Uneasy Me, #FTSF

“It’s not easy to be me.”

Superman’s Dead (It’s Not Easy) – Five For Fighting

Superman was always one of the last of the superhero stories I would choose. I was always more of a Batman girl. I don’t know how many Superman films I watched there for a while, but none of them stuck with me as being particularly interesting. I didn’t understand the whole backstory or even the definition or importance of kryptonite.

That’s why, when I read this week’s FTSF prompt, I froze in my tracks, unsure if I would write anything at all, have anything to link up with.

I looked up the meaning, refreshed my memory, but still drew a blank. Kryptonite meaning, basically, weakness and still I was coming up with nothing.

Come on, I nudged myself over the last few days. You’ve got to have a weakness. What is it? What would be the main one?

I am working on writing my memoir. It seemed like a perfect moment in time to start again, as I think back on the twenty years, exactly, that I was diagnosed with kidney disease as a frightened twelve-year-old.

Since that point I have been called brave and inspirational many many times. How did I do it? How was it that I managed to survive feeling so sick, dialysis, and surgery to have a transplanted kidney from my father?

I am not as strong as all those well-meaning family, friends, medical professionals, and acquaintances assumed. I don’t want what happened twenty years ago, what was only really a few years out of my whole life, to define me forever. I try to get past it, really, but I keep going back to it and writing my story down is a big part of that.

Sometimes I wonder if that’s even a good idea. Maybe I should just move on and look ahead. That’s what I am doing, but then I turn my head round and admit to myself that what happened during those rough months, all those years ago now, that stuff left its mark on me and I can’t honestly say I don’t look back in reflection.

My kryptonite is the past. It’s the affect a physical illness had on my body, my mind, the girl I was trying to grow into.

It influences my body image even now, as a grown woman.

When I was treated I was clearly under-weight and malnourished. I was lacking proper vitamins and minerals, things the kidneys are supposed to take care of.

I stayed stable on dialysis and I had the transplant. This got me back to a healthy state, but I went from being barely eighty pounds, maybe less, at age twelve. My puberty was hugely disrupted. I was not growing.

Once I had a working kidney, one being all you technically require, I began to gain weight. I gained weight as a side effect of more than one of the medications I had to go on.

I remember standing on our bathroom scale, realizing I was ninety-two pounds, and starting to panic. I wasn’t relieved I was gaining. I was horrified.

I was weighed every time I went on and off the dialysis machines. This was necessary, to monitor my fluid loss and gain, but it played havoc with my head. I was shown to focus on weight, at a time I shouldn’t have had to, when only months before I was pushed to put on the pounds.

Now, the weight was coming on abnormally quickly and I was visited by dieticians who went over the list of foods to stay away from if I didn’t want to gain even more weight.

So now I like my chocolate but I also like my fruit.

At Easter I love chocolate eggs, but come summer I go nuts eating strawberries, peas straight from the pod, peaches, and apples for weeks and weeks on end. They are really all I want to eat.

All in moderation. Diets don’t work. Or avoid some foods entirely?

I can list all the excuses in the book as to why exercise and weight loss hasn’t been easy for me, but I know I am not alone. I must keep plugging away at it, remaining mindful of it. I don’t want to make excuses, to use chronic pain or my blindness as reasons why I am now gradually gaining weight over time. I only get my kidney checked twice a year, but they still take my weight at the start of these appointments, and I am forced to look back and try to recall what the scale read six months before, to keep track, somewhat, of where I’m at. So although I don’t keep checking my weight on my bathroom scale every morning, I’m made to be accountable, every time November/April rolls around.

Yes, the meds have decreased, things are more moderate now, but the damage is done – floodgates have been wide open for twenty years. I deal with something so many people deal with, I know. Emotions also play a part and my psychological state becomes a factor.

Can I keep things under control? Can I not let the events of my past rule my present or influence the future?

My kryptonite are the stretch marks I’ve had (not from a pregnancy, like most women my age), but since I was on high doses of prednisone, when I was fourteen years old. I can feel the clear visible evidence of how it all began and I feel weak because I can’t keep things in balance as much of the time as I’d like, but that’s why I write about it all. I hope that part doesn’t make me weak. I don’t feel all that brave or inspirational and I don’t want the weaknesses I live with to bring me down. They do serve as reminders of the scars of my past and the toughness, as they’ve driven these bits of my past in deep.

Now I’m off to go eat a mango and some chocolate.

🙂

The brains behind this week’s FTSF is

Lisa Crisp Witherspoon

of The Golden Spoons.

Kryptonite – 3 Doors Down

And, as always, Kristi of

Finding Ninee.

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?