The usual disclaimer: This post is meant to help writers seeking to accurately portray disability in their books and to help other young adults voice their own experiences with disability. It is not meant to be definitive or to speak to any experiences other than my own.
Last week, I walked y’all through an overview of the lengthy process I went through to obtain a diagnosis and the medical system hiccups I encountered along the way (meanie pants doctors, namely). Today’s post is going to delve a little more into some of the thoughts and emotions I experienced during that time.
There are many, many things I could say here but it would get crazy long and you would all fall asleep. So what I will say is that my principal emotions, over the course of the year it took to get my first diagnosis, and on through the subsequent years, fall into two main categories: Blessing, and Despair.
Despair is a wee bit dramatic. I can only think of two times I felt what I would call despair over my situation. But I remember driving home from the doctor sometime in the middle of everything, loaded with medications that made the world around me heavy and thick, and crying as I wove along a winding country road in late autumn sunshine. Because the possibilities they were flinging at me then all came with the same conclusion, and as much as I wasn’t and still am not afraid of dying, I’m afraid of the how. I didn’t want to become a prisoner in my own body, able to think but not feel or move or speak. I didn’t want to lose my mind and be dependent on everyone around me, unknowing. I didn’t want my life as it was to end. I finished college early, I was in a great job, I had started graduate school – I hated that in an instant, it was all fading before my eyes.
I remember sitting at church at a memorial service and fighting to keep from sobbing as I fought back the shadows of my own mortality.
I remember my body seizing up and falling from a chair, unable to control my emotions, and I remember staying there and soaking the carpet with tears and the overwhelming sense of things that weren’t fair.
Friends, when you go to write about disabilities, it’s a fine line to walk. Because I am and have always been independent and strong, and taken pride in those things. I’ve always wanted to stand on my own two feet, succeed or fail, and to be a help to everyone around me while taking as little help as possible. To be accurate, you need to emphasize the fact that we are not “brave” or “so inspiring” – we’re just people, living the lives that we have just like you do. But you also can’t ignore the feelings of helplessness and being alone that spring up. I don’t venture to speak for everyone, ever, but speaking just for me I’ll say – 99% of the time I see my disorder as just a tiny piece of what makes me myself. But that 1% is wild, powerful, and prone to breaking me apart when it arises.
But on to the other category of feelings – Blessing. I will forever credit this disorder with giving me the eyes to see the beautiful things in humanity. The smallest things were huge to me back then: a note, a text, a trinket. The people who remembered and asked how things were going. The coworkers who could read my face in a second and step in to take over an interview when I was seized with movement. The meals. The grocery deliveries, the rides to class from people I didn’t even know that well, the help with my housekeeping and laundry. I still tear up now thinking of the millions of small kindnesses I’ve found over the years since I got sick, and how can I hate something that has given me this kind of opportunity?
There is much, much more I could say on this topic because my emotions were CRAZY, but I’ve already written a very long post again. If you have any questions, feel free to ask below. I’m open about it all. As always, if you have a story of your own, please share it with me. Community is the greatest gift we can give to each other.
Happy Wednesday everyone!