TToT: Jagged Echos Off The Snare – Wet and Dry, #10Thankful #UnitedNations2016 #WomensEqualityDay #HappyInternautDay

Every single day that my vision fades, no matter how slowly over time, I remain, to some extent, a visual person. The sights I once saw, colours which used to be so bright, they have never left my brain. I attempt to bring what I still can’t help seeing in my mind’s eye out or else I go a little loopy.

This is what I like to call “BlacK and Yellow”.

“I’ll be yours instead in my head. I’ll be yours instead.”

Sweet World – Braids, from “Companion”

Of course, this song doesn’t sound nearly as thrilling here, but the line from above seemed to fit with the visual images in my head of which I am attempting to do my best to bring forward through visual art.

Nothing is so black and white or, in my case, black and yellow.

🙂

I’m thankful for black and yellow, the darkest and the lightest colours that I can only now see such a vague idea of, compared to how I will always remember them.

I am thankful that I had a few moments of pure blissful peace. All I did was play Braids on top quality sound and let that stereo sound take me away from everything. It was as close to meditation and drowning all my other chaotic thoughts out as I ever get.

I’m thankful for siblings, such as an older one who is understanding and does not mind helping me out with a writing project which has the potential of being huge. All it took was a request and my brother was all ready to go. I trust his insights and impressions after all this time. I appreciate that more than he knows.

That my younger brother makes such breathtaking music, with his friends, with his own talents, and now with his sister.

😉

He plays, unafraid, loudly and I feel the vibrations of that music’s power through the floor under my feet and into my heart and soul. He is so cool, his outlook on life and on getting on with it, as best we can, and not allowing negative thoughts and feelings to drag you down, no matter how hard they try.

And also for the pictures that show a new life and my sister’s own strength in giving that new and developing life a safe and healthy place to grow, for as long as it needs.

I’m thankful for fresh peach soft ice cream sundaes
.

I’m thankful for women who speak up on the most vital matters that I wish I myself could do/say more about,

such as this woman in particular.

She is one of my heroes, in feminism, in literature, and in the art of just being a decent human being who stands up for what’s right. She spoke most recently at this United Nations 2016 meeting for World Humanitarian Day.

I am thankful for the thing which happened 25 years ago this week.

Happy Internaut Day. With the creation of the World Wide Web,

thanks to Tim Berners-Lee,

I would soon be able to find out anything I could ever wish to know and a whole new world of possibilities would open up to me, so many others, and especially the visually impaired.

I am thankful for the violin lesson I had, even for the rain that soaked me and made my shoes all squeaky as I stepped inside the music school. I am trying to get past feelings of silliness when my teacher shows me another technique she learned as a child. I am improving, slowly but surely.

I am thankful for the kindness and compassion shown to me by a nurse practitioner. She took the time to speak to me, not making any attempt to rush me, and I felt like she was really listening to what I had to say about my own years of illness and pain. I did my best to explain my many medical issues and how I’ve dealt with them. I tried to explain how far I’ve come, in making an effort in spite of the pain and the stress, to live my life. Not all medical professionals are nearly as understanding or empathetic. I don’t take such an attitude for granted when I come across it. I am lucky to have the medical clinic to reach out to in my town. It wasn’t so easy getting there.

I am thankful the Toronto Blue Jays are doing so well and that they won the game my brothers and my father were at. Here’s hoping for more of the same, as we head into autumn and a possible second year-in-a-row of playoff potential for our only Canadian baseball team in Toronto.

I am thankful my nephew is so big into the planets right now, just like I’ve been since childhood.

We enjoyed singing along to his favourite planet tune, even though I told him:

“In my day we had nine planets.”

Why is Pluto no longer a planet?

Pluto will always be a planet to me.

🙂

I leave off this post with what I’m calling “Circulation” even if those I’ve asked all guessed I was trying to draw the planets, but I originally began with only the images of coloured circles. I don’t mind. I love the planets.

Things change. Nothing stays the same. I am thankful that I have learned to recognize my thankfulness.

Diagnosis and Treatment

Last week my parents answered a question about what it’s like having loved ones with disabilities in their lives and what that word means to them,

Here.

This week I will rejoin the discussion once more.

***

Q: What have your experiences been with medical treatment and/or therapy been like? Do you have positive, negative, or mixed feelings about your experiences?

A: I was diagnosed months after I was born and my vision remained stable for many years. I had the occasional eye check-up, but really I avoided the need for more treatments until my remaining vision began to suddenly and mysteriously slip away, when I was in the seventh grade.

I then found out, rather quickly and shockingly, what it was like to have lights constantly in my face. I would have been bothered by all the stinging drops and bright lights, if it weren’t for the fact that I was having terrible pain behind my eyes and I knew, even at age twelve, I was lucky to have some of the brightest minds in ophthalmology overseeing my case.

By this point I had wonderfully experienced parents who hadn’t been dragging me all over the place for miracle cures to my blindness. I didn’t see or experience a lot of negligence. I received excellent care.

As for my kidney failure I know how unexpected that all was and yet my parents still felt horribly that they didn’t do something sooner. How could they have known? They were raising their two blind children, but the rest kind of snuck up on us all.

***

It took us probably too long to diagnose your kidney disease because we thought it was because of stress and your blindness. Your previous diagnosis hampered finding your kidney failure.

When you feel something is different or not right, you search for the reason. Sometimes it can be a physical problem that can be fixed and it’s done. Other times you get a diagnosis that will affect you for the rest of your life. A diagnosis can be great relief because it explains all of your symptoms and you can focus on dealing with them and getting on with the rest of your life. Other times it can be overwhelming because it predicts possibly even more and complicated problems down the road.

***

Since I lost all that vision as a teenager I have kept the retinal specialist who treated me then. HE is the best at what he does, but I fear a future of undiagnosed and unpredictable vision loss. Things can only be handled with the right treatments and proper diagnosis up to a point.

***

Before I end today’s post I wanted to include something I found earlier, a post on a blog by another visually impaired blogger. It is a post about the topic of disabilities in the media and I know that is a big part of what Rose has been doing from the very start.

So please check out:

Adventures in Low Vision,

and

The Redefining Disability Awareness Challenge.

for more information and next Monday’s question:

Do you think that it’s more important to emphasize medical treatment, life skills, community integration, or a combination of these things?

I think I’ve kind of messed up the numbering of the Awareness Challenge questions from how Rose has them listed, only because I was doing a few in two parts.

🙂

I will try to get back on track or perhaps the numbering system went out the window long ago.

Such is life.

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.