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Navigating My Blindness with a Guest Post #NavigatingBlindness

I think this blog is important for finding common ground and others who’ve been there. When the blog’s owner invited me to write a
guest post
about blindness in my own life and the lives of my family, I couldn’t pass it up.

Thanks, NB, for sharing your navigational space and making a place for other stories of the navigation life requires.

Be sure to check out this blog from a mighty mom who works diligently on advocacy for the benefit of her son and so many others.

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TToT: The Luxury of My Breathing – Hammer and Dance #10Thankful

And the people stayed home. And read books, and listened, and rested, and exercised, and made art, and played games, and learned new ways of being, and were still.

And listened more deeply. Some meditated, some prayed, some danced. Some met their shadows. And the people began to think differently.

“And the people healed. And, in the absence of people living in ignorant, dangerous, mindless, and heartless ways, the earth began to heal.

“And when the danger passed, and the people joined together again, they grieved their losses, and made new choices, and dreamed new images, and created new wats to live and heal the earth fully, as they had been healed.”
– Kitty O’Meara

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Photo caption: massive flock of swans on a pond at the side of the road. Reminds us of how the world of nature and our environment might have been calling for a shut down of our regularly scheduled programming for a while now and to slow down and learn to value what truly matters, not what certain fake leaders think life’s all about.

And nature also takes a breath, as my favourite Canadian song writer (Jann Arden) says: “good things come from bad things.”

I am full of gratitude for so many things, even though this pandemic rages on across the world, moving in waves, inclines and declines, and I wait at home for news…for something.

Ten Things of Thankful #10Thankful

It all starts and stops, begins and ends with breathing.

I’m thankful for every breath I take that’s unimpeded by the virus in question and any other.

I’ve never experienced pneumonia before. I’ve been on ventilators before, during surgeries, but any remaining memories of that sort of thing are super vague.

I’m thankful my family are all safe right now.

Speaking of breathing, my sister has asthma and I’ll never get over the shock when I walked into my brother’s hospital room, after an emergency medical condition had him requiring help to breathe and we’d not had any warning.

I’m thankful for medical advancements in the last one hundred years.

I’ve read and studied a lot about the Spanish flu of 1918 and I know this is different, but the biggest we’ve seen since then.

I’m thankful my two essential worker parents are okay.

My mom looks after people in a group home and my dad drives a wheelchair cab.

People with disabilities already have greater difficulties during these large events because they can not drive and depend on others to do that and more.

Lots about this world isn’t accessible and all the work-at-home modifications being made to keep people working and our economy from total collapse are things those with disabilities ask for normally and are often denied.

Not so much the time to harp on that now, but it’s a valid point.

I’m thankful for the technology I do have in 2020 so I don’t feel so alone, even while practicing social distancing in my home where I live by myself.

I have family and friends nearby and am rather used to spending large amounts of time home.

I’m thankful for all the work being put into fighting this coronavirus thing here in Canada and around the world, all the brilliant minds working and the front line people seeing this covid-19 up close, but I feel intense appreciation I am in this country and not in the US, but I worry for all my friends there during such days as these.

I’m thankful for the message Prime Minister Trudeau sent out to the children of this country.

Trudeau gives Canadian kids ‘special thanks’ for helping fight coronavirus – CBC News

I envy my three-year-old niece, but I wonder if she’ll feel any of these issues going on around her. My older niece and nephews can’t go back to school and I know that will be an issue. I’m okay because I know their parents are there for them, there to explain things when they ask questions.

I can’t imagine running a country during a global pandemic, especially after Sophie Trudeau tested positive for the virus. He isn’t perfect, but better than many alternatives worldwide and I feel safer here than many places I could be right now.

Justin Trudeau: Working at home just like the rest of us – Politico

I’m thankful for a body that knows how to heal itself, at least somewhat.

I went for a walk last week and twisted my ankle and scraped up my knee.

I’m thankful for strange pain pathways that don’t feel how bad my knee looks/feels. I was able to put weight on my left foot and right leg and finish the walk.

https://www.youtube.com/watch?v=1jO2wSpAoxA&feature=youtu.be

I’m thankful for the beautiful words of children.

I asked my cousin if I could share the following thoughts from her kids. Good place to end the TToT for this week (copied, with permission, from Facebook):

We’re all poets. And have something profound to share. Here’s the sentiments of our sweet Anders and Nevie.

Nev😇
I am happy
I wonder how many animals there are in the world
I hear the radio
I see the lake
I want a pet hamster
I am silly

I pretend I’m an animal
I feel proud
I touch animals
I worry about wildlife
I cry sometimes
I am kind

I understand the way of life
I say I love animals
I dream happiness
I try hard
I hope this virus goes away
I am calm

Anders🥰

I am strong
I wonder about the world
I hear nature calling for me
I see love
I want to have a nice life
I am proud of who I am

I pretend that I can fly
I feel happy
I touch nature
I worry about other people
I cry sometimes
I am filled with love

I understand nature
I say freedom
I dream of the world being saved

I try to be my best
I hope I can listen to other people’s feeling and help them if they’re sad
I am the best, best version of myself

Write them for yourself and your loved ones to stay connected to Self and one another. Stay true folks❤️❤️

I AM
I WONDER
I HEAR
I SEE
I WANT
I AM

I PRETEND
I FEEL
I TOUCH
I WORRY
I CRY
I AM

I UNDERSTAND
I SAY
I DREAM

I TRY
I HOPE
I AM

Try these prompts out for yourself in the comments, as comments, if you want and take care of yourselves.

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TToT: 2020 and Feeling Good As Hell #JusJoJan #10Thankful

Once again, I have been absent from this
Ten Things of Thankful #10Thankful
exercise in gratitude and I did mean to join in more, but life got in the way.

I am thankful for
Kristi
and her taking on the TToT and for making a lovely effort to ensure accessibility is as common as possible, even with all the things that are out of her control.

I will go back a few months to start things out – back to 2019.

I am thankful I got to attend an old friend’s wedding back in November.

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It was wonderful having a celebration with good friends and family too. The event wasn’t too big and I danced as much as possible.

I am thankful for a fun few days with friends (both old and new) at Social Media Week Toronto, only a few days after the wedding.

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Caption: Kim, me, Amy, and Victoria

It was a nice getaway to Toronto and it was cold, mid November, but I was mostly thankful for the slight warm up but still cold enough, on my last evening in the city, with the most delicate snowflakes falling as we walked to find some dinner before I had to catch my train home.

I am thankful for the chance to be a guest on a podcast about culture called
Culture-Hacking – “Seeing the World Differently”.

I am thankful for a fun-filled Christmas season with family.

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Caption: I’m with my nieces, watching The Simpsons on the tablet, with the tree in behind us. (Hmm, did I end up posting this photo more than once?)

I am thankful for a speaking gig I had lined up for January.

PROBUS Canada

It was good to get to speak to a room of women from the older generations, to share a bit about my blindness experience, including all the travel I’ve done and some of the obstacles I face, not to mention informing them of the existence of the
Canadian Federation of the Blind
here in Canada in 2020.

That website is where you can go to read the latest issue of The Blind Canadian, November 2019 where I am newly an assistant-editor.

I am thankful I had a meeting with the woman/writer I’m planning to walk the Thames River path with this coming September and with my friend and travel agent who is helping us plan the month long adventure ahead.

I am thankful for this new audio podcast platform.

anchor.fm

We may use it to record and share daily updates as we go and I have started a profile there and have recorded my first two episodes. I will probably make these, as an audio version of my written blog, capturing the months ahead and all the planning and preparing I’ll be doing. It’s a cool site/app I can even add music to my recorded voice and I can do it without having to depend on my audio expert brother all the time. I think this one, it will be nice to be able to do it myself.

And I am thankful, last but certainly not least, for a mostly positive result on a blood level that had jumped in recent weeks for unknown reasons.

I have lived by that number for more than 20 years, creatinine to measure my transplanted kidney’s excellent function. I don’t remember it being more than 70-80 in years and suddenly I received a call that it had jumped up to 110.

On re-test, it did go back down, not down as far as I’d necessarily like it to, but 100 – and I will take that, for now.

I tend to lean into my more negative side with these sorts of things, but the doctor wouldn’t commit to the idea that my kidney is slowly declining. He said, at this stage, it could be that, but maybe 100 is my new baseline level. It happens and there’s no reason, at this time, to think anything further to be the case. I am getting re-tested in April and going back again in June for my once-a-year, usual doctor’s appointment.

But he did seem quite sure I’d be walking in England by September and that nothing renal related would get in the way of that. (Still…one more reason I want to do this walk, to help raise awareness, and to explore the world while I have the chance.)

I am thankful, extra thankful, to that hospital and the transplant outpatient program and the doctors that keep such a good eye on things for me. I am lucky to be living where I am living, as I hear more and more stories of the medical costs in the US that people live with.

To start 2020 somewhere, I was glad to participate in an entire month of blogging with prompts coming from certain participants of the yearly activity, participants such as
Wendy
and the blogger to run the whole thing. Thanks
Linda,
for getting my year started, with writing and blogging and your Just Jot It January #JusJoJan challenge, so I can at least begin somewhere for the year.

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Caption: a Just Jot It January completion badge

I am about to celebrate this blog’s six year anniversary and my thirty-sixth birthday – 2020 and I say “bring it on!”

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Late and Possibly Even Lost My Invitation #JusJoJan

I’m late to the party, the farewell January party.

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I was nearly
finished
the month of prompts but I kept on with preoccupation instead. Hopefully that will soon be over.

I go back for blood testing and to speak with the doctor on Tuesday. I’ve been warned that it could end up being a really long day, but I didn’t want to have to wait another whole week to find out if there’s any more to be concerned about with my earlier results.

I was glad to see January coming to an end, as February (along with being my birthday month) feels a lot more positive, most years anyway.

Still, I am not ready for my father’s kidney to be done working. I don’t want to think of what an end to the function of my first transplanted kidney would really mean as far as the possible needed changes in my life.

The year is just beginning, still fresh, and I’m not ready to look ahead with an optimistic, open mind, not as long as I feel this weight that may or may not be lifted. I do appreciate this January writing/blogging exercise, but now that it’s coming to an end, I am again thinking of turning another year older and how I don’t want to let go of the part of my father I am lucky to get to carry around with me.

Silly, self interested thoughts going on over here, as I look to the start of a new month.

Thanks,
Lauren,
for this second-last prompt of the month.

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Covering My Bases #WeRemember #JusJoJan

Okay, so I am nearing the end of this
Just Jot It January
2020 thing.

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This weekend, instead of writing for #JusJoJan, I was too
busy,
with the planning and the thinking and the dreaming.

Trying not to get too far ahead of myself on life, with recent developments, I zoned out a little here recently.

Thanks,
Saumya,
for this one.

I was making a starting, basic plan for an adventure I’m looking to have later this year. It was distracting, as I try not to get my hopes up too high. I want to make a statement with this one!

I wish to
dazzle
the world with this one.

I long to sparkle, to shine, but not me for my sake. I desire to take a chance, take the leap, assuming upcoming bloodwork doesn’t threaten to ruin everything I’m planning before it even has a chance of going ahead.

I want to be always a surprise and a voice for change. I may surprise in my methods of achieving all this, to some, but the main one I’m looking to surprise is myself…and spectacularly!

Thanks,
Debbie,
for this glittery prompt word.

This date always gets me down, in a way, to more of a melancholic level. I think if it, 2020 being seventy-five years since the freeing of Auschwitz concentration camps.

I know this is the day to celebrate, but it’s such a sombre date, I can’t help feeling a bit blah.

It reminds me of too many things, makes me think too many dark thoughts, though I know there’s a more positive tone to strike here too.

And, so since I am working with what I’ve got, what I’ve got is me. Nobody else can live my life for me, I should learn to count on me more because I’m here now and I’m grateful for that, and then to be gracious to all who agree to join in on the journey, somewhere along that way.

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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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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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Gloria In Handcuffs Signing The Constitution #JusJoJan

People are protesting, challenging their governments, and more.

And here I am.

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I can come here and I can
publish
my feelings and my fears for our world.

I am approaching my six year anniversary with this blog next month and I can speak my mind in Canada and share it with anyone who comes here. I am not protesting for the world to see on screen, like Gloria Steinem or Jane Fonda are doing, both these high profile women and both in their eighties now. Instead, I keep writing it all down and I don’t quit as times grow tough.

I have the freedom to write about climate change or disability rights as civil rights or about misogyny and the men who’ve run this world long enough and brought us to where we are today. I can say the things I’m drawn to say and publish without waiting for some mighty publisher to look my way.

I can’t control what the government does or what other governments around the world do, but I can write and speak my mind and for this I’m grateful.

Thank you,
Ritu,
for this prompt word, a favourite of mine.

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Farewell Glow #JusJoJan

I had my final hair cut from a cousin of mine today. She has been doing my hair for nearly fifteen years and, first world problems I know, but it isn’t only the hair.

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It’s really a
mix
of feelings and emotions because I trusted her, as family I’ve grown up with, to style my hair like I trust my sister to help me choose clothes.

Unable to see my face in the mirror (my hair) or how I look in a certain sweater or pair of jeans means I appreciate any help I can get.

I don’t say this to sound like poor me, the blind woman, because I work hard to fight the problems pity for blind people causes in society.

It’s just nice to have those I totally trust to do their best to help me out in these certain areas because, though I no longer see it all, I still like the things many women like like clothes or my nails done or a new haircut.

My cousin is moving, with her husband and kids, across the country and I am happy for her. I know a lot of people don’t understand why she felt the need to leave everything, her business and family and the only place she’s ever known as home, but I understand doing something that others don’t get. It means doing what you feel you must, something that your heart is telling you, all while other people shrug their shoulders and raise an eyebrow in confusion because they don’t see what you are seeing.

I do wish the best for her and her family on this new part of their journey together, but I will miss having her nearby. She is my main connection to the rest of the family I see, less and less, now that we’re all older.

Her salon smelled lovely, she’d often had relaxing music playing and would offer coffee or tea while I’d wait, and I always enjoyed the feel of the way she would straighten my hair.

All my best to them. I just gotta work at accepting change when it comes because that’s not going to be the last change I’ll have to face. It wasn’t the first and won’t be the last.

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Writing A Wrong, #JusJoJan

A bunch of holes, punched into a piece of paper – what is it?

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As it was once done, braille still can be written with the slate and stylus, a piece of metal or plastic with lines of the six cells that make up braille.

A piece of paper is slipped inside the slate, lined up, so the stylus can
poke
holes in the appropriate spots to make all the individual braille letter combinations.

I know it sounds confusing and complicated to people upon hearing this, but it is how I’ve known to read and write since I was a child.

Handy when writing postcards when traveling, though they are less common than when I was younger.

It makes that simple thump thump thump sound as I press the stylus into the correct spot in the small six dot space, which lets me know I am right where I mean to be. One centimetre off and the letter I meant to write has a wrong dot in it.

Though I no longer use the slate and stylus method, as I prefer the speed of Perkins brailers or, nowadays, my electronic/Bluetooth braille display.

Sure, technology truly is amazing and has made literacy for the blind more efficient, but without the basic yet brilliant invention of braille to begin with, the world would be without the beauty of braille for all these years.

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