Writing with a Disability
2022 has been by far the toughest year of my career. I don't say that lightly or with an objective of gaining me your sympathy. I'm just stating a fact based on the medical circumstances I've endured these past eight months.
Last year, I began losing my eyesight in my left eye. I'd previously been diagnosed with a pre-glaucoma condition (I thought that condition was for the elderly?) but things had been stable. Until sometime last spring when I noticed my vision becoming fuzzy. I'd wake in the morning ready to start my writing day and it was like looking through a foggy window. And it kept getting foggier.
My ophthalmologist (that's a difficult word to spell - I had to look it up) recommended that I see a cornea specialist because the cells in my cornea had basically died and disappeared. Say what? I had no idea that could happen. And no one really knows why.
Fast forward to the appointment where the surgeon said I needed to have a procedure called a DSAEK - an acronym for a partial cornea transplant where they refill my endothelium cells with donor cells.
As with any surgery, there are complications that can occur. And the success rate of these transplants isn't very high. But what else could I do? I'm a writer. I write. I need to have my vision. So I went ahead and proceeded with the surgery.
I won't go into the nitty gritty details, but basically, the 1-day post surgical update indicated the graft attached successfully but it "shifted" ever-so-slightly so that the cells left a little area at the bottom of my cornea where it wasn't covered. The surgeon said, "it should be fine! The cells will naturally migrate down."
Guess what? They didn't.
I waited 7 months for something to occur. I spent days and weeks in pain (because that area of my eye had no protection). I developed blisters. It hurt like hell. Stabbing, burning, debilitating pain.And all the while, my eye pressures were dangerously high due to my "steroid reaction" to the required steroid drops I had to use post-surgery to keep the graft from failing.
Okay...six months in and it's now early summer. Things had settled down enough where I still couldn't see clearly but they'd taken me off the steroids and my pressures were good. YAY! Some good news. But nope...that didn't last long because soon my eye began to reject the transplant without the steroids.
Countless office visits, specialists, eye drops, oral meds...here we are in August and it appears I'll be having more surgery scheduled later this fall. Okay, I can deal. But this time, it's not just another transplant, it will also likely include an initial surgery to have a drainage stent put into my eye tear ducts to help my eye remove the moisture. My eye doesn't do that and it needs to in order for a new graft to heal.
If you've gotten this far in this post, I bet you're wondering why I've decided to share all this with you? It's a little TMI, I suppose, especially if you only want to hear about my books.
But the post is really about how to face challenges and find ways to count your blessings in the midst of chaos and catastrophe. Because I know I'm not alone in dealing with the shit life hands us.
I'm lucky in so many ways. Yes, my eyesight is extremely hindered by this condition. I have had to make pretty big changes to my writing routines and schedule. I can't write as much as I used to on a daily or weekly basis. Sometimes, I can't even sit down to write anything for a week. But...I CAN still write. I do still have good vision in my right eye. So there's that.
I also have health insurance through my husband's employer benefits. There's been a lot of doctor visits and tests and procedures that have been covered. For that, I'm so very grateful.
I have a great support system. My family and friends to rely on. Who listen to me gripe and complain when I'm down or in pain or frustrated because I can't do something I used to do. People in my corner who will lovingly joke with me when I have to wear my sexy eye patch and big ol' glaucoma sunglasses to shield my eye against the bright light and wind.
The moral of this story: life can sometimes suck. But we don't have to allow it to suck the joy or fun out of it. And in the words of the late Olivia Newton-John, "You never know what the future holds, so I am just enjoying being happy..."