I Saw Orion

I saw Orion the other night!

I have not been able to really see the stars since my vision loss 12 years ago. If it's dark enough to see the night sky then I lose my central vision. This is a strange phenomenon that happens to me in the dark. I first noticed it one night when the moon was shining in the window and lighting up a small white rug on the floor. I could see the rug in my peripheral vision, but every time I looked directly at the rug it disappeared from my sight. I  amused myself by making a little game of it.

The same thing happens when I look at the night sky. I will notice a twinkle out of the corner of my eye, but when I look at the constellations they disappear. I love the night sky! When we lived in the country with no streetlights to obliterate the sky, the stars seemed so brilliant. I could see Orion from my bed every night. It was familiar and comfortable.

I have gotten used to not seeing the stars anymore, and when we moved into town we couldn't have seen them like that anyway.

But the other night was different. Because the leaves that normally block out the light have fallen off the trees, there was just enough light showing from the buildings behind us that I still had central vision when I looked out the window on my way back to bed from a 5:00 a.m. trip to the washroom. I looked up over the building and there was Orion shining so crisp and brilliant! I hadn't seen it for so long. I actually said, "Hello my friend. I've missed you".

Accessibility Frustration

I went to a Services Ontario Office last week to renew my Health Card. I approached the Greeters desk, told them why I was there, and asked what I needed to do. Despite the fact that I was carrying my white cane, neither of the greeters were particularly helpful;  I couldn't see that the number machine had five buttons marked "A" through "E" for  the various services offered (because they weren't lit or even back lit). Rather than pointing to the button the one woman just kept saying over and over again that I needed to push the button marked "B", as they both watched me search the screen with my palm for anything that might be raised. I could feel myself prickle with humiliation as the waiting room full of people watched me. It was my three-year-old granddaughter who finally found the "B". I took my number and slunk off to wait my turn.

The real frustration happened after I told the clerk that I was there to renew my health card and I handed her my paperwork. She told me I couldn't renew it without a piece of government-issued photo I.D. The health card IS my government-issued photo I.D., I said. Not good enough, she replied. Did I have a driver's license? [Seriously?] Holding my white cane in front of me I had to explain that I no longer drive. Well, I should have checked list 2 for the necessary requirements, she tells me, and hands back my paper work open to list 2. At this point I became upset; "I can't possibly read that list -  I have a vision impairment. Renewing a health card is not very accessible is it?" I asked her to write down the web address so that I could go home and read the document in its entirety using the assistive device on my computer. She happily complied, but wrote the information down in red ink and in the same-sized font as the written document in front of me. I sighed. "Why is all this even necessary", I asked? She explained that in order to renew your health card you need to prove that you still pay taxes in Ontario. Okay, I get that. Then she got the bright idea that I could return with a utility bill showing my name and address on it. When I said that we receive ALL of our bills by email so that I can read them on my computer, she looked dejected. "Oh dear, " she said, "printed online invoices aren't acceptable."

At this point I realized that I was stuck in a black hole of stupidity - I mean, who writes these policies, anyway?! I gathered up my papers and I left without renewing my health card. Accessibility is about more than wheel chair stalls in public washrooms. My next step is my MPP's office.

Faking It

I don't want strangers to know that I don't see well. Sometimes I'm forced to tell them - for example, if I'm trying to pay for something and can't see the prompts on the debit machine. Or when I don't want someone to think that my vision affects my judgment. Some people really do equate lack of vision with lack of intelligence. So I often "fake it" so I don't draw attention to myself. Well that little plan bit me in the ass on Friday afternoon when we stopped at an Enroute on the 401; we parked right by the door and there was only one curb to negotiate so I left my mobility cane in the car. It should have been a piece of cake, especially because I could take Stan's arm. But the curb was extra-high and I didn't lift my foot high enough - I fell flat on the cement spectacularly, keys and purse flying, in front of the a "packed house" of onlookers. I'm incredibly lucky that I didn't break anything, including my glasses. However, I can't say that only my pride was wounded because I am bruised and sore - and more than a little angry with myself! To add insult to injury, as I lay on the sidewalk some guy on the other side of the car said, "Nice car" to Stan!

It's What Colour?

I always felt so badly for Michael because he is colour-blind. As a painter, I appreciated the extraordinary array of colours that exist, and felt guilty that he misses out on that (the gene for colour blindness passes down through the mother). As a little boy, Michael would get excited when the leaves on the trees turned from green to yellow because yellow is one colour he can see accurately. I would put myself in his shoes by trying to imagine a colour that I'd never seen before - try it - it's not easy. So how could I possibly describe red, green, gold, pink, orange, or turquoise to him? He assured me that it really didn't matter because he couldn't miss what he'd never seen. I got a taste of what he meant recently when I began tutoring for Links To Learning: As the administrator showed me around she said I could set up at one of the green tables. I looked at the room full of gray tables and asked, "Which ones?" "The green ones," she replied. I felt like an idiot as I slowly said,"I'm afraid I don't understand what you mean." She looked at me for a minute, and then it dawned on me. "What colour are those tables?" I asked. "Green, "she said kindly. "What colour do you think they look like?" Now I know from being tested that I've lost some colour vision on the low end of the spectrum. And I sometimes have to ask Stan if something is blue or purple. However, now I'm wondering how often I get the colour wrong and don't know it. But like Michael said, it doesn't matter - I can't miss what I don't see.

Still here ...

After I very long hiatus I am back ... It's a little hard to explain my absence, but I guess to put it simply, I had a crisis in confidence about my vision loss. When trying to apply for a tax deduction over a year ago, I discovered that, according to the Canadian Government, I no longer qualified as "legally blind". The person who told me this was my eye doctor - and he was quite rude about it and all but accused me of trying to rip off the government. Even after he admitted that there are no tests to measure the effects of my optic nerve damage and how my brain interprets the scrambled signals it receives, I left his office feeling like a fraud. And in the typical way that I react to humiliation, I withdrew. I decided that since he said I wasn't "blind" then I wasn't. I didn't renew my CNIB card, and I stopped using my white cane. Which meant that I had difficulty getting around safely. So I stopped venturing out on my own. And I stopped blogging. Utter stupidity, I know. But still having issues with high inner ocular pressure in my eyes, I was forced to see another doctor. After the whole battery of tests he validated my description of the way I see. He agreed that there is no way to test it at this point, but that what I described is very much how other patients with optic nerve damage describe their vision. Unfortunately for me, the government uses such a narrow method of defining vision impairment that I don't qualify for any help. Thankfully, we can afford hundreds of dollars for a new computer and assistive software because otherwise I'd be SOL. This also begs the question of how I qualified in the first place; my neuro-ophthalmologist at Toronto Western Hospital understands the brain's function in vision, and referred me to the CNIB when I was discharged from his care back in 2005. Anyway, I stopped being stubborn and started using my mobility cane again. And I'm back to blogging.

The "Beauty" of My Vision Loss

Well, now I know that I'm not crazy - and no, I am not smoking mushrooms either! The gorgeous, vibrant colours that I see when I'm going to sleep is called "scintillating scotoma". It is defined as "a transient visual sensation of bright shimmering colours, as that preceding scintillating scotoma (aura) in migraines."
But unlike an aura, it doesn't just happen in the periphery of my vision or in just one eye, and it is much more beautiful. It happens to me about five minutes after I turn out the lights at night. It is so beautiful that I actually look forward to it! I had asked several doctors what this was and they all just looked at me strangely until I asked my new ophthalmologist, Dr. Whiteman. He cleared up this mystery immediately - it is an abnormal functioning of portions of the occipital cortex at the back of the brain - not my eyes at all! My brain has to deal with scrambled signals from my optic nerve all day, so once I stop looking at things (turn off the lights for the night) my visual cortex goes nuts for a while!
I wish there was some way to portray this phenomenon in art, but the movement is such an intricate part of the experience that a static painting wouldn't do it justice. The shimmering, pulsing flow of light and colour reminds me of Northern Lights, except that the colours are so much more vibrant; deep turquoises, electric blues, the most verdant shades of green. And then there's the gold, pink, salmon, and silver bursts of colour at one side or the other. There's no way for me to convey this to you visually.

This peaceful, dreamlike state I experience every night now is almost a perk to having optic nerve damage.

Being Labelled

I’ve been thinking a lot about labels because a life-changing experience often changes how others see you. For example, I have gone from being a “sighted person” to a “visually-impaired person” - or as the politically-correct will insist, I am now a “person with a visual impairment”. Supposedly the latter is more empowering, as labels go, but according to my understanding of English it is simply a passive phrase. I don’t know.

A friend asked me, “What do you say to someone when you need assistance?” I simply say that I don’t see very well – that seems pretty straight forward and unthreatening. I know a man who actually wears a button that says he’s visually-impaired so that others will know that he has low vision and is not just clumsy or drunk. The CNIB encourages clients to use a white cane to identify them as having low vision. I use my white cane strictly for mobility.

Whether I want to admit it not, optic neuritis left me with a visual disability. Unfortunately, it means that I need to be labeled so that others can “understand” me. I am neither fully sighted nor completely blind. The fact that I can no longer drive my car, cross the street safely without my mobility cane, or use my computer without assistive software tells me that I am blind. Rather than accept that I have impairment, I employ new skills and alternative techniques to do most of the things I used to do.

People are very curious to know exactly what I can and cannot see but don’t always come right out and say what’s on their minds. I find children’s honesty and empathy refreshing. I show them how my cane helps me “see” bumps and stairs and I love when they ask to use my cane to try it themselves with their eyes closed.

Adults on the other hand need the specifics; they want me to describe exactly what I see compared to them. There seems to be degrees of acceptance involved. It insults me when someone says, “oh well, then you’re not really blind.” Despite meeting the medical definition and government criteria, I guess to them the label doesn’t fit me – as if somehow I’m cheating or making it worse than it is. Yes, I have some remaining sight, but I have to work very hard now to navigate my new world and do all the things I used to take for granted. But I’m still me – neither label changes that.