My official inauguration into the blind world of Retinitis Pigmentosa
Today marks my official diagnoses. I am: kind of blind.
I have known for a long time that I cannot see most things.
My vision is destroyed peripherally.
“How long has this been happening?” Three different technicians and a doctor asked me today, four different occassions. I keep telling them I don’t know, I keep telling them,
“You cannot remember. You’ve just had this problem for maybe your whole life. ” the doctor eventually completes my memory for me.
I nod my head.
Sparkling occasions in the corners of my eyes, all along the sides, above and beneath the tiny window of clarity that I am actually able to see, dots flashing, like white noise, like strobe lights, like when you stare into a lightbulb and look away and then momentarily all you can see are angels: that’s all day, all the time, for me. Except for in this tiny circle right in the centre of lightening rain. I can see you in that circle. Otherwise. You need to move over, and then a little bit over again and verbally direct my stare towards your existence or I will not see you.
A month and a half ago I asked my doctor if she could please refer me to a new optometrist.
“I don’t really like mine,” I tell her.
“Who is it?” She asks.
I give her the name.
“Oh I know him,” she tells me. “He’s actually really knowledgeable and brilliant. Maybe the two of you just aren’t communicating properly.”
For nearly ten years I have been reporting a faulty visual experience, evidence offered from my tragic anecdotal history of ridiculous accidents and subjectively physically abnormal optic insufficiency, abnormal considering I was walking the city expecting that my vision was Fine since Dr. Miscommunication told me it was: Fine.
“You just need to calm down.” He would say. “Have a beer. On me.” Laughter.
It took two years for me to admit that my symptoms had been getting much worse and to ask my family doctor for help. I reported my challenges: light sensitivity, headaches, flashing lights and also I can’t see. She felt alarmed.
She swirled her chair towards the phone and called the optometrist downstairs who just happened to be available to see me right away (which felt very British sitcom-I but also good enough). Within three days the doctor was able to tell me that I have a condition called “Retinitis Pigmentosa” (RP), a congenital problem causing progressive damage to the retina leaving the eye with vision loss usually peripherally but also, sometimes, completely.
Ok great THANKS FOR CHANGING MY LIFE, DOCTOR. So, what can be done about it? Nothing. Great. Bye.
I leave and go home and plan things…What do I want to accomplish with my life while I can still see…
My family doctor calls. She feels concerned with the optometrist’s discovery. She insists I consult with an ophthalmologist for a second opinion, an eye specialist, a woman who today told me that the optometrist I saw is not a medical doctor but SHE is so “do NOT,” (she takes off her eyeglasses for full effect), “take the vitamin A he suggested”.
“Oh I decided not to take that anyway.”
Otherwise she agrees with the original doctor. I have lost most of my vision and nothing can be done.
“The white area is Regular,” she refers to my test results, a round black thing representative of my eye and then a small white dot in the middle representative of the area of my eye that is still capable of vision.
She has referred me to the Canadian National Institute for the Blind for perks and more info. And do not take vitamin A. Got it. See ya.
The scary part is the future. But right now: I am Fine.
This post is the start of a new series about my vision.
I am not writing about self pity or sad feelings. I don’t really ever appreciate giving up and feeling bad. Not permanently.
Actually, this diagnosis has done the opposite for me: It has arrested all self-pity. I am awaken to the reality that many people struggle with invisible or visible disabilities. I am incredible fortunate, bring-a-tear-to-my-eye level Fortunate, to have a strong circle of care and support. To those of you struggling alone or who at least feel like you are struggling alone, please hear my applause in your heads at all times and keep going. Or, maybe find some support here because I am writing partially for you, partially for those of us who don’t always recognize you.
Instead, I want to take this opportunity to continue to dedicate this blog to visceral experience. The feeling of exclusion and alienation is not unique to those with sensory disabilities or disabilities in general. Alienation is a categorically average feeling. Alienation bases itself on the pain of being alone which is, as far as I can tell, usual.
I will write daily to corner that feeling, the feeling of being ALONE IN THIS MOMENT. I will write my experience as proof that That Feeling is just a feeling. I will get through everything every day with just enough energy left to write it down and if you’re feeling like a wink at your own experience in the dark, just come here and read a bit.
No matter where you are today, remember that This Too Shall Pass. Everything changes.
On that note I would like to sample my visual experience from the day:
“Rachel Ganz,” someone calls my name but I can’t see who until she steps in front of me to lead me down a hall, she speaks quickly,
“We are taking your visual fields first-and-you-will-return-this-way-down-this-hall-back-to-room-3”
Fear. Where the fuck am I and how do I get back down the hall, where is the hall, am I still in the hall…?
This woman is not an apt guide. She is military-esque. Tall. Lopsided. Brusque.
She tells me to sit down.
I don’t see any chairs. I take a step forward, looking downward, “SIT RIGHT HERE!” She brusquely yells.
She holds her arm out, I follow the direction of her arm, and then her hand and then: a chair. I sit.
Minutes later a different woman calls me into a dark room. I am glad to be away from the first woman. The second woman closes the door. I cannot see in the dark. She tells me to sit down.
Cool, not sure where the chair is again but my hands guide me.
The second woman is patient.
She waits the two minutes it takes me to sit down.
“Wear this eye patch”
I cannot see her. If she is holding out an eye patch, I cannot see it, I do not even know where to look and I am frightened to put my hands out because I don’t want to touch her inappropriately, boobs, thigh, face..no…
Her beige pants glimmer in the dark. I silently thank her for wearing beige pants. Perhaps in an ophthalmology clinic it would be a good idea if everyone wore beige pants.
I follow an eyeline upward until I see a string hanging, in slight contrast to her slightly bright coloured shirt. Grab, miss, grab again, if only this woman would help me, why she doesn’t expect a patient here to have trouble seeing in the dark I don’t know but GIVE ME THE FUCKING THING.
She dangles it. Why isn’t the eye patch beige? Why aren’t intelligent people more commonly compassionate? This is a place where blind people go: MAKE EVERYTHING GLOW IN THE DARK
I put it on. She tells me to put my chin “on the chin rest”. I put my head just above it and then I am lost in space.
She moves the machine to accommodate me. The test begins.
A fields test: put your chin on a thing and lean your forehead against a bigger thing. Now stare into a tiny light. Without moving your eye or head, watch for blinking lights. When you see a light, push the button you’re given.
The test takes a while. I don’t know how many times the average person would click the button. 50? 45? 600? I don’t know. I don’t click it often.
Hey doctors, I see blinking lights everywhere all the time. That is my problem, that’s this disease: BLINKING LIGHTS, that’s all I see all I see, blurring and distracting everything real. Just relax, just breathe, just have a sense of humour about the fact that this is a test designed for people who don’t see blinking lights all the time and you are failing because you are meant to fail because the point of this whole thing is to prove that you are a human failure and you can’t see.
I click the button a few times at the end when a few tiny things blink right in front of me and then a few more times just because Fuck You. The second woman tells me I can leave. She hands me my file.
I walk into the light, following the crack by the floor, feeling for a door handle.
I try to find the hallway I came from. I walk up and down, remembering that we turned to come here but where did we turn from? Slowly, slowly moving through an aisle of fast moving individuals, chairs and machinery,
I find: A door. Through the door I see: The brusque lady.
We came through a door??? She reached for a door handle and took me through a door?? I DON’T KNOW I CAN’T SEE WHY WAS THIS MISSION MY PROBLEM??
I open the door, ahead of me is the hallway where I was taken originally, leaving my parents, my purse, my past.
Out of nowhere a brusque hand grabs for my file,
“Great thanks take a seat just behind you now.”
I turn around.
You will find the chair if you look down.
Look down and a little forward.
A little forward, put one hand out, find a hard piece, follow your hand: It’s a chair. Sit. In the chair. Wait.