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Sigh – And The Search Continues, #JusJoJan

I say I crave it, but it’s hard to obtain it.

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I can’t seem to
find the silence
in all that goes on.

the buzzing inside my own head. I think too much, about too many unanswerable questions.

I can’t stand the silence sometimes, seconds ticking by. I always have something going, playing, to occupy my thoughts, though they run on and on anyway. When I go to sleep I always have music on in the background or Netflix on my phone. I listen until sleep overtakes me.

I live with sound in the daylight hours too. My computer and my phone have voice software to read my emails and text messages. I have separate sounding notification beeps to alert me to what comes through my phone. I am constantly listening for those.

I listen to the birds and the sirens and other vehicles, just outside my window. I listen for my dog to inevitably bark at something and I listen for a sign that my cat is nearby. He doesn’t meow as much as he chirps you see.

I listen for a knock at my door because my doorbell hasn’t been functional in years.

I listen because I can barely see.

I wrote about
darkness
a few days ago, for Just Jot It January.

I feel blown away that someone’s worst fear would be to lose their sight, but I know the feeling. I also know that the thought of losing my ability to hear is simply unthinkable to me.

Just Jot It January, #JusJoJan

And the search for silent moments, for peace and quiet, all while thankful I have the ability to hear the sound if I choose, it continues.

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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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TToT: The Fog Can Be Pink Sometimes – Plucks and Strums, #Blues #10Thankful

Bomb cyclones, bombshell tell-all’s, and a night out at the symphony. Oh My!

And Dolores O’Riordan is dead.

It’s been a few weeks since I wrote one of these, not since the start of the new year and my niece’s birthday post.

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My family at Christmas.

It’s only halfway into the first month of this year and I am already exhausted.

Ten Things of Thankful

I am thankful for Dolores’s voice and lyrics and music.

I am deeply saddened, but I am thankful. I can’t believe she is gone. I’ve loved The Cranberries since I was eleven or twelve years old.

I’ve been on the verge of tears, giving in to it a few of those times, ever since I heard.

I don’t know all of what to say exactly, but I’m sure it will come to me.

I am thankful for the cello and a feature celloist.

Such a deep and rich sound, such a melancholy sound to the cello.

He was making his debut. He was amazing. He even strummed and plucked the strings of his cello along with the fast-paced classical stuff. What a solo with a terrific orchestra to accompany you.

I am thankful for an invite to my very first symphony.

I felt like the least sophisticated in that place and I was definitely the youngest.

Ah well…no accounting for my generation’s lack of taste. It was a first time for me, as classical isn’t necessarily my thing, but I am glad I went.

I am thankful I got to see the newest Star Wars with my brother and my sister.

We, the three of us, went between Christmas and New Year’s.

I was pressed to my seat the whole time, with every new twist and turn of the plot. I realize the giant debate for true fans of this franchise. For me, I like the story, as it stands. I like Adam Driver in his role as villain.

One really frigid December night, my older siblings and I ventured out to check it out, and I’m glad we did. I owe my brother, for his description skill, until I can make it so every theatre, even in my little city, has audio description to offer.

I am thankful I have a temporary replacement braille display.

I can read my own words and the words of other people. I can feel it, under my fingers. I am back, up and running, at full steam ahead.

I am thankful I have parents who are perfectly willing to take me to pick up a shipment at the border.

There was an issue with a temporary replacement for my braille reader and my options weren’t looking good for resolving it.

I had to drive a bit of a distance to sort it out and I am lucky I have family willing to make that drive, over an hour, so I could have the package in hand.

Now I can get back to editing and reading, for however long it takes for my own machine to be fixed.

I am thankful for my sister’s knowledge of hooking up a new router.

Things with the Internet have been lacking around here lately. I went, on a hunch over Christmas, and found and purchased a new router, thanks to my brother’s recommendation.

It came in the mail and I wouldn’t have known how to hook it up myself. Thankfully, my sister took time from her busy life and came and got it done for me.

I hope to get back to yoga over Skype again soon, without the connection failing continuously.

I am thankful for not a no.

Sometimes, the postponing of a for sure acceptance to a writing pitch is nice. Some people may not enjoy the extra time, not knowing, either way. I think I needed it, this week anyway.

I am thankful for an organization of interested people to stand up for ourselves throughout Canada and the US’s Foundations/Federations of the Blind.

Canadian Federation of the Blind

I have no need to put down all that the CNIB has done for me in my life, but for the first time, it feels nice to know I am given a say in making things better.

I end this week’s shorter than usual and (at times often depressing TToT) with an uplifting song from The Cranberries, one of their later albums. In it, she speaks of not analyzing every little thing and I often need that reminder.

I am thankful for this lingering piece of optimism, even in sadness.

Thank you, Dolores, from the bottom of my heart. RIP to the powerful voice and the woman who possessed it.

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Bumps Under Fingers #WorldBrailleDay #JusJoJan

January 4th is Louis Braille’s birthday, French inventor of the braille code.

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I think two of the best qualities any person can have are passion and compassion. I believe we’re all passionate about something.

Just Jot It January, #JusJoJan

I am passionate about braille literacy, as an extension of literacy as a whole.

Braille is hard to learn for many people who lose their vision later in life. I’ve known braille since I started to slowly learn it in my first five-seven years.

I am practically allergic to math and numbers. I am deeply passionate about words and braille.

In this world of technology, there is less and less push for blind people today to need to learn braille at all. That, to me, would be like never learning to read. Though many prefer to listen to the talking programs on computers and phones, I still wouldn’t trade that for the feeling of those bumps beneath my fingertips.

Thank you, Louis Braille, for what you did so long ago.

This first-Thursday-of-the-month JusJoJan post comes from
Rosemary Carlson, Writer
with her prompt word-of-the-day: passionate.

What is it you’re passionate about?

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A Reckoning: 2018 and the next 100 years #Disability #Equality

Today I am giving a friend a platform. Since he no longer has a blog, and I do, I am sharing this here.

***

Today, I’m so angry, I can’t concentrate on my labs. This morning when I checked my email here is what I read:

“With sight loss, everything you have ever known becomes unfamiliar. Your favourite T.V. chair, your reading nook, your computer desk: all become symbols of the quality of life you feel vision loss has robbed you of.

When you donate to CNIB, you help give that quality of life back. You help people learn new ways to enjoy their favourite movie. To read a book. To connect with loved ones.

Friend, your donation today can give families back their life.”

This has been eating away at me for a while now, but I am finally sick of it and I have to say something.

My friends, everything in the quote above is an absolute lie. If you were to dress up as a beggar on weekends and hit people up for money even though you have a good job, it would be no different from what is happening here.

“With sight loss, everything you have ever known becomes unfamiliar.”

Wrong! In fact, just the opposite is usually true. In my experience serving hundreds of people over the years, I have found that familiar things take on special significance and offer tremendous comfort to the newly blind.

This email says that newly blind people resent familiar things, that those become unfamiliar, mocking, threatening, icons of a supposed life we have lost. Get that monkey off your heart strings for a minute and try and think about this logically.

If you undergo a major life change, no matter what that is, wouldn’t you rather be in your familiar home surrounded by your possessions?

This email says that sight robs people of their life, but that isn’t true at all.

I have seen this countless times for myself. A newly blind person is not going to deny themselves their morning coffee just because they went blind. No, they are going to fiddle and futs and do what comes naturally until they get their coffee. They may not be confident of making coffee at a family member’s house, but they aren’t going to go without at home. In fact, something as simple as fixing coffee for a guest can be an outstanding source of pride and self-confidence for someone. There are always variations in situations, experiences, and coping mechanisms, but generally speaking, people take pride and comfort from being surrounded by familiar things.

Losing sight requires a person to develop new skills and use new tools, but it doesn’t rob most people of their life.

Only a very small percentage of us actually commit suicide because of losing sight. Many of us are turned away from daily activities because of the fears, low expectations and preferences of the sighted.

“don’t pour that coffee! It’s hot! you’ll burn yourself.”

We can damage some one’s fragile outlook by so denigrating something they take pride in. The newly blind person pours coffee for himself every day when the sighted person isn’t there, but it’s too much for the sighted person to watch. Thus, something the blind person worked hard to accomplish and may have been looking forward to sharing with the sighted person is diminished because of the low expectation of the sighted person.

Low expectations are the damaging factor here, not blindness.

Promotions like this one add insult to injury by demeaning the actual bereavement process people go through because of something like vision loss. As much as people learn, adapt, and go on to lead full lives, being blind in a world designed by and for the sighted is not without it’s sense of loss, of being singled out in a negative way.

We get through it, not because of money, but because of family and peer support, and the tenacity of the human spirit.

Playing on the natural grieving process of the newly blind to tragify us and scare you into giving money is an insult.

According to
Charity Intelligence
there are an estimated 500,000 blind Canadians, and CNIB provides approximately 560,000 hours of service delivery across canada each year. You can do the math in your head.

That’s just over one service hour per blind Canadian.

The annual budget of CNIB is just under $30,000,000 per year

– 54 cents of every dollar goes to programs.

The top ten earners at CNIB earn approximately $2,000,000 per year collectively, with the president earning $350,000 per year.

I believe this aspect of the pay structure is not reflective of the income experience of most blind Canadians, and I choose to be insulted that this one person makes so much money from the blind while the actual state of the blind continues to be abysmal and expectations continue to be oppressively low.

Can we do better? I think we can.

Is CNIB the answer? Maybe at one time they provided real value, but in my view that value is at an end.

How can the blind achieve dignity, respect, inclusion, equality, and increased quality of life if people who haven’t experienced blindness believe life ends with blindness?

If blindness is an irrevocable, life shattering tragedy, why will a human resources person want to hire someone who is blind?

How can we convince people to design all things inclusively, …that including every one in design benefits every one?

How can we convince people to rent us places to live, include us in social orders other than those specifically for the blind, or let us raise our own children in freedom?

If blind people are viewed as perpetually broken, how will we ever have our ideas, accomplishments, and opinions respected?

How can we lie to people and beg for money and expect to teach those same people that blindness is not hopeless, …that blind people are successful in their own right and deserve equal participation in society?

Please be angry. It is time. As long as we channel that anger properly, it can be a source of passion and determination blind people can use to build a future for ourselves where-in we are included as equals, not tagging along as third class citizens.

It would mean more to me as a blind person, if you would take the money you would have donated to CNIB, buy yourself some beer and pizza, and spend an hour or two a month coming to CFB meetings where we can work together to find sustainable ways of delivering needed services that don’t require us to lie, grovle, and debase ourselves to get the crumbs left over from sighted executives.

The blind community is not made up of deficient and damaged people. We have creators, innovators, educators, technology, legal, medical, and financial professionals, and thousands of hard working talented people who can be successful in their own right with real support, tools, reduced societal barriers, and sustainable services.

The blind community has society, culture, political agendas, philosophies, all intertwined with, having things in common with, connected to but not completely the same as those of the sighted or any other social political group.

Let’s build our own movement large enough to provide a valid alternative the state we have now that sells us at a premium, yet far short of our true abilities.

***

Here is my take!

I was born with vision loss (blind) and so was my brother. We grew up with the CNIB who sent us braille/audio books and where we learned how to properly use a white cane to get around safely.

The CNIB is the organization most people would name if asked, have heard of here in Canada, mostly because it has been around the longest. It is celebrating its 100th birthday next year, but things aren’t the same as they were back in 1918 and that can reflect how things are, here and now in this moment.

I don’t want to just be angry either, to demand without being willing to listen, but I do think there has been a reckoning.

We are all individuals of course and I don’t dare speak for all people with sight loss by any measure. This is only one woman’s opinion, mine, and my friend’s reaction to the status quo.

From what I’ve seen and experienced lately though, the disability community, as a whole, are declaring the intention for more equality and rights. I know some of it rests on our shoulders, and that’s why I believe it is time I used my abilities and talents to make life better for the next one hundred years and beyond.

I do wonder who wrote that bit for the newsletter though.

There are only a few weeks left in 2017, but this next year of 2018 is when I plan on becoming more active, both with the American Foundation and Canadian Federation of the Blind.

American Foundation for the Blind

We need to make more changes and to do that, we need to use our collective voice.

Canadian Federation of the Blind

Signed,

Chair and Secretary of the newly formed Ontario chapter of the CFB

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RESERVED! #TGIF #FTSF

There is a new coffee shop/bakery/cafe in my town. It reminds me of one I discovered and wanted to take home in my suitcase when I was in the Yukon six months back: Burnt Toast Cafe (Whitehorse) and Burnt Brick Cafe (Woodstock.

Both have similar names and beet salads. The similarities start and stop there.

Yes, while trying to envision the decor of this new cafe I have felt the brick wall next to my table. I called ahead and reserved a place. This means I was expected by the staff when I arrived, like I belonged there.

As I sit and eat my beet salad with goat cheese and candied pecans, I decide this will become my new out-of-the-home writing spot and I will be a local that will soon become a regular, maybe even with my own regularly reserved table where I will drink lattes and write all the things.

I would belong there.

When it comes to belonging, I know everyone says it, or at least feels it, at one time or another. We all struggle to belong somewhere. I am no exception.

I think of myself as a bit of a misfit and I have claimed the title with pride, though I live with feelings of not being enough or those of embarrassment a lot.

I want to blend in, to belong there, to belong anywhere. I want to be just another customer.

Customer. Decor. Furniture.

In the cafe today I was finding my way back to my table, after paying the bill, but before eating my dessert. I do hope to come often enough that soon enough I know my way around, but this was only my third time.

Friends either give me their arm, speak directions, or suddenly I am on my own, just me and my white cane.

It taps the metal of table legs and people stare.

Okay, so I don’t know if they do, or if they are nervous I might knock a table over or what, or maybe neither. Today, either way, one of the staff silently pushed me from behind in the name of guidance.

They didn’t do this violently or rudely, just in an attempt to show me how to find my table again.

And did I pull away, whirl around, and correct them, asking them not to put their hands on me without saying something?

Did I say politely that wasn’t the right way to go about that, to help the blind costumer who’d just spent $40 at their establishment?

No and no. I continued to use my cane to find my place and I sat down to enjoy my mini Oreo cheesecake.

I can’t just expect people to know the proper procedure, but it’s hard to explain, n the proper tone, in the moment.

I definitely don’t know how to blend in, to be just another customer, to feel like I fit in, when I feel like an object that must be moved. I say I feel like a misfit, or like a piece of miscellaneous furniture they move into its proper spot in their cafe so I am not in the way.

But do I even go with the rest of the place’s decor?

Hmm.

I should have explained why silently pushing me from behind was not the way to help someone, me, who can’t see. Somewhere inside I have the urge to whip around and tell them to take their hands off me. Or, that they should at least say something before doing it.

Anger and rudeness isn’t the answer. I want to soon be a regular there, to support the community, and to eat good food. Maybe I will even write great things there.

First, I must become comfortable there, with all them, and they must become comfortable with me too.

I want to belong somewhere, a community, even its businesses, such as interesting cafes like those you hear about in Paris, where people drink their lattes, observe people, and write.

Okay, so Woodstock is no Paris, but right now, I am the blind woman who clearly hasn’t figured out her way around quite yet. Friends don’t always know how to help and staff doesn’t yet know me either. If I wait, let time do its thing, I can hope to belong there, the woman who comes in with her laptop and her stick once a week, to her reserved people watching/writing/latte drinking table in the corner.

I can hope. I can dream.

I can do that. I can be. I can belong.

Finish the Sentence Friday:

Finding Ninee
and
Hillary Savoie
hosting.

I belong at this end-of-the-week blog exercise. I am back where I belong.

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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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