What A Life! #FTSF #SoCS

“What a life!” my oma would always say with a sigh.

She was right. I say it now, that line, in exasperation, and in my memory of her, to honour her unique brand of wisdom and her straightforward ability to speak the truth.

I just had a checkup with a nurse practitioner. She was very thorough and we talked for what felt like a very long time. No rush to see me briefly and get me out the door. No neglect of what I needed. I told her my entire history, as fast as I possibly could, but she did not want me to hurry through the details. She was wonderful.

It takes me a little while to get through my somewhat complex medical history. I had her curious and eager to look up my eye condition

and the rare syndrome I share with my brother.

This took me back, which it can most often do, and required that I look back over the years.

Mostly I spoke of how sick I was before my then gp finally diagnosed my end-stage kidney failure at age twelve. That sure took me back, into the bad and the worse in terms of memories and recollections. I told her how hard it becomes to remember to include all necessary details, with every retelling I give a doctor or nurse. She was very understanding.

I see how far I’ve come when I look back, using my medical story as the example. I reflect on the girl I was and the struggles in the following years. I want to think I am doing alright considering. I think of my oma and I leave my medical checkup and I sigh.

When it comes to the years, I do so much looking back that it is sometimes a heavy weight on my shoulders.

I like the romantic notion of the days of yore. I read such fairy tales, but life is never like those stories in literature in reality. People reminisce about how it used to be, but perhaps, just perhaps they are remembering a time that never actually existed.

That may come across, to you, if you’re only just hearing me for the first time, as a highly pessimistic slant to life. Perhaps. Your take on, say the last twenty years of your own life, it could very well be all rosy coloured and tinted through different glasses. I haven’t worn glasses since 1996 I’m afraid.

No self pity here, but my life isn’t now or never has been a fairy tale anyway. Just the sort of telling it like it is/was, just like my oma used to like to do. That’s about as stream of consciousness as I can get today.

There is thankfulness to be had here, (which will for sure include that wonderful nurse), of course, but that is still to come in my next post.

🙂

I’m doing a double linkup this weekend, starting with

Finding Ninee’s Finish The Sentence Friday,

followed by

Linda G Hill’s Stream of Consciousness Saturday.

The Horse and the Bird

Last week I answered a question on the subject of:

National Disability Employment Awareness Month.

This time I share some pivotal moments and events in my journey.

***

Q: What are some significant moments/events in your life that connect to disability?

A: When I would sit down at my school desk the first thing I would do was put on my glasses and the world would come into a sharp focused clarity. I was ready for the day to start. I was ready to learn with my peers.

I loved art and I loved to draw. We were learning shading in our seventh grade art class. I used my dark, thick pencil, like I used to write my spelling tests and my French assignments, and I started to draw a picture of a horse. I needed this darker, thicker pencil, but I was then abel to complete the art assignment like all the other kids. I had been born blind and did not remember what it was like to be anything other than what I was. I had come this far and I had done okay.

On my last day in art class before that all changed I had the large piece of white paper on my desk in front of me and my pencil ready. I had been so proud of my horse and my teacher had been pleased. Now he told me to try drawing a picture of a bird. It was the end of class and I had barely started, only the first outline, of the bird’s head, when the bell rang and I put my barely begun picture away until next class.

A few days later I was admitted into the hospital, after a bad night of the worst pain I had ever experienced, a hard pain that felt like it came from somewhere deep behind my left eye. Now it was necessary to admit me to find out the cause. I would stay in hospital for a week, receiving continuous IV’s and diagnostic tests, trying to stop the mysterious disease that was taking over my already limited eyesight.

By the end of the year I had my left eye removed and an artificial eye made. The pain was gone and the highly potent medicine had been the only thing to stop me losing all the precious vision I still had.

I see this as a turning point in my life. No longer could I place a pair of glasses on my face and find the kind of clarity and focus that I once knew. I had been blind all my life, but this was the first time I truly understood what that meant.

From then on I learned to live without the colour and clarity and bright sharp focus that even I had taken for granted. I miss those things every single day and there was no hiding in the world of the sighted like I had been able to pull off, even a little bit before, but I will never forget that shaded horse and those first few lines that would have been a bird.

***

Next week, for the:

Redefining Disability Awareness Challenge,

I will answer this question:

Are your activities of daily living effected by disability? If you’re comfortable, share a little of your daily routine.