Taking A Chance, #Podcast #SoCS

In my latest attempt to express myself, I am developing a podcast with my brother.

It is in the works. The first attempt we made was good enough, but not quite where we wanted it. We used the wrong type of microphones, which is my brother’s expertise. We didn’t even have a name for the podcast settled upon. I like things to have a name; therefore, nothing felt quite right, fell into place, until that was decided on.

I am going with my instincts. He is too.

My hope for this audio blog, as it could be known, is simple self expression.

I did it with my writing, my blog, and I keep trying to find new ways of doing it.

How to successfully express what I have to say, what’s going on inside of myself?

Do I express myself enough through my writing? Through this blog?

How about through writing memoir vs fiction?

Or can I better express what my heart wants to say, when I stop speaking altogether, allowing the music of a violin to take over?

I think the connection I have with my brother, both youngest of four children, both born blind is one worth exploring.

I think we could say something real, express some things in a relatable way, letting our unique banter shine through.

We’ll see. Now that we have done some testing, to hear back how we sound, we have outlined what our first, introductory episode of “Ketchup On Pancakes” is hopefully going to sound like.

Hope the name catches the attention of possible listeners. I hope to illustrate how important the sibling relationship can be, why I believe we both have something to say, and who knows, beyond that.

I do know, these days, everyone feels more and more like it’s achievable, not to mention, their duty to express themselves, often times in a mostly public forum. I choose to be a part of that. I just hope to do something positive with that chance.

And so, I press onward, and I can’t wait to give podcasting a shot.

This week’s

Stream of Consciousness Saturday

was to start with, include in the middle of a word, on its own, or as a suffix:

“press”,

which presents an endless number of options.

The Little Stone House That Love Built

The little boy loved to play in the dirt and the tiny stones and gravel of the ball diamonds that filled his family’s summers.

While his parents sat up above him, on the bleachers watching their son or daughter’s baseball games, their youngest child would amuse himself as best he could.

He and his older sister did not play, both unable to really see well enough for such team sports, but she did not enjoy her little brother’s activities either. She did not enjoy playing in the dirt and getting it caught all underneath her fingernails.

She sat up next to her parents, just waiting for someone to suggest a trip to the snack bar, or booth as it was lovingly known as in her family.

It wasn’t all fun and games.

The same rocks that were sharp and hard under the children’s feet, before their other set of grandparents paved the top part of their driveway, those are just the type of rocks he was told to collect. It was always a torturous trip from one side of the stony driveway to the other.

Such as life. This is life sometimes: rocky.

Their grandparents before them knew this well.

***

The man had worked hard in his life, way before his grandchildren came along.

He had to dig ditches during the war, or so I believe I heard was the story. His life is something I often think about, unable to imagine what that would have looked like for him, as such a young Polish man: Polish, French, Polish, a war in Germany and across Europe, and to Canada he eventually came.

His days of hard work did not end there.

Working in the mines in Quebec. I shutter at this thought, being highly claustrophobic myself. What did he have to do? How did he toil just to make some money to support himself and his new wife, in a new country so unfamiliar to the both of them?

He was a brick layer and he moved to Ontario to make a better life for the children they would have. My father was one of those children.

HE would build the little house, for his growing family, on Dover Street, close to the park.

This little house and the one I thought of today, on the anniversary of his death.

We have his houses to remember him by, whether it’s the big one, we still drive by sometimes or the miniature he built, from skill and with love.

For months my little brother brought him bags and bags of stones for the project they were working on together. They were buddies and my opa had a special thing in mind for his grandson.

He took those skills, now scaled down in size, due to all those years of drudgery and a bad back as a result. He would build a little house from the stones the little boy collected and he would build it, special, just for that boy.

Stones, a wooden frame, cardboard shingles for the roof. The little stone house was simple and beautiful. The accompanying garage, along with a chimney, and long-ago-lost plastic Santa on top.

The little house and garage are still with us, down in my parent’s basement. They serve as a memory of love, the simple and sweet love my father’s father had for my brother, and me too.

It is a kind and gentle love that will never be tarnished by age, time, or circumstance. We were young when we lost him, when he was taken from us. This freezes that love, a representation of innocence in childhood. I feel it every time I run my hands over the stones that he sculpted into a work of art.

He made my brother something he could touch with his hands, unable to see, and keep even after he was soon gone.

It will forever be, to me, the house that love built.

***

Last year, only weeks into my blogging journey, I wrote a post,

The Beginning and the End,

for the twentieth year since my first experience with death and loss of a loved one.

I will continue to write about him, every year in March.

Even as memories of him fade, bit by bit, slowly from my mind, I will never let him disappear from my heart.

Writing about him, whether here on my blog or elsewhere, he will never be gone completely.

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

Speeding Up and Slowing Down

“Speeding, ‘cause it feels good.”
—Lights

Lights, Speeding, on YouTube

For the first full week of January and the new year I have moved passed writing a round-up of my 2014 goals and achievements. This is a different post entirely, but let me start here.

I took on a lot of firsts in 2014 and a lot of things I’d always wanted to do and try: started a blog, began writing on a consistent basis (facing rejection and learning I could survive its many forms), walking around the outside edge of Toronto’s CN Tower, and making the leap of starting something for myself and my future with a travel website.

I wouldn’t be able to call skating one of those firsts, but it has been on my bucket list for many years now. Before 2014 would end I would be back on that ice, for the first time in more than twenty years.

***

Out in our back yard (which seemed huge enough to me already), over the fence, through the field, and then we were there.

During the winters, when the snow covered the ground, we would all walk back and back, my younger brother often pulled on a sled, until we arrived at the frozen pond: our frozen pond.

It was our family’s own private skating rink. I have only vague memories of it now, not so clear yet never totally forgotten.

There was the box, on the sled, my baby brother would sit in beside the ice. He hadn’t learned how to skate, but there was always his boots. I marvelled at the fact that this surface was so hard and thick, that we were able to skate over it, water beneath our feet. This all seemed magical to a five-year-old, but first the built-up layer of snow had to be shovelled off and this seemed to take forever, when all I wanted to do was skate.

I probably remember more the lengthy bit of tape devoted to one of these family skates in particular we have captured on record on our home movies.

Okay, so every time we’d watch, my brother and I would fast-forward past this part. It was long and all we could really make out were shrieks and calls of our siblings and the friends skating that day. I was there, sure, but I could never spot myself on the screen, having less sight than I did as a younger child.

I think I was skating, but all I could hear was the scraping sound of the skates on the pond’s icy surface…oh, and my baby brother, at the time, screaming and crying in his buggy. I could detect, even as I fast-forwarded, the dimness on screen, as we continued to skate and the evening grew darker. We had to stop and walk back home then.

I don’t remember my first time on skates, but I think I became pretty practiced at it and it was something I enjoyed as a child, for the first ten or so years of my life.

We used to go to family skates and I would go with school. I would race around the rink, holding onto someone mostly, with the music playing through the speakers. I must have grown quite comfortable with the motion and the movement.

Then one day, something happened that would be the beginning of the end of my love of skating.

My braille teacher came with my class and I for one of those class skating trips. She offered to skate with me and off we went, me holding onto her and then suddenly, down she went …

I remember the ambulance arriving and picking her up off the ice, whisking her away to the hospital. Visiting her there, her and her broken ankle.

“They were skating and Mrs. M fell,” the other girls in my class repeated. “Kerry was skating with Mrs. M and she fell and broke something. She hurt herself. Kerry pulled her down.”

Just girls being girls. I don’t recall for sure if they blamed me directly, or if it had been simply an accusatory tone I heard in their voices. We were eight after all, but I heard them talking there, off the ice, in the stands, as we waited to return to school.

I felt guilty for what happened and I felt responsible. Had I done this terrible thing? It was an accident, wasn’t it? No matter how many people assured me, then and since that time that I had nothing to do with it, something about it stuck with me all these years.

Over time it became less and less about family skates and more about hockey games, our family time at the arena. My brother played for a few years and my younger brother (who never really got the opportunity to skate) and I would spend most of our time in the warm room with the concession stand, eating pop corn and drinking slushies.

I would get sick with kidney failure soon after that and was in no real state for skating.

I still remember the fun of skating and, although not much of a lover of hockey, I would occasionally turn to a game being played on TV and listen to those familiar scraping sounds of the players skating madly around the rink.

My father played hockey. I am Canadian and hockey, to most Canadians, is a pretty big deal. I see the cultural pride and feel my share, somewhere deep down.

For a long time I used to watch figure skating on TV, imagining I’d stuck with skating and had become a figure skater like those leaping and twirling athletes I would watch. Figure skating was one of the sports I was able to see clearly enough on television. I would stare hard at the figure skaters, spinning and zooming around, imagining how much fun it must be.

For twenty or more years I have wanted to try it again, to step out on that ice, but never made it happen. Then, I got a new pair of skates for Christmas and it seemed like a good family activity for us all, now that my niece is starting to learn.

I wondered if I could even stand up on skates now. A lot of time has passed and I am no longer that nimble kid. I have terrible balance and my ankles often turn over on the smallest unevenness in the sidewalk. Could I skate anymore? Would I fall on my butt immediately? Would I even be able to move, even a little? I had to find out.

Last year I was starting to seek out those things I wondered if I could do, just to find out for certain. I had been looking for thrills and wanting to try new things, or at least newish. Twenty years seemed like a lifetime ago. What did I have to lose?

I jumped at my first chance, when my uncle offered, to come to a private party skate. Perfect. The rink wouldn’t be packed like during a public skate. I could get my bearings and there wouldn’t be as many people there to see me fall.

I loved the security of the way the skate felt as it was tightened and the laces pulled, fitting snugly around my ankles. the skates seemed to keep my rolling ankles in check and held firmly in place. I stood up and began, one foot in front of the other, to walk in my new skates from the change rooms to the ice. I was surprised at how easy it was to walk on skates.

I loved it immediately. The memories came bak to me as I felt the cool air on my face and saw the bright white of the ice. I always liked that I could see dark shapes of people against the glaringly bright background.

I held on for dear life to the edge of the boards as I took my first steps onto the ice in more than twenty years. I loved to smell the fresh coolness of the rink, that smell I always loved and never forgot.

I had no immediate plans of letting go of the side, but right away I felt something familiar as I began to get the feel of the ice again. I followed the side along, relearning how to move and propel myself forward on these seemingly thin blades. I listened to the scraping noises of the other skaters and I suddenly had the urge to release my hold by the open door and go go go.

I held onto the boards, onto my sister, onto my father. He and I began to skate, him taking my hands and then he was skating backwards. The first fall of the night. He and I were talking and he did not notice the hockey net sitting there on the ice. He backed into it and we both fell. I landed on my knees, getting slightly entangled in his legs. He took the brunt of the fall, but something flashed me back to being eight years old and my poor teacher going down.

My father stood up painfully, my sister rushed over, and the both of them helped me up. I clung to the boards once more, feeling nauseated and dizzy. I knew he was okay and hadn’t broken anything, that once more I hadn’t been responsible for anything, but I was immediately brought back to the past and I felt as close to a panic attack as I’ve ever felt.

Finally I could move again and I began to slowly make my way around by holding onto the side. The skate was almost over and I took my chance, just in case we did not return with the rest of the family the next day. I let go and moved a little distance from the side, but still close enough that I could grab on if I needed to. I had to learn how to move my feet, how fast to go and how to slow myself down and stop. I tried to learn how to keep my balance and how to distribute my body weight.

I moved a little and then I went down, hard, on my behind. This was okay. It was painful, but I was proud that I had taken the chance. Maybe skating with another person would be a good idea, for a while still, but I continued to yearn for the freedom of skating, fast and with confidence, all by myself.

So you might fall, I told myself. So what. Life is like that. You can go through it, never letting go of the safety of the side, or you can let go and see what happens.

Even with the falls and the flashbacks I felt a high as we left the rink and headed for home. I felt strangely exhilarated. I had felt a familiar feeling of comfort. I had felt at home, like an old memory. Muscle memory of some kind. It came back to me, like when you learn something from such an early age. It always stays with you and helps you as you grow older. I felt, even with the ever-present risk of falling, that I was home again.

It seemed, this time, like a much longer and farther distance to fall than as a child. If nothing is risked nothing is gained, I told myself to push this thought out of my head. I never wanted to leave that rink.

We returned the next day and this time I had my older brother too. I felt a certain certainty in skating with both my father and my brother. They were both tall and sturdy. They had a comfort on skates that I could feel the moment I held onto them and we began to round the rink, the side feet away and me loving the feeling.

I noticed how good it felt to work up the sweat, under my thick winter coat, the rink not even feeling cold anymore. It was a good natural high of moving forward on the ice. I wanted to speed around and around the ice, like everyone else there. I wanted to skate and skate and never stop skating. If I slowed down I wanted to keep moving again.

I was actually glad I had fallen. The next day I did not fall once. I took the risk of broken bones because I felt a sense of rightness and like I was somewhere I belonged and where had I been all this time?

It’s hard to feel comfortable and really go for it when I am at a public skate, with people whizzing by all the time. I think back to our private pond now and wish I were back there, on a silent snowy night.

I want to be able to skate and to practice and get better. It feels like the most natural thing in the world to me, childhood traumas notwithstanding. I am home. Skating is ingrained in my memory, part of my past, and hopefully, my future.

I want to make skating a yearly family tradition around the holidays, something we can do together. A totally Canadian pastime for all of us to enjoy. I can and always have handled falling down, as long as I have them there when I get back up.

The Year I Almost Missed Christmas

The year I almost spent Christmas in the ER.

I’d been on dialysis for nearly six months. Christmas was a mere few days away, but something wasn’t right.

I began feeling ill and something going on in my abdomen grew steadily worse and worse, the pain growing and building.

I spent most of my time downstairs, in our basement, covered in an afghan to stay warm. Grandparents and visitors stopping by for the season, a loving hand tucking the knitted blanket tightly around my trembling arms.

I had come up against all the unforeseen secondary medical issues any doctor could have predicted on the list since starting dialysis in the summer: losing an eye in the process. What more could go wrong? What could this be?

Each evening my mother would go through the checklist: turn on dialysis machine by bed, unwrap and lay out all the necessary tubing and medical supplies, make sure machine was going and the bags of dialysis fluid were placed on the machine and warming up, and finally to commence safety measures to prevent any spreading of germs.

I was on peritoneal dialysis, overnight while I slept. It was a repeated cycle of fluid inserted into my abdomen and then removed, as a way of clearing out toxins. Kidney failure treatment was supposed to be making me feel better. It had been, but not now.

My stomach began to cramp up as the machine began the first cycle. The fluid, on my mother’s inspection, appeared to be a cloudy colour. This, yes while unpleasant to imagine, meant infection.

It was comforting to have doctors on-call anytime, day or night and now only a day or two before Christmas. They told us to come into the emerge right away.

My father was away by the time I had gotten to bed, one of his men’s hockey league nights. We drove to the nearby town where the arena was and switched vehicles with him, not wanting to rely on his old Trans Am to get us all the way there.

My brother came along for support. It was into the front seat of the low-to-the-ground car, ten minute drive to arena, out of low front seat and into the family van. Not so easy in my condition. Stomach hurting so much with the unsuccessful attempt at a PD run earlier.

The whole way to the hospital my big brother sat in the middle seat of the van, holding me up and secure to all the bumps and the jolts. By this time the pain in my stomach was getting even more intense.

Finally we made it to the hospital and I was taken right in, given a bed and a curtain to close off the rest of the hustle and bustle of the overnight ER.

I spent a few hours on that bed as I was given antibiotics to try and stop the infection, through my abdominal catheter, same procedure as any other night’s dialysis routine.

We returned home, early on the morning of Christmas Eve and I spent the next few days horizontal.

First my brother and I both collapsed on opposite ends of the L-shaped living room couch, exhausted from the excitement of the previous night.

I had no idea what it was going to require in that emerge, so close to Christmas 1996 and if I would make it back in time to celebrate with my family. In the end I spent a somewhat uncomfortable Christmas Day, opening presents, grateful for dialysis and it’s many surprises (often unpleasant) but still necessary.

This holiday season I reflect on that particular Christmas and so many more, while I appreciate the almost twenty years that I’ve been dialysis free since that terrible, memorable night.

Even Blind Girls Just Wanna Have Fun

Welcome back to another Memoir Monday and another answer to a question from the:

Redefining Disability Awareness Challenge.

***

Q: Are your leisure activities or hobbies affected by disability? How do you work around this?

A: Of course they are. I don’t know what kinds of things I would be into if I had all my sight. I sometimes wonder. Would I like sports? Would I love to paint? However, it does no good to linger on these questions. I like to have fun and enjoy myself just like anyone else.

I love to watch movies: in the theatre or at home on the couch. I know a lot of visually impaired people who could care less and who would place movies very low on the list, but I have always loved to escape and get lost in an interesting storyline, with gripping characters, played by my favourite actors.

This is addressed in last week’s post:

All They’ve Ever Known.

I might not have been able to enjoy all the movies I’ve enjoyed over the years, if it hadn’t been for people like those in my family who learned to describe the action going on on the screen, so I never felt left out of popular culture and the blockbusters of the day.

Now, of course, there were services such as DVS (descriptive video service) and my brother and I used to order movies from a catalogue. They would arrive in the mail and we could watch movies on our own.

This is where I first discovered my love of Gone With The Wind.

I like to think I have a wide variety of hobbies and interests, just as varied as anyone else.

I would probably love to paint now, if I could see. I miss the times, as a child with more sight, when I would draw for hours at a time with my beloved markers. This hobby I had to give up, but I have replaced it with others.

Spending time with family and friends isn’t really affected. I fit in with them because they know me and accept me. We have fun spending time together.

I love to go to concerts, on day trips/road trips, and theme parks.

The big question and the universal joke made by and for visually impaired people would be the issue of driving.

One of my favourite things to do is go for a drive, especially at night, with my favourite music playing. I love feeling like I am moving forward, speeding ahead, an energy and a relaxation I get no other way.

I never have to drive and can always just sit back, in the passenger seat or in the back, and enjoy the ride, leaving other people to concentrate on the road.

Of course this means I am never able to just jump in my car and go for a drive alone, but with the possibility of technology and the driverless cars that already exist, who knows what the future may bring.

I have had the chance to sit on a parent’s lap, when I was younger, and drive around a WAL-MART parking lot at night. In my dreams I drive sometimes and perhaps that’s a sign that I could be good at it, if circumstances were different.

My main hobbies are reading and writing, both not impossible with the help of technology. I need help from special equipment, such as: Mac computers with built-in voice software, electronic braille displays, and iPhones. These things continue to improve and there is no telling where things could be headed.

I used to have shelves and shelves of thick braille books and volumes. This could be cumbersome at times, but nowadays space is more plentiful with the inventions I mentioned above.

With the help of these technologies I spend time on Facebook and other social media like most people these days. An entertaining distraction, taking up maybe more time than it should.

🙂

I have a tandem bicycle. I can walk alone, depending on whether I know the route. Going for a walk outside in my favourite autumn weather is better arm in arm with a loved one. Sometimes I take my dog. Sometimes I take a cane.

Girls Just Wanna Have Fun, Cyndi Lauper

So the song applies to all girls, even me. It’s important to have fun and to have time to relax and kick back and I look forward to this, with others or solo. I find ways around the problems that can arise, if it’s something I really enjoy. I owe my parents for helping to show me, from a young age, that this is possible.

***

Next Week I will answer a broader, more open-ended question for the challenge:

Does disability affect you in other ways? If so, how?

Which hobby or leisure activity that you enjoy would you think might become difficult or impossible to do if you lost your sight? Which one would you miss most: driving, painting, sports? How do you think you might adapt?

All They’ve Ever Known

A new week and I bring some new perspectives to the table.

Last week I wrote about school and work,

Here.

This week I return to the subject of family.

***

Q: Is your family life affected by disability? In what ways?

A:
I have shown the strength and character of my parents in past answers:

Literally,

Special Magnificence,

and

Diagnosis and Treatment.

This time I thought, with the word “family”, in the question that I would ask the other two I have not asked yet: my older brother and sister.

I have two amazing parents and a younger brother who knows what it’s like because he was born visually impaired too.

My two older siblings have been there from the start and I wanted to share their point-of-view because if anyone was affected, good or bad, it would be them.

I ask my brother and then my sister this question and this is what they said:

***

P: That is a tough question to answer.

At first I wanted to say yes. Mainly because I always felt like I needed to protect/help you growing up and even today though I don’t see you guys very often.
But I would imagine that every big brother would feel that way about younger siblings. Worrying when you were sick or going into the O.R.

Honestly I cannot think of a particular situation.

The only scenario that comes to mind is while viewing a movie or television program, I’d always try to describe in as much detail as possible what you were missing. I’ve always wanted to make sure that you and your brother never miss out on anything that sighted people take for granted.

So to answer your question, are we affected?  Life may have been different for us growing than for most kids. But this is all I’ve ever known and couldn’t imagine it any other way.

***

K: Growing up having siblings with a disability is like anything in life, especially as a teenager, you can feel self conscious – even when it’s by association. No one likes to feel out of place. At the same time, it came with a strong urge to protect and defend.

That being said, that was only part of what it was like growing up in a family that visibly, can seem a little different. More importantly, I think it has helped to show how differently people can be whether outwardly or more under the surface. I think it made me a better person, more understanding and compassionate. It showed me that any disability, big or small, can be overcome by both those around you and those with the impairment.

My parents displayed this with their never ending ability to give my siblings the chance to take on the world with the least resistance possible. It also showed the power those with disabilities themselves can display when given the chance, that all people can thrive when given support and proper circumstances.

Mostly though, it was just my family, at the end of the day (and really at the beginning and in the middle of the day and all the moments in between). They’re just your little sister and brother – and as you get older you no longer notice those stares, and that feeling of self consciousness becomes an awareness that our differences need to be celebrated and not a cause for feeling out of place. All people have their own disability, some are just more obvious than others.

***

When I asked them this question I knew it could be a difficult one. You have to understand that this was a difficult question. Just think of anything or anyone in your life that has always been there. That is “normal” for you, in a way that might not be true for someone else.

As for my siblings, I wondered if it would be hard for them to think of any actual examples or if they could possibly be hesitant to say something that might hurt my feelings if I knew it because, honestly, I have felt guilty in the past.

I know people stare and I know, children especially, don’t like to feel out-of-place. I never wanted to be the source of resentment.

I know jealousy is just a part of being a sibling, at one time or another, and there were four of us. Being one of four in a family teaches you to wait your turn and to be patient and flexible.

I know that a lot of attention had to be given to me and my brother at certain times, and that couldn’t have been easy.

For me I can say it is comforting to no end to know there are at least two people in my life who accept me for me. I am just me to them. They know the little things about me, as I do them, good and bad. I feel a reassurance around my brother and sister that I do not get anywhere else. I have always been there for them and they for me and I hope that will never ever change.

My sister and I have real discussions about the things in life that really matter and that everyone goes through. She has helped me fit in with my surroundings and to feel like I am worth knowing and loving.

My brother, like he said, has always described anything visual in a way that I could understand, allowing me to enjoy such things like everyone else.

I hope I could have given them both even half of what they’ve given me.

No matter what, no matter what may happen, I know I will always have them, even if we go our own ways as adults and have our own lives.

To us, our childhoods were full of love, fun, and all the normal ups and downs that siblings have, but we did it all together and we have memories we will never forget and that have made us the people we are today.

Feeling a part of a family is something we all need. That is the first place we find acceptance and security. I hope we will always have each other to lean on.

***

Next Memoir Monday, for the

Redefining Disability Awareness Challenge,

I will answer another question.

Are your leisure activities or hobbies affected by disability? How do you work around this?

What is “normal” for you that you think might not be that way for someone else?

I hope you all have a pleasant week and I hope you all have family to lean on like I do.

Phasmophobia

Welcome to October.

Now that we are in the month leading up to Halloween (historically not always my favourite holiday) I have decided I would take my past issues with it and try and loosen up a little.

Every Fiction Friday leading up to the 31st I plan to write a creepy, spooky, or scary tale.

I have been thinking about this for a while, but this week a blog post from one of, what has quickly become, one of my most looked-forward-to bloggers, landed in my in-box:

5 fears and what they say about us.

This insightful young, twenty-something blogger has given me the five Halloween-themed short story prompts I have been looking for.

***

1. Ghosts. We breathe easy knowing we’re in the safety of our own home. Confined within walls, behind a deadbolt,, with 9-1-1 on speed dial. Ghosts take that security and leave us helpless. to be in the in the presence of a ghost is the all too familiar feeling of being trapped within ourselves, with nowhere to run and nowhere to hide. The mere idea of being powerless is enough to break us down.

***

As you enter the house you close the heavy side door behind you with a thud. From somewhere within the house you hear a shattering noise, as if a picture has just fallen off the wall in some room on the other side.

This makes no sense. How could closing this door, barely slamming it at all, how could this cause that?

The room is silent and still, the darkness closing in and that can’t all be coincidence. Something lingers in the room, even as you leave it. It might follow or patiently await your return.

As the television seems to flicker on and off a time or two, your apprehension is growing. All these creeks and alike used to be disguised, perhaps by the simple fact that you were not alone so much. Did the distractions that have ceased only served to remind you that sanity is loosely maintained? After you are alone with only your thoughts to keep you occupied, you start to second guess your grip on your present and the reality or lack there of.

It’s silly to believe in any supernatural beings. What evidence have you really seen of such foolishness? None, that’s what. others’ abnormal little anecdotes aren’t nearly enough to convince you that your usual rational reasoning is faulty in any way.

Suddenly you think of that famous Shakespeare line:

Me thinks thou doth protest too much.

The air feels stifling in the room as you awake suddenly and with a start, a strange shiver running down your spine. That ghostly sound that you sometimes hear when you close the basement stairs behind you, going down to check the laundry and the dryer, is perhaps the thing that has disturbed your sleep tonight. Your ears seem to recognize the faint ghastliness of that reverberation.

You suddenly sense a presence close to you in the dark and a soft coolness seems to slide through your fingers, as if you hold the hand of an invisible bedmate you did not recall lying down with.

The next sign that you aren’t alone is a gentle sweep, as if a finger has reached out, without being spotted, a trick of the mind like when your brother used to tap you on the shoulder on one side, slyly while he sat on the other. Gotcha!

You jerk your hand away at first because there is no explanation that seems to satisfy you. you swipe your own cheek with the back of your own hand. Such a gentle gesture of human contact, but maybe just a dream, seeping through your seconds old consciousness.

If you could bolt from this room at this hour you would, but there is nothing else outside your window, other than more darkness. You could start, heading for somewhere where these things would lose their oddity, but you fear then you might never stop or find your way home again, doomed to wander somewhere out there, forevermore.

If there is a disturbance in the space around you you don’t know how to classify what it is, but your soul seems to freeze in mid sensation. All the synapses are firing and something makes you pull the covers up tight to your chin, as if pulling your limbs to your sides under the blankets will protect you from these unrelenting forces. Why they nag at you more and ore you can’t say.

What is this presence existing side by side with you in the house that you have all to yourself, or you used to think so anyway. Now you can’t get rid of it, whatever you want to call it. You are never alone, but doomed to always be alone all at once.

***

Thank you

Young and Twenty,

for your thought-provoking blog and I will be back next Friday, to tackle those creepy crawly critters that make so many of us jump back in fear.

What about you? Do you believe in ghosts? Have you experienced strange and unexplained incidences at any point?

Tornado: Part Two, Aftermath

Last week (in Tornado: Part One) I told the tale of the day the tornado struck and the

Whirlwind

And now here is the aftermath of that storm.

***

Rural areas around Hickson, 13 km north of Woodstock, and a wide swath south and east of the city showed only too clearly the devastating damage left by the tornado.

***

What happened to your father’s car?

We found out where it was and went to the auto body. It didn’t look horrible. The windows were all knocked out, dents all over the car, but it looked damaged enough. We got the insurance and the things we needed out. I am not sure what ended up happening to it.

***

What did you and Dad do the next morning?

We went out to the farm and I was just shocked. By then already there were chainsaws going, people were cutting up the trees.

I don’t think I did anything but walk around that day from the barn to the house to the driving shed, everything was just completely gone.

Back then they still let you go through all your stuff. I wandered through the rooms. Today they would bring in crews and would need to check the structure of the house before they would even let you go in.

There was broken glass all over and shards of glass were driven right into the kitchen counters. The walls upstairs were completely torn off. My old bedroom was completely open to the sky. My wedding gown had been in one of the spare bedroom closets. We found it stuck up in one of the pine trees. shredded and dirty. Somebody else must have taken it down already because I don’t think I did that.

The little kids swing set was still standing unharmed with pine trees ripped out on all sides of it, from when we were kids. We had that swing set.

(I used to swing on this set with my cousins when we were growing up. My youngest uncle would live on this farm for many years, after my grandparents retired and passed the farm to him.

My grandfather gave a swing set like this to each of his children for their children. Ours stands there still and now my nephews and niece play on it. It is a strong structure, as strong as the man it came from had been.)

***

What did you and Mom do and see that next morning?

We drove out and as we got there we could see how much damage was done. All the trees were down…tuns of people already, chainsaws going. Mom met her family…lots of hugs and crying, surveying the damage, driving shed gone and debris all over the place.

It was only nine or nine thirty and there were already probably one hundred people there, people…people showing up all the time. Family and friends just kept on showing up.

What damage was there to any vehicles?

The freezer had fallen against your uncle’s car. It had been in the garage and the garage had been attached to the house by a little breezeway. That wall had fallen…on his car, which was in pretty bad shape.

What other damage did you notice?

Outside I looked up and could see the bathroom wall was gone, you could see the bathtub and toilet. The house was quite damaged, especially the top, a lot of water damage. The staircase was damaged with bricks all over the place. I thought I walked upstairs. Sometimes…it’s thirty five years ago and it’s pretty traumatic. Some of the finer parts…I might have forgot. Chaos all day…people working, doing this or that. I don’t know what we did all day. I don’t remember me doing anything all day either…people bringing food.

***

When you first saw it, did it still look like the house you grew up in?

There was a nice stained glass window in the living room, it was all shattered to pieces. Most of the downstairs windows were all blown out. The stairs were all full of bricks.

How long had that house been there?

It had previous owners. It was built somewhere around nineteen-hundred. It was already almost eighty years old when this happened, but it had a double brick layer, a beautiful old farm house.

What did you say and what did they say when you finally saw your parents?

They both explained where they were and what it felt like.

The loud roar of everything being torn up above would have been frightening I’m sure.
She didn’t know where grandpa and bruce were. She had no idea. She stayed crouched beside the oil tank in the basement, next to the furnace.

They were out in the barn milking cows at the time.
They went over to the milk house because it was buried in the barn bank. two walls were buried in the bank and the third wall was against the barn, figuring that would be the safest place. The doors blew open and it got really really windy in there so they moved just inside the barn on or underneath the steps. As they did that there was a horrible loud sound and the silo broke apart and fell down on top of the milk house. If they had stayed where they were they would have been crushed by huge slabs of concrete.

(Grandpa and my uncle laid there, my grandpa covering my uncle and the dog somewhere in there too.)

Was her name Lassie? Didn’t you have several dogs named that growing up?

Quite a few. Grandma liked to name her dogs Lassie. The poor dog. She went deaf after that tornado. She never heard again. Whether it was just stress or the pressure of the wind.

It took their farm but the farm north of them and the farm south were perfectly fine. Then it went over to the next road. It hit the river bed and kind of followed along the river. Then jumped out…there’s one woods along the highway and it went through there and all the trees were just wrecked.

***

(For a while during my conducting of these interviews my two parents spoke of their memories and recollections together. Mom remembered what was necessary to protect the ruined property early on and Dad chimed in with what they both recalled of a particular situation.)

My uncle stayed over night to make sure nobody came out to steal anything. The telephone still worked. Well, I think you could call out but you couldn’t call in.

Wasn’t there some guy? my father reminded her, not having to finish his sentence.

When they were chopping up white birch trees…some guy started loading it in his truck. “Hey! This isn’t a free-for-all!” My mom recounted.

A lot of people were helping out, weren’t they? I asked naively.

Yeah, a lot of people but not strangers putting in their trunk to take home. HE was taking wood. Why would you take wood. You’d chop that up.

(Both their memories intersect and overlap and one had a picture of the details of those days that the other did not or which did not match up at times.

My father still recalls the tornado falling on a Tuesday while my mother does not recall the actual dates, him being better with those sorts of details. That is a trait I inherited from my father. He remembered details such as where the holidays were spent that first year after the tornado.)

We had Christmas dinner down there that first year, Christmas of seventy-nine.

***

What other damage did you and Mom notice as you wandered around that next day?

The chimney had fallen on top of Grandpa’s car.

How were you involved in the days that followed?

We were there constantly, back and forth everyday. I was off work for a couple days.

How did Grandpa seem to be holding up to you?

Confused, in a bit of a daze with everything that had just happened to them.

When did the rebuilding begin?

Grandpa had to decide if he wanted to even rebuild. Someone down the road might have sold their farm to him if they had been ready to retire…I remember him talking about that.

Finally they decided they were going to rebuild and by the next week there were men working to rebuild the top of the barn.

***

Mennonites are Christian Anabaptists who follow the teachings of European religious leader Menno Simons (1496-1561). They believe in pacifism, non-violence and simplicity. The Anabaptists (meaning “re-baptizers”) arose from the Protestant Reformation. They rejected the idea of infant baptism, believing the practice should be a voluntary expression of faith. Their descendants include the Amish, Baptists, Hutterites, Mennonites and Quakers.

. According to their website, The Mennonite Disaster Service was first organized in Kansas in 1950. It was an extension of the Mennonite practice of mutual aid, and the belief that their faith is best expressed through daily caring for one another. When church members or neighbours lost a barn in a fire, flood or tornado, the Mennonites would raise a new barn “to represent the love of Jesus Christ and the power of collaboration.”

. The Mennonite Disaster Service now claims the involvement of more than 3,000 Anabaptist churches and districts. They organize and manage volunteer labour, but do not provide direct material or financial donations to victims.

***

How did your parents find out about their car and all that had happened at home while they were away?

A week and half later mike (his brother/my uncle) and I went to meet them. Obviously, we had to pick them up at the airport and we told them what had happened. They said they remembered seeing something in the paper about a tornado somewhere around here, not if they knew where. Back then you didn’t have the same news as today. They didn’t realize it had hit at home here.

Even your father helped out didn’t he?

My dad was still working, but he came, as a brick layer. He helped fix some of the barn, pens and around the windows and doors. He would come sometimes after work.
There were people milling around, not as many people as the first few days, but it was a lot of mess around to be cleaned up still.

***

Where did your parents live once their home was practically destroyed? Did they stay with family?

They did for probably the first week or so and then their friends lent them a Winnebago they parked on the farm so they could stay right there because they had cows to milk and people were there all times of the day and night.

Did all the animals survive?

All the cows were fine. There could have been some pigs lost. I don’t know if there were some sows outside probably.
But most of the animals inside the barn…the tornado took off the whole top. The top of the barn was full of both straw and hay. It took the barn walls and roof and most of the hay and straw were blown away, but the floor of the barn was left in tact and therefor all the animals below it were protected.
There aren’t that many windows in a barn and they are all solid stone and concrete sides.

What other damage and destruction was there?

There was corn out in the field and it looked like someone just took a big roller over it and flattened it right to the ground. It was just pushed over sideways from all the rain and wind. Most of it wasn’t broken off. It was just pushed over sideways and flat.

One of my old report cards…up in the attic already…it blew to Drumbo, which was ten miles away. Somebody found it in their field. I got it back. Somebody eventually recognized my name and returned it to me. It was a little tattered, but it was still very legible…probably had gotten wet but had dried out and laying in a field. You didn’t know whose stuff was whose. We could have been picking up debris from the neighbours. A lot of it was broken pieces of things. Very few things were left in tact.

What happened next?

And then the clean-up began. I used to go out there every day and bring a basket of laundry home with me every night because everybody’s clothes would be filthy dirty.

Then we started knocking the mortar off, to reuse some of the bricks. Grandpa sold the bricks from the house. The whole structure was torn down. First, salvaging what you could, taking out all your personal stuff, Grandma’s photo albums were in cabinets right in the interior of the house inside closed doors so most of them were okay. She had a lot of her personal effects like that still kept. Anything out oven a room or upstairs was taken away pretty much.

It was a matter of taking all that stuff out and then where to put it. It got taken to a lot of different places. For months and months afterward, when they finally moved into their new house people were returning with boxes and boxes of the stuff they had taken to keep for them.
Many different people came and helped and then those people would take boxes of stuff to their own homes because there was no place to store it. There were no buildings left to put it into.

How long before they got their belongings back then?

It took probably almost a year after before they got all their stuff back. You didn’t know what all you were missing initially because so many people packed it into boxes and took it away. That way a lot of people cleaned up stuff for grandma so she didn’t have to do it all. For months after even food from the freezer was returned, stuff they didn’t even remember they had had.

Grandma dealt with pain and fatigue from fibromyalgia for years at this time. was all the stress hard on her condition?

Yeah she did. I’m sure it was. Sometimes you go on adrenaline initially but yeah Im sure it was hard on her too but she did well considering. Sometimes you don’t really get a chance to think of yourself. when you’re caught up with so many different things and
that was why it was good to be right there. She could go lay down anytime she wanted to.

How long before they could move back into their house?

They didn’t get into their house until almost Christmas. They were just thrilled when they could move into the basement. They just set up sheets to divide and separate the room for privacy.
One couch was rescued but their living room furniture was ruined. They had to buy a new living room set after they moved into their house.

(Years later the surviving couch was still in use in the family room of their little house. The arms were ripped, but at least it was well-worn.)

How long before the new house was totally rebuilt?

It would have probably been Feb or March before they actually moved in upstairs.
By spring all the rest, all the outside was done.
They had insurance so that paid for the majority of stuff. They had someone come in and paint and do all that stuff so Grandma didn’t have to.

How did this affect them financially?

The community, they had a tornado fund. I can’t remember if they got seven thousand dollars or how much they got.

What did Grandpa do going forward?

He took all the pine trees that were wrecked and took all the tree trunks and sawed them into 2 by fours to build the barn. Had to buy some but that really helped with the lumber, to keep down the cost too.

You were pregnant and then a first-time mom when all of this was going on. What was that like?

We spent that whole fall and into spring…almost every day I would go out to the farm. There’d be something to clean up…work at.
I felt fine…I felt good. I would take some days off, but spent a lot of days out there.
Paul and I went out fairly often in the spring.

***

It’s strange finishing the interview with her with Raffi on the television while my nephew sleeps in the next room, reminding me of a time on our old home movies with Raffi on in the background as children. That was only a few years after all this, but now it has been thirty five and I try again to imagine what it was like that day for them all and over the ones to come.

All I and many people imagine of a tornado when we try to picture one is that famous scene from The Wizard of Oz, on that Kansas farm in the thirties, a time long gone. That is even what I use as a visual in my own head.

I wanted to look back on what it was really like, with the only two people I can now ask. I want to thank my wonderful parents for telling their story and for the life they made for my siblings and I after that day that changed everything.

***

Some of the quotes from immediately after the fact I took from the following sources:

Kitchener Waterloo Record

Written by Sheila hannon

http://www.cbc.ca/archives/categories/environment/extreme-weather/deadly-skies-canadas-most-destructive-tornadoes/1979-woodstock-tornado.html