There are very few things that have been a part of my life as long as writing has. For ALMOST all of that time, though, there has been one thing--one looming thing that for so long, in so many more ways than I could appreciate, has been a guillotine slowly coming closer to my neck.
Or, as it seems, my eyes.
I was diagnosed with Type 2 Diabetes when I was twelve. I started really writing when I was around eight, and its actually really weird to me that this is the first time I'm really thinking about that overlap.
But the point is, I was never a great diabetic. There were a lot of reasons--control, anger, being a teen with a disease while my parents were divorcing, while I switched schools, while I was dealing with chronic, debilitating migraine headaches. Mostly, I didn't want other people to think of me as sick. I didn't want to BE sick.
I still struggle with that. Diabetes is a federally protected disability, and the weight of that hits me every time I check a form or apply for a job. I'm disabled? How does this make me disabled?
For all the prevalence of diabetes, it's not one a lot of people really seem to get, but more than that, there's just something about having something "wrong" with you (not unlike being overweight!) that invites people to offer their unwanted opinions. It seemed way easier to pretend I didn't have it.
Not the greatest coping mechanism. Especially because unlike, say, a gluten allergy, if I ate too much sugar I didn't really feel too different. It was easy to ignore. I'd like to say this was a habit I dropped in my teen years, but no. I have never been a consistently great diabetic.
And now it's catching up to me pretty hard core. Seven months ago, I had a little floater in my eye--I called it a dragon, and lots of people told me it was totally normal. It was about a month before my regularly scheduled yearly diabetic eye exam.
But I decided to check it out sooner rather than later, and it turned out I had fairly developed diabetic retinopathy, which means that my retinas were full of bad blood vessels caused by the diabetes, and they were weak, easily broken. My dragon was actually blood, trapped in my vitreous fluid, hanging inside my vision, invisible to everyone else but inescapable to me.
The next few months were pretty heavy. Slowly, one eye and then the other would bleed more. I had laser treatments multiple times in both eyes (which feels like someone is scratching the back of your eyeball), I lost my ability to drive for six weeks over the summer. I stayed with my mom for most of that time, and honestly, I fell into a bit of a hole. My independence had been taken away from me, and that crushed me.
More than that, there were days I couldn't read, and days I couldn't write. I felt--I FEEL--pretty broken. Both in the sense of heart, and in the sense of a toy you return to ToysRus. I am both blessed and so grateful that I have so many people to lean on, and really resentful that I have to lean at all. I don't know how to cope with that feeling.
At the end of the summer, I got a vitrectomy in my left eye (link is an explanation and not an ad ;-) ). For a few weeks, I felt light, hopeful--I started making plans with friends again, thinking I could drive anywhere. Maybe it was over. Maybe my new EXCELLENT habits as a diabetic had finally caught up to me and the worst of the damage was over.
Then, actually at several book events, I had a series of really big bleeds in the right eye. I'm proud of the fact that I kept it together for you guys, even when I wanted to cry and run off stage. Often times I would have to ask fans to spell out what they had written on the post-its, not because I couldn't read your writing, but because I couldn't read. So whether or not it was done with intention, thank you so much for that kind accommodation.
It hammered two things home--first, I needed more surgery, and second, this wasn't ending any time soon.
So tomorrow is my second vitrectomy surgery. I hope it will go well--my doctor is wonderful and skilled. But more than that, I'm trying to figure out how to cope with the horrible statistic that I could be blind in five years. I'm trying to cope with the spectre of that next bleed hanging over my head.
And yet, I'm really grateful. The days where it doesn't give me a horrible headache to look at the screen--and when I can see it at all--have been crazy productive, and I am SO IN LOVE with this new series. I cannot WAIT to share it with you all. And I've never felt more grateful for my teaching positions than this year--they have been feeding my soul and showing me that writing isn't the only deep, soulful calling I have.
Also, I'm grateful for my family and friends that have been incredible, and particularly for Tiffany Schmidt suggesting that maybe this would be a healing thing for me to write about--so much of my diabetes and my experience with DR has revolved around hiding it from people, and it's never felt genuine.
I'll keep the comments open, and if you want to comment, I welcome that, but I will admit that I may not respond. I'm reading (when I can!).
But I love you all--including brave authors that help me understand it's ok to be open and vulnerable, and the friends, fans, and family that make it ok for ME to be open and vulnerable. Much love. xx