Blogging, Guest Blogs and Featured Spotlights, Spotlight Saturday, The Redefining Disability Awareness Challenge

Pocket Full of Miracles, #Apple #iPhone #AtoZChallenge

I haven’t done this before. I likely won’t follow the rules because I sometimes like to break those.

i83WyMT.jpg

But I wanted to try this, to have fun with it, and so here I go.

My theme, on my first try, will be whatever I feel like, as random as random can be, though I am sure I missed the theme reveal.

An item I own that can do all my iPhone can do is a miracle, when I think back to technology growing up.

It is my communication with the outside world. Communication device in my pocket. It is my answer to most questions. It talks and I must use the touch screen, dictate, swipe left and swipe right.

Thank you, Apple, for giving me the keys to a world filled with possibility. And for being the first: “A” entry in
April’s A to Z Challenge
and I know I will miss something, but I am taking it one day at a time.

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Peeps! #TGIF #FTSF

I went for the slang for my title this week, for people, but because Easter is near, all I thought about was the boyfriend from my past who loved those marshmallow bunny treats. He got so excited when he found coloured ones, and there could have been strange flavours too. He bought many packs and some went stale in the pantry.

I never could stand the things, those Peeps. Not my choice for an Easter treat. Give me some good old Easter chocolate, thank you very much.

But I like the alternative word for people.

The people we meet change us. At least, they have me, but choosing only some felt like an impossible task. Otherwise, I knew this post had the frightening potential of going on far too long and losing its impact on any perspective readers.

I started with my Easter story to begin with, to fit one more of those people in, ever so briefly, but this post isn’t about that. I simply could not neglect the connection between Peeps and peeps while I had it, right there and ready to go.

Whether it’s a chance meeting, one that lasts only minutes or hours, or one that develops into something longer term I could spend this post thanking people, as I did for my one year of blogging here.

Kind and Generous

My brother met a friend by being in an Apple store. The friend saw two blind guys looking at technology and made the decision to approach them and introduce herself. These were three people that never would have met each other and just so happened to be in that store at the same time.

I previously mentioned the kind woman and her husband who helped me out, in the Dallas Airport, out of the goodness of their hearts.

I want to write about the people I met at the writing workshop in Mexico in January. Each of them are fondly known to me now, all those I will never forget, for the things they taught me that week.

That, too, would take more than this here post. I am still working on the brevity thing. They all deserve their thanks and time. Perhaps this should be a “The People We Meet” series.

I like to sit and think, when I can’t decide which of them to write about first, on the people I’m still to meet in my life. It’s those I am not yet aware of that fascinate me, nearly as much as those I already know, because we are all unknown to one another until we’re not. Maybe that’s a sign of never being satisfied with what I have, with all those connections I’ve already been lucky to have made, but my curious mind can’t help it.

Every time a car passes I wonder who’s in it, what they like or dislike, or what they value in life. Though I may likely never know the answer to my questions about those currently passing my house in their vehicles, I will never stop wandering through life, open to any people, just as those I’ve already met were once unknown to me and me them.

So much of what is going on in the world is us all being scared, by perceived fears of terrorism or mass human migrations or whatever, but mostly by the fear of the unknown and the unfamiliar. We need to familiarize ourselves with other people. You just never know when a person you randomly meet could become one of your favourite peeps one day. This means I can capitalize the word, as mine in my own life certainly deserve that – a position to be in, so sweet, sweeter than any marshmallow.

They could eventually become someone who makes you laugh, makes you think, or makes you want to become a better human being yourself. I know all this is and has been true for me, with Mexico only one of the more recent prime examples.

For the sake of choosing one, I will focus this time on my writing mentor.

We met over social media and here online, developed a respect for each other and our writing, with a mentorship coming from that.

But it wasn’t until we met in person, were able to hug each other, and feel the physical presence of one another in the same place did I truly appreciate it all for what it was and what it could be. I will always have the greatest respect and admiration for her, with everything she does, no matter what else may happen or where life may take us.

Again, I resort to wanting to thank people, and so I wish I could lay out precisely how meeting so many of the people I’ve been privileged to meet has affected my life and the woman I am.

Most recently it’s neighbours. I am not the best neighbour, but I don’t play loud music – anymore.

I am not a bad person to live next to, especially if you like your peace and quiet. In fact, you might hardly even believe anyone (myself) even lived there.

I find it difficult, without seeing, to make first contact. It’s funny how you can be in the right place at the right time, one small window of it, and meet someone, but you could also live next door to people for years and never really speak to or know them. This time, my new neighbour introduced herself and seems to be looking out for me, before we’ve gotten to speak more than a handful of times. I take this to be a positive sign of things to come.

I may have blown it this time, with my Finish the Sentence Friday post being all over the place, but I blame that on a stomach ache and brain so full of swirling thought and a neurotic mind that thought I needed to write my FTSF post on a Friday, instead of giving it a day or two, in the hopes that I could ever possibly narrow down my stories of the people I’ve met to one lone blog post.

Plus, I had a violin lesson today and that always affects me. If it was a lesson where I couldn’t focus and nothing seemed to be working, I would feel dejected. In today’s case though, I felt it working and now I am feeling exhilarated, which both ways means I am all over the map.

While speaking of violin lessons, my violin teacher is another one of those cases of the people I am lucky to have met. Today we had a long talk about a lot, half deep violin discussion/related and assorted subject matter and half actual practicing.

I’m just glad I at least wrote something this week. I guess it’s easier sometimes to write about other people, while avoiding myself, but in the process I hope I show a glimpse of me in there somewhere too.

Thanks Kristi.

Finding Ninee is one of those peeps I have not yet met in person, but whom I feel a special bit of a bond with, just through this blogging thing and such, for the fighting she does for her son, as any parent should. I really need to write an article, one where I interview my own mother, Kristi, and other parents of children with disabilities or special needs. They are good peeps…some of the best out there.

Joining Kristi for this week’s FTSF is
Marda Sikora
who also writes about this subject.

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TToT: Wave Form Audio – Drop and Drag, #10Thankful #RoaldDahl100

“Don’t analyze. Don’t analyze. Don’t go that way. Don’t live that way. That would paralyze your evolution.”

Analyze – The Cranberries

I love autumn and am glad when the days cool off from oppressive summer heat waves. Lots of waves. Waves at the beach this past summer. Waves of fear that I am making wrong choices or not making choices out of fear to begin with. There are audio waves too, I’m learning. Letting that wash over me.

September has arrived and I feel a lot of pressure. I feel tense a lot. I feel the turmoil going on everywhere around me, in this giant and complex world. I try to find my place in it. I try to not allow things I have no control over to drive me to even more stress and distraction. Such anxieties are common, universal, and I can get through and keep moving forward.

And so, here I am, I will try not to analyze everything and I am more thankful than ever.

I am thankful for the perfect title for an essay I’m working on.

It was provided by one of my brother’s friends on Facebook.

I know. I know. I need to finish writing the entire essay, but I get inspiration and a direction to my essays if I have the right title to begin with.

This one is just so perfect, so fitting, and then I took his idea and I ran with it.

I am thankful I have started to learn a new song on my violin. It’s a special one, something I’m learning for someone special who’s on the way, before we know it.

This required I start playing a new string, the D string. Up until now I was only playing on half of my strings, E and A, but now I need to learn to move my fingers over just a little more and to hold my bow on a slightly differing angle.

I am thankful to have such a smart niece, one who seems wiser than her nearly six years on this planet and who knows how and when to ask the right questions.

Okay, so she may have done that thing where you answer a question with another question, but when you have something important to ask, I say go for it.

I am thankful that we got the second episode of our podcast all done and recorded.

All we need to do now is a little bit of editing. We were aiming to keep Ketchup On Pancakes at sixty minutes, which episode one just magically seemed to be. This one’s looking more like seventy minutes, but we think we can cut it down a bit more before we release it.

We just need to research more about podcast platforms and how it all works.

I’m thankful, especially, that we got one segment in particular completed.

We decided to read one of the short stories I’d previously written on my blog, as more of a dramatic reading, and you don’t realize how difficult that is until you keep messing up words.

It took about eight or nine takes to get through the small story with the least amount of mistakes throughout. We were both reading from our braille devices and you can actually hear our fingers moving across the dots as they pop up, as we move through the lines. We decided we like that sound in the background.

I am thankful for awareness for pain.

It’s something I don’t talk a lot about on my blog. The stigma and judgments are out there and sometimes I feel like people don’t want to keep hearing about it.

September is Pain Awareness Month and I do believe that anyone living with pain should not have to hide away. I know that must sound contradictory, but I do believe fear of judgment is often what it boils down to.

I am thankful and grateful because I actually have a pretty wonderful support system, where others do not. I do want to bring this silent suffering out into the open.

I have found some things that help and that work to make things bearable, but I thought it worth mentioning at this time.

I am thankful for even more awareness of a different kind.

Whether it’s the awareness of feminist issues or disability awareness, this week I was reminded a lot and heard from those speaking out and up.

Rick Hansen Interview – CBC’s The National

Again, people fight it. They become angry and defensive, on both sides, but if you’ve never experienced something yourself, I would hope there would be compassion and a little understanding for something someone else may have gone through to make them feel they need to say something or do something.

There are some who say they don’t want to identify themselves as feminist. That probably means, once again, they haven’t had many problems with something, be that a woman who has lived a somewhat privileged life and has had no reason to feel the need to fight for something.

I don’t care what you call it. I call it feminism and people freak out. I use the word equality and it’s pointed out that nobody has total equality with everything. I just speak from my unique experiences. I’ve been lucky, but I’ve also felt extremely limited in the world. I am taking steps toward empowerment, but it’s not as easy as it might seem.

I am thankful for a relatively stress free visit to a school for the blind in a city not too far from me.

I did not go there for my education. I went there this week to check out some computer equipment, to see about getting some new technology.

A lot of that is now becoming more accessible with the introduction of Apple products. They don’t require, for the first time, extra software or programs to make things square. It’s all built in.

But there’s still the braille readers and they can be thousands of dollars. Here in Canada, in Ontario where I live, there is a governmental program which helps out with the cost.

I am thankful my nephew made it through his first full week of school.

We ask him if he likes school, if his teacher is nice, and we get mostly “yes” to our questions.

He’s probably wondering why we are so curious. Things are more likely to come out at more random moments, like the rocks from the playground he kept bringing home in his pockets, or the little girls who are likely a few years older than him and who help him with his backpack when it’s time to get off of the bus.

It’s both exciting and anxiety inducing. He’s getting so big. All the children in my life are.

I am thankful for the connection made possible through WhatsApp.

It’s how my friend living over in Ireland sends family back here in Canada photos and videos of her one-year-old daughter.

I am honoured to be added to such an exclusive group. She includes descriptions of the pictures when she sends them so I know what’s going on in them.

Oh, and, Happy Birthday Mr. Dahl, who would’ve turned 100 this week.

My grandfather Roald Dahl, the magician

This article written by his granddaughter in The Guardian made me miss my own grandfather, who never published a book, but who was a magical storyteller himself.

“I will not pretend I wasn’t petrified. I was. But mixed in with the awful fear was a glorious feeling of excitement. Most of the really exciting things we do in our lives scare us to death. They wouldn’t be exciting if they didn’t.” So says the boy hero of Danny, the champion of the world.

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TToT: Red Means Stop and Green Means Go – Daffodil Hill, #10Thankful

Guess what?

Back and Better Than Ever

I sit here, feeling the vibration of the music underfoot. The music comes up through the floor at my feet and the art is flowing all around me.

As for me, I have my tool back, the one which I need now, if I even hope to write, the thing closest to breathing. Music is that for those in my basement.

Times Like These

Music. Writing. Creativity. Art. It’s all necessary, to keep this world bright and hopeful. Or to keep me bright and hopeful at least.

I had been feeling the pressure to write, but lately I have been held back by old and dying technology. I managed to keep up with my favourite weekly posts – somehow.

😉

Until last week of course. But last week I finally through my hands up in the air in frustration, when I couldn’t deal with a computer that resisted my attempts. I hated to miss this place, but I just couldn’t do it anymore.

Help arrived just in time.

TEN THINGS OF THANKFUL

For all the things I spoke of at the start of this post.

I am thankful I can offer a practice space to my brother and his fellow musicians.

This house is more than capable of providing a place for the kind of sounds of their guitars, drums, and vocals.

For the chance to observe the art they create. They do it all. They write their songs and perform them. They make something, where once there was nothing. That is producing something of beauty, putting something of beauty back into the world, when so much is taken away every day.

For my generous parents.

They see when I am struggling. They gave me back my creativity, when something came along and took it away for a while there.

For my brother’s help.

He knows his stuff and helped me find what I needed.

And for helpful computer guys on the phone.

For a sweet sweet computer.

Apple is not the product for everybody, as it once wasn’t for me, but they make magic and technology becomes my friend and ally once more.

For the slickest of slick Bluetooth keyboards.

This thing is so light and it allows me to write.

🙂

For helpful second brother to help me get new technology set up and working.

I needed to get my blogging/journal program to work and that involves a lot of the know-how of which I do not possess.

My brother rescues me from extra headaches. Invaluable.

For learning my second song on the violin.

My brother showed me the first few notes, fairly similar to “Twinkle Twinkle”, which I first learned.

Then I went to my lesson and learned the rest of a second song, a surprise for someone I love coming up soon.

For helpful cab drivers.

I took one to my lesson. He was helpful and gave me his number, eager to take me back when I was done.

It sounded a bit odd at first, but I know there are kind people. I hate to not take them up on that kindness. Perhaps he just desperately needed my business, but I appreciated it.

He described the streets (for my own knowledge, he said) and told me to call for a ride, anytime.

For creativity and a new project in the works.

I had an idea to try doing a Podcast. It will be based around the sibling relationship with my brother.

I had the idea and he went to school to know how to record.

He knew how to set up microphones and record us. It reminded me of all the times he taped us as kids. Of course, pictures meant nothing to him. He never could see them. I wouldn’t see them for long. Recording our voices, our experiences, this was how we passed our time growing up and how we captured memories, now all kept on cassette tapes he still has today.

I want to create something new and maybe it will become something.

Perhaps nobody but me will want to hear the sort of discussions my brother and I have, but maybe, just maybe we can say something, share something, speak to something.

Fast Car – Tracy Chapman

This song was performed live, at an open mic night I went out to Friday evening. It was a beautiful version, but this one is the one I’ve always loved, the one that makes me tear up when I hear it, and of which I love to return to.

“So remember when we were driving, driving in your car. Speed so fast I felt like I was drunk. City lights laid out before us, and your arm felt nice wrapped round my shoulder. And I had a feeling that I belonged.. I had a feeling I could be someone…be someone…be someone.”

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TToT: Laborious, Notorious, Glorious – Go THANK Yourself! #10Thankful

“No man ever was glorious, who was not laborious.”
–Benjamin Franklin

10 THINGS OF THANKFUL

Someone asked me how my Labor Day was going and I wanted to answer with a little something different:

“laborious,” I replied.

🙂

A lot went on this week, both in my life and in my mind. School’s back in session, for my niece and my brother, and for me, in a way too.

September 11th was also remembered this week. I can’t believe it’s been fourteen years since 9/11 happened.

“To build may have to be the slow and laborious task of years. To destroy can be the thoughtless act of a single day.”
–Winston Churchill

It is thought that twenty-six Canadians lost their lives that day.

On the eve of 9/11, a rainbow appears in the sky over One World Trade Center in Manhattan.

Ten Things of Thankful:

For my latest travel writing piece to be published on the travel blog of someone I really admire.

Can you travel blind, crossing Ireland’s Carrick-a-rede- rope bridge?

Thank you, Megan, for giving me a second spot on your travel blog.

It has gotten dozens of RT’s on Twitter in the last week.

First it was our interview.

Can blind people travel?

Of course we can!

And now my guest post where I explain what taking a risk, is like, for me.

Night Swimming

It’s a little like swimming at night. I’ve long wanted to do this and I thought of it, again, on Labor Day.

It’s a bit of a frightening thing, the thought of being out there, at night. I guess it’s the way I live most of my life, stepping out, in the darkness of the unknown, but taking the plunge anyway.

For the chance to spend, what was said to be the hottest day of the year, in the water and so I didn’t even notice the heat they spoke of.

We decided to spend our Labor Day at the lake. We are lucky to live so close to all those fresh water sources.

For my flexibility.

In life, sure, I’m improving. However, I mean that literally because I have been told, by doctors on more than one occasion, that I am incredibly flexible. My muscular skeletal system can bend in strange directions.

So, when I decided to jump in the sand, right along with my nephew, I just so happened to land on a log that was sticking out at my feet.

Luckily my ankles are one of those highly flexible parts of my body and although I went down, landing hard in the sand, my ankle did turn over but did not sprain badly. I felt it go over sideways, but I have stretched out those muscles so much over the years, leaving little to no pain as a result.

The opportunity to chase seagulls with my nephew wasn’t to be missed. Just thankful I walked away from that and did not have to crawl back to the car on hands and knees.

🙂

For literacy and education.

International Literacy Day, 2015

I would be lost otherwise.

For the education we’re lucky enough to have in Canada, as my niece begins kindergarten this week.

She is smart and sharp and bright. She learns so much and loves to share it. She surprises us all with the things she’s learning everyday. and I know she will do amazing things as she grows.

https://m.youtube.com/watch?t=207&v=CQ2noSR1qdY

It’s a good thing John Oliver is not her teacher.

For the premier of the newest in late night television.

Late Show Recap

Stephen Colbert makes me smile and I look forward to his jokes and his unique style of interviews.

One of his first guests, on his very first week, was George Clooney. They discussed and even showed a clip of George’s new film: Decision Strike!

Sounds impressive, doesn’t it? Well, don’t go looking for it in theatres in the coming weeks or months, as it is only a fictional movie, as he did not actually have anything real to promote. Sounds impressive anyway.

With all the talk of the heating up of the late night show wars, now that Colbert has thrown his own hat into the ring, Stephen made light of this when he mentioned all the thoughtful first-week gifts the other late night comedians have been sending him. He joked that they could all be expecting the best thank you card ever, with the words: GO THANK YOURSELF, written in them.

TAKE THAT! … Jimmy, Jimmy, Conan, John, and the rest.

🙂

For whatever it was that got me a replacement battery for my iPhone 5 and finally, after talking about doing it for months.

I put it off for too long. Not sure why. I can actually go a whole day and my phone does not die, a beautiful thing. This will be necessary for my trip to Toronto later this month.

I went in one of those crazy Apple stores, so hip and which make me feel very uncool. They have the genius bar. Well, I was informed of some loophole which made it so I did not have to pay the $100 for a new battery. Okay by me.

🙂

It just so happened to be September 9th and the big reveal day for Apple. I did not upgrade to the newly revealed iPhone 6S. My iPhone 5 works just fine, but it’s amazing just how revolutionary the iPhone has been for so many, but for anyone who is visually impaired especially.

For the people, in my life, who have gone through the loss of a loved one to suicide. They teach me things, all the time, about survival and resilience.

World Suicide Prevention Day, 2015

Sometimes prevention isn’t possible, upon looking back, no matter what anyone could have done. That doesn’t mean we stop trying.

I know life is forever altered for them. It isn’t easy and life will never feel happy, truly happy again. I just hope they know someone is thinking about them, always.

Everybody Hurts

The day was such a beautiful one this year, the weather anyway.

“She had always wanted words, she loved them; grew up on them. Words gave her clarity, brought reason, shape.”
–Michael Ondaatje, The English Patient

For a dream come true – a dream of clarity, reason, and shape.

😉

First I was accepted into an anthology, with my short story: One Last Kiss.

Then it came out, on Amazon, but first only as an ebook.

It wasn’t until this week, finally, that I actually got to hold a print copy of the book in my own hands. I could feel the weight of it, turn the pages, and smell that signature bookish smell, all knowing my words could be found within. It is an indescribable feeling, a dream come true for me, and I will never forget what that felt like.

kerrsbook-closeup-2015-09-12-11-45.jpg

For a friend, somebody there on the day the book arrived in the mail. Someone to celebrate with.

We got Dairy Queen confetti cake blizzards to celebrate. Her five-month-old daughter sat, in her carrier, staring at me and I wanted to share, but unfortunately she isn’t eating ice cream, not just yet. I loved celebrating with her too, all the same.

🙂

Thanks, Mom, for bringing the book over.

For the best, most loving parents my nephew could ever have. And it all began on that warm day in September, back in 2009 – Happy Anniversary guys!

I will never forget that summer, that day, as long as I live. It was the day my sister had worked so hard for and looked so forward to. I got to be in the wedding party and was happy she allowed me to give a speech at the reception.

Storybook Love

My sister’s favourite movie is The Princess Bride and she wanted my uncle to sing the theme song from the film, at the wedding. It made it special, unique, and all hers. She wanted to get married in our back yard, of the home we grew up in. It was a wedding at home and meant so much to all of us.

Chasing Cars – Snow Patrol

For rainbows, literacy, firsts, celebrations, dreams, and anniversaries.

I am thankful I’ve gotten to share my words, more and more, in recent days and weeks. I guess, for me, the need to share my words with the world goes back to all that stuff I said about night swimming.

It’s scary, certainly, but the idea of being swept up and away, washed out there and with no sign or footprint to show that I was ever here, that is what I am most afraid of.

Sure, the chance for rejection is ever present in the present, but not nearly as great as that there could be no proof that I ever existed in the first place.

“I don’t know how long I kept at it…
I felt reasonably safe, stretched out on the floor, and lay quite still.
It didn’t seem to be summer anymore.”
–Sylvia Plath, The Bell Jar

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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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