Anybody with a long term condition will tell you, the day to day things we have to overcome can be extremely frustrating and in many cases will take over your life if you let them. Some of these things can be as mundane as having to pop a pill or two multiple times a day are as serious as never being able to leave your home. Sometimes it’s a problem invisible to the rest of the world like not being able to put on weight beyond a certain point. Other times it’s impossible to hide like a skin condition visibly affecting ones face. But one thing is the same in all cases: They are unique to each condition, unavoidably ever present and have the power to dictate some or all of your life.
Spinal cord injury comes with many of these little frustrating side effects. Thankfully one person can’t have all of them because some are unique to specific levels of spinal damage. But considering how complex neurological damage can be, every spinal injury has some measure of side effect. For me, it comes in the form of a little thing called Autonomic Dysreflexia… or AD as it’s more commonly known.
Now you will probably find a more accurate definition for AD online, but like every other medical condition, the internet will give you the worst case scenario. You’ve been warned. I did find a very easy to understand explanation here. But here’s my take on it based on my experience. I’ll try not to ramble. At higher levels of spinal injury (T-6 and above) it is possible to develop AD. It is triggered by stimulus below the level of injury which sends signals towards the brain (as it should) but the signals, unable to properly pass the point of injury, travel through the spine to causing it to randomly set off bodily functions, usually the ones controlled by the spine (the autonomic nervous system). To get an idea of functions the spine controls, think of most things your body does without you knowing. So anything from blood pressure, heart rate, body temperature to digestion, production of body fluids like sweat and even sexual response. So for example say I had a small object in the shoe I’m wearing, I wouldn’t feel it because the signal is blocked from getting to my brain; so it bounces down my spinal cord setting off my AD I begin sweating, blood pressure drops, my temperature starts bouncing up n down or basically any of the functions listed above goes haywire. Now not all the functions are set off every time I get AD. In fact, specific stimuli trigger specific reactions and in specific amounts so the AD for a broken toe feels very different from AD for a UTI, etc. The only positive side to all this is AD can act as a natural warning system for when something is wrong and I can’t directly feel it, though not for every possible thing. The very negative sides are 1) AD can be quite dangerous and frankly fatal if left unchecked for too long. 2) It can be an annoying inconvenience in day to day life, especially when it’s set off by something trivial like a crease in my clothes or… wearing most normal shoes. Shoes set off my AD because some parts of the foot are under constant pressure from certain parts of a normal shoe and I can’t walk around to unconsciously relieve those parts by moving my foot around in the shoe. This means the most common shoe designs will always trigger my AD. I start sweating, getting dizzy, risk passing out or worse (and this all feels like crap btw) all because I tried wearing a pair of shoes I like. And therein lies the reason for this post.
Since 2010 I’ve either had to find shoes that are designed specifically for me which is way too expensive (and ain’t nobody got time for dat!) or always be on the lookout for shoes that put little to no pressure on my foot but don’t look like they belong to a geriatric OAP. This has proven rather difficult and I spent a long time putting myself through literal physical distress to wear nice shoes or just not wearing shoes at all. At some point I found that lounge shoes/slippers didn’t set off my AD but I never understood why. So I bought a bunch of pairs that look like loafers and if you’ve seen me anywhere in the last five years you may think that’s just how I dress. But this was not by choice and I definitely did not enjoy it. Finding suitable and fashionable shoes had remained an elusive fantasy. But lo and behold, 7 years after my injury my searching has finally paid off in a satisfying way thanks to these heaven sent beauties:
Considering I had to spend majority of my first two years post-injury, including my graduation, with nothing but thick socks on and my feet propped on a pillow before I found something even half decent to wear, this a freaking game changer. Before now, I’ve been extremely self-aware of how I look, not just to others but to myself. I subconsciously and consciously compare my current appearance to my appearance pre-injury or what I feel my appearance should be. Now that’s never truly going to stop. Everyone, on some level, compares themselves to others. Some people make the comparison and are happy with what they see, others, not so much. For someone with a visible disability/condition, this compulsion is a lot more powerful, for obvious reasons. I’ve tried dealing with this like a lot of disabled people do: hide every sign of disability. I know the healthy thing to do is to try, where possible, to accept and embrace how you look. And this is true for every human being. But made a difficult when society tells you how you look is different… and not in a good way; especially if you have no control over said look. I obviously know I look fabulous (flicks imaginary long hair off my face) but I still detest having to compromise how I want to look because I have no choice. Being able to wear decent shoes, not prescribed by a doctor or bought from a specialist shop removes the need to compromise and gives me back some independence.
If you’re wondering what magic I discovered to be able to wear sexy shoes, it’s nothing complicated. The shoes just need to be a bit flexible and have mostly nothing on the top of the foot. Why it took me seven years to realise this, I have no idea. But a lot of very decent shoes from most retailers fall under this description. I even got a pair of Groupon. Below are a few I can personally vouch for. The pictures are also links to where I’ve found them here in the UK. But you can honestly apply the logic to shoes from anywhere.
I’ll continue to share these little tips on living with disability as I discover them myself. Who knows, it my might make as much of a difference for you as it did for me. Or you could just learn about something pretty cool.