I dont usually share things like this on social media because it is so vulnerable and personal. But really, I want to share it, because maybe it will give some insight to people on the opposite side of my experience, and that in and of itself may be healing. Thank you all :) Its funny, just this morning I was talking to another gal in my religion class about having an invisible disability. Something tangibly wrong with my body (others it could be in the mind) but because I am not covered in casts, or in a wheel chair, or because I have a decent level of mental capacity, no one notices the disability. I am able to care for myself to a reasonable extent and complete nearly everything my life entails, but I have an invisible struggle to fight, every single day. The struggle is call Ehlers Danlos Syndrome, its a connective tissue disorder that causes loose joints, common dislocations, chronic severe joint pain, easy bruising and excessive scarring, along with prolonged healing times. That can make life difficult. Very difficult, but since no one can actually see the problem, they don’t know. Today in class we had the wonderful opportunity to go and volunteer at a local organic farm. An incredible opportunity for the physically able. When we were split into two groups, I ran through what both would entail, and choose the one that seemed like the one that would be less painful for me. It was pointed out (in good spirits) that as each of us were walking down our row of acorn squash we should look beside us and try to keep up. This is a great system for keeping the group together. But it didn’t take long for my shoulders and back to start to hurt. I began to fall behind. Very far behind. This was the point this experience took a very bad turn. I was looking ahead at the community, and seeing the wall between it and myself. I couldn’t keep up, it was way to painful. I had to slow down, almost to a halt to even keep moving forward. This activity was supposed to create a sense of community but instead I was locked out, for a reason I had no control over. I started thinking “Well there is the useful part of the community, and here I am, 12 feet into a row of acorn squash while they are so far ahead I can hardly see them.” It brought up a lot of pain around not feeling useful to a community because of physical limitations. So I proceeded slowly down my squash row, starting to cry because I was remembering all the times this wicked disorder has separated me from something I wanted to be a part of or I wanted to do. Every once in a while someone would turn around ahead of me, I wondered if they were wondering why and how on earth I had managed to fall so far behind. I continued down the row now thinking about all of the taunting I received in school, for running slowly, being chubby because I wasn’t able to run miles a day like other girls, or for just generally being rather horrible at sports. But how is one supposed to be good at things that cause them so much physical pain? Did any of those people know how much pain a dislocation of a knee or shoulder is? While I am practically able to shrug it off because I am so used to it. Better yet, do those people even remember their comments? Comments that are haunting me years later as I press on through the squash row , even though I hurt, remembering a particular comment of “if that were me I would just suck it up” after asking for an adjustment because my wrists were hurting so badly from writing. That comment was made eight years ago, in the middle of sixth grade and I will never forget how inferior I felt. And here I felt that same amount of inferiority while crying in the squash, significantly behind the community, and was overwhelmed by a sense of fear that I would never be able to keep up with ‘the community.’ That some how, this disorder would always build a wall that I am not physically capable of jumping between me and having an equal place in a functional productive community. I thought that surely there had to be something on this giant farm I was capable of doing! So when the groups switched, I decided I would ask someone that worked on the farm if there was something less physical that I could do to help. Something smaller, but needed. When the other group members came to meet people in their rows, I was so far back I realized that I probably wasn’t noticed, so I stabbed the clippers into the dirt, and walked over to find someone to ask about another job. When I asked, I was only told that I was allowed to just take a break, I could just ride on the back of the tractor. This was meant to be good for me, it wasn’t something that was done out of being mean or cruel, but there simply wasn’t a use for someone that couldn’t do the physical work that was needed. This seemed to validate the sense that I was not useful to this type of community that I wanted to help so desperately, and even more so, not have my disorder noticed. As I was up on the tractor, taking on a self assigned task of efficiently packing the boxes of butternut squash I wondered if my classmates were wondering why I wasn’t doing the same work as them. Why I really wasn’t doing much at all. The group I was with I am sure had very little judgement on me, but it was hurtful to feel so disconnected to the group I was supposed to be connecting with. I was up on the tractor, and ‘the community’ was down in the field, picking squash. I was filled with doubt about finding a place in a community in this world, because we were in the same field, but I felt worlds away. Worlds away with no means to travel closer.
Posted on: Wed, 24 Sep 2014 02:38:53 +0000
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