Level-Up: Part 30
I sometimes think it’s an advantage that my disability is invisible. It gives me the option of blending in and pretending I’m fine, even when I’m anything but. Pretence wears you down if you employ it too often, but sometimes being able to paint myself better for a few hours feels good. With my condition it can be hard for people to tell when I’m struggling. When I stop in the street to ‘look at my phone’ I’m really just taking a break so I can walk a little further. Nobody knows that I’m gripping the shop counter to stop myself from falling over. For the most part, I try not to let my face give it away when the room is spinning. On a bad day, nobody would really know that my computer screen looks like this.
When I’m feeling my worst my breathing changes, the tone of my skin drains and I squint and fidget a lot. My body can sometimes go into a form of shock, so my arms and hands shake. But those things are subtle. Only people who know me would notice my stamina depleting. I spent a lot of time feeling like my disability was all that I am. But I was always grateful that I was able to cloak mine in what I considered ‘normality’. Those with more outward facing ailments don’t have that luxury.
There are, however, downsides to having an invisible illness. Not looking sick and really needing people to understand how unwell you’re feeling can be tricky and quite isolating. I don’t blame people for not getting it straight away. We’re taught to understand that illness and disability are things we can see. Our psychology is built to respond to visual evidence. But having the appearance of good health can mean the expectations put upon you or even just those you think have been put upon you are difficult to manage and meet. This is especially true when you have the kind of personality where you’re the first to highlight your failures. I am pointing at myself there, by the way. Just in case 30 weeks of this series hasn’t made my penchant for self-flagellation clear.
My walking stick is, of course, functional. The balance organs on my left side and the way my brain sends signals to them are damaged. My body now naturally leans to the left a little and when I’m walking I’ll tend to veer off to the left. Holding my walking stick on that side helps me stay upright and centred. But what it also does is give my invisible disability a presence. People might not understand what’s wrong, but that piece of metal lets them know I need some space and possibly some help. I definitely feel more confident and secure when I have it with me. I’ve been thinking a lot over the past couple of days about what I expect of people when they encounter me and whether I should expect more.
I’m a slow walker, so if I’m holding people up I’ll always move myself into a position where they can get past me. If someone’s moving toward me with a pushchair and some kids I’ll happily make a path for them. Although, I’m always pleased when the parents use me as a tool to teach their kids good manners. If there are no seats left in a waiting area, I think it would be kind to offer me a seat. I struggle if I’m standing too long. I’ve given up my seat plenty of times on trains and buses over the years.
Yesterday I stepped aside for a young guy on his skateboard. He slowed down as he trundled past, thanked me and gave me a double thumbs-up. I didn’t mind because he acknowledged my gesture. Maybe I should have been aggrieved. I hadn’t anticipated it, but it was a nice surprise when the taxi driver who brought me home yesterday told me to stay seated so he could help me out with my bags. Maybe I should do less for other people and expect more for myself. I don’t know where it comes from, but maybe it’s stubbornness in not wanting to give in to the idea that I both need and deserve help and a bit of special treatment.
On Friday I had been struggling to walk at a steady pace. I stopped and started a lot. I could sense that I was in someone’s way but couldn’t figure out which direction they wanted me to move in. In his frustration he barged me and bumped me out of his way. For a few moments it upset me. It wasn’t so much that he’d pushed me out of his way, but that I hadn’t been in a position to fight back. It made me feel tiny, vulnerable and unimportant. I could have over-analysed it and let it consume me. But I dealt with him by not letting him ruin my day. Maybe I should expect more support from strangers. But in all honesty, even if I hoped for a red carpet to roll out with every step I took, I’d still feel a little unworthy if it happened. Maybe the more I hope for, the more I’ll receive in return. It is at the very least something to work on, because not expecting kindness from anyone can’t possibly be a good thing.