I’ve been sick for 34 years. When I was younger, my disease would ebb and flow, painfully inflamming every joint in my body for months on end and then it would vanish just as quickly as it came. As I’ve gotten older, the unpredictable waves of illness and disability have become more of a dam with a slow leak. With each year that passes I feel new sources of pain, new manifestations of disability. Symptoms compound in novel ways making my body become more and more limited.
I’ve grown accustomed to these limitations, as one does when they live with a chronic illness, lest they wish to live in constant misery, longing for their past lives, their old selves. Sometimes I can find helpful work-arounds that allow me to enjoy whatever activity it is I want to partake in just in a slightly different way. And sometimes I have to accept that something I want to do, something I always used to be able to do, is now unavailable to me and I need to find a suitable replacement.
I’ve been feeling a certain unnamed discontent in the last couple of years and it wasn’t until I read Yi Shun Lai’s brilliant essay collection, Pin Ups, that I was able to pinpoint precisely the source of that discontent. Throughout her essays, she discusses the joy of outdoor sports and the process of finding where she fit within them in such a way that would leave even the least outdoorsy person pining for a good hike. While our experiences with the great outdoors are vastly different–I would not be caught dead training for an Ironman race–reading her words brought back to me memories I’d forced myself to forget. Memories of activities my body will no longer tolerate, outdoor activities I’ve had to replace with indoor activities and pretend they are as fulfilling.
Even just five years ago, I was the sort who could, on a whim, decide to set out for a 20 mile hike at dawn with my dog over rugged and steep terrain, completing it with ease as I took in that magical outside scent that can only be found when wandering deep in the woods. These days, I can still try for distance–and I do–but every step must be carefully planned, else I will find myself with another ruptured calf muscle from doing something as mundane as walking slowly down a flight of stairs. I was also once an equestrian, a rather adept one, and now the very act of mounting a horse is something my body finds to be so disagreeable that even if I can manage to heft my leg into a stirrup, my back will scream in pain on the horses first step. Even yoga, which I once did daily with moderate skill, causes me those moments of Oh, shit, how did I just injure myself now? While leaning sideways? Really?!
In addition to causing damage to every joint in my body, my disease has also attacked my lungs, leaving breathing feeling like an Olympic-level accomplishment. Quite simply, my current body has rejected the old way in which I lived and indulged my love of outside and I have had to replace it with a love of something else. This is where that discontent has been brewing.
I adore video games. Not only are they my hobby, but I’ve made them my career as well. Their stories, their artistry, the genius it takes to even make them exist in the world. I love every aspect of them. The only thing I’ve discovered I do not love about them? I miss outside and they’re not a suitable replacement. They’re the best and only way I’ve found to experience even the slightest bit of what I used to feel when my body allowed for outside things and yet there is still that simmering discontent.
I suppose this is why making games accessible to disabled people is what my life revolves around now. I can’t bear the thought of yet another thing I love becoming inaccessible to me. While the consequences of forcing my hands to play an inaccessible game are far less severe than those of forcing my body to exert itself, there are still consequences that further feeds the discontent. If I can’t even mash a trigger with my index finger without it feeling like I broke it, what hope do I have of ever going on another hike? I can’t help but wonder while gaming.
The joy of games, for me, lies in what they can replace for me. I can fire up Red Dead Redemption 2 and spend hours exploring digital America, from the prairie to the bayou to the snow-covered mountains. I can hike from Montana down to Texas if I feel so inclined, and with a horse! I can’t smell all the smells, but I have those memories from when I could that come to mind to enhance my experience of virtual worlds.
I don’t think it’s particularly uncommon for disabled people to have moments of jealousy for the things inaccessible to us that abled people can freely enjoy, nor do I think I’m in the minority for falling victim to bouts of hating my body and what it’s decided to do or the pain that it causes me. I believe it’s quite possible to still love yourself and appreciate your life while having the occasional moment of despising your body, especially for people like me who became disabled slowly. I also believe disabled people have a leg up on abled people when it comes to being flexible and accepting, particularly when it comes to our circumstances. That is to say, do I want to pick up and take a long hike? Of course I do. I miss it tremendously. But I fully accept that doing so now would only serve to make myself sicker than I already am, so instead I will turn on a game and lose myself in some photo-realistic nature and maybe reread Pin Ups to get those old memories fresh in my mind once again.
