I haven’t been posting as much of my personal writing because I am working through a lot of things. It is hard to think about and hard to write about. 2015 was an incredible and powerful year for me, in both good and bad ways. It seems impossible that all of the events of 2015 are bound together by time. It was exhilarating and triumphant and horrifying and so, so costly.
I am very good at minimizing and compartmentalizing, especially when it comes to my own health. My health care is like business for me. The actual process of managing my physical health is stressful and difficult but it has never been the hardest part of this experience. That hardest part is all the things I feel like I lost. No amount of struggle can force those into discrete pieces to be boxed up and pushed aside.
The loss of those things hurts more now that I am more stable and things are less emergent. I am no longer living in one continuous crisis. It has given me some distance to reflect on my life and my health and all these plans I used to have. I used to write about them every night before I went to bed, quick notes on moving toward a goal or long essays on all the things I wanted to do. Then I went to sleep one night and woke up the next day and none of those things ever happened and I stopped trying to make them.
I think a lot about the life I used to have. But for the years in between, it is, in many ways, not terribly different from the life I have now. Every day, it feels more and more like I was never the person who wrote those journal entries. I remember her, but that’s not the same as being her. I don’t even know when she left. A new season, then two, and suddenly it has been seven years since that girl even existed.
I’m trying to pick up these pieces she left and recraft these dreams, to remember the way they made me feel. I am trying to fit into the space I occupied before I got sick and I just don’t anymore. It’s like forcing something into a place it doesn’t belong, hitting it hard with the flat of your hand until it splinters and your hand hurts. Anything can fit if you hit it hard enough, but it will never be whole again.
February 29 was Rare Disease Day. I wanted to write something positive because I’m a very positive person and because I am hopeful and I want people to be hopeful, too. But the truth is that every sick person has been traumatized by their disease and there will always be days or hours or moments when they feel that keenly. We can overcome and live good lives but this history follows closely and it takes very little to run your mind over it. Sometimes it is hard to get out from under that.
I thought all day about a story that could make people understand what it means to have a rare disease, to see what I see, but I don’t think that story exists. There is no rare disease story, just like there is no systemic mastocytosis story, or Ehlers Danlos story.
There is only my story. So that’s the one I’m telling.