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TToT: Thirty-five For Me and Five For Her Headache, #Blogiversary #10Thankful

Here, I hope to leave something behind when I go. Here, I won’t look back with any shame or regret at what I’ve said, what I’ve written. I am proud to be Her Headache.

I am
thankful
for this blog and all those who’ve found me here and read what I’ve written on these virtual pages, ever since that 2014 February of my thirtieth birthday.

As for how to celebrate my five-year anniversary with this space, I couldn’t quite settle on how to best show my gratitude and my pride on all that this blog has brought to my life.

In the beginning, it all started with me showcasing my
BUCKET LIST
of items I’d wanted to experience.

Since my kidney transplant, twenty-two years ago, I am all about not taking each day for granted and my list was a way of stating my purpose and no longer settling for less out of fear. Things like chronic pain and disability threatened to take away a life worth living, but I fought against that and found this blog as a part of that.

In this last five years, I’ve been lucky to check off several things on the list, though I am enjoying the ups and downs of the journey, as I’ve learned that to be the best part of the whole thing really.

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Still, I can’t stop wondering where life will take me and so here we go with the review of the things I have done and seen in five years that I may not have dreamt I’d do, during the most difficult days in my past:

I am thankful for the teacher I’ve had, for the last three years, since I decided to take a chance to learn to play an instrument in my thirties. Violin was beautiful to me and I wanted to learn to play with a bow, to produce those kinds of heartbreakingly gorgeous sounds I’d heard from the violin for years. I was drawn to it since I gave up on clarinet back in high school. (Too much air needed, blowing into that thing, which was hard on my head, prone to headaches already.)

She is leaving on a new adventure soon and I must face that thing I often dread, “Change”.

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I am thankful for my violin and the progress I’ve made so far, even when I get down on myself for not learning more, faster.

I am thankful for my autumn of 2018 visit to the Maritimes, Canada’s eastern provinces, even my short visit and the limited bit of Nova Scotia I saw. I am thankful I got to place a small item, a token of my appreciation for her gift of iconic literary characters like Anne Shirley in Canada’s cultural landscape, on her gravestone. I got to write a note of my gratitude, from one writer to another, in the guest book in the house Lucy Maud Montgomery was born in. I was brave to finally state, in writing, that I think of myself as a writer, even up next to someone as talented as Montgomery.

I am thankful I got to walk along those Prince Edward Island beaches, the coastline and the smell of the sea. Red Point. The End of the World P.E.I. and the force of the wind at that spot, lighthouse next to a drop down to fearsome ocean roaring down below me.

In these last five years, (not only out east) but I’ve traveled to Mexico, Yukon, British Columbia, and back to Florida for the fourth time.

I am thankful I got to make it to my twenty-year anniversary with my kidney, from my father, and that I got to celebrate that with him and my family and friends, zip lining at my favourite Niagara Falls on the Canada side. I hope to zip line in more places around the world in future.

I am thankful I technically did get my writing available in bookstores, when I wrote a short piece which was included in a print magazine called Misadventures. It was only available in Barnes & Noble, in the US, so a friend went into one and took pictures for me of that magazine on the shelf. I hold that book in my hands and am proud to know I have writing inside of it.

I thought it fitting to make my five-year blogiversary into a TToT post, one of the best things to come out of this blog since 2015 when I discovered other bloggers doing it and I joined their exclusive TToT blogging community.

Thank you, TToT comrads and all of you, for visiting me here. You’re the best.

All jokes aside on the wisdom of getting older, as I turn thirty-five and look back and look ahead, I know the fun is in the journey, not necessarily its destination. Still, I will always write about it all here, or for as long as I am meant to,

Where will I be in five years? And, how will I have gotten there?

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Lonely Vs Alone #TGIF #JusJoJan #FTSF

Jann Arden says something in one of her songs about the difference between being alone and being lonely.

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All of us crave solitude sometimes, but more often we look around for
companionship
in our lives.

Admittedly, I like my space and my ability to do what I want, when I want, not having to consider another’s wants or needs.

Sounds selfish, perhaps, but my life circumstances have brought me to this point. I always fear, when and if the time comes, that I won’t be able to go back to life with an everyday companion somehow.

It’s hard to say when or if I’ll have to meet that situation again.

I do not know, either way, but In 2019 I wish for companions, in various forms that I can have valuable and memorable experiences with, the kind I can look back on in 2029 and smile at the memory of.

In all the months of this coming year, now in progress, I hope to laugh and listen, to wander and wonder. I hope/wish, in 2019 that I will learn from my companions and walk away from each experience, holding each one close to my heart.

On one of the days, in mid January when my chronic pain is making me tense yet resolving to fight back, I don’t want to shy away from what’s maybe a bit stressful or difficult, even if the risk of pain looms over me at the thought of doing anything at all.

On this
Finish The Sentence Friday,
rolling over into Saturday, I won’t let pain keep me from dreaming and planning out my wishes/hopes, though I do not call them resolutions for a new year.

I may be alone in this space, in this place, I know I am not alone, not really. I am not lonely, when I don’t wish to be.

Thanks,
Di,
for getting me to consider, through pensive contemplation:

“No I will not lay down. I will not live my life like a ghost in this town. I am not lonely. Swear to God, I’m just alone.”

—Jann Arden

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Can Hardly Wait, #SecretMission #WomensTravelFest #FTSF

It’s always a good thing –
10 things I’m looking forward to
having something or some things on the horizon.

Ten things I’m looking forward to are:

Getting myself a new pair of jeans.

I have hand-me-downs and old pairs. Time for a nice, new one that fits me just right.

Presentation night at the end of the storytelling workshop I’ve been taking.

We are telling a story from our life, in front of people, and working out how to best present it to keep an audience’s attention. I thought I would take this workshop, to get more comfortable with going from writing to speaking, with amazing results from myself and the other members in the class. On the final night, we are inviting family or friends and speaking our stories to a wider group.

The new Fantastic Beasts movie.

Of course, staying at my local cinema to see this one, my older brother will have to describe what’s going on because there’s no audio description, but it’s Dumbledore as a young man. Exciting.

Starting to complete the final two credits toward my high school diploma.

This one causes me a bunch of anxiety to talk about and embarrassment when I do, but it’s been many years and I don’t want to let my chronic pain win. I will complete these last two credits and then I can get on with the rest of my life.

Christmas.

Some years were better than others, some years harder than others, but I know I’m not alone in becoming a happier version of myself around that time of year. It makes me happy. It just does.

For the second Harry Potter movie (Chamber of Secrets) to be shown nearby, along with an in-house full orchestra.

I saw the first HP film, after missing it the first time round in theatres, last January and loved hearing the live musical score, including the string section.

Women’s Travel Fest in New York City.

Check it out and join me there to celebrate International Women’s Day, 2019.

My secret mission while I am visiting New York City.

I know how much I dislike it when people announce they have something exciting to say/something going on and yet they can’t say what that is, for whatever reason. Unfortunately, this thing I am looking forward to is quickly becoming an important part of my trip to NYC and I am not sure how it will play out. I am doing something big, new for me, but it will make a statement. I’m just not sure if I should go on and on about what it is, as I’m not sure how well it will be received. I may need some help and will need to do some research into a particularly notorious landmark in the city.

And, to finish off on a travel theme, to hopefully make it to the
Canadian Federation of the Blind’s
yearly national convention in Vancouver, British Columbia.

And, the
National Federation of the Blind’s
convention being held in Vegas for the first time.

Really, my 2019 isn’t all that well-known at this time, as I am hoping 2018 will wind down as calmly as possible in the meantime.

Keep making plans and finding things to look forward to,
along with those from Finish the Sentence Friday,
as it does a world of good and helps to boost the mood.

Here we are in November already: 2018 on its way out and 2019 on its way in.

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Shades of the Unwell, #SongLyricSunday

I lived in a kind of shadow world, most of my twenties.

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The chronic pain I was living with had covered me over, casting a shadow over my days:

Chronic pain makes you feel invisible, or at least it did me. Shadows flitting, everything fleeting.

I was left to watch them dance across my walls and ceiling at night, wondering what any of it was even for, if I even mattered or had a purpose at all.

What was the point of sleep? Was there even any reason for me to get up in the morning?

***

All day staring at the ceiling
Making friends with shadows on my wall
All night hearing voices telling me
That I should get some sleep
Because tomorrow might be good for something
Hold on
Feeling like I’m headed for a breakdown
And I don’t know why

[Chorus]
But I’m not crazy, I’m just a little unwell
I know right now you can’t tell
But stay awhile and maybe then you’ll see
A different side of me
I’m not crazy, I’m just a little impaired
I know right now you don’t care
But soon enough you’re gonna think of me
And how I used to be…me

I’m talking to myself in public
Dodging glances on the train
And I know, I know they’ve all been talking about me
I can hear them whisper
And it makes me think there must be something wrong with me
Out of all the hours thinking
Somehow I’ve lost my mind

[Chorus]
But I’m not crazy, I’m just a little unwell
I know right now you can’t tell
But stay awhile and maybe then you’ll see
A different side of me
I’m not crazy, I’m just a little impaired
I know right now you don’t care
But soon enough you’re gonna think of me
And how I used to be

I’ve been talking in my sleep
Pretty soon they’ll come to get me
Yeah, they’re taking me away

[Chorus]
But I’m not crazy, I’m just a little unwell
I know right now you can’t tell
But stay awhile and maybe then you’ll see
A different side of me
I’m not crazy, I’m just a little impaired
I know right now you don’t care
But soon enough you’re gonna think of me
And how I used to be
Yeah, how I used to be
How I used to be
Well, I’m just a little unwell
How I used to be
How I used to be
I’m just a little unwell

LYRICS

***

I wanted people to see me for who I was, who I had been, or could be. I worried nobody would see my value in the world any longer, that they wouldn’t stick around long enough to see me as more than how unwell I felt.

This week’s lyrics (the Matchbox 20 song I’ve chosen) are all about
shadows
and the tricks they play on the mind.

I still don’t sleep all that well, even though I feel again like I have a purpose, though the timing of this post takes me back to those shadow filled long nights of my twenties again.

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It’s All Around Me, #JusJoJan

It’s just past midnight as I write this and so obviously it’s dark out, right?

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I am headed to a routine eye appointment next week and nothing feels like it is routine. It feels much more like I am hurtling towards darkness.

There are all kinds of darkness.

People are scared of that, the dark, and “blindness” means darkness. Thus, most of the sighted world is more afraid of blindness and what that would mean, what that might look like, as the case may be, than being buried alive.

Okay, well I hear that was the case in one of those “what would you rather?” games. Since I am a definite clausterphobic, I thought that unbelievable. To be buried alive would be my worst fear.

I could never be a coal miner, for several reasons.

I am not afraid of the dark however. People are afraid of it because they are afraid of the unknown, all they cannot see, and afraid, in the practical sense, of falling down a flight of stairs or running into the wall.

There are ways we who are blind or mostly so learn to adapt to such practical concerns. I did run into the corner of a wall once, bleeding and leaving a scab in my eyebrow for weeks, but that doesn’t happen with any semblance of regularity because I try to take my time and move slowly. I don’t remember my hurry that day my eyebrow made such forceful contact with that wall.

I slide my feet, if a floor is messy. I know when there are stairs, in a familiar place, or I walk so slow because it isn’t familiar enough, unless I use my cane.

It isn’t always so easy to accept the need for a white cane or any kind of cane, for mobility or assistance because that cane is a visible symbol of perceived human weakness.

I need help and I keep learning to ask for it, to not be afraid of it, as some are afraid of the dark.

I am afraid too. I lived with some vision for my childhood, then lost a lot as I grew into an adult, and now here I am.

I don’t use my little remaining vision, as blurry as it is these days, but then it hits me how much I still do use it, as I contemplate the darkness that could be in my future.

The eye doctor might see something during his tests, but it’s more likely he will not. That is a good thing, but like with the invisible chronic pain I live with, sometimes there is nothing to see. This is both good and bad too. Nothing urgent showing up to attack with modern medicine.

I am drawn to the north, far up from the part of Canada I live in, where darkness means something different. I went to check out Yukon skies and June’s extended light. Strange to see vestiges of daylight at midnight.

I hope to return to Canada’s north in winter. I want to experience all that darkness, as a representation of that darkness that means blindness to so many.

I think it’s more like a fallen screen of dimness, fuzzy, foggy, twilight, which wouldn’t be all bad, but the fear still hovers there in my own head.

And so I count down the final days until my eye apt and, though I know it won’t probably be the giant thing I tend to build up in my own brain, I know these topics will continue to attract me, always giving me something more to say and to write about.

I didn’t even get into the symbolism of darkness and light in terms of contamination vs purity, good vs bad. It’s tied up in religion and in so many things, but so much negative is in the news every day and I think about all that far too much.

It’s this appointment that’s on my mind, front and centre.

I wish I could convince myself and other people that the darkness isn’t the worst thing in the world though, that we’ve made it that way in our own heads.

And so, the debate continues and the question goes on. I will continue to write about this. Stay tuned and look to the skies, but, if you can, watch where you’re going too.

I’m thrilled to be the provider of the Friday prompt word
for Linda’s #JusJoJan
to end off a long week, as January passes us by, on its own time.

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Favourite Things

Things, at the start of 2018, are changing up bit with the
FTSF crew.

My word for 2018 is “stoker,” which also means to stir things up, so I am all for this. I admit, I often have a difficult time with change of most kinds, but I am really trying. Still, though the list may have changed and has grown over my lifetime, here is my list of ten favourite things:

Favourite Thing Ten – Water

I love the roar and rush and rumble of waterfalls. It’s the trickling of a stream, brook, or creek. Or, the increasing and then the decreasing of a wave that’s coming and then going, washing in and back out again, leaving ripples in its wake. It’s the blue, green, rocky, sandy bottom of a lake or ocean. It’s my favourite metaphor for life, both the good and the bad of it, the scary and the sublime. Its power and its purity. It’s clear and clean, or heavy with mineral count. It is the refreshment in a glass or the lapping at my feet, pouring down my throat (to filter through my kidney) or threatening to wash me away.

Favourite Thing Nine – Marine Life

These are the creatures that swim, float, glide, or drift. They range from the smallest crustaceans to the largest squid/octopus, jellyfish, ray, or whale. It lives down on the sandy floor, at the deepest depths, or skimming and skidding along its sunlit surface. It is hunt or be hunted, all while storms rage, boats speed on by, nets drift and dangle, and waves carry it all along, currents deciding the course. It’s gills and blowholes and claws and fins and tentacles. It’s all the colours of rainbows in skies above. It’s camouflaging in all shades and underwater backgrounds.

Favourite Thing Eight – Space

It’s my earliest adventure, escape dream. It’s the dark, still, and the silence. It’s the circles and the rings and the orbit. It’s the blue of ice and the yellow/orange of fire from stars and swirling gases that envelop giant planets. It’s massive red spots as storms and dozens of Arctics stacked on one another, all the way out to the outer ranges of the galaxy. It’s yellow, blue and green and white, and red, and black that’s more than night is or will ever be. It’s infinite. It’s out there, somewhere.

Favourite Thing Seven – The Four Seasons

It’s the northern hemisphere and North America, central, southwestern. It is broken up into quarters of a year, here in (north more than south) of Canada. It is the smell of snow, the cold breath of it on my skin, and the feeling of invigoration. It’s the silence of the snow, the rustle of the warm breeze in the trees. It’s the intense heat and the brightness and burning from the sun, the kind to make any exposed skin surface feel like it’s on fire. It’s the birds of every temp, born to brave it or fly away from it, flocking back again. It’s the Canada geese, flying south and coming back home after long wait of months passed. It’s the early darkness, short days, green of new growth and rebirth. It’s the sprinklers and the mowers and the bikes. It’s the rustle and the crunch and the shuffle of dried out leaves. It’s the rain and the mist and the sleet and the snow, wet, soggy, heavy, and slush under boots and shoes. It’s the puddles after the rain and the icy spots before the thaw.

Favourite Thing Six – String Instruments

I love playing with a bow instead of a pick or a reed. I love the melancholy and the heartbreak of such a sound. I love the feeling, the shape of my own personal violin. The wooden body and the strings, stretched by pegs. It’s the deep melody of the cello and my newness, inability to tell difference between violin and viola still. It’s the power of the bow in my right hand, my chin and chest holding up my instrument, while my left arm, hand, fingers hold the neck and both sides of my brain try to figure out how to work separate and yet together, all at once, to produce more than the sound of a tortured animal and more of the notes and the scales I struggle to get straight in my own ear.

Favourite Thing Five – Art

I loved the visual and the sculpting, with lines, shape, colour, word, image, and sound. I love how creativity flows from each of us like unique perfume, like the individuality of every snowflake that falls from the cold sky.

Favourite Thing Four – The Purring of a Cat

I gently place my two fingers on my cat’s throat as he purrs. I feel it reverberate through his whole body as he settles down against my legs. He makes my chronic pain bearable, on the most unbearable of all days.

Favourite Thing Three – Literature

I love how it can be an act of courage, of hope, of truth. I love how, in essence, it sweeps me up and away. I love how it is about all of us and none of us and each of us, individually, on a personal level, still stretching out to infinity and some far off, far flung lands.

Favourite Thing Two – Travel

I can do it on foot, by car, train, bus, boat, or plane. Or, I can do it, go there in my mind, anytime., even as my sight fades and my memory and yearning grow stronger. I love the people and the places and the things. I love how stepping foot somewhere new or old, on returning or first approaching, that I am someone new, on my own, personal journey of discovery and upon discovering.

Favourite Thing Number One – Niece/Nephew Voices and Laughter

It sounds so grown up or only days from becoming words. I love the sweetness of the high pitched and the similar giggling of siblings. I love that it can turn, from sad to joyful in a single second of exuberant speed. I love the ring of it, the jangle of it, and the shimmering, swinging, swooping crystal clarity it brings, on all sides, expanding the walls of my heart as an aunt.

So there it is, my top ten list, not affiliated with David Letterman’s old show. Sure, some things are more to-the-point than others. I can go from the highly specific to the wide expanse of a thing, perhaps giving me the chance to write fifty favourite things, condensed down into ten, abstract or less so, as I hate to choose.

Check out some of
Finding Ninee’s
favourites too.

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TToT: Insertion Follows Playback Like Edit Follows Automation – Full Cold Moon, #10Thankful #IDPD2017

“(UN IDPD) serves as an important reminder that globally there are over a billion people with a disability. This year’s theme, “Transformation towards sustainable and resilient society for all” is especially relevant to our accessibility efforts…”

—Microsoft

More on IDPD2017 from the WHO.

I know when and how to celebrate and I am learning when to stand up and speak up for the important things – overall, a thankful post brimming with gratitude really.

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Photo caption: sisters watching the decorating of their father’s 62nd birthday cake. Talking/smiling. Happy Birthday Dad! XO

Ten Things of Thankful

I am thankful for this artistic girl.

Making works of art out of the task of cupcake decoration.

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Making something, all her own, and loving it.

I am thankful for this sly guy.

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He likes to hide, but there’s a mischievous spirit just under the surface, behind the hands that sometimes cover his face when he’s playing shy to the camera.

I am thankful for such a smart and curious almost ten-month-old sweetheart.

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Photo caption: Cousin hugs.

Her big cousin Soph adores her. It’s sweet to see them interact.

Mya is so interested in everything now. She is so close to walking, as she sees the rest of us doing it and wonders why she hasn’t managed it yet.

She is the happiest baby I’ve seen really. She likes to cuddle, but I can barely keep up with her when she’s on the move, and she’s not even a year old yet. Her mother and I are in no real hurry though.

I am thankful for the missing and missed one at last weekend’s gathering and the kind soul he is.

Old soul is my man Maxwell.

I am thankful he could enjoy his new friend’s birthday party. He got so excited. He was counting down the hours to his first party invitation since starting junior kindergarten in September.

I am thankful for a name given, from a friend, that suited my current state rather perfectly.

**Given what you’ve shared recently, I’d say the cauldron’s selection is a potent one for you. Your Embrace the Darkness name is “Good Night’s Sleep.”**

I had mentioned my sleep/dream issues lately and she generously handed this one to me, gifted me with it as a way to accept and deal.

I am thankful for a visit with one of the few people in my life who understand about living with chronic pain.

She brought me a coffee, doughnut, and a sympathetic ear.

She lives with pain and manages to hold onto her most original sense of humour and I take lessons from her on that front – where I find strength through some good sarcasm now and again, I see she does too.

I am thankful my friend arrives home from Ireland next week for the holidays.

I see her and her daughter just once a year, at this time, and it’s a fascinating way to observe the growing up of any child. They are quite the pair.

A little Christmas shopping with them maybe? I want to get her something memorable, as I only get to see her once a year and it takes her a little time, each time, to warm up to me again. A toy may help, but it can’t be anything too big because it must get back to Ireland.

Lots for them to cram into only a few weeks here back in Canada, with family and friends, but it’s always fun.

I am thankful for such kind and generous parents.

They bring me medication when I go away and forget it at home. They go that extra mile, in so many ways, and are flexible in so many ways too.

They are both unflinchingly generous people.

I am thankful for another job completed and well done, hopefully.

I wrote a memoir piece about our family, from the past, and the early December trips to a giant toy store we’d make as a family.

I turned it into a bit of a back-and-forth with me and Brian. We recorded it and added sounds and a bit of music to the piece.

We are submitting it for consideration on my brother’s favourite holiday Christmas marathon radio show he has listened to for the last three years.

Even the year of his horrible fall, when he was slowly recovering with a brain injury, he listened. The jingle bells accompany the radio guy and he plays some of the most obscure music for the season, to be heard on a New Jersey college station.

In the midst of all the musical pieces, he plays short holiday themed stories, recorded by friends and fans. This year we wanted to be included in that.

We shall see what he thinks when we send it to him.

Adding more…

I am thankful for fresh edits to a piece and that time away so I can come back at it with fresh eyes.

I wrote about the road I took through my Yukon visit and the road I’m traveling down in my life.

I worked on it with one editor and took a few weeks away from it. Coming back now, with fresh eyes, I can consider other editing suggestions and work to make it the best piece it can possibly be.

I just saw a Yukon documentary, playing in theatres for a limited time, and this virtual return to the north of Canada has given me new life to put into the writing.

I appreciate all I learn and how I can improve and grow as a writer, with the guidance of talented people I am lucky enough to get to work for/with.

I am thankful for a movie about the Yukon in my heart since I visited there, even without the DVS working.

It’s funny to have the story, on the International Day of Persons with Disabilities, but again we ran into issues with the audio description service at the theatre.

I was pleasantly surprised to discover they said they had it. A worker disappeared somewhere and came back with two headsets and wireless boxes.

Once inside the we turned them on. One worked and the other did not. The first worked, but it was describing a story that certainly wasn’t that of the Yukon.

We were offered their apologies and two free movie passes, but that won’t address this issue.

I did enjoy the film, despite all that, but a documentary, at least, has steady narration.

I don’t even think about going to an action movie or one with a lot of adventure, not without the proper assistance from a helpful person sitting next to me.

This is no answer. Perhaps not that many blind people go to movies, anymore or ever, but this must be improved upon.

As for the movie, I nearly came to tears more than once, as it brought back sense memory of my days there and my deep feelings about so much of that wild beautiful part of North America.

I am thankful for the day, December 3rd, to highlight disability, not just in North America, but around the world.

Every day is a day to talk about it, without becoming preachy. I feel this is something I have been called on to do, but it is a rather tricky balancing act.

I watched a Canadian national news broadcast and no mention at all was made nor any story aiming to shed light on some aspect of disability and what IDPD means to so many. I know an hour long news program can’t get to everything, but I think this should have been covered in some way.

I plan to do a lot more of this activism stuff in 2018 and beyond.

I am thankful for the final super moon of 2017 and the fact that, in spite of my worsening eyesight, I could still make it out on the horizon as we drove home.

I am all about horizons these days. Onward and upward, all while still making the effort to enjoy the final weeks of 2017 in the meantime.

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