Redefining Disability, One Year Later: Glad To Be Here, Glad To Be Anywhere

Last week with

The Reality of My Own Perception, Or Something Like It

I can’t honestly say I actually answered the question, but I’ve been told that I made a strange kind of sense anyway.

I will try to give more of a straightforward answer to this week’s question.

But first, you can follow more about this challenge

Here.

***

Q: How has medical treatment and technology changed in your lifetime?

A: Blindness is not life threatening. Whether I was born in 2015, 1985, or 1905 – my life would be much different, without a lot of the modern technology I take for granted, but I would have survived.

I have seen an amazing eruption of invention for the technologies I depend on so very much, all within my lifetime of the past thirty-one years.

There is no cure for my sort of blindness. I try to stay away from fad ideas and don’t let myself hope for sight in my lifetime, but then I visit my eye doctor and he assumes I am up on the latest in gene therapies.

I am not.

He said the testing of gene therapy is coming along, which gives me hope for the future.

I didn’t have parents who rushed me all over the world, since discovering my blindness in the eighties, searching for desperate cures. I have lived my life, for the first several years, not really thinking of blindness in any medical terms at all. It was simply a part of me and my brother’s lives, a part of our family’s uniqueness.

I am glad for prednisone. It saved me from going completely blind back in the late nineties, I am sure of it.

In the eighties, technology like what I have now, it was in its infancy. Apple was nowhere near what it is today, for so many visually impaired and blind people everywhere.

The IBM computer we had in our family, in the early nineties, was equipped with the large print I required at that time. My brother could not see even that. His love for technology was, at that time, limited to tape recorders and stereos.

Now he is all about his technology and he has a knack for it. I, on the other hand, struggle with it, but would be nowhere without it.

We did okay, as children, without all the gadgets we now have. We had to lug around a brailler, so heavy it could break a toe or even a foot.

Now, the only thing that could break, if dropped, might be a cell phone.

I suppose there are advancements in research for blindness, but I don’t keep that close of an eye on that, to be honest. The eye, as a whole, has never really interested me. I couldn’t name all its parts, just because I happen to be blind.

I was born in a time before Internet and now I depend on it for so much, it’s scary to me sometimes, to think about ever going back, but I don’t see that being a problem.

What are my odds of seeing a cure for blindness in my lifetime?

It’s not as simple as that. The eye and the brain, although I am no expert, are truly complex systems. There are no simple answers.

I know medicine and technology are closely connected and related. We can’t really have the first without the second, and going forward the two will merge more and more.

As for more seriously life threatening matters, I am lucky there too.

Organ transplant was in its earliest of stages as well, when I was born. I waited until 1996-97 to need dialysis and a kidney transplant. I received both. If I had been needing it, just a few decades earlier, I probably wouldn’t be here now.

That thought first really hit me when we stood in line, for breakfast, at the resort in Florida for Wish Kids. It was our family trip to Disney. I was feeling uncomfortable. I looked all around at the children with deadly cancers and brain tumours. I did not think I should be included there. Then I knew the reality that I was lucky to be there or anywhere at all.

I am haunted by the stories my grandma used to tell me about her baby brother, the great-uncle I never got to meet.

She was twelve when he was born. She was sixteen when he died.

Her and her two older siblings must have loved having a new baby brother, but any joy there would have been did not last long.

I don’t know what the reality was. He was diagnosed with diabetes. I know insulin had been invented years before, but he did not get it.

Was it still so experimental? Was it not widely used? What chance would he have had to live if he had gotten some?

This was a poor, rural farm family. No easy access. His parents didn’t drag him around the world in search of some fad cure. He died at home, surrounded by his loved ones.

My grandma told me about her memories of her little brother, resting out in their front room, on the sofa as he grew sicker and sicker. His small body was building up with toxins. The sugars in his blood were taking their toll.

She’d been dating my grandfather for only a short time when her brother died. She cried on his shoulder, as I am sure the grief must have been terrible.

I don’t know what it must have been like for my great-grandfather and great-grandmother, to lose their baby.

I know what it’s like to feel nauseated and weak. I know how it feels to have horrible abdominal cramps racking you. I believe these symptoms of kidney failure are similar to what it must have been like, what it would be like to die a slow death from diabetes. I sometimes felt that I was doing that. I feel for that little boy, all those years ago, who must have suffered in his last days, on that couch. I can’t even imagine and yet I can, a little too much.

Blindness or no blindness, I wouldn’t have survived if I had been born much earlier than 1984 and I can’t forget that.

Both medicine and technology, whether I like it or not, play an important role in my life and always have.

The medications have improved for transplant. The future for kidney failure, I hope, is looking bright. I would love to get my sight, but I would love even more to never have to go back on dialysis or need another transplant in my life.

At least, this time around, I will have technology to keep me company.

***

I usually do these things on Mondays, but today is the first day of September and I started

The Redefining Disability Awareness Challenge

one year ago today,

Awareness

being my first post. I should complete the entire series of questions by the end of the year.

Next week:

Have recent advancements in medicine or technology had any affect on the way you manage your disability?

The Reality of My Own Perception, Or Something Like It

Last week feels like so long ago now. I completed several things, a book review I’d been working on since July.

A week ago, for

Redefining Disability,

http://rosebfischer.com/2014/07/15/the-redefining-disability-awareness-challenge/

I had to go on a search to find my own:

Patience With Public Perception

This time, when it comes to disability, I write about my own perceptions.

But perceptions are reality to each of us, individually. Of course, all of this is my own perception.

Have you been following me?

🙂

Yep. Confusing circle of endless perceptions, isn’t it?

How many times can I use the word “perception”? Nope. That is not the question for today.

***

Q: How has your perception of disability changed in your lifetime?

A: I’m an over thinker. Yep, I am. It’s what I do.

The one thing about my particular disability, compared to some others possibly, is that I am unable to focus on my visual surroundings and the sighted world.

This has me stuck with my own mind, as what’s going on visually around me, on a daily basis, is less of a helpful distraction.

Now, that’s not to say I’m not perfectly willing to concede that this can get me into trouble sometimes. I need to make sure I am interacting with others, using my other sences enough, so that I can get out of the endless loop of thoughts and perception inside my brain.

IT’S A TRAP!

🙂

My perceptions, as a child, were obviously much different than those I carry as an adult. Having disability from birth makes a transition, over the years and the stages of my life, hard to follow sometimes, difficult to pin down.

I try to get back there, as I miss that childlike view of the world, as I see it in the little people in my life now.

I was thinking about it as I spent a few solo hours with my now three-year-old nephew last week, since I last spoke to public perception of disability for RDAC.

He still does not know. I can say that fairly safely. He does not yet understand what disability or blindness means. It isn’t really a factor so far, in his sheltered little world.

I like this time spent with only him. It brings me a sense of peace and reflection, free from the sometimes exhausting loop I refer to above.

He holds something, a toy out toward me, and I don’t react. Maybe, for a moment or two, he wonders what that might mean.

I lived it. I’m still living it.

I want to be that child that lives in a child’s world. I don’t want disability to matter. I don’t want to have to constantly perceive what disability means. I envy him.

It’s a nice thought, to be able to get on with the business of living, but I have this filter in my mind and I can’t stop the loop from circling round.

And round, and round, and round it goes.

I no longer have the luxury of a three-year-old’s perception. I am stuck with my thirty-one-year-old’s perceptions. I want to be three again.

My perception and my reality are stuck up there, lost in the loop. If they would ever slow down enough, maybe I could make them known.

Canada must tackle disability rights reform

I must perceive what my country’s election might mean for me. I want to retreat to my loop.

I must leave my own perceptions and study what the public ones are. Again, I want to return to the loop.

I am an adult, but with all the added and the extra worries about where I fit, or don’t fit, in that adult world. My perceptions are my own, which matter of course, but I must find a way to meld that with the outside world, if I ever want to get out of my own head and find a way to join the living.

I perceive disability as my own personal reality, but at the same time I see it and how it really must be for so many other people with it.

It changes, like everything else in life, as the years and my experiences stack up.

Change is inevitable. Perception is reality.

Hmmm. Just what other cliches can I add to that?

Okay, so perhaps this question has gone completely off the rails this week. Just maybe.

I just want to get back to the lessons a three-year-old can teach.

I want to hold up my ideas and my perceptions to the light, not keep them always hidden on that wacky loop-dee-loop in my head, even if they are met with blank stares or questioning eyes.

I want to live it and stop perceiving and pondering. I want to answer this question, to participate in this blogging challenge, and to help other people understand, but yet I don’t know if I can do all that. Don’t know if it’s possible. I am perceiving, even as I write this. I don’t know where I’m going with it, like life. I am letting my weekend stream of consciousness writing spill over into my week I suppose because I can’t possibly hope to make any sense here today, as I write on a Monday that is actually a Wednesday.

***

I can’t hope to make much sense here, but I try anyway. I answered these questions about perception, relating to disability, because I don’t like leaving any unanswered. I did my best, but to fully follow my answer, you’d need to be inside my head where my own perceptions reside. I am not sure if perception is all too easily explained with words.

Do you agree with me at all? Were you able to follow what I said, my answer to this week’s question whatsoever?

If not, I will understand.

Redefining Disability on Facebook

Follow the page though because the thoughts, views, and opinions are expressed a lot better over there. Promise.

🙂

Next week’s question is:

How has medical treatment and technology changed in your lifetime?

Only Time

Goodbye August.

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.