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TToT: Raining Lumos and Dobby #DisabledAndCute #IAmAPreexistingCondition #10Thankful

Lord, when you send the rain

Think about it, please, a little?

Do not get carried away

by the sound of falling water,

the marvellous light

on the falling water.

I am beneath that water.

It falls with great force

and the light

Blinds

me to the light.

—James Baldwin, “Untitled”

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The magnolia blooms for a short time only. True beauty doesn’t often last. It comes and it goes.

The rain kept coming, across parts of Ontario and Quebec, for most of the week.

Raining cats and dogs: Lumos and Dobby are mine.

Ten Things of Thankful

I’m thankful for delicate things in nature.

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We found this cracked robin’s egg on the driveway and I thought it a sweet discovery. My mom improves on the nature and this sign of spring.

I wondered then, where the inhabitant of the egg went. How did the egg land and not crack into even more pieces? I wondered things.

I’m thankful for leftover wine.

My sister had a wedding shower for a friend and there were leftovers. She was kind to share them with me.

I’m thankful for a writing group built around a hand sculpted wand.

One of our members of “The Elsewhere Region” brought in a birthday gift she’d received. It’s like the Harry Potter wand I bought, even the box, but made specifically for her, with love from a friend who knows her well.

The Celtic Tree Calendar

The stories we all came up with were interesting. Mine was about a teacher of the blind who started a braille club in her class and her wand accidentally fell out of her desk drawer. She almost had to reveal to all her students that she was magic, until her visually impaired student saved her.

The others used their very interesting imaginations and came up with wild tales of magic and I was once more blown away by their storytelling abilities.

I am thankful I could help spread hash tags about the disabilities many of us were, in some cases, born with.

The hash tag “I Am A Preexisting Condition” is making the rounds on Twitter since the shocking revelation that the GOP and the House voted in their horrid healthcare plan, which is making many people I know with chronic illnesses and conditions afraid for what will happen.

I felt helpless and wanted to do something. I couldn’t think of what that could be. It’s just so outlandish.

I am thankful for my nephew’s creativity, imagination, and the ideas that are all his own.

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He drew an X on a piece of paper and tacked it up on the door. We saw it there when we arrived the other day and I was smiling when I heard what it’s for.

He put it up to keep the spiders out.

NO SPIDERS

I am thankful I could give my niece her bottle and put her to sleep.

My nephew was staying with his grandparents overnight and he was a bit sad as bedtime approached. My mom comforted him and I fed Mya her bottle. That girl loves to eat.

Then she fell asleep over my shoulder.

I’m thankful for echoes of a memory with a lullaby.

My mom started to sing an old lullaby that her mother, my grandmother, used to sing. This seemed to bring back memories for me, something so vague, about my grandma singing to me.

“Go to bed my little darling. Close your big blue eyes. Soon you’ll hear the sandman calling, far beyond the skies.”

It’s funny that you can sense a memory from the past, so long gone, and even start to wonder if it really happened. I remember being sung to like that, but I don’t know when or how old I might have been. I seem to remember being held, but can any of us remember back that far into our pasts?

Well, I held Mya and the entire time I tapped that song out on her back, gently, over and over again, trying to sharpen my own memories. It didn’t work, but the song is a beautiful one.

I am thankful that France did not make the same mistake the US made.

France is a totally different country than the US of course and I knew they would make the right choice with Emmanuel Macron.

Just a few weeks ago, Canada gave a giant sigh of relief, when our own (he was being called Canada’s Donald Trump) and he was running for the Conservative Party of Canada, dropped out.

Kevin O’Leary is a businessman, like 45, known for his role in Shark Tank, but he didn’t feel quite as outrageous. Maybe that was just my wishful thinking there, but he decided on his own that he couldn’t stay in the race.

I don’t know what will happen with the EU and I hope no more terrorist attacks occur in France or anywhere else, but I am sure we aren’t done with all that, sadly.

I am thankful for the sun to make its reappearance.

Even I grew weary of all that dreary weather, day after day after day. The sun does shine again, but unfortunately, some are dealing with major damage to their homes and their lives. Rain has power to mess with us. The sun revives.

And this last photo isn’t the most pleasant sight. I begin with a beautiful flowering bush and I cap off this TToT with the scene we came across in my back yard.

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I have squirrels living in the top of my garage and this one came to a sad end, landing in a tree and hanging there until we noticed it. Poor thing.

Loss and endings. I just hope those affected by the flooding, in Quebec mostly, can salvage something of their homes.

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Only When I Breathe #SongLyricSunday

How can I put this? How can I possibly make people understand how it feels?

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I struggled with these kinds of questions for many years. Pain can be physical or emotional. Both, I know now, are comparable.

This song is not her biggest hit. I’d say Melissa Etheridge was at the top of her game in the nineties, but this one came out a few years after I’d started experiencing daily pain around the year 2000, from either headaches or somewhere in the rest of my body, mostly my limbs, but really a sensitivity to the touch.

This song was likely about emotional pain, which most songs are about, but by this time Melissa probably experienced both, within relationships or physically because of the breast cancer she was diagnosed with.

***

I, played the fool today
I just dream of vanishing into the crowd
Longing for home again
Home, is a feeling I buried in you
I’m alright, I’m alright
It only hurts when I breathe
And I can’t ask for things to be still again
No I can’t ask if I could walk through the world, in your eyes
Longing for home again
Home, is a feeling I buried in you
I’m alright, I’m alright
It only hurts when I breathe
I’m alright, I’m alright
It only hurts when I breathe
My window through which nothing hides And everything sees
I’m counting the signs and cursing the miles in between
Home
Home, is a feeling I buried in you, that I buried in you
I’m alright, I’m alright
It only hurts when I breathe
I’m alright, I’m alright
It only hurts when I breathe, when I breathe
Yeah, it only hurts when I breathe, when I breathe
Oh,it only hurts when I breathe

LYRICS

***

It’s hard to make people understand. We all experience emotional pain from loss of a loved one or other family troubles. Love ends. People leave.

Most of us get a headache or the flu or a broken bone at some point in our lives. I know that child birth can be painful, not from personal experience but from those who have felt it, but I know that pain fades because of the reward for it in the existence of a precious child. Most acute pain fades from our memory as time passes.

It’s chronic pain that is hard to explain because most people, like the thought of living life as a blind person, can’t or don’t want to think too hard about it, don’t want to imagine that happening to them, but living with chronic pain changes you. It’s changed me.

The awful pain scale is a familiar way to help people understand, but pain is subjective and one’s ten is another’s seven. If ten is the worst pain you’ve ever experienced, what was that worst pain? Everyone has had such varied experiences with pain that it makes it hard to rate sufficiently.

Stabbing…throbbing…dull…sharp…pounding…and so on and so forth.

I’ve only found a few people in my life who truly understood it. One of them is gone, so I am greatly familiar with both emotional and physical pain from many sources.

I decided this
Song Lyric Sunday
I would focus more on the physical side, as I’ve written plenty on emotional pain already.

I don’t talk a lot about living with chronic pain, here or elsewhere, because I don’t believe people truly want to hear about it too often. This song brings it up in the chorus though, as saying “it only hurts when I breathe.” While coming off sounding dramatic, this one line certainly gets the point across.

Don’t get me wrong, I love breathing, but I could do without the pain.

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A Balloon In My Mind #AtoZChallenge

In my dream, the balloons were in the yard, trying to get in the house.

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My grandma once told me of the time she was walking along a beach and came across this blue balloon thing on the sand. She gently reached out toward it. She wasn’t shy, even when she had no clue what something was.

The A to Z Challenge – J is for Jellyfish

I have seen jellyfish in my distant memory, but since I’ve lost more of my vision, the image of what one looks like has faded.

So now, after my grandma’s description and the dream I had, I think of a balloon whenever I try to imagine what a jellyfish looks like.

I have studied them intensely, on the many ocean documentaries I’ve watched in my time. They aren’t something I would like to touch in the near future. I fear walking along the sea or swimming in it, for fear of coming up against one. I hear the stories of stings and still, for some reason, the jellyfish is still one of my favourite marine creatures.

There is a place, an inland lake, somewhere in the south Pacific Ocean, on an island known as Palau. I want to visit Jellyfish Lake, if I could go anywhere, because then I could stop imagining what a jellyfish looks like, and actually swim with a bunch of non stinging jellies.

What might you envision in your mind, if you’d never before seen a jellyfish? Balloon or something else? Balloon with stinging tentacles of course. Such cool creatures, but it made for one hell of a bad dream.

***This is my first year of joining the A to Z Challenge and so I’ve decided to post randomly, as a way for new visitors to my blog to get to know me a little better. I look forward to discovering some interesting new blogs too.

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Time, Timing, Connections, and Space #Diabetes #AtoZChallenge

It’s a disease which can eventually lead to things like blindness and kidney failure, both of which I already have.

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There is a connection there, just one of multiple connections.

The A to Z Challenge – D is for Diabetes

My nephew has a father because of modern diabetes treatments. A magical pump, carried close to the body, able to deliver the life saving insulin a diabetic needs would have been unheard of fifty years ago.

Sometimes, at night when I can’t sleep, I think about other late nights when I would talk for hours with my grandmother. Sometimes she would talk to me about her little brother.

I think about that small boy and I wish I could have reached out to him, like I did to my own little brother when he was sick.

My mother never got to meet her uncle and I never had the chance to meet my great uncle. He was only four when he passed away from diabetes, back in a time when treatments were barely available or known.

It’s twenty years since I was a sick and scared young girl, but I was lucky to have been born after kidney dialysis and transplantation had been well developed. A matter of timing. I think about that little boy, so ill, and I feel a connection that stretches through time and space. I wish I could ease his suffering. All the bits of memory my grandma told me about that time and that boy.

I think of my four-year-old nephew and I watch him colour with his markers and jump on the bed when he’s supposed to be getting ready for bed. Then that other little boy pops back into my head.

I would like to write more about this, a piece about timing and connections of strange makings. I’m not sure this is entirely my story to tell…just one of many I can’t get out of my mind when I think about all that happened in my own young world, just exactly twenty years ago. It weighs heavily on me, somehow.

And so is writing about it not the answer?

***This was a result of insomnia, a late night Facebook post I wrote and thought it fit this challenge and the corresponding letter perfectly.

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Past and Passing, #SongLyricSunday

Okay, so I decided to try the A to Z Challenge, on a whim yesterday, but the trick of it is that you are supposed to blog for every letter of the alphabet, each day except Sunday. Well, the challenge began on a Saturday this year, so I guess I can use today to prep for Monday’s post.

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And also I can do my favourite thing of the week.

Song Lyric Sunday #SongLyricSunday

In the month of March (of which we just completed a few days ago) a friend was posting for an 80s music challenge on Facebook. She shared a song from that decade, every day, and then she extended it. I discovered some great ones from her. I joined in for a week, stopped for a week or two, and then thought I would end the month (on the final days which were 30/31st) by posting two more.

https://www.youtube.com/watch?v=1NvsMKYgCsM

This is the first of the final two I posted, on March 30th.

I like it because it is a beautiful song by Richard Marx and I love the saxophone solo and the fantasy feeling throughout. Apparently he wrote it about him and his wife and a trip they took to Hawaii together.

Endless Summer Nights, 1988

Sounds like paradise to me.

***

Summer came and left without a warning
All at once I looked and you were gone
And now you’re looking back at me
Searching for a way that we can be like we were before
Now I’m back to what I knew before you
Somehow the city doesn’t look the same
I’d give my life for one more night
Of having you here to hold me tight; oh, please
Take me there again Oh, oh

[Chorus:]
And I remember how you loved me
Time was all we had until the day we said goodbye
I remember every moment of those endless summer nights

I still recall the walks along the beaches
And the way your hair would glisten in the sun
Rising in the afternoon Making love to you under the moon, oh
Do you remember all the nights we spent in silence
Every single breath you took was mine
We can have it all again
Say that you’ll be with me when the sun brings your heart to mine Oh, oh

[Chorus]

There’s only so much I can say So please don’t run away from what we have together
It’s only you and me tonight So let’s stay lost in flight Oh, won’t you please surrender


[Chorus]

Endless Summer Nights (Lyrics)

******

So, I went with A to Z Lyrics because that kind of mirrors the A to Z Challenge and I like coincidences like those.

I like this Richard Marx song because it feels nostalgic and that’s what the eighties feels like to me. He’s looking back on a past memory, a passing thought, vacation in paradise with a lover. The story is told well from Marx’s POV.

I, myself, was born in 1984 and so it’s the decade where I was able to just be a kid, with my family, a simpler time in reflection.

I’ll never get that back and that makes me sad, despite everything I’ve been lucky to have and experience since those years of innocence, when everything was under control in my world and I was taken care of. It feels like so long ago now, a time long gone by.

In the moment, sometimes, it feels like it will last forever, an endless perfect moment or night with someone you loved. Sadly, realistically, it never does.

And one more, likely lesser known 80s song, from my favourite movie of the decade: 3 Men and a Baby.

https://www.youtube.com/watch?v=aznod0Ij43g

BONUS.

Boy, do I love 80s music.

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Pieces of Peace, #PiecesOfPeace #FTSF

I’m sitting in a loud, dark, crowded bar on a Saturday night and I don’t belong here. I feel invisible and yet like I stand out, anyone who sees me sensing my feelings of not belonging, maybe not anywhere, but certainly not here. I am hear to listen to music sung with heart, guitar played with boundless talent, but I don’t fit in in this place. And so I begin to examine each individual bead on my little piece of Mexican memory and I feel like I am meant for something, somewhere, somehow.

***

I took it off the other day, likely to wash dishes or take a shower, and I couldn’t remember where I’d placed it when I went to put it back on. I panicked. It was a strange sort of panic I wasn’t expecting to feel.

It was like I was Gollum from Lord of the Rings when I couldn’t find my bracelet. I needed it. It is PRECIOUS to me.

***

It is how I find peace in these troubled times, times which test my patience with humanity and with my own patience with myself. Vicious circle.

A wise man with a long white beard made it. He chose it for me, out of a selection of other bracelets, and he placed it on my left wrist. He told me, in so many words, that writing is my destiny. All the new experiences I was having, making it all the way to Mexico on my own, I needed a little reassurance, in that moment, even though I’d started to feel it deep down, and he and his mosaic of art and wisdom came along at the perfect moment in time. His words and my bracelet came along, reflecting back at myself all that I can be and all that I already am.

***

Now, when my heart wants to jump out of my chest on a daily basis, when I hear news I want desperately to block out completely, the fingers of my right hand grasp and turn the beads on my left wrist. I turn the bracelet, every uniquely shaped and textured piece of colour and exquisite form over and over, around and around, breathing deeply and grabbing hold of the memories of those moments of peace I felt while I was away from home.

Thinking about the care and time that must have gone into making my newly acquired wearable piece of art, how someone even took the time at all, this brings me peace. I find peace from art, from a piece of jewelry or a piece of music created and played with passion.

This has been my story of finding pieces of peace wherever I can.

These pieces of art bring me a special brand of peace, one I’m currently finding it hard to obtain anywhere else, in any other way. Maybe, if I say the words piece/peace, again and again and again, just maybe I will feel just a little more of it.

And so, thank you to Mr. McLauchlin and the musicians and artists and peace bringers/makers of the world, for all that you’ve given me.

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What A Life! #FTSF #SoCS

“What a life!” my oma would always say with a sigh.

She was right. I say it now, that line, in exasperation, and in my memory of her, to honour her unique brand of wisdom and her straightforward ability to speak the truth.

I just had a checkup with a nurse practitioner. She was very thorough and we talked for what felt like a very long time. No rush to see me briefly and get me out the door. No neglect of what I needed. I told her my entire history, as fast as I possibly could, but she did not want me to hurry through the details. She was wonderful.

It takes me a little while to get through my somewhat complex medical history. I had her curious and eager to look up my eye condition

and the rare syndrome I share with my brother.

This took me back, which it can most often do, and required that I look back over the years.

Mostly I spoke of how sick I was before my then gp finally diagnosed my end-stage kidney failure at age twelve. That sure took me back, into the bad and the worse in terms of memories and recollections. I told her how hard it becomes to remember to include all necessary details, with every retelling I give a doctor or nurse. She was very understanding.

I see how far I’ve come when I look back, using my medical story as the example. I reflect on the girl I was and the struggles in the following years. I want to think I am doing alright considering. I think of my oma and I leave my medical checkup and I sigh.

When it comes to the years, I do so much looking back that it is sometimes a heavy weight on my shoulders.

I like the romantic notion of the days of yore. I read such fairy tales, but life is never like those stories in literature in reality. People reminisce about how it used to be, but perhaps, just perhaps they are remembering a time that never actually existed.

That may come across, to you, if you’re only just hearing me for the first time, as a highly pessimistic slant to life. Perhaps. Your take on, say the last twenty years of your own life, it could very well be all rosy coloured and tinted through different glasses. I haven’t worn glasses since 1996 I’m afraid.

No self pity here, but my life isn’t now or never has been a fairy tale anyway. Just the sort of telling it like it is/was, just like my oma used to like to do. That’s about as stream of consciousness as I can get today.

There is thankfulness to be had here, (which will for sure include that wonderful nurse), of course, but that is still to come in my next post.

🙂

I’m doing a double linkup this weekend, starting with

Finding Ninee’s Finish The Sentence Friday,

followed by

Linda G Hill’s Stream of Consciousness Saturday.

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