Writing project & having an autoimmune disease

This is terrifying to admit, but I nearly have a first draft of a novel. It’s not that uncommon for readers to figure out they want to produce something themselves, but it’s still a new thing to me. What makes it even more terrifying is that the beginning, a lot of middle parts and the ending is written, there’s just scenes in between not written out. Mostly because I very much discover the story as I write, and some parts which seemed too “obvious” to me in how the plot would flow wasn’t prioritized. And so I skipped writing them, for the sake of keeping my brain on what it considered the storyline. And hopefully this year I’ll write them out and stitch this patchwork into a real quilt of a first draft.

It’s not that I have to get it done this year, but it would be a good way to bring it to a temporary close and move on to smaller writing projects. I started writing it as a coping mechanism when I got worse from (and was diagnosed with) my chronic autoimmune illness (Crohn’s disease) and I very much knew that at the time. But it was a pretty good one. I had a lot of very vivid dreams because of the pain I was in, but the imagining of stories kind of turned what would’ve been nightmares into action-scenarios. Some nights I wasn’t quite in control or lucid while dreaming, but it was like I was the narrator figuring out if something would work logically in the storyline and even stopping attacks on me and my group if they didn’t make sense for the plot. Of course, the dreams and the story I wrote was separate things, I didn’t have that much control as to place myself within them. But it definitely helped me get some peace with my situation.

I won’t do anything with this first draft when it’s done, except rework it a bit. It’s been a process, the project has grown with me as a hobby. As I went back to it over the years, my writing had gotten so much better and so I never got to finish it because I was simply gritting my teeth at what was on the page and rewriting. But it makes sense to me that I didn’t write the end before recently because I very much started it before I was an adult living on my own, then grew into that. I had written major conflicts into the book, both on a personal level and on a city-wide level, and hadn’t had enough experiences to solve them. And then I realized you can solve the smaller problems or the bigger ones, but rarely are both solved all at once. And that’s how you get characters who both win and lose, and thus an ending to a story.

I’m really ill again. Which is why I’m writing this or thinking of the story. I’m currently in my 4th year of studying physics, a bit behind already because of illness. But most of the people I study with took an extra year, because it’s a challenging study programme. I have to make the choice soon of whether I want to apply for a masters degree in physics, as well as in what field. It’s difficult feeling confident in your abilities and discussing them with a potential supervisor when you are not able to study as you used to, even if you know it’s temporary. Because in the middle of it all, my chronic illness worsened and I can do nothing but wait for my appointments.

I hate the waiting. I hate hyperventilating outside of a doctor’s office because they haven’t read my case and make wrong conclusions they won’t be talked out of. But these worse periods are never that dire. Even when the world felt like it had come apart from my pain, I still bounced back. I might not remember the Brandon Sanderson book I read that summer, but it encouraged me to wean off heavy painkillers early. Even when my pancreas got inflammed, which was a known risk post-surgery. It’s simply amazing how fast a human body can go from not being able to walk a hallway to running up hills. And how long the after-effects can stay in your body, making you never certain if the running will be effortless or if you will suddenly pass out at the top.

I have on average gotten worse from my disease every two years or so, in a kind of atypical pattern as my body just gets allergic to the medication I take and I have to start a new one. This time it just seemed to stop working by itself. It’s a many-month process each time I get worse because the new medications takes time to start working. On the other hand, the medication I’m on right now was approved for use less than a year before I started taking it, so I’m constantly buying myself time and blessed that medical science continues moving forward. So this spring I’m taking it slow, not expecting much of myself or my body, especially not my brain. Which coincidentally signed up to get an adhd evaluation before all this went downhill, as I looked back at my life and came to realize some patterns.

Still, I’m happy, in all other aspects of life. Which is a wonderful feeling. To be in crisis, but to still not be in crisis. I know I am a disabled student all the time. But I’m allowing myself the space to delve into what that means when I am worse like now, and to forget what that means when I’m better.