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Stung and Still Standing, #Purple #EpilepsyAwarenessDay #SongLyricSunday

“No dress rehearsal. This is our life.”
—The Tragically Hip

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I am fascinated by history and by time passing, as it does with every year of life I get to live.

This week I was initially stumped by the theme for
Song Lyric Sunday
which was about healing.

I’ve done a lot of that, physical scars and emotional ones too. For some reason though, I couldn’t think of a song. Then I watched the newest interpretation of the Anne of Green Gables story and heard their theme song.

https://www.youtube.com/watch?v=QE2joQsWXJg

This song was included on a CD I received, as a get well gift, twenty years ago. This was back when I hardly had more than a few CD’s and barely even a CD player to play them in.

I walked to the nurses station and felt the funny cardboard case in my hand. As a thirteen-year-old girl, I thought the lyrics of this song strange, baffling, yet humorous.

***

First thing we’d climb a tree
and maybe then we’d talk
Or sit silently
and listen to our thoughts
With illusions of someday
casting a golden light
No dress rehearsal,
this is our life

And that’s where the hornet stung me
And I had a feverish dream
With revenge and doubt
Tonight we smoke them out

You are ahead by a century (this is our life)
You are ahead by a century (this is our life)
You are ahead by a century

Stare in the morning shroud
and then the day began
I tilted your cloud,
you tilted my hand
Rain falls in real time
and rain fell through the night
No dress rehearsal,
this is our life

But that’s when the hornet stung me
And I had a serious dream
With revenge and doubt
Tonight we smoke them out

You are ahead by a century (this is our life)
You are ahead by a century (this is our life)
You are ahead by a century
You are ahead by a century (this is our life)
You are ahead by a century (this is our life)
You are ahead by a century

And disappointing you is getting me down

Lyrics

***

This song’s lyrics aren’t specifically about healing, but when I remember the girl I was, upon holding that cardboard case, I remember the hospital in Toronto I was standing in. I had done a lot of healing, multiple surgeries between ages twelve and sixteen, and I had so much ahead of me, not all so easy to heal from.

But I was receiving a fresh start, a kidney from my father, and would I make a good life for myself with what I was being given? I was lucky to be alive, to have the best medical care possible, and I had all my life in front of me.

I still don’t know if I am appreciative enough of what that time of healing and sacrifice from my family, from so many medical professionals, brought – if I have made them all proud enough. It’s enough to show a person, at a young age, that life is precious and these lyrics now carry the greatest of weights to me, if not then.

Today is World Epilepsy Day.

Purple

Twenty years later and I now worry about my brother, with every seizure he has. The brain is a miraculous thing, with all the wear and tear it can go through and how it can heal. At least we both have working kidney transplants, for this moment, because who knows what time will bring.

Multiple surgeries, countless needles, and I’m still afraid of being stung by a hornet.

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Lamb vs Lion, #SoCS

This is supposed to be the time and place to just write, whatever it is that comes to miming, through my fingers on the keys.

Right? Yeah. I’m working through it all.

I focus on one month at a time, trying not to look too far ahead of myself in this year that feels vital somehow. It’s 2017 and it’s only the third month in. I still have a chance to do something great.

January was great. January was Mexico. So far, not much can top that. It’s hard when starting a new year with such an adventure, so long waited for, but I try to keep an open mind about the possibilities I could still discover are on the way.

I feel like I want to do something. As the day of that January
march
was taking place, I was not in the crowds of faces, all carrying signs and there to fight back.

I was in a hotel room, in Detroit Michigan and watching it all unfold on the television. I had other things on my mind, as I felt traveling alone was enough of a sign, symbolic that I would not hide away any longer. I would be seen and I would do something for me.

I, as a woman, I had my immediate goal of making it to Mexico by myself, which I didn’t know would turn out so well, not at the time.

I want to do something, since then, all the more. I will take steps, in this month of newness of a season.

With both Women’s History Month and recently it having been the International Women’s Day, I wonder still what we women should be, what we are expected to be from society.

Are we the gentle, feminine lamb or the strong, fierce lioness?

I fear being lost in those crowds. That day wasn’t only an U.S. thing. It was done all over the world. It’s sometimes like the U.S. is the only place that matters, or that’s how the world sees it coming from the centre of North America, but we all want justice and respect.

So, my inability to see my way through such massive bunches of people means I fight in other ways, I march in other manifestations.

I use technology to my advantage. I look to those who have seen more and are working to bring change.

We don’t have to be one or the other. We can be lambs and lions, as this month suggests, even when that scares some of the less enlightened among us.

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A Review of Sonya Huber’s Pain Woman Takes Your Keys and Other Essays from a Nervous System

Oh so many pain scales. People are always wanting a word so that they can understand. We need more books like this to explain the experience firsthand. This is brave.

BREVITY's Nonfiction Blog

huber_frontby Vivian Wagner

This is a book about pain. Chronic, searing, never-ending pain—a pain that’s shaped Sonya Huber’s life for years. It’s also a book about the language of pain, the discourse of pain, and her gradual movement toward being able to talk and write about her experience with this mysterious thing that dominates her life.

As someone who hasn’t yet experienced chronic pain, I relied on Huber to draw me into her world, to show me what it feels like, to allow me to begin to understand an experience that many of us will, eventually, know first-hand. And she takes on this project masterfully, introducing her readers to pain just as she might introduce a family member. By the end of the book, I’d begun to see my current pain-free state as an aberration, as a temporary fiction, and I was grateful that she’d facilitated my entry into a world…

View original post 722 more words

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TToT: Cherry Blossoms, Bluebonnets, and Clover Leaves # March Madness, #10Thankful

Stella! … Stella!!!

https://www.youtube.com/watch?v=XjHr-6Zl5P8

Okay, well if you aren’t already familiar with the play
A Streetcar Named Desire,
perhaps you won’t get my joke. I’m referring to the big “winter storm” in the eastern United States and here in Ontario and into Quebec and the Maritimes.

First it was the winter storm Stella and now it’s the Spring Equinox and first day of spring.

St. Patrick’s Day. World Happiness Day.

Either you’re drinking massive amounts of green beer or the day passes and you don’t do a single Irish thing, but you can’t help hearing about it. It’s the same with a day we are told to be happy.

World Happiness Day 2017: ticket to joy or time to ditch the smily face?

All these days.

Ten Things of Thankkful

I am thankful for snow in winter.

I like and appreciate it, during its season, but it is cold and I do happily move on from it by March/April.

I am thankful for flowers and birds and baby animals in spring.

Last year, I started off one of my TToT posts with some background about cherry blossoms, but today I am including a few others in this week’s title.

I can’t see them and their colours, but I am often obsessed with flowers, especially cherry blossoms at this time of year. I don’t know why those specifically.

Then I watched the new Anne of Green Gables series on CBC last night and there is a part where a cherry tree is featured.

If you know those books, Anne spots one when she first arrives off the train, before she meets Mathew and Marilla for the first time. She imagines climbing it and sleeping up in it if nobody had come to pick her up that day.

The blossoms are mentioned more throughout this newly updated version, and I took that as a sign of sorts, that spring has sprung.

I am thankful for anything Irish.

Don’t take my word for it. Don’t just drink some green beer. Visit Ireland and see it for yourself.

It was one of the best spur-of-the-moment decisions I’ve ever made. I don’t regret it and neither would you.

That’s why, whenever March 17th rolls around, though I love the music (like what Ed has done in the song above, anything else can’t quite live up to the real thing.

I am thankful to be working on a new piece which should be published in one week.

I am thankful the editor informed me of the stock photo she thought about including with my piece before simply going ahead and using it, without my knowledge.

It was a photo of a girl with her eyes closed. Part of what I do regularly is to educate people on what’s acceptable and what isn’t. I wish, sometimes, I didn’t have to do this. I wish people could understand without me having to explain it.

This may sound like I’m being self righteous about this kind of thing, but even if a girl with her eyes closed may say, right away to readers, “this woman can’t see,” it feels highly stereotypical and won’t help progress with people’s understanding and acceptance of those of us with disabilities.

Touching Life

I am thankful for the feeling of my baby niece’s soft head under my chin as I held her against my chest.

I held her while she slept. She has so much hair and it is so lovely.

I am thankful for her ability to already raise her head by herself.

I held her while her oma warmed up her bottle and I couldn’t believe how strong she already is. She will be one month old this week.

I am thankful for my four-year-old nephew reading his books to me.

Okay, so he didn’t so much read as explain about his favourite dinosaurs, but he did spell out “L i t t l e” on the sign as we were picking up a pizza.

So, he’s on his way. I try to explain to him that I can’t read his library book to him because my eyes don’t work. His response still is “my eyes work” as a way of comparing or reassuring himself or maybe just to inform me. I’m not sure, but, If I’m going to have a bonus thankful this week, it’s that his eyes do, indeed, work.

I am thankful when one of my really bad headaches subsides.

I am thankful for a doctor who understands when I can’t make it to my previously scheduled appointment, do to said awful headache, and their ability there to reschedule so soon.

I am particularly upset when I hear all the talk, south of the border, here in Canada, of U.S. healthcare. I want the kind of care I get, for every person who has lived with awful headaches, needed major surgery, been diagnosed with a chronic or terminal disease or illness, or who lives with a disability to not worry about not being covered or having to pay giant medical bills.

People in Canada complain about long wait times, convince themselves that our neighbours have the better options for medical treatments, and some may have terrible experiences with Canada’s healthcare system. All I know is my own experience and that of my family.

Healthcare shouldn’t be about insurance companies, deductibles, premiums, and whatever else I keep hearing, is all I hear when I hear the debates going on in the U.S. They talk of consumerism and shopping for the best health plans. Healthcare isn’t about shopping, even if so much of our society is all about consumerism. This is, in some cases, about life and death. It’s about feeling unwell or being able to be happy for more than only one day a year.

Ugh! It all gets me so fired up honestly, because I know what it’s like to need my country’s medical system. I have disability and medical conditions I depend on being treated for. I am lucky here. I hate how too much of the world still doesn’t get it.

It was a week where I could care less about the actual March Madness, as I am no basketball fan, but…as for some other madness:

The Tyranny of Now

It’s precisely why I need to count my blessings and why everything on my list today is needed more than ever and deserves the recognition in my own life.

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The Tyranny of Now, #SoCS

Ah, what can I say, really? *throws hands in the air*

Some things feel so futile. Ah, the futility of it all.

Sometimes, I tell you…
mankind –
the whole thing blows my mind.

***

Your Memories on Facebook

Kerry, we care about you and the memories you share here. We thought you’d like to look back on this post from 2 years ago.

(Awww, thanks Facebook. Apparently, I was feeling perplexed.)

March 18th, 2015

Yesterday I visited a Holocaust exhibit, a series of black and white photos of men and women who lived through it.

It was at the Kitchener Museum.

Then I went home and came across the mad rantings of a KKK member on television.

Last night apparently St. Patrick’s Day was celebrated with wild colours of green from the Northern Lights at several spots around the world. Proof that the beautiful things still exist and can outshine all ugliness.

It’s still all so baffling to me.

—Then and now…

***

I resist speaking of it here, trying to hold in my frustration, but this felt like the worst day yet, in some ways, full of ridiculous words and attitudes, and I can’t believe the dismantling of the U.s. happening before our very eyes.

This week we see, is Holland smarter than those who came before them, when deciding possible fate of their country? Is it, indeed possible, for man or woman to learn a lesson in this day and age?

Maybe so. Maybe.

Germany, standing stoic and silent in the presence of such nonsense and self interest.

Destruction. Such a farce. That a fool of a man can gain such power in this world, boggles the mind. And so the whole world gawks, laughs, and cries at what now exists, feels unstoppable.

And all I think the world feels about it too, a growing shame, but I respect so many who are citizens and throwing up their hands, just like me, feeling somewhat secure (for the moment) here I am, in Canada.

When I heard the prompt “man” I immediately thought of one…one man I avoid saying anything about here, whenever possible.

This is not a political or current events blog. It’s just me.

I can’t predict, from day to day, but it’s such a feeling of disgust, and in time this post could be scrutinized too, with reports of phones and other devices being checked upon entry, or possible non entry as the case may now be.

Does crossing over one border in particular even seem like the wise option for the foreseeable future anyway? How much will cross border visits, tourism fault from the tensions that keep increasing?

Places like Canada may suffer for the border share, a part of America, just as much as the U.S.

How it feels that we now have human beings sneaking across from them. The issues this creates, as humanity sometimes feels scarce and then, there are those, some willing to fight for a compassionate solution. And Canada then makes the papers, glowing reviews of our virtues, bestowed by the New York Times.

We are a country and we fumble as we try.

And then…the best and the brightest, hesitating to attempt the land of the free, once full of such promise. Now, will Canada reap the benefits?

Meanwhile, the whole world suffers and seems to spiral into turmoil. Of course, this could just be my personal theatrics. Who can say really.

Man, oh man!

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Salty Sweet, Bittersweet #TGIF #FTSF #pieceOfCake

My father was never the beer drinking father, like most kids had. He was the Coke drinking father who was always available to be designated driver.

“Can me and Brian split a can of Coke?” I would shout from the top of the stairs, down to my parents in the basement. We always had Coke in the house, or practically always, but I still always felt like I must receive permission from my parents to have any. I like to think I had a healthy respect for them, most of the time, asking before taking. We had a good life, but our parents taught us a healthy gratitude for everything we got.

One of us would get the can and the other, they would get the half of the can poured into a glass. It was often the two of us, brother and sister against the world.

When I was 11 I was like any other kid my age, growing up in the mid nineties, and wanting what we call, in Canada, not soda, but pop. I loved sugar, but I also craved salt.

I began to sneak those fast food restaurant salt packets. I would eat the salt off of Pretzels and I even sprinkled salt on my potato chips because they weren’t salty enough.

How many eleven-year-old kids crave salt? It would have been a tough choice, at that age, between a can of sugary pop or a bag of extra salty snacks, but, at a certain point, around age eleven, the salty snacks would have won. By necessity. Something in my body needed, demanded it.

This is what would change my life forever. I had been born blind and lived that way, just another part of who I was. After my eleventh year, there was no denying that something was very wrong.

It’s been more than twenty years since that eleven-year-old craved sugar and so much salt. My kidney disease was growing worse. The nausea was increasing. The fatigue was putting me in bed right after dinner, almost nightly, feeling so weak and unable to run and play like I’d always done, like kids did.

This was the year after I celebrated my tenth birthday, with friends at McDonalds. (A paradise and a sugar/salt lover’s dream come true.)

After the year of the Beverly Hills 90210 poster and the Mariah Carey cassette given to me for my tenth birthday…I was not well as my next few birthdays came and went. I was not expecting to spend so much time in bed, on the couch, unable to eat anything other than that salty, processed, packaged chicken noodle soup made in a pot on the stove.

Bowls and bowls of the stuff were consumed by eleven-year-old Kerry.

I will never forget what it felt like to be eleven and drifting away from any semblance of a normal childhood. The next few years would be trying ones, but I am who I am today because of it all.

Both the salty and the sweet, bittersweet memories of a childhood, never boring.

This was more of the story I’ve been writing for twenty years, the one I want to continue writing, from the year I was eleven and unwell. It was brother and sister, always, and my brother would follow my footsteps, getting sick like me, three years later when he turned eleven.

This was the prompt for
Finish the Sentence Friday
this week.

Kristi, the orchestrator of all of this, she gave me the idea to start with the can of Coke. Read her post by clicking on the link above to see where I drew tonight’s inspiration for the prompt.

What were you doing when you were eleven?

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Hourglass With Flowing Sand, #GlobalWarming #ClimateChange #SongLyricSunday

“What about deprivation, gluttony, the human nation?”

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Another from my all-time favourite: The Cranberries.

For this week’s
Song Lyric Sunday,
the theme is time.

Is it ticking out on us? Are we running out of it?

https://www.youtube.com/watch?v=_AJsLkRbQ74

Tick…tick…tick…tick.

***

We’d better think about the things we say
We’d better think about the games we play
The world went round, around and round
We’d better think about the consequences
We’d better think about the global senses
The time went out, the time went out
What about Chernobyl? What about radiation?
We don’t know, we don’t know
What about deprivation? Gluttony, the human nation?
We don’t know, we don’t know
For me love is all, for me love is all
For me love is all, for me love is all
Time is ticking out
Looks like we screwed up the ozone layer I wonder if the politicians care
And time went out, and time went out
What about our children then? Is there nothing left for them?
We don’t know, we don’t know
For me love is all, for me love is all
For me love is all, for me love is all
Ahh they need oxygen, ahh they need oxygen
For me love is all, for me love is all
For me love is all, for me love is all
Time is ticking out yeah
The time is ticking out

LYRICS

***

More global warming talk…or is it climate change we’re calling it now?

I don’t care what you call it. How much of it did we cause and how much of it can we control or help? How long will science be ignored by religion or plain old ignorance of the mess we’ve made?

I worry about what other governments do. I worry about the oceans not being protected. I worry about what another government and country does or doesn’t do, especially when EPA regulations are being rolled back and we share an amazing natural resource: The Great Lakes.

I wrote about this increasing temperature change thing that’s becoming hard to dispute (though some continue trying anyway).

It was the day in February that my new niece was born, and the weather was so warm that people all over Toronto, on the news, they were ecstatic to be waring t-shirts in the middle of winter. Me…not so much. I wondered just what kind of a situation we were cheering, that my niece and the other children will be inheriting from us older generations.

Are we so selfish and only interested in our comfort levels in the moment that we don’t see, can’t see, won’t see?

Tick…tick…tick…tick…tick…tick…tick…tick…tick…tick…like a clock, counting down the minutes.

And, before you know it, we’re living to see the next ice age. Okay, who knows, but that’s my problem. None of us know what we might be in store for, least of all is me, as I know very little about possible food shortages, famines (already in progress in parts of the world), and more extreme weather patterns and super storms, which we’re seeing all over the place.

If we all want to continue living in a fantasy world of never ending natural resources, this song won’t stop that. I just thought it was poignant, almost twenty years ago when it came out, and we’re reaping the benefits of human greed. What does time change, really?

I’m not going to use the term “blind” to describe what we, as the human species, refuse to see about our time on earth. I can’t see and I am still worried, worried about what a slippery slope it is we may be walking.

I picture that hourglass from The Wizard of Oz. I see the sand or the coloured jewels (red, yellow, green, and blue) like in Harry Potter. I hear the silent sound of grains of sand, falling from top to bottom in that hourglass, singling time we can never ever get back.

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