FTSF, Guest Blogs and Featured Spotlights, Memoir and Reflections, SoCS

For The Love Of… #FTSF #SoCS

My oma lived through World War II and food shortages. She knew something about the feeling of hunger. I don’t know her exact relationship with food, how close she came to starvation, but I do know it had an impact.

dtTjMeV.jpg

This means she was always feeding us, how many show love, and she loved us all (her family) through food alright.

Chocolate. Pancakes with Ketchup. I loved her salads.

I’ll admit, I like that empty feeling, when my stomach grumbles a little, as I somehow feel I am controlling my body. I have had a fickle and brought relationship with food and I don’t see that easing up much as I get older.

I guess that does link to feeling hollow in other areas of one’s life. I have never known the fear of going hungry, have often times had more than my share, a plentiful amount of food around me.

I struggled with food smells, when I was in the midst of kidney failure and the mouth watering aroma of bacon, a favourite of so many, made me want to vomit.

Now I still carry around with me a definite sensitivity to food smells. I don’t want my past with food or that of a loved one to bleed into the feelings of emotional emptiness or a hollowed out feeling of loneliness, one that only stuffing my face can quench.

I want food to be something enjoyable. I want to appreciate each and every flavour I come across. I know the problems with food and a lack of it that much of the world faces. I know I have had it good in comparison.

It’s
Stream of Consciousness Saturday #SoCS
on a Sunday.

Also, I’m linking up (on a double stream of consciousness weekend) with Kristi from
Finding Ninee
and Kenya G. from
Sporadically Yours,
on the subject of food and feeling empty vs (/) hollow.

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Blogging, Guest Blogs and Featured Spotlights, History, Memoir and Reflections, Throw-back Thursday

Fearing The Unknown, #AtoZChallenge

I didn’t do it when all the other girls were doing it.

15jjxHi.jpg

Was I afraid it would hurt?

The A to Z Challenge – E is for Earings

My sister wanted her ears pierced and our parents got them pierced for her, for her tenth birthday. I remember sitting beside her, in that chair, thinking there was no way.

I am two years younger. Two years later, I chose a McDonald’s birthday party instead.

I couldn’t possibly be afraid of the pain, or was I?

Just a few more years and I had to face any fear of pain, fear of needles, as I was required to have a lot of them. A diagnosis for how sick I felt was badly needed. Blood tests (needles) confirmed the suspected diagnosis of kidney failure.

I would soon have many scars, including the scar tissue in my arms, from the needles.

I had no choice but to face my fears. In my early twenties I finally decided I should get my ears pierced.

I’d been gifted a pair of heart earrings, one day, while I sat at dialysis, by a favourite nurse. I could not wear them.

For years I liked to play with those stick on earrings, but one day I decided it was time, far passed time, and off I went.

Did I need to enter a medical crisis, in order to be forced to face my fears, before I could risk the pain of having holes punched in my earlobes?

I love my pierced ears now. They allow me to walk around with a little bit of adornment and ornament, as I am not usually a jewelry and accessories kind of a girl.

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

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Blogging, Guest Blogs and Featured Spotlights, History, Kerry's Causes, Memoir and Reflections, Piece of Cake, RIP

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

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

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

The A to Z Challenge – D is for Diabetes

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

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

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

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

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

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

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

And so is writing about it not the answer?

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

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Blogging, FTSF, Guest Blogs and Featured Spotlights, History, Kerry's Causes, Memoir and Reflections, Piece of Cake, SoCS, The Redefining Disability Awareness Challenge

What A Life! #FTSF #SoCS

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

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

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

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

and the rare syndrome I share with my brother.

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

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

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

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

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

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

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

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

🙂

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

Finding Ninee’s Finish The Sentence Friday,

followed by

Linda G Hill’s Stream of Consciousness Saturday.

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1000 Voices Speak For Compassion, Feminism, IN THE NEWS AND ON MY MIND, Interviews, Kerry's Causes, Memoir and Reflections, Piece of Cake, Shows and Events, Special Occasions, TToT

TToT: Daylight Savings and Snowdrops, #10Thankful #PledgeForParity #WorldKidneyDay

“”They tried to bury us. They did not know we were seeds.”

–Mexican Proverb

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Spring is close now, an additional hour of light.

THE SNOWDROP – HANS CHRISTIAN ANDERSEN

The flowers are appearing. Growth is possible.

TEN THINGS OF THANKFUL

For an excellent spotlight interview on the American program 60 Minutes with Prime Minister Justin Trudeau.

Not sure how many people saw it, but I was watching, and I was proud and thankful to have him speaking for my country.

He spoke about being born into a politically royal family, his feelings on boxing and how it’s all about risking being knocked down but then getting right back up again, and he was asked what Canadians would like from our neighbours, what we’d like the US to know.

Oh boy! This was the interviewer’s attempt to start something and some Americans were very definitely offended and showed it on Twitter.

Justin Trudeau on 60 Minutes: Twitter Pulls No Punches For New PM

But I thought it was funny when an image on screen of Justin’s Father, with his supposed wife and mother to his children, actually turned out to be a shot of Pierre on a date with Kim Cattrall. Thought Americans at least were familiar with “Sex and the City”.

🙂

For the ability to be there when my sister needed me.

I want to be available to watch my nephew when she is at work, whenever possible. He’s learning, growing, changing so fast.

The other day, when she walked out the door, he stood there and clung to me for what felt like ages and ages. It was as if, without words, he was reassuring himself it would be okay…that his mother was gone but that he still had me. I never wanted that moment to end and wished it could have gone on longer than it did.

For snow drops.

There are flowers all over the place, starting to spring up.

😉

Then, the other day my mother (lover of all growing things) placed a small flower, on its stem, in my palm. It felt droopy, and I was then informed it was called a “snowdrop”:

https://en.wikipedia.org/wiki/Galanthus

I personally would have named it a snow-flop, but I liked the name and the transitional image of winter evolving into spring again.

For IWD2016

International Women’s Day 2016 – Pledge For Parity

I was trying to cut back a little on blogging during the week,

(Cracks in the Ceiling)

but I felt I had to write on March 8th, to say my piece, my peaceful piece.

🙂

Speaking of recognizing female voices…

Sophia Bush Speaks Her Mind On Feminism

For the discovery of a new song and artist.

She came on the local college radio station and I immediately liked the song, its signature Electropop sound.

I looked into her further later and discovered I knew one of her songs already, but I found a new favourite.

Halsey is another young and emerging artist, like Lorde for example, but she has a definite Ellie sound to her.

I am happy to have found another like Ellie Goulding, but a change from Goulding too because sometimes certain memories that go along with a specific singer or voice can still hold painful recollections. I’ve found a new voice to focus on for a while, even though I will always love Ellie in a way nobody else can top.

For bookstores.

I love standing in them. I love being surrounded by my favourite things, books, but I can only be in them for a short time before the fact that I am unable to simply reach out, grab a book, and start to read will wash over me and I will realize my limitations. It is at this point that I am thankful and grateful, but I must flee because the urge to burst into tears becomes a difficult one to hold back.

For World Kidney Day

Exactly twenty years ago was when I was first diagnosed with kidney failure. It was March, 1996, and finally my family doc sent me to a paediatric specialist, who immediately confirmed what my blood tests already showed. I was very sick and needed dialysis within a few months.

That was a scary time and, even all these years later, I will never forget what it felt like to be so ill.

For the option of doing dialysis to treat end-stage renal failure, like the kind I was in twenty years ago.

I am lucky to have a kidney from my father, for nineteen years now, and I was lucky, at that time, that there was such thing as dialysis as a treatment for kidney failure. Other organ failure did not and does not have just such a stabilizing treatment option, which is no cure, but is better than nothing, better than the alternative. I am lucky to be here.

For a successful visit in Washington, D.C. between the first families of the US and Canada.

The two men (Justin Trudeau and Barack Obama) they are a lot alike, see the world similarly.

No matter what else is going on with the US and their elections for a new president for November, now, in Washington, I liked to see peace, lighthearted humour, and harmonious relations between our two countries.

Trudeau might just be starting his time in office, while Obama and his rational good sense is on the way out, but I just liked the week that was. It made a nice “bookend” to the interview that started my week off right.

Finally, for the fact that I seem to be able to escape many people’s issue with losing that hour last night.

I had a nasty headache, sure, but I really don’t think I can blame that on Daylight Savings.

I woke up in the middle of the night last night from the pain, but I usually don’t detect a problem in my sleep pattern.

I am choosing to give this whole Daylight Saving thing the benefit of the doubt because I get headaches all the time, and I have a feeling I can place the blame squarely on something else entirely.

As I finished off my weekend and welcomed the lost hour and its additional light to come, my head began to pound. This song and all the signs of spring promise better days ahead.

Haunting – Halsey

In this song Halsey speaks of “diving in deep” and the song ends off with her, or it sounds like she is under water, scuba diving. It’s awesome!

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Blogging, Guest Blogs and Featured Spotlights, Memoir and Reflections, Piece of Cake, SoCS

Sack Sick Suck, #SoCS

Linda is the chooser of the SoCS prompts every week and I am glad for that. I wouldn’t want to be responsible for this, but she does a fantastic job.

I have to admit, though, this week’s prompt was tricky for me, but I wanted not to miss it because this is the last one for 2015 and so I am taking a crack at it.

SoCS

I do love her contribution, as a thankful and a stream of consciousness thankful at that:

http://lindaghill.com/2015/12/26/socs-socks-socs/

I can totally relate to what she says, as I love my WordPress blog and those I choose to interact with here, but I did not know if anyone would want or care to read anything I had to say about socks.

I went with a strange title, all the four-letter words that are like “sock”, but that aren’t. I don’t like putting the actual prompt word or part of a word directly in the title of my post. Also, it just sounded nice, all those “S” words in a row, hissing like a snake, like the snake my brother has as a pet, which I would rather not touch, but I am getting off track here.

I hate wearing socks, but I also don’t like being barefoot. That is why I am glad I got a new pair of dog slippers, while out shopping with a friend a few weeks back. Slippers are like socks, but more comfortable. This pair is so soft inside and neat feeling out.

My feet/legs aren’t really meant for socks. I even go out without them, my feet right in my shoes or boots. I know, I know. This will get me sick, right?

My great grandmother believed in the old wives tale of if you don’t wear socks you will get kidney failure. Well, I got kidney failure, so I guess I should have listened to her.

I always lose socks when I do my laundry. I am sure I am not alone in that, a common one, so I should use those things that keep two socks together.

What are they called again? Can’t think now and no time for Google.

This would also eliminate the problem I have of being able to match socks. If they feel the same I normally have no problem, but it’s more my favourite fuzzy socks )not quite sock and not quite slipper) that I don’t know how to match, for all the coloured pairs I own.

I always hated stockings, a form of socks made especially as a torture for women and girls, in my humble opinion. They feel all cool when on, when in a dress, but me as a little girl hated how itchy I would eventually feel in them. I could wear knee socks or none at all. I wore more dresses as a little girl, but less so now. All so unfortunate, isn’t it?

🙂

I did think of the phrase, “knock your socks off” and I do enjoy that one quite a lot. Something has to be pretty amazing for me to break out that one.

I guess several things could have that effect: music, movies, books, chocolate, views, trips, people.

It’s one of those four-letter words, “sock”, that I run over and over in my mind, playing little word games with myself when I can’t sleep at night. Yeah, how exciting it must be to be inside my head, huh?

😉

When I first started seeing SoCS posts in my email, after I must have signed up to follow Linda’s blog, I did not yet understand what this whole Stream of Consciousness Saturday thing was. My laptop and phone’s voice that reads to me would sometimes say it in just such a way that SoCS sounded like socks, if you spell it out the way it sounds. See what I mean?

I know better now and glad I decided to investigate further. I kept hearing about this “socks/SoCS” thing and eventually I figured out what the initials meant for real. I am so glad I did.

Linking back and hope for a lot more Stream of Consciousness Saturday fun in 2016:

http://lindaghill.com/2015/12/25/the-friday-reminder-and-prompt-for-socs-dec-2615/

What a weird one to go out on for the year. I like that this particular prompt encourages the weirder the better.

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Guest Blogs and Featured Spotlights, History, Kerry's Causes, Memoir and Reflections, Piece of Cake, RIP, Special Occasions, The Redefining Disability Awareness Challenge

Redefining Disability, One Year Later: Glad To Be Here, Glad To Be Anywhere

Last week with

The Reality of My Own Perception, Or Something Like It

I can’t honestly say I actually answered the question, but I’ve been told that I made a strange kind of sense anyway.

I will try to give more of a straightforward answer to this week’s question.

But first, you can follow more about this challenge

Here.

***

Q: How has medical treatment and technology changed in your lifetime?

A: Blindness is not life threatening. Whether I was born in 2015, 1985, or 1905 – my life would be much different, without a lot of the modern technology I take for granted, but I would have survived.

I have seen an amazing eruption of invention for the technologies I depend on so very much, all within my lifetime of the past thirty-one years.

There is no cure for my sort of blindness. I try to stay away from fad ideas and don’t let myself hope for sight in my lifetime, but then I visit my eye doctor and he assumes I am up on the latest in gene therapies.

I am not.

He said the testing of gene therapy is coming along, which gives me hope for the future.

I didn’t have parents who rushed me all over the world, since discovering my blindness in the eighties, searching for desperate cures. I have lived my life, for the first several years, not really thinking of blindness in any medical terms at all. It was simply a part of me and my brother’s lives, a part of our family’s uniqueness.

I am glad for prednisone. It saved me from going completely blind back in the late nineties, I am sure of it.

In the eighties, technology like what I have now, it was in its infancy. Apple was nowhere near what it is today, for so many visually impaired and blind people everywhere.

The IBM computer we had in our family, in the early nineties, was equipped with the large print I required at that time. My brother could not see even that. His love for technology was, at that time, limited to tape recorders and stereos.

Now he is all about his technology and he has a knack for it. I, on the other hand, struggle with it, but would be nowhere without it.

We did okay, as children, without all the gadgets we now have. We had to lug around a brailler, so heavy it could break a toe or even a foot.

Now, the only thing that could break, if dropped, might be a cell phone.

I suppose there are advancements in research for blindness, but I don’t keep that close of an eye on that, to be honest. The eye, as a whole, has never really interested me. I couldn’t name all its parts, just because I happen to be blind.

I was born in a time before Internet and now I depend on it for so much, it’s scary to me sometimes, to think about ever going back, but I don’t see that being a problem.

What are my odds of seeing a cure for blindness in my lifetime?

It’s not as simple as that. The eye and the brain, although I am no expert, are truly complex systems. There are no simple answers.

I know medicine and technology are closely connected and related. We can’t really have the first without the second, and going forward the two will merge more and more.

As for more seriously life threatening matters, I am lucky there too.

Organ transplant was in its earliest of stages as well, when I was born. I waited until 1996-97 to need dialysis and a kidney transplant. I received both. If I had been needing it, just a few decades earlier, I probably wouldn’t be here now.

That thought first really hit me when we stood in line, for breakfast, at the resort in Florida for Wish Kids. It was our family trip to Disney. I was feeling uncomfortable. I looked all around at the children with deadly cancers and brain tumours. I did not think I should be included there. Then I knew the reality that I was lucky to be there or anywhere at all.

I am haunted by the stories my grandma used to tell me about her baby brother, the great-uncle I never got to meet.

She was twelve when he was born. She was sixteen when he died.

Her and her two older siblings must have loved having a new baby brother, but any joy there would have been did not last long.

I don’t know what the reality was. He was diagnosed with diabetes. I know insulin had been invented years before, but he did not get it.

Was it still so experimental? Was it not widely used? What chance would he have had to live if he had gotten some?

This was a poor, rural farm family. No easy access. His parents didn’t drag him around the world in search of some fad cure. He died at home, surrounded by his loved ones.

My grandma told me about her memories of her little brother, resting out in their front room, on the sofa as he grew sicker and sicker. His small body was building up with toxins. The sugars in his blood were taking their toll.

She’d been dating my grandfather for only a short time when her brother died. She cried on his shoulder, as I am sure the grief must have been terrible.

I don’t know what it must have been like for my great-grandfather and great-grandmother, to lose their baby.

I know what it’s like to feel nauseated and weak. I know how it feels to have horrible abdominal cramps racking you. I believe these symptoms of kidney failure are similar to what it must have been like, what it would be like to die a slow death from diabetes. I sometimes felt that I was doing that. I feel for that little boy, all those years ago, who must have suffered in his last days, on that couch. I can’t even imagine and yet I can, a little too much.

Blindness or no blindness, I wouldn’t have survived if I had been born much earlier than 1984 and I can’t forget that.

Both medicine and technology, whether I like it or not, play an important role in my life and always have.

The medications have improved for transplant. The future for kidney failure, I hope, is looking bright. I would love to get my sight, but I would love even more to never have to go back on dialysis or need another transplant in my life.

At least, this time around, I will have technology to keep me company.

***

I usually do these things on Mondays, but today is the first day of September and I started

The Redefining Disability Awareness Challenge

one year ago today,

Awareness

being my first post. I should complete the entire series of questions by the end of the year.

Next week:

Have recent advancements in medicine or technology had any affect on the way you manage your disability?

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Bucket List, Memoir and Reflections, Throw-back Thursday

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.

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Memoir Monday

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.

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Guest Blogs and Featured Spotlights, Kerry's Causes, Memoir Monday

Diagnosis and Treatment

Last week my parents answered a question about what it’s like having loved ones with disabilities in their lives and what that word means to them,

Here.

This week I will rejoin the discussion once more.

***

Q: What have your experiences been with medical treatment and/or therapy been like? Do you have positive, negative, or mixed feelings about your experiences?

A: I was diagnosed months after I was born and my vision remained stable for many years. I had the occasional eye check-up, but really I avoided the need for more treatments until my remaining vision began to suddenly and mysteriously slip away, when I was in the seventh grade.

I then found out, rather quickly and shockingly, what it was like to have lights constantly in my face. I would have been bothered by all the stinging drops and bright lights, if it weren’t for the fact that I was having terrible pain behind my eyes and I knew, even at age twelve, I was lucky to have some of the brightest minds in ophthalmology overseeing my case.

By this point I had wonderfully experienced parents who hadn’t been dragging me all over the place for miracle cures to my blindness. I didn’t see or experience a lot of negligence. I received excellent care.

As for my kidney failure I know how unexpected that all was and yet my parents still felt horribly that they didn’t do something sooner. How could they have known? They were raising their two blind children, but the rest kind of snuck up on us all.

***

It took us probably too long to diagnose your kidney disease because we thought it was because of stress and your blindness. Your previous diagnosis hampered finding your kidney failure.

When you feel something is different or not right, you search for the reason. Sometimes it can be a physical problem that can be fixed and it’s done. Other times you get a diagnosis that will affect you for the rest of your life. A diagnosis can be great relief because it explains all of your symptoms and you can focus on dealing with them and getting on with the rest of your life. Other times it can be overwhelming because it predicts possibly even more and complicated problems down the road.

***

Since I lost all that vision as a teenager I have kept the retinal specialist who treated me then. HE is the best at what he does, but I fear a future of undiagnosed and unpredictable vision loss. Things can only be handled with the right treatments and proper diagnosis up to a point.

***

Before I end today’s post I wanted to include something I found earlier, a post on a blog by another visually impaired blogger. It is a post about the topic of disabilities in the media and I know that is a big part of what Rose has been doing from the very start.

So please check out:

Adventures in Low Vision,

and

The Redefining Disability Awareness Challenge.

for more information and next Monday’s question:

Do you think that it’s more important to emphasize medical treatment, life skills, community integration, or a combination of these things?

I think I’ve kind of messed up the numbering of the Awareness Challenge questions from how Rose has them listed, only because I was doing a few in two parts.

🙂

I will try to get back on track or perhaps the numbering system went out the window long ago.

Such is life.

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