August: I am losing my vision

Remember when I wrote about headaches?

Maybe you don’t and that’s fair. I haven’t updated this page since March.

I stopped writing for months. In April I returned to school. Massage Therapy school.

Last week I decided that I don’t have time to study Massages.

I am losing my vision.

I recently learned (thanks to a new doctor) that I have a progressive genetic eye condition called RP, Retinitis Pigmentosa, consisting of: Night blindness, light sensitivity and an annoying, fluttering, filter of glimmering lights in front of my eyes at all times, obstructing almost all of my peripheral vision. I have already lost a good deal of my sight. I might not get worse. Or, I could lose all my vision by age 40. Each case is different. No one can know what will happen to me.

I have been telling my eye doctor for years that I can’t see.

A year and a half ago I tell him that I stopped riding my bike because I am hitting pedestrians and I have endured a very bloody slashed finger injury from slamming into a counter I didn’t see while holding a glass.

I have bi polar disorder so it is fairly easy to gaslight me. I believe, at anyone’s accusation, that I am just crazy, dramatic and unreasonable. I believe that these things, blindness and the resulting accidents, are my fault. It was in my head. I was just stressed out. I went back to school feeling, if I could control my pain enough to make it through the day (which I wasn’t doing), I could help other people do the same.

Headaches worsen as schoolwork accumulates.

To relieve stress, a friend and I go to the movies. We see Godzilla.

Thanks to Godzilla, I know I am blind.

One of the earliest signs of RP is night blindness, which includes no ability to decipher low contrast images. I have had varying degrees of night blindess for almost my entire life. Close a door, turn the lights out and it is pitch black and I am terrified.

Godzilla is grey on grey on grey on grey. I see nothing on the screen.

Half way through I ask my friend “can you see anything?”

“It is dark, it’s not just you.” (That’s something people always say, “it’s not just you, that’s hard to see” despite the fact that I see nothing. It isn’t that I can’t really see. It’s that I see nothing.) “It’s harder when they’re underwater, for sure.”

“They are underwater?” I see nothing. Black screen. Nothing. People around me are reacting to what is on the screen. I see nothing.

Once they start shooting the monsters, the screen becomes a strobe light. Immense pain, stinging straight to the root of the eye. I cannot open my eyes.

I text another friend of mine, my friend who took me to see a doctor in Montreal five years ago when this problem led to almost complete blindess in one eye,. She tells me to leave and get a refund.

Refunds aren’t really my style. My style is more, blame myself now, get home, cry.

“You should at least mention it for the sake of other people who may need a strobe warning.”

So I do.

“Sorry, are you the manager? Sorry, but I was just in Godzilla? And, my friend is still in there, she’s finishing the movie, but I had to leave? Because….is there a strobe warning on that movie? Is that a thing? My eyes are really really sensitive to light and had I known that there would that crazy of a light show, I would not have a bought a ticket so, it’s fine, it’s totally ok if you can’t give me a refund but just if you could let, maybe if there is someone else you can let know because it’s just, I couldn’t watch that movie.”

That is what I told the large man who towered over me giving me his full attention and immediately responding with, “I can get you a refund right away.” Right away.

I spent the money on a beer from their overpriced lounge as I waited for my friend to leave the theatre. She arrived, describing what she saw, referring back to the beginning of the film as if I could see anything. I had to keep telling her, I can’t see, I couldn’t see any of that, “But you know what I’m talking about, the part when they are in the cave with the…” no, I can’t see.

I haven’t been able to watch movies in a theatre for at least three years.

All I see is the center of the screen.

I cannot take in the whole screen at once. My eyes dart around. I exhaust myself. I fall asleep. Goodbye $15.

I don’t want to go to movies. Not sorry.

I don’t want to go to concerts. Not sorry.

I don’t want to read long emails. Not sorry.

I can’t see and I am tired of hiding it.

What will I do when I can’t see what I’m writing? When I have to find another way to write? Will that happen? Maybe.

So I quit school.

I’m a writer. Again. I will finish a novel and a play this month. There will be a reading in a couple weeks. Follow me on instagram for updates…if you have vision. If you would rather not fake your way through instagram, I understand. Send me an email and I will tell you where I am this month.

Please be well,

-Rachel

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