Frozen In Time, #TGIF #FTSF

The sixth grade gym teacher said: “RUN!” And so his students ran. They ran and ran and ran laps around the school yard, a simple little country school.

The class ran and ran, including one tired classmate, being practically dragged along behind her sighted guide, finally unable to run another lap, not even one more step. She fell to the ground, feeling and smelling the cool tickle and scent of the grass against her cheek, but feeling close to death, hardly caring if she ever got up again.

She was. Close, horrifyingly close, but nobody knew it.

A long, long time ago and very far away, there lived a frightened little girl. She felt like she couldn’t hack it, any of it.

Homework was a nightmare. Math especially filled her with dread at the prospect.

The doctor dismissed her symptoms.

“Her stomach pains are just the start of menstruation,” the GP stated emphatically.

He said it, even as the mother kept bringing her daughter back, time after time. Finally, her shaky hand and general appearance of being unwell would seem to warrant blood tests and a referral. Thank God for that.

Twenty years ago seems so far away to me now. If it had been too far back or longer than long, things wouldn’t have turned out like they did. Medicine has come a long, long way.

Dialysis. Transplantation. Twenty years ago all this was possible. Just twenty years before that and the twenty before that, not so much.

Sometimes it feels like another girl lived all that, another life, and one that wasn’t me. Was I really that frightened little girl?

This week’s triumphant return of mine to Finish the Sentence Friday, brought to you by:

Finding Ninee

&

Life is Like a Hand Grenade

Life is a little like that. Sometimes, things blow up for us, all around us, and we’re left to pick up the pieces.

I’m still picking up those pieces, shards of the life I had then and a life that could have been.

It is what it now is, because of that long, long time and far far away.

Surprise Surprise, #SoCS

SoCS

I am back, after another break, and ready to talk about expectations and the unexpected:

http://lindaghill.com/2015/10/02/the-friday-reminder-and-prompt-for-socs-oct-315/

Bet you don’t know what to expect.

🙂

Last weekend I was not able to participate in Stream of Consciousness Saturday because I was in Toronto. I’d gone there, expecting to do a handful of expected things, but I ended up doing the unexpected.

I went to a Native Pow Wow…unexpected.

I had a delicious Mexican dinner with a friend…unexpected.

I got into a fight with another friend, after I was unnecessarily and unusually rude…definitely unexpected.

I went to a giant book fair by the waterfront. This was planned, but what was really unexpected was my meeting Canadian publishing royalty. This is the type of unexpected event I love. That’s what makes life so great.

I am now left with expectations. I gave my book to a friend, others have said they are buying a copy, and I am now waiting to hear reviews. Did they like my story? Did they not? I don’t know what to expect, but the whole thing makes me question what I think I’m doing writing anyway. I guess I did not think the whole thing through, that people might actually end up reading my writing.

I went to a baby shower today, for a friend. I am not quite sure if she was expecting it. She answered the door when I arrived and I feared I’d come too late, too early, blown the surprise.

I think I am getting a cold. I feel the early signs and symptoms coming over me. I had been expecting this, frankly. It’s going around lately. My friend in Toronto, where I stayed last weekend, she was sick. Lots of people are. What do you expect?

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.