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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?

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

  1. Photspheresis helped me beat my graft verses host disease. That was likely the key in getting healthy enough for the graft to take to the point it even has. It is still a pretty new technology, and I’m surprised my insurance covered it.

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