I wanted to share a quick story about something that happened to me the other day that is a lesson on how life with a chronic illness or disability is both normal and abnormal and how you learn to live with that fact and carry on.
I did a reading at a live lit event called Tuesday Funk earlier this week. I actually read a version of this piece, which I find fun and wanted to share. I’ve read for Tuesday Funk before and I’ve done a few readings so that kind of thing doesn’t freak me out. I’ve had a normal few weeks for my eye so I wasn’t thinking much of it. The room in the venue we were at was kind of hot and dry (this isn’t a criticism of the venue), so when I got up to do my reading, my contact lens rolled into my eye and I started to see quadruple.
So, as I have mentioned in an earlier post, because of my keratoconus, without my contact lenses, I am severely visually impaired, so the shock of that happening in the middle of my reading caused vertigo and I thought I was gonna pass out. I had to stop briefly to take a seat, so I could finish the rest of the reading. This all happened pretty quickly, and it didn’t disrupt things too much. I was able to focus enough to read the the rest of my piece, people laughed at the right parts and I was able to run to the bathroom after things were done so I could handle my contacts.
The good thing about everything that happened was that I was surrounded by a lot of friends – many of whom know about my eye problem – so it wasn’t super disruptive because they were there to help me out. I was also very confident about the piece I was reading and had practiced it multiple times so I was able to go from memory when I couldn’t read. The bad thing, at least for that moment, was it did shake my confidence and trust in my own body and my bodily autonomy.
In the bathroom after my performance, a couple of audience members asked me if I was OK. I rushed to try to explain – everything – yes I’m OK, it’s happened to me a few times, I have an eye disease that causes visual impairment blah blah blah. But it didn’t really matter, and even to explain it is just … awkward. But ultimately,after fretting for a bit, I felt good about my performance, and although I was a sad it didn’t go perfectly, I felt very good about sharing the piece. The very next day, I was a guest on a variety show called The Geek Show and that pretty much went off without a hitch.
I’m not bringing this up to pat myself on the back for triumphing over a setback or even with any kind of valuable lesson for anyone in a similar situation, but just to bring up a slice of life that I think doesn’t always get seen when you do have a chronic illness.
Part of me freaked out because it feels like my invisible illness is becoming less and less invisible by the day, but it also made me feel so secure to be in a situation where it only caused a small blip in the show, and it went on, as life does. Even a couple of years ago I wouldn’t have been able to say that and it just reminded me of how far I’ve come in dealing with all this, thanks to the support of many people, so all of you who support people who have illnesses in big and small ways, thank you.
My next post (or couple of posts) will be about going on my first long international trip in about 7 years and how I will do it while dealing with Keratoconus. Should I call it “Flying Blind?” Too corny?