Getting fit for a mobility aid (Guest post)

Living with a changeable disability requires adapting to new and different things. Over the last year, I’ve been adapting to using a mobility aid. And while the most significant part of that change has been the shift from being (mostly) invisibly disabled to being (mostly) visibly disabled, it’s also brought with it a range of new and unexpected fitness challenges.

It’s funny – I never thought of using a cane as something that would have fitness implications. And it certainly isn’t presented that way. One day my rheumatologist handed me a cane and said “You need to use this now.” That was about it, as far as instructions went. What’s more, there’s a sort of lurking presumption that if you use a mobility aid to get around, fitness isn’t for you. In the world of exercise, there are non-disabled people and then there’s murderball. The in between is a vague no-man’s land.

But I’m disabled, I’m healthy, and I’m determined to keep my ass in shape, come what may. And I’m still a badass, cane notwithstanding. So I’ve spent the last year figuring out how to adapt to the current fitness needs of my body.

I need the cane because of my hip. I have something called Ehlers-Danlos Syndrome, which means, among other things, that I have very loose joints. I’ve dislocated my hip a few times, subluxed (i.e., partially dislocated) it many, many more. The net effect of this, as I move into my thirties, is that the joint no longer functions well. The labrum is messed up, the cartilage is worn down, the joint is arthritic, and – the biggest problem – the joint doesn’t sit in its socket properly any more. This means that my hip is now very unstable.

If I’m going to navigate the spaces I want to navigate, my arms need to do a lot more work. (Honestly, going bipedal in the first place may have been a mistake for me. My parents say I was awesome at crawling.) But here’s where things get tricky. My shoulders are also unstable. I’m conscious of wanting to avoid falling into the supercrip! trope in what follows, so to compensate here is a very disgusting – and very honest – picture of my shoulder doing its best Alien impression:

photo 1

When I took that photo, I accidentally popped my shoulder out of its socket. So here’s a picture of that too:

photo 2

They are nice shoulders, but damn they are weird.

Given what my shoulders and hips are like, here are my basic criteria for successful, cane-related fitness:

(i) Strengthen and stabilize the shoulders. – Because of aforementioned weirdness, so they can do more weight bearing.

(ii) Strengthen the glutes, hip flexors and external rotators, and core. – Because my hip joint isn’t providing stability on its own, so it needs extra help from the surrounding muscles.

(iii) Keep good range of motion. – As I begin to deal with degenerative changes in my joints, the wide range of motion that comes naturally to me is my best friend. I need to keep it around.

(iv) Do all of (i)-(iii) with minimal weight-bearing on the hip. – Because weight bearing makes all sorts of things worse, and also tends to lead to subluxations, which are bad.

(v) Be disability positive. – It’s really important to me that my approach to fitness is one that celebrates my body and its idiosyncrasies. I don’t want to exercise to ‘manage my symptoms’.

(vi) Be fun. – This is related to (v), but is also just because I am lazy and easily bored, and if exercise is 3 set of 10 reps of whatever, I just won’t do it. It needs to feel like I’m goofing off.

I’ve been tackling (i)-(vi) via my yoga practice, which has been the way I’ve stayed fit through all the surprises of living with Ehlers-Danlos Syndrome. Yoga offers the flexibility (sorry!) to work with whatever’s happening in my body, and the creativity to keep me interested and having fun. Plus, my genes make me naturally bendy, so I love anything that subtly links flexibility with moral progress. Here’s what I’ve been up to.

Backbends – they work the shoulders, the core, the hip flexors, and the glutes, and if you pick the right ones put minimal pressure on the hips:

photo 3

Handstands – Creative variations with handstands are a great way of building strength while keeping my shoulders crammed into their sockets. One day I will learn to walk on my hands, and then all my problems will be solved:

photo 4

Fun stuff with walls – Creative use of the wall has let me work on strength across a wide range of motion while keeping to minimal weight bearing.

photo 5

photo 6

Putting this all together, I do things like this:

None of this is curative – my hip is still going to be weird. And as much as I get better at doing things like this, I’m still going to be pretty bad at walking (and will probably get worse over time.) But doing stuff like this is helping me to be the best, most fit cane-user I can be. And it’s also a lot of fun.