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That Magic Number #FlashbackFriday #JusJoJan

I have written every day (excluding Wednesday’s and Saturday’s) for
Just Jot It January #JusJoJan
2020 and now I come to it:

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I write to start my year off because I don’t have a clue what else I’m doing really.

I wonder what’s next for me, what sorts of
change
might be in my future, these next eleven or twelve months, but do I really want to know?

They say it’s inevitable anyway. Still, I am scared. Not of life in general. No, I’ve learned to be open to it all.

It’s when I’m going along and I get a call. Was I too cocky?

A sudden rising in my blood levels, the kind the nephrologists test for, the kind I’ve learned to watch too, as well as my family members do.

I’ve been at 70-80 or somewhere there about, for over twenty years now. I’ve been stable, no matter whether or not the rest of my life has felt that way.

Now I fear the kind of changes that could come, if that number were to keep rising, rising up above 100 and counting.

It’s an alteration within my blood that the doctors look at. I sit here, listening to a poet reading her poems to me, writing down words and phrases that strike me especially and I think, as she describes her medical history using words: muscles, veins, blood

She refers to her body being explored by Miss Frizzle and her school bus full of curious children and I think of my creatinine.

I can’t touch it, leaving the blood safe inside me, in my veins, but I don’t wish to explore it further. I want to leave it to a twice-a-year thing, no closer than that.

I don’t write poetry like Alana, but I think in terms of it.

I scare myself, hopefully, for no reason. A recheck and it will all be good again, go back down to the level I brag on.

My weekend is slightly ruined though, as I weight. Nothing I can do. Don’t worry too much, I tell myself, others might say. No point anyway.

I think of that girl I was, once so sick, my brain unable to do math. A zero on the test. It was time for dialysis to remove all that toxic sludge from my body.

I am not that girl now, a woman approaching middle age. I want to go out now and experience it all. So grateful for the fact of dialysis, but I run from any thoughts of being stuck to machines multiple times every week.

I want to walk along the Thames, to go back out west, to tackle my
bucket list
without restraints.

Of course, money is my biggest, but those machines threaten to hold me down.

I feel the mark on my chest where the tube once hung, connecting to tubes that carried my blood to be cleansed. Family stayed by my side, friends sat and we talked. I dreamed of one day visiting Ireland and Prince Edward Island and more with my grandparents, my family, a partner maybe.

Now I want to run from that little girl, into my future, but I know it will all come full circle.

I hear/read about the future of organ donation, of artificial kidneys, but I don’t hold my breath.

I think of lists with my name on them and rising blood levels and I want to sleep.

It’s in the waking that the thoughts come rushing back.

So many changes lately: people in my life leaving, missteps and moves questioned, and now…here I sit and I wonder over that magic number over the weekend.

It will all be okay. It will all be okay. It will, it will.

I don’t tell my brother, one who can best understand the fear that comes creeping back in. He’s on the west coast right now and I don’t want to bother him or disturb the freedom and lack of worries while he’s out there. And so I burden you, blog, with this one, for now.

Breathe Kerry, just breathe.

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Only In My Dreams #JusJoJan

Would I even be any good at it?

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I am not one of those blind people who joke often about being able to
drive,
but I do dream that I am behind the wheel on occasion.

I am aware of my blindness in these dreams and still proud and feeling comfortable. I am not afraid I’ll crash, but I do recall a caution, which I am with a lot of things in my own life.

I do think some people are more natural at driving. My dreams would have me believe that I, if I could drive, would be one of those naturals.

During these occasional dreams, I seem sure of my destination, something I don’t usually feel so certain of in my waking hours.

I only had one dream where I was left alone in a car and then the car started to back out of the driveway and into the road as I panicked but couldn’t seem to be able to get out.

Self driving cars aren’t all that far off, are here already, but I don’t know if or when I will find myself behind that wheel, wide awake not dreaming.

Thanks,
Janet,
for this prompt that has me dreaming of the possibilities of the future.

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The Rocks She Stands On #JusJoJan

She stands and surveys the coastline, stretching out in front of her.

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She looks down and studies the
scraggly
rocks beneath her feet, putting her arms out to steady herself.

As the grey water and dull sky blur in her vision, she wipes a tear from her eye.

This mournful place seems as lonely as she feels, both finding a friend in the other. This place hasn’t seen a human in God knows how long. She chose it for that reason. Nobody would find her here and she was done with stunts where she’d plead for help from anyone who’d listen.

This time was different. She was okay with it all ending here. The fog rolls in on her final act of screaming to nothing but the screeching of the gulls and the splash and spray to follow.

Thanks,
Cheryl,
for this prompt to get me to brush up on my micro fiction.

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More Than Less #JusJoJan

It’s one of the three main keys for the
podcast
I have with my brother: family,
humour,
and creativity

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and we try to bring it into the radio show we now record every Monday morning at eleven, even though Outlook is a show about accessibility, advocacy, and equality.

Life can be hard. A humourless personality is unfortunate. We gotta have something to break up some of the monotony of daily living.

A sense of it is high on a list of qualities for most online dating profiles.

Thanks,
Sadje,
for this prompt, especially on Blue Monday in the month of January.

I like this month for blue and in February I think red.

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Mrs. P Sorted Through It #JusJoJan

It’s when my braille translation program got all messed up and what came out from the braille printer made absolutely no sense.

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It was strange to call her Mrs. P at school suddenly. I’d gone for years thinking of her as my friend’s mother. She’d pick us up, make us dinner, and drop us off. All of a sudden, she’s my educator, teacher’s assistant, and I just don’t call her anything at all.

She was the first to use the word
gobbledygook
and I have been a fan of that word ever since.

High school seems so long ago now, like an entire lifetime ago, but I’ve seen a lot of gobbledygook since the early 2000’s.

It all gets muddled with so many voices, spurting out nonsense and opinions all over the place and my headaches persist.

What I’m saying here now is more of the same. I can gobbledygook it with the best of them though.

When most people run their fingers or move their eyes along a line of braille they get only gobbledygook. When I do it, the world opens up to me beneath my fingertips.

I relied a lot on my friend’s mom/educational assistant to sort through so much nonsensical jargon so I could learn what I needed to learn.

Thank you, Mrs. P and
Jim,
for bringing this word to my/our collective minds.

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Ice Cubes, Cough Candies, and Skulls #JusJoJan

My bracelets are my fidget spinners.

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I don’t know a lot about the names of different stones and minerals and jewels.

I wear my rubber
Bold Blind Beauty
band around my left arm to remind me that I can be bold, blind, and beautiful too.

When I did some public speaking the other day, I wore my wrap around blue beaded bracelet I got from a woman at
Women’s Travel Fest
last year.

I now have two bracelets with bigger assorted beads I wear on my right wrist and I think one of those beads might be
jade,
though don’t quote me on that.

I got one of these in Mexico back in 2017 from
this man!

It has flower beads, beads that feel like giant marbles, one bead shaped like a heart, one that makes me think of a cough candy, and a few small skull beads which is a cultural thing from that country.

My newest beaded bracelet was made by a girl I met out west last year. I wanted to support her artistic entrepreneurship and, I have to say, the bracelet she made me is lovely.

It has a pattern, two beads that feel like a different type of cough candy, and one centre bead shaped like a cube. Or, as I like to say, one of those ice cubes that come out of the ice machine at a hotel.

The sound these beads on these bracelets on my right hand make sounds like the jingling that always accompanied Lady Mary on the Downton Abbey series.

They are my good luck charms, peace and meditation, and memories of my travels.

Thanks,
MB,
for this prompt that posed more of a challenge than some.

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I Am No Rarity #JusJoJan

I took yesterday off, from this
Just Jot It January #JusJoJan
challenge, but there remains a lot to do.

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I had an
experience
yesterday, a speaking invitation to something called
PROBUS.

This was a chance to be a guest speaker for a room of retired professional women. I wasn’t just there to speak about my life as a sideshow of what’s known as inspiration porn, meaning a story of my disability that does nothing to truly educate, challenges preconceived notions and to show them what has been kept too well a hidden secret up until now.

I wanted to talk to the ladies about my life, my blindness sure, but of some of the things I’ve accomplished. I made the theme fear and travel and they were amazed I traveled to Mexico alone, to attend a writing workshop in 2017. Sure, many sighted people are amazed I can dress myself let alone travel by myself.

The point is that there are ways to know what I’m wearing and how I get to my gate to fly somewhere. I don’t do it without practice and, sometimes, without assistance.

I talked about my fears and the fears my parents had when they first learned I was blind. I talked about my loss of sight over the years and how I faced my fear of rejection to start this blog and share more of my writing with the wider world. I talked about how to face the fears and push passed them, while they keep on coming.

I impressed them, all kinds of them coming up to me after to shake my hand and tell me to keep it all up.

I couldn’t hope to change every mind about the capabilities of blind people, but maybe I enlightened some of them so that they will realize that I am not such a rarity, that many blind people live happy and active lives.

There is much work to do, why I’ve become involved with the
Canadian Federation of the Blind
to, in many cases, fight back against society’s fears of blindness and what it’s really like to live with it.

I want to improve opportunities for my own life and for those born blind or who go blind later in life. It isn’t a black hole of hopelessness.

The government could be doing a lot more to help. If they listened more and realized it is a good investment to make into disability communities like that of the blind, that given the right kinds of opportunities and supports and training, we can give back to society like we want, like anyone else might do.

Our challenge is to make blind people, struggling to know their options and worth and opportunities, understand and believe that they can live the life they want.

I have been to a yearly convention for the CFB in Canada for the last two years and to one in the US in 2018. I wish I had more money for travel because it isn’t only a chance to do that, but it’s a chance to gather together and share with one another and boost each other in our lives all the rest of the year. I face my fears by traveling, again and again and again, and to put myself squarely in a situation where I am anxious and uncomfortable, a large crowd or group of people.

The experiences I’ve had since I realized my power to make changes through advocacy with like-minded blind people have been some of the best of my entire life and I’ve met people that inspire me for those times when I do feel like it’s all too much and I’d like to give up all together.

It’s often stressful because there’s more work to do than those of us willing to pitch in with our own unique talents and skills, but it’s a brand new year here and I know I’ll keep busy, whatever happens. Life is rarely ever boring for long.

Thanks,
Dan,
for this prompt that I had a lot to speak on. My life has been a rich tapestry of meaningful and impactful experiences for sure.

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