TToT: If You Don’t Control The Narrative, The Narrative Controls You – The Summer Day, #10Thankful

Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean-
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don’t know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn’t everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?

—Mary Oliver “The Summer Day”

Ten Things of Thankful

I am thankful for new pillows.

I’ve been using flat, old, barely there pillows for a long while. It was time for something new.

I decided to go with two different levels of firmness and they look the same. This way, I can switch it up and I learned which one I preferred.

Never underestimate the luxury of a decent pillow.

I am thankful for the laughs we have at my writing group.

We do write, but it was another fun time with the gang. I don’t know if a story is destined to come from this one, not from me this time anyway, but other stories were shared and good times all around.

I am thankful for a surprise gift from my neighbour.

I heard a ticking sound as I sat out on my neighbour’s deck last week. I asked her if it was a clock and she showed me her little sun dial.

Well, she got me one with a sunflower on it. If you put it in the light it moves back and forth. She wanted to congratulate me on getting my writing accepted. It’s nice when someone does something like that, totally unexpectedly.

I am thankful the deal with my essay for Catapult was made official, with contracts and a likely date of publication and everything.

This made my day mid week. The editor wasn’t certain when it would get published, until she suddenly emailed me and said she’d had an opening. I try to stay patient these next four weeks or so and keep in mind that things could change, but this will be exciting when it does happen.

She worked, as my editor, and the final piece that came back had a few changes to the final product, but kept my overall message and voice.

And now there comes my least favourite part: the contracts and paperwork.

I am not complaining, really, but I am no good at all that. Has to be done though. Luckily I have a sister who is better at such things. I will definitely be including her here on the TToT when she helps me with all that here soon.

I am thankful I heard back from Hippocampus and may be getting a short piece published with them soon.

They are on my list of spots where I want to see my writing placed. This one is a small foot in the door, but it’s a step in the right direction at least.

I am thankful for a new yoga teacher who wants to learn from me as much as I learn from her.

She says she is very interested in learning, from me, about the best ways to teach visually impaired and blind students who want to take yoga like me.

There are so many ways to do yoga. I never could have imagined. Of course, like anything, you must be cautious that you don’t push things and cause more pain than that which you were working to help relieve in the first place.

I am highly conscious of this fact. I am taking it slow, but my back has a metal rod in it and might not be able to bend the same way as other people. I don’t want to be careless and make things worse, obviously, but this teacher seems open to suggestion and to not pushing me too hard.

It’s just a different situation for her, to try her best to describe the positions for my arms, legs, and whatever else, by being as specific as possible. Watching her simply isn’t an option for me. This is new to her just as to me.

I am thankful for more and more representation of visually impaired characters on television.

I caught the final episode of the second season of a show, filmed here, near to me, in Toronto:
Private Eyes

What first drew me to checking it out was the fact that it was filmed in such a familiar place and then there was the reappearance of my favourite 90s television star: Jason Priestley

Then I discovered that Priestley’s teenage daughter on the show is visually impaired. She reads braille books, uses a computer that talks, and a white cane to get around. I try to watch her character, to follow how the creators write her visual impairment into the show. I am so glad there was a second season and that she was featured so often.

But I will be keeping a close “EYE” on how she is portrayed. It’s important blind people are shown in reality, even on screen and in fictional environments, because people have enough stereotypes and don’t need any more.

I will miss the show over the next year or so and cross my fingers a third season happens.

I am thankful to have family who can replace a roof now and again.

The rain has been finding ways in. It was in pretty good shape when I moved in, ten or eleven years ago. Now, however, the need is growing.

First step, install new water heater. Next my uncle and cousin will replace it, both house and garage. Apparently the second one badly needs it. Funny, I have no idea what everyone’s getting so bothered by. Though, I won’t even go inside that garage at all. Not my scene.

My neighbour asked if she could paint something on the side she has to look at from her deck, to help cover up the ugly. I had no problem with that.

Can you guess what this is?

I am thankful for my parents and neighbour and their kind willingness to help me out with my dog who likes to bark.

He is also terribly attached to me.

My parents watch him when my head is particularly bad. They wouldn’t have to do this, to put up with it, but I hear he’s rather calm and good when he’s with them.

Also, my neighbour opens my door and brings him out when I am away, if she is at home, and ties him up on her deck. He usually is happy to sit quietly while she goes about her day.

Although, this last time, something odd occurred. She just happened to stop by (to give me her gift) right as I was leaving. So we thought she could get Dobby on his leash and just take him with her. Big mistake.

I followed them out the door and left a minute later. As I sat in the car, as we pulled out of the driveway, I could hear him still barking.

It turns out that when he sees me and she physically takes him from me (in his mind), he won’t settle down for her. She soon had to put him back inside my house and then come and get him like she usually does. And that time he settled down on her deck once more and laid quiet.

Huh … hmm. What a dog.

I am thankful for songs like this one, songs that have helped me through difficult times.

“One thing: I don’t know why…it doesn’t even matter how hard you try. Keep that in mind, I designed this rhyme, to explain in due time.”

In The End – Linkin Park

“Time is a valuable thing. Watch it fly by as the pendulum swings. Watch it count down to the end of the day; The clock ticks life away.”

Back around the year 2000 I was in high school and struggling just to keep up. Finally, I couldn’t do it anymore. Daily headaches were making concentrating to do well in my classes supremely hard and nearing impossible. In the end, I took fewer and fewer classes and finally had to quit all together, without graduating. This is not an easy thing for me to speak about, but it’s nagged at me for years ever since and I do plan to finish sometime in my current decade of my thirties.

These lyrics are about getting so far (years and years of school, including missing over 100 days in seventh grade for dialysis and a kidney transplant, almost being held back), but then I ended up catching up in the eighth and graduating, starting high school with my friends and peers, before falling behind all over again. It was a year or so later that things grew worse once more.

“I tried so hard, and got so far. But in the end, it doesn’t even matter. I had to fall, to lose it all. But in the end, it doesn’t even matter.

It felt for years like no matter how hard I tried, it didn’t matter. I was still behind and stuck and lost. This song brings a tear to my eye, even today, even as I am working to jump start my life and writing and things.

RIP Chester Bennington

2015 October Platform Challenge: Day Nine, #platchal

I missed a few days there, or a little more than that, as I already have both a Facebook page and Twitter, but I’m back for more of a refresher.

Create An Editorial Calendar

I outline what I want for my blog, in my very first post,

Bucket List,

but I had no clue how it would really be to have a blog, day in and day out. I couldn’t have known then.

I do like to keep a rough schedule, more in my head, but the categories I select before each post help me keep things straight.

I stayed up, into the night, before I actually launched this blog, coming up to my thirtieth birthday in 2014 and mapped out which days I wanted to post.

I would let alliteration lead me.

Memoir Monday: My Fear of Going Blind

Fiction Friday: An Old Woman’s Regret

Spotlight On Saltz

From there, as the months of blogging went on, more weekday categories were added.

Touching Landscapes: Feel the Vibrations

This was my regular post, my growing favourite, Travel Tuesday as I called it. This was how I eventually decided to branch out further, creating

The Insightful Wanderer

and my blogging schedule continuing to change.

Slowly, my favourite weekly posts have become

In The News and On My Mind: #1000Speak Edition

because these allow me to focus in on what may be going on, in the moment.

It is a difficult question, how often to post on a blog. I don’t like to box myself in by telling myself I have to post, but I understand consistency and regularity.

I have not run out of things to say, like I’d feared in the beginning, and only really the opposite is true.

Every day is too much, but I hate to go more than a few days and not publishing something.

My Mondays have become a series on disability, for which I have a vested interest.

When It Rains It Pours – The Redefining Disability Awareness Challenge

I do the well known TBT thing.

Throwback Thursday: World Kidney Day

My weekends were where I featured interviews. I wanted to give the spotlight to other people who write, blog, and make a difference in some way.

She’s the Bomb

Eventually, my weekends would evolve into what they currently consist of: Stream of Consciousness Saturday and 10 Things of Thankful on Sunday.

SoCS: Engraved

and

TToT: Extra Thankful For These Last Eighteen Years

So this is just a selection of my posts, an example of the kind of blogging schedule I keep to. This won’t be the way others can or choose to do it. I don’t know. Is this too much? I know it’s enough and I am happy because my blog, its content, style, and all other elements, including number of weekly posts is me…just me.

When an idea hits me I make a note of it, trying to decide when and if it might fit. I plan things, sometimes weeks or even months ahead of where I am. It works for me. Writing is a lot of hard work, more than people realize, but the weekly practice is the best thing for me. I like to have a plan wherever possible, but yet I also like to go with the flow and let things happen naturally.

A blogging calendar, like a yearly one, has certain markers of importance and note. What might take place in between is anyone’s guess.

I am enjoying this challenge for the month of October. It has given me more to think about. It is now a part of my month.

Follow the guy who runs the challenge.

@RobertLeeBrewer

Dates to make note of, things to come on my blog, of course always subject to change:

**More posts for Redefining Disability, including my thoughts on a woman who made the news for making herself go blind.

**An “In The News and On My Mind” post about voting. Will I or won’t I?

**A post about love (tentatively titled Somebody That I Used to Know), a list of songs to help with heartbreak and how to get past lost love.

**Halloween themed posts about spiders, werewolves, and ghosts.

**My story about a giant book fair, by the lake, in Toronto.

That should get us through October anyway.

Ordinary Miracles: Part One

It’s not what’s often seen in the movies or on television, the woman screaming bloody murder and, “I WANT DRUGS!!!”, as doctors and nurses all around her yell: “PUSH!” – at least, not in my sister’s case. It wasn’t exactly what I’d pictured. It happened so fast. It felt like a blur, but a vivid and memorable one. It was special and it all seemed to happen as it should.

She was quick about it – my sister, true to form, had the baby out before any of us could blink. So quick in fact, it was like we were all almost late to the delivery, including her. I knew it would be a boy, just as I knew it would be a girl for my brother and his wife before. Everyone always says they just had a feeling and I did, I just knew it. One moment he wasn’t there, just this concept of what he might be in our minds, and the next he was out and a part of our family.

I think, as close as we are, she mainly agreed to have me in the room because she could be assured I wouldn’t see anything. One perk of having a sister, blind since birth, was that having me there wouldn’t make her feel any more embarrassed or exposed. We were expecting a labor lasting hours. I was prepared for a marathon. Instead, it was a sprint for my older sister. It was a relatively easy labor, as labours go.

That August day, my sister and her husband awoke in the early morning, to the alarm clock: him to get ready for work and her to labor pains. She assured him he could and should go to work because maybe it was only false contractions. The first stage of labor could take hours that she preferred be spent at home. However, within the hour the pains were so intense, she called and ordered him back immediately. I was awakened at 6:00 a.m. by the startling sound of the phone. She was a few weeks early, ahead of her due date, but I wasn’t totally surprised.

I was honoured to be asked to be a witness, one of few, to the birth of this child who’d been so desperately wanted, yet at such a high price and with so many intense struggles and plenty of tears. The miracle of birth is unmatched in its beauty and magic, yet it can seem like the most natural and ordinary of life events for people, all around the world, every single day. This isn’t the case for everyone. It hadn’t been so easy for my sister and her husband.

I was there before the mother-to-be. As I sat and waited for them to arrive, flashes of my sister unable to make it to the hospital and giving birth in their car, at the side of the road flitted through my anxious mind. Leave it to my chronically late sister to be late for this. As I heard her being wheeled passed out in the hallway, my fears were put to rest. I hadn’t really been waiting long, but it sure felt like it.

As I entered the Labor and Delivery Room, the nervous father-to-be had only just spilled his bottle of Diet Coke all over the floor. In his excited frenzy, the cola he’d brought in preparation for any presumed hours of labor and a possible diabetic low blood sugar had exploded, at a most inopportune moment. He was scrambling to clean up the sticky mess while I held tight to my sister’s hand in his place, none of us realizing how soon it would be all over. She squeezed as she fought through the contractions, vowing to refrain from any pain control or epidural. I wondered how her pain threshold would hold up against hours of continuous, growing, and building agony, but within a very short half hour or so, he was out.

All the chaos and the things that could and did go wrong: doctors showing up late (not to mention the parents) and with Coke spills and alike, I barely got to take it all in. I could only imagine how the experience felt for the two of them. She’d pushed through her contractions, squeezed my hand, and made very little sound, nothing like I’d learned for years in the media. Suddenly, after only three hours from when it all began, there he was.

As easy as this all sounds, it was really only fair to them, due to how difficult it was to actually arrive at this point. The struggle and the fortitude of the two of them, in dealing with everything they had to bring him into the world and into our lives is something truly remarkable. I witnessed it all from my position as sister and housemate for a good chunk of the time. They had been trying for a baby since becoming man and wife, and it had been the longest three years of their lives.

Infertility is becoming more and more of an open subject in our society today, with friends and family, in the community, and through media coverage. It is talked about, not just behind closed doors, unlike years ago. This allows for much more discussion and the reluctance to speak about the many struggles couples go through becomes a thing of the past.

Having a baby – it all seemed so normal when teachers spoke about it in sex ed. It was what was supposed to happen, right? Well, when it doesn’t happen like that, women are faced with the fears and the questions that medical science must try to address and alleviate, such as:

What’s wrong with me?

Why can’t I have a baby like other women?

It feels like a crippling burden of failure, that I am not a real woman if I can’t do what a woman is supposed to do, was made to be able to do. To be a parent is a deeply entrenched and unbelievably strong instinct, from what I’ve seen and felt up close. I felt it too, but can’t yet see how it fits into my own life. Being blind presents a whole new set of concerns and fears. Sometimes the answers aren’t as simple as whether or not to have a child. I struggle with this in my own mind, yet still I am left able to relate to my sister and her husband, and their own situation, in my own way.

I wanted, what my sister desperately wanted, for them and their need to start and grow a family for themselves. The pressure of that can be a very great weight. I saw it and felt it in the words they spoke and how they spoke them. I felt it in the air after their wedding and over time, as I shared a house with them for the first few years of their marriage. I saw it all up close and I yearned for the success of this most important of ventures, the most important they would ever face together. Young newly weds aren’t usually tested so early on as to the ultimate strength of their relationship.

Soon came the pressures of doctors visits and monitoring cycles of ovulation, or lack thereof. It was a lot of information, trying to learn all about infertility and its causes; how sometimes there is an explanation and other times it is simply known as unexplained infertility. It really can’t be seen as one person’s problem or fault. I see so easily how these fears and guilty feelings can cause a rift between an otherwise happy couple, so eager to experience parenthood and to make a child, a part of both of them. It’s sad and, like financial problems in a marriage, the intrinsic need to have a child can be the one thing to drive a wedge in a loving relationship. this wasn’t going to happen to my sister. We as a family weren’t going to let them be disappointed and left empty-handed. I wanted this as much or more than I’d ever wanted anything for myself.

It is cruel how much it costs to get what comes so naturally, free and clear to some people. It feels like paying for oxygen – getting pregnant shouldn’t need a category in the budget, where a couple who works hard and only wants a family has to scramble to come up with the money to pay for medications and the cost of infertility treatments. Not everyone has the resources and the giving nature and spirit as we have in our family, as they had in our parents. Our parents are indescribably generous and kind. They’ve worked hard for many years to give their children the things we’ve wanted, the things they’ve wanted for us since we were born. They made it all possible.

However, along with these gifts there comes the inevitable landslide of guilt and worry. As the cost began adding up, thousands and thousands of dollars, so did the feeling of:

“What if it doesn’t work and all that money was wasted, with nothing to show for it?”

As the weeks and months of medications and treatments passed, the pressure built. On one such occasion, I recall hearing my sister shaking uncontrollably with sobs of despair. Such a thing rocks one to the core and I hurt beyond explanation for her that night. She feared failed rounds of IUI (Intrauterine Insemination) – a procedure where sperm is injected directly into the uterus. Had that all been for nothing?

They were lucky to find a very supportive and capable fertility clinic. When they were there, they felt heard, understood, and taken care of. All the trips for blood tests and ultrasounds and the disappointing phone calls, with no baby – it was all starting to add up. Adoption, child fostering, or a life with no children flashed before their eyes I’m sure. Was all of this worth it?

When the IUI attempts didn’t work, the next logical step was to try IVF (In Vitro Fertilization) – where the sperm is injected directly into the egg, which is then inserted back into the uterus. She went through all the necessary steps, the needles she gave herself, often helped along by her husband, and the hormones. All this lead up to a summer of hope and disappointment and pain. We all learned of the existence of “Ovarian Hyper Stimulation Syndrome” – a condition where the body produces, with help from all those medications, many eggs for possible fertilization. In my sister’s case, more than thirty were produced to another woman’s one or two – with this, the ovaries become over-stimulated, resulting in extreme illness. She appeared six months pregnant, almost at once, when not even confirmed to be so; all that fluid, released by the ovaries, began leaking into her abdomen. This is, however, a positive sign of a successful pregnancy.

That same summer, I was told by a friend of her first pregnancy and I was left with so much joy in my heart for her, yet so much anger that so many women were seemingly able to become pregnant so easily. Why then was it so hard for others, just as deserving of a baby? Life seemed horribly unfair at that juncture.

Then, a glimmer of hope; a call from the clinic with the blood results showed good numbers, indicating optimal chances for a positive pregnancy test. My sister appeared to have what she wanted and what we all wanted for her. It was finally happening – it was necessary, at such an early stage, to monitor the numbers and make sure they continued to rise. Every few days she anxiously call and things looked good; yet, things aren’t always meant to be.

When a pregnancy isn’t meant to be, it’s probably for the best, but which makes it a tragic loss nonetheless. I sat there, while our inherently positive and optimistic mother comforted my sister through her tears. I was off to see a part of the world I had always longed to see, a trip of a lifetime with an old friend, while my sister and her husband were left behind to deal with the reality of their situation. They’d had a baby for a week and lost it, before most would even know they were pregnant. I left the country wishing them all the love in the world to recover, move forward, and to begin to look ahead to brighter days.

Diagnosis – Piece of Cake!

It’s a little over a year now since the launch of:

The Redefining Disability Awareness Challenge,

on Rose’s blog.

I would find it not long after and make the decision to join in here.

One year later and another summer has arrived. I have been skipping some Memoir Monday posts, a summer break of sorts, but I am nowhere near out of things to say on the subject of disability awareness.

***

Q: At what age were you or your loved ones diagnosed?

A: This question, I thought, would be better answered by those who remember what it was like at the time. I was only an infant after all.

🙂

I asked my parents to relay the events of those early days. This is what they said:

Diagnosis for you was kind of gradual. First, I thought things weren’t quite right when you were between 2-3 months because you didn’t follow with your eyes like most kids. The family doctor didn’t notice anything until I pointed it out at the end of your 3 month checkup.

It took a week to be sent to an eye doctor and he realized it was serious but didn’t diagnose anything and sent us to a Pediatric Ophthalmologist.

Dr Orton said that he thought it was Leber’s and said that you were visually impaired but he never said the word blind. We waited until you were 8 months old before they put you under anesthetic and gave us a positive diagnosis.

It was always upsetting when we were dealing with doctors, but as a young baby there were few differences.

CPRI

was involved because of a suggestion from other parents of a blind child by the time you were 8 months old and therefore your development was never really delayed. They were very helpful with lots of suggestions.

So first we just didn’t really know a lot of details and were a little in the dark. It was kind of a wait and see.

With your brother, we asked Dr. Orton about him on one of your visits and he wouldn’t even look into his eyes (2 weeks of age). He said that he had to be older before he could tell us. We knew he was blind by our own experience by the time he was 6-8 weeks old. I don’t know if it is better to learn gradually or be told everything up front.

***

These things couldn’t have been easy on them, but the life I’ve had since being diagnosed is proof of how well they adjusted and thrived as our parents. I owe them everything.

This is where I say that, up until now, I have used the RDAC to write about blindness as a disability I have lived with, through the good and the bad times, but there would be more diagnosed, and this year marks twenty years since the second round of diagnosis would begin.

Going forward, I will be starting a new topic on this blog: Piece of Cake.

This will focus on the kidney disease, that would be added to my diagnosed syndrome.

I have wanted to write a memoir for many years about this time. I had the name picked out from that first day I sat at my brailler and started writing.

In the months and years to come, I will be looking back on these turbulent events, through the power of words.

Next week:

How has your life changed as a result of that diagnosis?

Redefining Disability – Facebook

Come check things out over there.

Reviewing Blindness

July is moving along.

Okay, well I could always complain, but I won’t. Not now. Maybe later.

🙂

Last week, I wrote about how:

Men Are From Mars, Women From Venus, and Then There’s Jupiter.

This week is a free post week.

I have freely chosen to go back seven or so years, to write a movie review of sorts.

***

I was randomly watching television the other day and suddenly I got this yucky, icky feeling.

It’s a feeling I get anytime I happen to think about one particular movie that I saw when it came out in theatres back in 2008.

It was only a commercial, announcing the airing of a film on television, coming up this weekend.

I had never heard of the novel: “Blindness”, before seeing the film.

Sure, the title intrigued me and my brothers. We chose to see it, but I had no idea, going in, what to expect.

What would happen if an entire city lost their sight?

This film, developed from the Jose Saramago novel of the same name, is a social commentary of sorts. It examines a very good question, but i did not like the results of this particular examination.

I did not like the answer to the question and I was not alone.

NFB Protests Opening of Blindness in 37 States

Several US organizations and groups protested the film on its release. They said it painted blind people in the most horrible of lights. I agree, but I know, deep down, that it is only a story.

It is a question that I have wondered myself. I know just how terrified most people become at the very thought of going blind. It is society’s worst fear, but that’s because it is so very possible. Losts of people lose their sight, mostly due to old age, but not always. What if it were to happen, as some sort of epidemic that began to spread, mysteriously?

The city in this film is not named. Most of the characters aren’t named either. It’s the boy or the woman with the dark glasses or the King of Ward 3, receptionist or the accountant or the man with the eye patch. We don’t learn about these characters as people, who they are or who they were, before they lost the most important of all the senses, the one most people could never ever imagine living without.

It has been several years since I saw it, so this review may be vague in some spots, but others are burned into my brain.

There is loyalty and compassion, but there is mostly chaos, disorder, and the sudden White Blindness seems to be the reason for a total breakdown of law and order, of civilization.

The doctor (Mark) he treats a patient who has suddenly and mysteriously lost his sight. Several car accidents are going on around this unnamed city, because the drivers simply lose their sight and crash into each other.

I remember the entire film sounding quite muted. There is a lot of silence, even behind the traffic noises, the dialogue, and eventually there is yelling and danger.

The doctor’s wife (Julianne) is the only one who is spared, for whatever reason, but pretends just so she can accompany her husband, so they will not be separated. This puts her in danger, but she shows her courage.

The newly blind citizens are locked up in an insane asylum, to keep them safe, but soon they are trapped and cut off from the rest of the world, from any possible help.

This is where the blind community has protested. The situation declines rapidly into madness. Sanitation becomes a problem. There is nobody cleaning the facility and soon there is filth and faeces in the halls. Food becomes scarce. People turn on each other and survival is their only goal. Mob rules is the way of it. Those in favour would claim that this is more a display of how humanity would break down, not blind people specifically, that this is no real reflection of blind people.

The Federation of the Blind would say it still paints blind people as unclean, violent, crazy and dangerous.

I know, logically, it is just a story. I knew that as I sat there, in the theatre, watching the events of Blindness play out on the screen in front of me.

I still reacted the way I reacted. It was a reaction I could not help, that I did not expect.

Are Protesters of Blindness Missing the Point?

As conditions decline, a gang of thugs holds food hostage from the starving prisoners, and then there was the rape scene. I was horrified by what I saw, a mass rape scene, which made me want to get up and leave the theatre then and there.

That, paired with the fact that the people were locked up in an asylum, both made me angry and wishing I had never went to see Blindness.

I guess the idea that any government would lock up its citizens, after they started to go blind, this is more drastic, but it made me picture segregation. I don’t even like the schools for the blind that do exist, but this was a fictional horror that I knew wasn’t real, and still I felt sick.

I will never be able to truly enjoy either Julianne Moore or Mark Ruffalo again, in any other role, after seeing them portray a couple who must survive and take care of each other and others in such a scenario.

I don’t know if I can or will ever read this novel. I don’t know, but maybe seeing it as a movie first is the reason, but watching it disturbed me so much, deep down. I don’t know, but books are often more detailed than movies.

Of course, the author of this book had feelings when he heard how blind people were reacting. He used blindness allegorically, to make his point about the humanity (or lack thereof) and breakdown of our society.

Everyone had their own right to feel the way they felt: whether it was the writer of the novel or the people with the disability he wrote about.

Author decries Blindness protests as misguided – Arts … – CBC

My reaction had nothing to do with the quality of the book, as I have never read it, but my physical reaction to seeing the story come to life on screen.

As for Blindness, the novel: I don’t think I will get to it. So many books; so little time.

🙂

I don’t think I could stomach it, but, then again, never say never.

But perhaps I’m missing out on something brilliant, a marvellous piece of fiction.

He was described as a pessimist.

No way!

https://en.wikipedia.org/wiki/Blindness_(film)

So, upon entering the theatre, when they took our tickets…

Movie employee: Enjoy Blindness.

My blind brother and myself: We always do.

***

At what age were you or your loved ones diagnosed?

That is the question I will be answering, one week from now, for

The Redefining Disability Awareness Challenge

And…

Check out the

Redefining Disability Awareness Project On Facebook,

for all this and more.

Gardens Of Sunset

We stand on the grass (my mother, father, and my uncle who has come so far to say his goodbyes). I kneel down to trace the carved flowers, names, and dates on the name plates of their urns with my fingertips. They are finally side-by-side, where they belong I suppose, resting together in silent stillness.

For twenty-one long years she spoke lovingly and longingly to him, each evening before going to sleep. She kept his urn and a photo of him on her dresser. Some find this an odd thing to do, but everybody does grieve and deal with loss in their own special ways.

I would talk to him, up there in her room sometimes, but my memories of him were beginning to fade – fuzzy around the edges of my mind’s procuring of my opa.

The Beginning and the End

For sure twenty-one years was an awful long time for my oma to be without him. She brought it up often, the hole left in her life since losing him to a heart attack so suddenly.

They had been married for nearly fifty years and had come across an ocean together, starting over here in Canada after World War II and the horrors they’d certainly both seen.

I loved to visit her and we tried to help her feel a little less lonely for him, by visiting as often as possible.

She could always be found down in the basement, with the television cranked as she became harder and harder of hearing.

Or else I would open her porch door and then the one into the house, calling for her, and into the kitchen she would come in her slippers. I can still recollect the clip clip noise they made as she walked across the linoleum.

She always had a bowl of chocolate bars and a fruit cellar, not full of just fruit alone, but many cans of pop.

She told her grandchildren the doctor assured her chocolate was good for us. What grandchild doesn’t love to hear that?

Okay okay, so she fed us healthy things too, on occasion: apple slices with the peelings removed. Of course, because they weren’t good for us. Perhaps she thought, even if you washed the apples first, that dirt might still be clinging to the outside.

Her special pancakes, with the correct number of eggs, and with plenty of Ketchup of course.

I miss her little house, which I live close by and feel so far removed from now.

I miss the way she used to say my name. Her accent affected every word she said, but it gave her character and made me feel like she was from a different world entirely, one I would never truly know.

I miss her laugh.

I miss our big birthday celebrations. Our birthdays were only days apart.

Of course she could be a lot to handle sometimes, for a lot of people.

I know now that I got the best of her, something others experienced much less of.

She could be damn stubborn when she wanted to. She would plant her feet firmly on her little piece of solid ground and Heaven help you if you tried to make her move.

She couldn’t remember my boyfriend’s name, so:

“How’s your boyfriend? Where’s your boyfriend today?”

That was the best he or I could hope for, but I could tell she was happy to know I might be taken care of and loved, after she was gone and couldn’t be the one to watch over me.

She was bad with names by this point, often saying one son’s name when she meant another, or simply running through them all, hoping to get the correct one eventually.

I could go on forever with these memories, but everything does come to an end.

She fell and broke her hip, remaining in hospital and never recovering. She was mostly bright and upbeat when I’d visit her there, until the end that is.

The last time I visited her I held her hand and spoke gently to her, hoping against hope she knew I was there, as she clutched her afghan, but the awful little whimpers she made were telling enough. I knew the sound when I heard it, the noise one makes when they are in terrible pain.

I knew enough about pain to recognize the end when I heard it, as hard as that was. I desperately hoped they were keeping her comfortable and that she would soon slip away in peace, like we’d always hoped she might do in her own bed at home.

“No nursing homes,” she’d say. Such tough decisions my father and uncle had to make.

I knew that I’d never hear her say my name again. Would I ever be okay again, I wondered, if she was not there to love me like she always had?

After we lost her, I sat in the room and touched her still hand and her cheek. In that moment, she felt less like the woman I had hugged goodbye so many times at the door and more like the dolls she kept in her spare room or the China dolls she’d given to me when I was ill.

I felt her rib cage and realized, finally, how skinny she had gotten from refusing to eat in those final days and weeks.

I was nervous to speak at her funeral. I knew mine would be a much different tribute, in words and tone, than my cousin who also spoke. Memories are simply an individual person’s perspectives and interpretations of what once was. I hoped my eulogy reflected that awareness.

I was nervous to have her only daughter there to hear me speak. I was happy beyond words to have her with us, but hoping with all my might that something I said would not trigger a painful memory.

These things I could not control, like the loss of her. Oma. Anna. You are missed.

February 7, 1921 to June 15, 2010.

Discrimination Happens

First week of February: my birthday month and the month I transformed my writing into something more.

Around here, we are receiving a lot of snow right now, last night especially, and this reminded me of those days when a snow day off of school was a big deal.

Ah, the good old days.

🙂

It’s also Groundhog Day today and I think they are at odds with one another and I am too. Can’t seem to agree on how much more snow is to come.

It’s not like I don’t have a sense of humour, but I don’t really pay much attention to the idea, joke or not, of a rodent telling us when winter will officially end.

I suppose they may know something I don’t, being out there in that environment on a daily basis, but I ride out the cold and the snow because I live in Canada and I’ve accepted it. I even like it.

Last week I took a break from my usual Memoir Monday posts. My last one, from two weeks ago now was:

A Day For Dreams.

Now, here is today’s question.

***

Q: Have you experienced discrimination because of disabilities?

A: A lot of times, as I have discussed in previous posts, the discrimination I feel isn’t something outright. It is more of a subtle undercurrent to be felt.

It isn’t appropriate to be directly discriminatory and such behaviours would be generally frowned upon by the rest of society.

However, I have come up against some instances and some people, for whatever reason, that stood out to me, to this day.

First, there were some of the battles and the people my parents went up against to get me into school as a child. This, they met with an expected amount of resistance, but I was too young and unable to witness this, or at least I remember none of it.

Second, there was the time my grandmother took my brother and me out for lunch in our town.

I had a guide dog then. We walked all the way through a restaurant full of customers, sitting at their tables, just to be told that the dog couldn’t be there.

This was a Chinese buffet restaurant. Perhaps there were cultural differences and misunderstandings. I understand. I can be sympathetic.

However, it felt like a humiliation at the time, being told, very quietly I must add, that we could stay but the dog had to go outside.

I did not fight this and neither did my grandmother. She wasn’t really much of a fighter. We ended up all leaving, rather than simply putting my service animal out in the car.

Third, well there was the time a ride operator at an amusement park didn’t want to let my brother and I go on his ride. It wasn’t even one that went up-side-down. I think we got on, but it was another awkward situation.

Fourth, like the Chinese restaurant, there was one more occasion where a pizza parlour did not want my guide dog in and wanted us to tie her up outside.

This time we went home and contacted the head office of the establishment and demanded an apology.

I know not everyone will understand the purpose and the distinction between pet and service animal. There are cultural differences, like the many doctors of Asian or Middle Eastern descent who have walked into my exam room, only to notice the dog there and to be noticeably uncomfortable. This is something I’ve encountered, but they still examined me. I promised my dog wouldn’t attack them and they did their jobs and checked me over and that was that.

🙂

Fifth, there was the recent incident where I wanted to try walking around the outside of the CN Tower in Toronto, only to read on their website that people with visual impairments were on the list of those they did not permit.

This time I wasn’t about to let go and I kept on them, going through the young female operator, her manager, and finally the Operations Manager to plead my case.

I let them know that I could handle it and that I wasn’t about to let it go. I stayed firm and I got through to them. It ended up being one of the best experiences of my life.

And finally, I am working on writing a blog post about the recent experiences we’ve had with descriptive audio services at a local movie theatre. I don’t like to make a scene or a stink and cry “Discrimination” without cause and before I look properly into a situation.

I am learning, as I get older, that I have to stand up for myself and make noise if I want to be heard. If I feel discriminated against, in any way big or small, I need to say something instead of just staying my usual timid, quiet, shy self.

I know most people are good and kind and don’t mean to be discriminatory, but it happens and I want to be prepared and confident enough in myself, for any occasions when it may happen yet again.

These are only a few of the examples I can relay, that I have experienced, as someone born with a visual disability.

***

Next week, for the

Redefining Disability Awareness Challenge,

I answer the opposite of today’s question:

Have you experienced preferential treatment because of disabilities?

A Day For Dreams

“Let us not wallow in the valley of despair, I say to you today, my friends.”
—Martin Luther King Jr.

On this week’s edition of

The Redefining Disability Awareness Challenge,

there are several things criss-crossing here.

Today’s Memoir Monday is not only about my memories and about redefining disability, but it’s known as Blue Monday, I am still spreading my message for #1000Speak, and in the US it is known as Martin Luther King Jr. Day.

so how are all these things connected?

So how can I speak about all of these? Well, I’m sure going to try.

🙂

Last week I answered a question for RDAC about the biggest challenge I face with my disability,

Making The World Accessible: The 75% PRoblem.

This week is asking about my family, but from my perspective on things and I feel the answer lies connected with my post from last week.

***

Q: What do you think are the biggest challenges that your family members face in regard to disability?

A: I think the biggest challenge, for my loved ones, is not the disability, but the rest of the world…

(Stop me if I’m way off here guys.)

:)))

I am lucky to have them and I know it. I was not neglected or mistreated. I was not loathed or resented or given up on.

So so far from all of those things.

My family love me for me, exactly who I am. It’s the rest of it that worries them.

Martin Luther King Day is mostly celebrated in the country of his birth and of which he lived. Although it is celebrated in the US mostly, I did learn that Toronto is one of the other places where today is a celebrated and a recognized special occasion.

I choose to use “I Have A Dream” to illustrate my point and to answer today’s question.

Martin Luther King spoke, in his famous “I Have a Dream” speech about segregation and about his dream of a desegregated population.

I know it can not be compared, not really, but I can’t help feeling a deep connection with this day, with this speech, and with the man who gave it.

I am white and I do not know what it’s like to be treated differently because of the colour of my skin, but I do know what it’s like to feel closed off from the rest of the world. I know how it feels to be segregated, in more ways than one, from the world around me.

I listen to King’s powerful words and I feel a tingly sensation to my core. I have dreams too.

So do my loved ones.

From the first moment it hit my parents that I was going to face some difficult times growing up, due to the fact that I could not see like everyone else, they had a dream.

They had a dream that my brother and I would be able to grow up and become adults, in a world where differences weren’t emphasized for their separateness and frowned upon, but instead celebrated and highlighted for the uniqueness introduced to the world.

They had a dream that I would find friends, get an education, and find my place in the world. That I would find employment, acceptance, and love and happiness, all the same things any parent would want for their child.

***

“That all men, yes, black men as well as white men, would be guaranteed the “unalienable Rights” of “Life, Liberty and the pursuit of Happiness.”

***

King was speaking about race, but not only that:

“from every village and every hamlet, from every state and every city,” and “black men and white men, Jews and gentiles, Protestants and Catholics,” were all mentioned here.

Disability was not. I believe we are embarking on the days of fighting for the rights of those with disabilities, in a way, like society was at with race fifty years ago.

I know these struggles are ongoing when it comes to race, but they extend to anyone with a disability. society is slow to adjust to the differences it sees and feels unable to cope with. This is the challenge my parents especially must handle.

They never stop worrying about us, not even as we’ve grown into adults. They will never stop.

What do they worry about when, one day, they won’t be around to watch out for us any longer?

What do my two sighted siblings worry about? Do they fear, not selfishly but realistically, once they must take on any perceived or real extra responsibility, with selfless concern for us?

When that day comes, where in life will I be and how much farther will the rest of society have come in regards to acceptance and inclusion?

It is a mostly silent and behind-the-scenes disregard. It is not openly hostile, like it has historically been for those of other races. There has been educational segregation. This has slowly lessened as time has gone on.

It’s hard not to feel feelings of bitterness and anger sometimes. I know my family have felt it for me, feelings of indignation for how the world sometimes looks down at me for daring to have a disability which makes a lot of people ucomfortable. The challenge, for me and them, has been to not let those feelings control how we’ve looked at the rest of the world.

King spoke of “their destiny being tied up with our destiny.”

Maybe one day soon the world will realize that we are all one, connected through being human, regardless of our differences, be them skin colour, religion, or our abilities.

King goes on to speak about dignity. The challenge, in my case, is to find this right to dignity that we all are entitled to. The challenge is to find it and I owe my family for all they’ve done to help me get my share.

I was lucky to be born here in Canada. My family have never truly had to discover what it felt like to be fearful for my physical safety.

I do not mean to say that the experiences MLK spoke of are all that similar to those of someone, like myself, born with a disability. However, there are just some similarities that I can not ignore.

It all boils down to dreams in the end, the dreams we all have for a more tolerant and loving society.

***

“I have a dream that my four little children will one day live in a nation where they will not be judged by the colour of their skin but by the content of their character.”

***

This is possibly the most famous line from King’s “I Have A Dream” speech.

My parents too had four children. Their biggest dream would also and always have been that the four of us (two born with disabilities and two not) would grow up in a world of less judgement of those differences that stand out, and more recognition of the way we treat others and conduct ourselves, as kind and decent human beings.

This is the challenge, to learn how to deal with an imperfect and fallible world, all while remaining happy and safe within that world.

***

King said: “the rough places will be made plain, and the crooked places will be made straight,” and this is a challenge that my family all must tackle. They must know how to trust that our path in life, literally and figuratively, will be a safe enough one for my brother and myself to walk along, whether with them or by our selves.

They had to discover, from the first time I fell or hurt myself on an object in my path that I did not see, that I would be okay and that they could not protect me from everything, all the time.

***

A huge part of King’s words were about discrimination, the word and the act of discriminating against someone because of the colour of their skin.

discrimination comes in many forms and I have felt discriminated against, of course, in my own way. I was spared violence and outright hatred, but I felt looked down on still. I felt lesser than and like something to be ashamed of and hidden away.

My family must look in on this sort of thing, often from the sidelines, and feel the helplessness of how far we have yet to come.

We may be fifty or so years ahead of King and his words, but the challenges to the dream we all have are still there.

***

So much of this speech stays with me and gives me hope whenever I hear these words, spoken so eloquently.

Over the next month I will be writing all my blog posts with #1000Speak on my mind.

1000 Speak, About

I will get through the cold winter days to come, speaking my own message of hope, with the words of Martin Luther King running through my mind, and the energy I feel from 1000 Voices Speak For Compassion because it all comes out to the same thing.

I have my own dream for the world and my compassion and the compassion of others is at the centre of all of it.

Martin Luther King Jr.’s I Have a Dream

“And so even though we face the difficulties of today and tomorrow, I still have a dream.”

Resource:

http://www.americanrhetoric.com/speeches/mlkihaveadream.htm

Making the World Accessible: The 75% Problem

Another Memoir Monday and another edition of

The Redefining Disability Awareness Challenge.

This week and next are both about challenge, as the title of this blog series says.

***

Q: What are the biggest challenges that you face in regard to disability?

A: This week’s question I choose to base mostly around a YouTube video I came across last week.

I may have already addressed this topic in a previous post, but when it comes to today’s question, there really is no other answer I can go with.

I could write and write about this subject, for endless words upon words, but the following video speaks for itself:

Making the World Accessible: TEDxBeaconStreet talk with Dave Power, Perkins CEO, on YouTube

The Perkins CEO speaks of a statistic that I hear, more or less accurately, and often I am brought down by the futility of it.

I don’t want to seem like I am pitting us against them, us visually impaired who want to work, up against the big bad rest of the world that stands in our way.

It’s the same sort of us against them that seems to be going on between feminists and everyone else/men or whatever group you want to go by these days.

Placing blame is not the answer. Playing the victim is not what we should be shooting for. Finding some way to work together is my dream.

The above video says that for visually impaired young people and adults wanting to find jobs, the biggest obstacle is not technology, but it’s the rest of the world.

I can’t say I disagree with this, therein lies the challenge, because I know there are things we can all do to improve such an overwhelmingly high statistic.

The challenge, for me, lies in finding ways to show my skills and talents to the world and having them give me the chance to prove them.

I fear the judgement and the criticisms I will inevitably face. How long will it take for the world to catch up?

Technology is growing by leaps and bounds. Two hundred years ago it was barely conceivable for someone born visually impaired or blind to even get an education.

Dave Power is President and CEO of the school that started it all in North America, that taught Anne Sullivan and Helen Keller.

Two hundred years later and through a school like Perkins or through a neighbourhood school, like the one I attended, education is a right that is denied to nobody.

Now it’s what comes once school has been completed that’s the issue.

What did we go to school for? To learn social skills. To learn how to read and write. But what comes next?

The realities of adulthood came up on me like a rising tide. I could not hold it back, but paying bills, filing taxes, making a contribution…

For any visually impaired person who feels like they can’t fit in and that there’s no place for them in the working world…I know how it feels.

I don’t want to make employers nervous. How many sighted applicants would be placed before me in line for any job I might apply for?

What safety concerns would an employer have when considering hiring someone who can not see?

I wish for an open dialogue with the employers of the world. If only they could get to know me and see just how responsible I am.

If only they knew how amazing technology is these days.

When I go over all the jobs in the world that someone without sight simply couldn’t do, I despair that there is nothing out there for me.

When I think again I correct my thinking and, once again, I want to show the world just how capable I am. It makes me want to prove myself all the more.

The stress of this and the fear and worry that I will never find meaningful work sometimes challenges me so much that I want to give up.

But that’s just not me. Life is full of challenges. I’ve been facing those challenges all my life.

Am I up for the challenge?

Is the rest of the world?

***

Perkins President and CEO: Dave Power/About

About TEDxBeaconStreet

***

What do you think of the 75% statistic I refer to in this post? What do you think can or should be done to improve it?

Next week’s challenge question ties into this weeks’ and is as follows:

What do you think are the biggest challenges that your family members face in regard to disability?

My Glass and the Roller Coaster

Well here I am again.

🙂

It’s been several weeks since I participated in the

Redefining Disability Awareness Challenge,

having taken a bit of a break over the holidays.

Now it is a brand new year and I am ready to get back to it because I truly enjoy taking part in this series.

***

So here goes nothing, with the first Memoir Monday of 2015 and my reply to this prompt from the challenge:

Describe your baseline, or an average day.

Life can be a roller coaster sometimes. Sometimes you feel the thrill of being on top of the world and the rush of the loops. Those moments which can cause your stomach to drop out, the twists and the turns, they can make the ride all worth it. This exhilaration can be a feeling you never want to end.

Other times the ride may get stuck up there. Maybe you weren’t expecting it, were unprepared, when the ride turned you up-side-down. Or the deflation of knowing the excitement of the ride is over can pull you down to the ground.

I wrote, in previous posts for this challenge, about my darkest thoughts and my best moments, but really I am a nice mix of the glass half empty/half full.

As a metaphor I like the image of a glass of liquid to represent one’s outlook on life. I think about it often, with the troubles I sometimes face, allowing it to clearly balance my thoughts and to bring perspective.

A lot of the time though I am somewhere in the middle. I like to say that my glass can be either half empty or half full, depending on when you ask me, but that I am constantly spilling.

I sometimes hold it crooked or walk to fast. Life is messy and I make my share of messes.

I love roller coasters, but I don’t tend to be one myself. I believe in balance in most things, in life.

Sure, I have my moments of over-dramatics, like everyone else, but I guess today’s post should be the perfect one for me because I like to remain in the middle somewhere.

This could be called average or baseline I suppose. Most days I just live my life like anyone else would and there’s nothing much to tell. Pretty boring, because that’s what average amounts to.

We should be careful with such words as “average” and “normal” though.

They aren’t a bad thing. I am usually even-tempered, even with some of the thoughts and emotions I have inside.

I can be passionate, when I really care about something, but on a day like today, I let the fact that it is the first full week in the long and cold month of January sink in.

I stay warm and I write. I think and plan and imagine the coming year and my future. I don’t let anything get me particularly down and I try not to get my hopes up too high.

The past several months have been a roller coaster, I would say, even for a mild-mannered person like myself. The holidays were a whirlwind and emotional for me.

On a day like this I try to take stock of my life and I keep my visual impairment in perspective. I assess my strengths and my accomplishments and I try not to get ahead of myself, as there are still 360 days or so left for me to ride the roller coaster again.

***

So which one would you say you are: glass half empty or half full? OR are you somewhere in the middle, like I am?

Stay tuned:

What are the biggest challenges that you face in regard to disability?

The answer to that question…one week from today.

Happy 2015 and may it bring plenty redefining of disability, a nice mix of life’s roller coaster ride, and fewer challenges for us all.