This feels like it was all my fault
I read an article recently that showed fairly comprehensively that being a trans girl and transitioning increases your chances of being diagnosed with MS. As soon as I read it I felt a familiar feeling, my face flushed red, my heart beat harder, and my feet pushed me backward in the seat, as though I could escape the feeling by burying myself in the wall behind me.
Children go through something similar when they experience a traumatic event. They often enter into a difficult catch 22, where to think of the thing that has happened as completely random, even if it clearly was, means that there is nothing you can do to stop it happening again. So children will often enter into some magical thinking to consider themselves somehow responsible, because sometimes being to blame is preferable to being completely out of control.
I think becoming disabled invites a similar kind of thinking. Whether by accident, illness, or circumstance, becoming disabled is often genuinely random. When I talk about the sound of fate’s dice hitting the table, it is because the advent of the disease, the onset of relapses, the chance of remission, even our prognoses, are totally out of our control and in the case of MS almost entirely unpredictable.
The idea that even the prognosis is a mystery makes me blink rapidly in disbelief even now. Every so often I hop online to see other people’s experiences and I often find both people who have nearly no long-term impact of the disease alongside people who have quickly become severely disabled. I read the story of a teenage guy who’s father had MS and largely stayed in bed, watched tv, and slept, and he was wondering what to get him for Christmas. Those stories do something to me. My face flushes red, my heart beats harder, my back to the wall both literally and figuratively.
I get what happens to these children and I find myself reaching to the same cognitive escape. Rather than feeling out of control, I begin to think that maybe I’m responsible, that maybe I did this to myself.
Somehow, this feels like it was all my fault.
I imagine that this is a familiar feeling for all of my disabled kin out there, tempted every so often to see themselves, their decisions, as reason for what has happened. Somehow it’s my decisions that really grip me. I guess I can’t help who I am, I can’t regret the person I am, but I can consider the decisions I made as reason for what is happening. I’m going to let you in on one of my deepest fears, that maybe… somehow… I deserved this.
I calm myself, take a deep breath, and I remember three things. First, I remember that MS is no one’s fault, that fate’s dice hit the table for all of us and while I once enjoyed being able to ignore that fact, that is a privilege I can no longer enjoy. Second, I remember that MS has given me something I did not have before, kinship with the other mighty and defiant disabled folk out there and a community I can always reach out to who all intimately and intuitively know what I’m talking about.
Third, and most importantly, I remember that I am me. Being trans and transitioning might have increased the chances of me having MS and maybe had I not transitioned I would not have MS. But if someone had come to me at the start of my journey and told me that I could indeed transition but if I did I would as a result, 5 years later, be diagnosed with MS…
…I would still have transitioned.
Yesterday I was out in my chair stopped by the side of a road. There were people with one of those laser measuring devices all standing around watching me sat there waiting for a break in the traffic. Finally, the last car passed me and with music in my ears I pushed at full speed down the middle of the road. Those people probably just went about their day, but in my mind maybe they were just a little impressed with how fast this woman could move in her chair.