. And look how straight my legs were! Of course, knowing now that I’ve technically had ataxia brewing in me since my birth puts a whole new perspective on why I actually complained about all those things (except the straight legs—I loved that bit!)
See, this started when I was a small child. Oh, I agree, I look quite willing and like I’m enjoying myself in those photos (taken in France, France, … and France). And I was, probably. It’s not like I hated travelling in and of itself. But my parents have always told me about how I asked for a stroller for much longer than other kids my age did. I didn’t know why back then, I couldn’t explain it, but now, in hindsight, we can probably assume my legs hurt and I just wanted off them. Even if they were tiny.
In that first picture, my stroller was probably waiting for me at the end of the long trek on that wooded path. Maybe also a tantrum; how dare my parents make me walk so much on those small legs!
All I’m saying is, if your child complains about something, don’t automatically assume they’re just lazy. There might be a legitimate reason you will only find out about decades later.
Another one of our usual trips was down to the west coast of Florida, on the Gulf of Mexico. I loved swimming in the sea, bodysurfing on the waves, swimming to a sandbank farther away that allowed me to stand up what seemed like miles from shore (and was probably like fifty metres or something), letting myself float on the current and laugh when I raised my head and I could barely see my hotel anymore.
The last time I went in the ocean was in 2017, in Panama. I went in once, just to be able to say I’d been in the Pacific Ocean, but it was not nearly enjoyable as those swims used to be. As I was already using my walker then, I couldn’t just walk down the beach, I needed my dad on one side and my friend on the other to support me all the way to the water. Now, being waist deep in the water is fine in that if I fall, it’s less likely that I’ll hurt myself, but I still don’t have any balance. Even less than usual, actually, since there is literally nothing around me I can hold (unless I bring a floatie). So there I was, in a new ocean, not only struggling to stay upright but doing so against a strong current that seemed determined to knock me down. A few minutes later, when my friend asked me if I wanted to get out, I nodded frantically.
Needless to say I spent the rest of that afternoon sprawled on a lounge chair, and the rest of the vacation in the pool. With walls.
(Admire my straight legs! Who do I have to bribe to get those back?)
This photo was also taken in Florida, though obviously not during the same trip as the last picture. I think this one, or the next one, was when I had a memorable breakdown on a mini-golf course.
There is a course in the town where we stay on which we used to go play every stay. I didn’t mind mini-golf, not too much walking, and nobody cared if I was bad at it. Except this time, nothing was working. My legs were tired, my heart randomly started going a mile a minute, I hit the ball with even less control than usual. And of course it didn’t help that every person in Florida picked that evening for mini-golf, so I felt like I was holding up everyone else on the course by spending ten minutes on each hole.
So I did what every respectable teenager does: I grumbled and sulked and threw a hissy fit. Just like my parents didn’t quite know why I hated walking so much when I was a toddler, I wasn’t understanding at all why I was having so much trouble with this simple task as a teen. I was young, I was healthy (or so I thought), why couldn’t I hit a freakin’ ball into a freakin’ hole?!
Of course, now I know. Legs hurt? Spasticity. Heart going crazy? Tachycardia. No control of the club? Ataxia—my muscles making me either swing too hard, or too weakly.
Sometimes, I would still quite like to throw a hissy fit when my legs decide to stop working correctly. But somehow I think at thirty-three, this response would be less acceptable than when I was thirteen (or three).
This is from another memorable trip in which my parents made me walk across New York in a day. See how exhausted my mom and I were!
Today, when they recall that trip, they always say, aghast, “I can’t believe what we made you do, you must have been in so much pain!” And I laugh because, okay yeah I probably didn’t enjoy it much at the time, but I also technically could still do all those things, so I guess it’s a good thing I did them while I still could. Because today there’s no way I could walk down even a single block in New York.
My parents weren’t the only ones who made me “suffer.” When I was seventeen, I spent five weeks with my family and friends in France, all of whom regularly chose walking over taking the car. So with those people I walked from the train station to the park in Lyon, something that my friend probably assumed would take ten minutes, not knowing I’d need about eighteen breathers on the way. Various aunts, uncles and cousins took me on walks to the beach, through villages, to a cousin’s workplace that was “just fifteen minutes away,” to the next village over for a July 14th party, through EuroDisney in Paris (the next day!)…
But in the middle of all that, I made myself suffer too. I spent a week alone in Paris in 2012, where elevators in subway stations are scarce as hen’s teeth (also, did you know the Mona Lisa and the Venus de Milo are placed at the extreme ends of two different wings, so you absolutely have to walk through the whole damn museum to see them? And the Mona Lisa really is tiny…); I went to a university whose campus is built on a mountainside, willingly; I attempted to go to Universal Studios without using a wheelchair; I did sports, again, willingly…
So what’s the takeaway from all this? Listen to your body (or your child) when it says it’s had enough. You might not know the reason for it, it might not make any sense to you why you’re reacting to things the way you are, but if your body is telling you to sit down and stop moving, do it. Some day you might find an explanation for all of it, or you might not, but either way, not pushing yourself past your limits can avoid much unpleasantness…
On the other hand, if like me your situation is degenerative, you should enjoy things while you still can. I look back at so many things and know there’s absolutely no way I could do them today. Sure, mobility aids are a thing, but so is inaccessibility. I don’t regret a single thing I did (or was made to do) because I got memories I’ll never be able to replicate from them.
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