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Diagnosis – Piece of Cake!

It’s a little over a year now since the launch of:

The Redefining Disability Awareness Challenge,

on Rose’s blog.

I would find it not long after and make the decision to join in here.

One year later and another summer has arrived. I have been skipping some Memoir Monday posts, a summer break of sorts, but I am nowhere near out of things to say on the subject of disability awareness.


Q: At what age were you or your loved ones diagnosed?

A: This question, I thought, would be better answered by those who remember what it was like at the time. I was only an infant after all.


I asked my parents to relay the events of those early days. This is what they said:

Diagnosis for you was kind of gradual. First, I thought things weren’t quite right when you were between 2-3 months because you didn’t follow with your eyes like most kids. The family doctor didn’t notice anything until I pointed it out at the end of your 3 month checkup.

It took a week to be sent to an eye doctor and he realized it was serious but didn’t diagnose anything and sent us to a Pediatric Ophthalmologist.

Dr Orton said that he thought it was Leber’s and said that you were visually impaired but he never said the word blind. We waited until you were 8 months old before they put you under anesthetic and gave us a positive diagnosis.

It was always upsetting when we were dealing with doctors, but as a young baby there were few differences.


was involved because of a suggestion from other parents of a blind child by the time you were 8 months old and therefore your development was never really delayed. They were very helpful with lots of suggestions.

So first we just didn’t really know a lot of details and were a little in the dark. It was kind of a wait and see.

With your brother, we asked Dr. Orton about him on one of your visits and he wouldn’t even look into his eyes (2 weeks of age). He said that he had to be older before he could tell us. We knew he was blind by our own experience by the time he was 6-8 weeks old. I don’t know if it is better to learn gradually or be told everything up front.


These things couldn’t have been easy on them, but the life I’ve had since being diagnosed is proof of how well they adjusted and thrived as our parents. I owe them everything.

This is where I say that, up until now, I have used the RDAC to write about blindness as a disability I have lived with, through the good and the bad times, but there would be more diagnosed, and this year marks twenty years since the second round of diagnosis would begin.

Going forward, I will be starting a new topic on this blog: Piece of Cake.

This will focus on the kidney disease, that would be added to my diagnosed syndrome.

I have wanted to write a memoir for many years about this time. I had the name picked out from that first day I sat at my brailler and started writing.

In the months and years to come, I will be looking back on these turbulent events, through the power of words.

Next week:

How has your life changed as a result of that diagnosis?

Redefining Disability – Facebook

Come check things out over there.


Memoir Monday: My Fear of Going Blind

It’s recommended that you should get your teeth cleaned every six months and have a routine physical. When you are blind it makes sense to have your eyes checked, or does it? IF they don’t work, what’s there to check anyway? It’s important to make sure they are healthy, or as healthy as they can be, but most times, like everyone else it is easy to get busy and forget to make that appointment. I myself have gone four years now without getting checked by my eye specialist. On the surface there was really no need. Things have been stable and other things in life then take precedent, but it is nice to know someone is there if there ever is a problem.

My biggest fear would have to be losing someone I loved, of course, but my second biggest fear would definitely be losing my sight.
When I say this jokes can be made and assumptions too. I am already blind, but not totally. To me, the idea of losing the little remaining vision I still have is as scary a prospect to me as it would be for anyone else to lose their vision at 20/20. It would effect me in many of the same ways and take away the comfort and familiarity I have come to rely on.

I was born blind, but when I think back to my early childhood I can no longer quite believe how much sight I had compared to now.
I loved to colour and draw pictures and dreamed of becoming an artist when I grew up. I am one of the lucky blind people who knows what colours look like, can remember their brightness and their beauty. I miss them every day.
When I started school I was not sent to a school for the blind and I kept up quite well. I learned to read and write with my peers because I could see large print. I wrote with dark pencils and markers and with thick black lined paper.

I wore glasses until age twelve and they made a world of difference: from a blurry and dim world when I wasn’t wearing them to a whole new level of clarity and focus when I was.
When I was twelve I encountered the first real challenge to my sight that I’d yet faced. Up until that point my small amount of vision was stable. I could not see nearly as much in my left eye as I could in my right; my right eye was my stronger one, yet with tunnel vision. I got by.

I will go further into the troubles I had with my eyes in a later post. For several months things became extremely complicated and frightening and I then found myself coming out on the other side of it all, with less sight and a newly found appreciation for the bit of vision I still had.

I no longer wore glasses because they had no effect. They were useless to me. I was only able to read braille and my hopes of becoming a painter were dashed. things would never again be as they were.

After that I was once again stable. I continued to see my ophthalmologist routinely and everything looked back to normal. There was nothing to see. For the doctors this was clear, but as the years passed I wasn’t so sure.

It might sound silly, but I can’t tell if things have remained stable for my little remaining sight. I see with very little clarity or definition, yet I can still see more than my brother I am sure, who has only ever been able to see light and dark, movements and shadows. I am left to remember fondly what my family look like and with each new person in my life these last fifteen years, only a vague picture is visible compared to the clarity and shape faces used to take on.
I try hard to explain how I see and fall short of it every time. I don’t forget what red, blue, and yellow look like, but I can’t tell whether or not my vision is as bad today as it was ten years ago or even five.

I write this post today because I finally went for it and booked an eye appointment for tomorrow. I am sure he will see nothing new and to him it will be very straightforward, but to me not so much. I want to know for sure what’s going to happen, and as smart and knowledgeable as my ophthalmologist is, I don’t think he’ll be able to answer.

My eye condition is common but my syndrome is not. I hate those unanswered questions: will my sight remain at this level for the rest of my life or will it slowly worsen? Has it slowly worsened over the years? A simple enough question at first glance, but nobody knows; not even me.
Something so subtle and going on over time, over a span of many years. I doubt myself. I try to recall how it used to be and how that might compare to how it is now and I feel more confused than ever.
And then the silly irrational hope that tomorrow he will say there is something he can do if, indeed, it has or is getting worse, something that could bring me back to a time of permanent markers, large print, and bright vibrant colours.

I will try and explain all of this to my doctor tomorrow. I am sure he will do his best to comprehend what I am trying to get across. He’s probably heard it all before. He is a specialist in diseases of the retinas and I am incredibly lucky to have him as my eye doctor, but he isn’t magic. No matter how old I get and how comfortable I think I am with being blind, there’s still that small part of me who hopes, like a child on Christmas, for magic and I fear losing the “sight” I still do have. I know I would adjust, like my brother and friends have, but a world in total darkness remains a huge fear, lurking somewhere, just out of sight.