Proprioception is the unconscious perception of movement and spatial orientation, it’s that internal sense of knowing where each part of the body is without looking at it. It’s permanently impaired in those with EDS and it’s one those symptoms that are easily overlooked but tend to have a rather profound impact on daily living. Despite still working at it every day and having spent years in physiotherapy trying to improve it as much as possible, it’s not something that I’ll ever be able to fix entirely and so a certain level of adjustment is required. I know that it could be a lot worse, my proprioception is subpar, but it’s by no means absolutely awful. Joint and nerve injuries over the years have made worse, but most days, with a lot of work and conscious effort, I can compensate for the loss.
For some things, the adjustments are easy and can make up for my shortcomings. I’ll never type touch well as I need to look at my keyboard to hit the right keys, but I can still type pretty well when I do look at my keyboard and in most cases, looking at the keyboard is not that big a deal. A little challenging when raiding, but I manage pretty well with the help of an N52. Other things are more difficult to compensate for. I find it hard to explain just how much it affects everything I do.
If I close my eyes, I can’t tell what position my joints are in. The dark is a very scary place. I don’t know where the the bedside table is, where the floor is, where each part of my body is. If I’m standing up when the lights go out, I loose my sense where up and down is. The world without light is like loosing gravity. There’s no up or down or left or right and everything is moving and it feels as if the furniture and even the walls of the house is moving around me and it bumps into me as I try to just be still. When the lights go out, I slide onto the floor and pull up my knees and wait for it or Chris to find me again.
I watch closely what I do. Walking is complicated, stairs or walking on an uneven surface is rather terrifying. The problem is that not knowing where my feet are in relation to the ground unless I look at them is just the beginning. The righting reflexes that protects us from injury are also impaired, so that walking on an uneven surface makes me rather prone to injury. As tripping is enough to move bones, sprain ligaments and strain muscles, I naturally detest gravel that seems to cover every driveway, both private and commercial in the UK. They’re hell in a wheelchair too, but I digress.
The problem is bigger than just being clumsy and looking at my feet when I walk. I have lost precision and speed of movement, particularly in my hands, buttons, shoelaces and eating with a knife and fork are a nightmare. I find learning new motor tasks or relearning unused ones or carrying out any tasks using previous experience difficult. Playing the piano always felt like a permanently degrading skill. I had to practice hours every day just to retain the skill level I had. My muscle memory is poor at best, they simply do not remember what they did five minutes ago. It’s as if my muscles are permanently lost in a maze and whatever they happen to do is done unwittingly by accident and cannot be repeated consciously. A friend once tried to teach me how to play pool and was rather frustrated that my skill level never improved. I was reasonable at it at the play-at-local-pub level, but that’s where I started and remained. I don’t get much better with practice. As a child, I practised for hours and hours at various sports and although it helped somewhat, I never really knew what I was doing, the way other people seem to know. I learned to shoot hoops pretty well by looking at my hands and memorising what it looked like to succeed and tried to replicate the exact position they were in and I was in. I would move a pace and then keep throwing whilst watching until I thought I could reproduce the results from that exact spot. I memorised the spots in a tiny grid pattern and standing in a particular square, I knew I needed to move my hands just so to make the shot. It was exhausting.
I have great difficulty performing any tasks that requires both fine motor control and cognitive loads (such as taking notes in a classroom or meeting, never did master that one). I have to consciously do what other people do subconsciously and it takes most of my brain power to do so. Raiding in Warcraft is particularly challenging. I look at my hands as well as the screen (Chris brought foot pedals home on Monday and couldn’t understand my shriek of sheer terror at the thought of having yet another limb I have to watch whilst my screen is going nuts) and keeping track of both mouse and all the keys of the N52 as well as what’s happening in-game is difficult. Also having to consciously process each movement as well as having to mentally calculate how to heal through an encounter will always be a difficult challenge. I have to know each encounter inside out and be able to anticipate everything as most of my thinking goes to how to press the right button and my eyes are away from my screen more than it’s on it.
I can’t play the piano without looking at the notes, can’t walk without looking at the floor is or without constantly bumping into doorframes or tripping over everything. I have difficulty adapting to a change in load or distance. Everything in the house has to have a precise place. It takes forever to learn how to pick up a cup from a specific location, move it an inch and I have to start from scratch again. Give me a different cup that is a little heavery or lighter and I drop it. Give me a glass that’s a little thinner than the one I’m used to and I’ll break it. Precision is important. I can’t watch TV and eat as I miss what’s happening on the screen, both because I’m looking at my hands and concentrating so hard on moving that I loose the plot. It’s frustrating and even though I’ve never had good proprioception, it’s still a frustrating normal for me.
Proprioception tells us where we are in space, whether our legs are bent or straight, whether our ankles are twisted and I just don’t have these answers. If my pain levels are high, I can dislocate a joint and not notice until I actually visually check each one. If I close my eyes, I feel as if I’m floating through empty space. I am flying, falling, swinging, rocking, moving. Driving in a car I cannot tell if we’re moving or standing still when my eyes are closed, the world for me, is constantly moving if I’m not looking.
Touch is one of the few things that mitigate the panic. Chris finds me on the stairs in the dark and he wraps his arms around me, and it’s as if every part of me that touches him click into place. Something lost is found. I’m always touching everything. I don’t like being bundled up in the winter as I loose my sense of where I am. I can almost walk without looking down if I’m barefoot and can feel the carpet against my skin. My sense of touch has not survived EDS unscathed and unless I touch something directly, it’s like being covered in bubble wrap and I loose that sense as well. Most people with impaired proprioception compensate with vision and hearing. I look and I listen, but I also feel. I know what’s underneath my fingertips and it tells me where I am in space. But despite all the uncountable little mechanisms I’ve learned over the years, every day I still miss knowing where I am. I get frustrated because my hands don’t work and walking requires so much thought and I’m covered in bruises from walking into walls. Today is one of those days where I am hurting more than usual and not having slept much I am absent minded. This means that I have a tendency to walk into, trip over, collide with and not notice. It’s tiring. And a little demoralizing. But it could be worse. It’s a small consolation, but it’s not the end of the world and all these things require so much work, but with that work, it’s doable. I can, with great difficulty, but it’s better than I can’t.