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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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It Could Fill An Ocean #BlackDisabledLivesMatter #SoCS

I haven’t done one of these in a while.

I could say I’ve been lazy, but this is a double “z” post and so that won’t cut it.

OnzYDXJ.jpg

I’m genuinely
puzzled
by so many things, too many to list, but I’ll give it a try.

How people disregard the potential seriousness of this coronavirus.

I know we need an economy and we need human contact and touch and socialization and companionship. I know I know – when I hear people I once spent time with, how they think there’s more than this virus to consider. Of course there is, but I also know I’m afraid of getting covid-19 and it destroying my life with my father’s kidney, let alone worse possible outcomes. I am not overly cautious, but I also haven’t gone out much. I try not to let it take over, but it is here to stay, for the foreseeable future. I am scared, when I hear reports of how other organs are damaged, not only the lungs.

When I hear the phrase now: “I can’t breathe,” I think of both George Floyd and all biopic who fear for their Black men and women, not wanting the children to inherit this version of the world, and I also think of people on ventilators and I shiver slightly for a moment in bewilderment.

That racism is still a thing or ever was one.

Of course, that’s a simplistic, childlike way to look at it and I am no longer one, still wishing I could be again now. I know the reasons behind, as awful as they are, and I am doing my best to educate myself even further.

I’ve been away from blogging, on the whole, for a while now and I’m more overtaken by all that’s going on in the world.

I am worried this will be a long summer, longer than last year after I hurt someone badly and even longer than the summer of 2016 when the whole world seemed sure Hillary Clinton was certain to win.

I was confused about how people could be so sure because I wasn’t.

Now here we are again. What happens in the US seems to leave its mark on us in other places. As hard as I’d like to escape from the reality of racism in 2020 and in the prospect of #45 winning a second term, I cannot.

I am genuinely baffled that anyone ever saw him as successful and, thus, giving people hope they could also be rich and powerful? I think that’s what it is.

I sense bullshit easily and he has always given off that air, even before people called him Mr. President.

People are out in the streets here in Canada too, protesting because this matters. I am puzzled by power and the lengths some will go to get it, but I wish I could experience a Black Lives Matter protest. I admit I am afraid, even with being outside and social distancing and masks, I am afraid I could be exposed and be one of those who are worse off after being positive. My kidney won’t work forever, like my technology won’t, but I am still hoping to avoid losing my transplant to this pandemic.

I’m always puzzled about computers and how they work. I don’t get there naturally.

So before this stream of consciousness threatens to run wild, I will end by offering one final observation, less timely than what I’ve been writing so far.

But wait…

I note the differences between the US and Canada like I think of the letter “Z” because, while we say it as “ed,” the US says it like: “e.”

And that’s just the start of our differences, but when it comes to thinking Canada is so much better adjusted than our neighbours, I want to believe it, but I know, wherever you are, there is tribalism and fear of “the other” in our society. I am genuinely bowled over by some things, but I can’t look away and pretend I don’t see.

I am blind and I see less and less, but I am more and more puzzled by the state of things and I feel it all most intensely.

Speaking of technology, I do like to think of zz as a funny sound when my technology, my screen reader says it, zz zz zz zz

It makes me want to go to sleep: zzzzzzzzzzz

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TToT: Happy Seventh Birthday – Transplant/10ThingsofThankful anniversaries #Annedemic #Janndemic #AntiRacism #StrawberryMoon #10Thankful

“Go home and stay home.”

—Justin Trudeau, Prime Minister of Canada

In mid March our PM told us this and I’ve been interested to see how things happened since then. This has been the last few months and we’re just now starting to gradually, very gradually open things back up a bit, and we shall see what happens over the summer ahead.

Long before all of this coronavirus talk, for me, it’s been five years of
Ten Things of Thankful #10Thankful
and I’ve found great value in this exercise in gratitude along with several other bloggers every week, especially now.

Current host says: Friendships were formed, and a community was born.

This is true. Thanks,
Thankful Me,
and thank you to Lizzi and Josie, those who have kept it going ever since, when one person needed to pass the torch and someone stepped right up to take the TToT on to keep it going for us all for all these years.

After I discovered the TToT, I was lead to another and there’s a partnership between the two weekly blog hops, at the moment for this thankful birthday celebration.

Finish the Sentence Friday with Finding Ninee

I’m thankful for this extended blogging community. I’ve done better in life with a place to go to remember gratitude in the tougher times and in the joyful, celebratory or reflective weeks.

From
Annedemic
to Janndemic, Jann Arden is one of my favourite Canadian musicians and she’s been going on daily walks with her little pup and taking her fans along on Facebook live. She is wise and talented and she has a calm voice of reason and comfort during corona, all the way out there in Alberta where she lives.

I call these walks Janndemic jaunts.

I’m thankful for our, let’s just say, more stable and practical leadership and direction during the first few months of the coronavirus.

https://www.youtube.com/watch?v=sjhF1GI9n8A

The longest pause on record, it felt like, but what should he have answered?

As a certain #45 is nearing the end of his first four years, I hope he will be gone but I’m just trying to make it to November so we can see him go. I need to focus on what I’m grateful for because all that’s scaring me can feel massive and distracting.

Black lives matter.

Canada is muddling through the coronavirus like any other nation and we have racism here and discrimination—and discrimination with incidents involving cops and African or Indigenous Canadians. We aren’t as bold and in-your-face as all that goes on in the US, but we are hopefully seeing where we need to shape up and I look for signs of change. This appears to be a global movement, along with all the others, global warming and pandemic and economic etc.

Privilege. Apathy. These are just two ways I’ve benefited or faltered with our society’s white supremacy. I’ve done advocacy work with disability long enough to know I have nowhere near all the answers, I will make mistakes and frequently do, but I won’t stop trying to do better because we’re all interconnected, but must remember we don’t know another’s pain or experience in their own body.

I’m thankful I have people that I look to, learn from, and wish for their success and ability to be seen and heard. I want things different, for my nieces and nephews, for their future but also for the present they are growing up through, for every disabled child being born now, every Black child throughout the world, and every black, disabled person.

I write about these days we’re living through and also to document this year, here on my blog. I know, the perfect storm, but pandemic or no pandemic, these demonstrations are bringing people out, speaking of antiracism so nobody will be able to look away anymore.

I’m thankful for the daily diary I’ve started where I write to my grandma (gone 15 years next month) and share with her about this historic time she didn’t live to see. I have a place where I can go to express my biggest fears and anxieties of this pandemic.

I’m thankful for a few writing wins to focus on while the world is on fire.

From Feeling Stupid to Feeling Included – Folks

I wrote this about my journey to finding a safe space to explore movement, through yoga and then Pilates.

I’ve also got an essay about reading and braille that is likely coming out this summer sometime.

I’m thankful for the old rerun episodes of Young and the Restless, airing while new show taping is taking a pause. This is a different year from the almost fifty years of this particular soap opera they play and usually have a theme for one week’s shows, like greatest romances or villains. I can go from an episode I remember watching, at a younger age in life, or I can see an old enough episode that I was barely born when it first aired. It’s taking me back, distracting me once a day for an hour, and it reminds me of my oma who watched for years. She’s been gone ten years next week and I wonder what she’d make of this virus, after she faced war and moving to Canada and all.

I’m thankful for some of the shifts this virus seems to have ushered in, even though much about this time is hard, along with those brought on by systemic racism and prejudice, though these injustices are unacceptable and I am cheering on the protests and this time where a bunch of the best of 20th century are making an appearance in a bundle of fun: 1918 pandemic, 1930s economic woes, and the unrest of the 1960s in the Civil Rights movements to follow. (Sarcasm here, but it all feels like that.)

I’m thankful for the virtual Crip Camp I’m attending this summer, every Sunday, where presenters speak about internalized ableism and activism and mentorship in the disability community. I know I’m not alone in feeling helpless, but I must move beyond that if I want to get anywhere.

I’m thankful for tonight’s strawberry super moon taking place on my kidney transplant anniversary: twenty-three years and counting.

I’m thankful for my kidney, after a few scares with my creatinine and then my potassium level since the start of the year. Things are stable again, for the moment, and I’m thankful for the dedicated specialists monitoring things, always there, and the continuation with phone clinic visits.

I’m thankful I’ve been able to get through such a stressful time and that I practice the attitude of going with the flow (while lying low), even on my worst days of fear and weariness.

Happy 5th Birthday TToT!

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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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lVM0zp2.jpg

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.

Bh1ue2q.png

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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Culture-Hacking and Seeing the World Differently #Culture-Hacking #Podcast

I came across a woman, near the end of last year, who had a strong message in her own story. I reached out to see if she might consider me as one of the first guests on her show:

Episode 2 – “Seeing the World Differently”

On this episode we talk about gratitude and when to speak up. I firmly believe we must share our stories with one another and be proud of the life we’ve lived.

So thank you
twitter daniella young
for this opportunity.

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Late and Possibly Even Lost My Invitation #JusJoJan

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

FIGIXDa.png

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.

okdEccu.png

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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More Than Less #JusJoJan

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

S16DMN4.png

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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I Am No Rarity #JusJoJan

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

N0VqFzG.png

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.

x18ukFp.png

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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