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.

Awareness

On this Labour Day it is the start of a new month and a new week. I have two subjects I want to address on this first day of the new month because they are both extremely important in my own life.

September is Pain Awareness Month and I could write forever on this issue. This is all based mostly in the US. Often times these things do not all fall on the same month, week, or days in other countries around the world, including Canada. I know there are months for every condition and having a blog and experience with so many of them gives me an endless stream of posting ideas, but I will take any chance to speak up and not remain silent anymore.

I have been dealing with different and widely varied forms of chronic pain for half my life. There hasn’t been a time where some part of my body hasn’t hurt, causing me great distress and misery.

So many nights I have spent up, mind racing, doing anything I could to distract myself out of my physical discomfort. I say discomfort, using a common word doctors throw out there on examination. I am doing this to highlight the solitary suffering that only the one experiencing the pain can truly know. All these buzz words to describe that suffering are just that, words; however, the best tools I have are words. I don’t know how to bring others into the loneliness I have felt over the past several years without using them.

I hope to post more on this important cause in the weeks and months to come.

You can learn more about what Canada is doing when, where, and how:

here

and

here.

Also, check out an amazing advocate’s Facebook page with a catchy title for a tricky and unwanted intruder in so many people’s lives.

STOP THE STIGMA.

***

Through my blog searches I came across a woman’s blog and a project she has been launching. I immediately wanted to take part.

Her name is Rose B. Fischer and she has started crucial discussions on topics of people with disabilities and characters with disabilities being better represented in story and in media.

I sometimes think we are doing well with all this, but as someone who has been blind all my life I don’t know if that’s really true. It mostly depends on the kind of day I’m having when I think about it.

I didn’t want to make this blog strictly about any disability, but I can’t sit back and say nothing.

Here is my first answer to the questions Rose has posed and I will be answering as many as I can for as many Mondays as I possibly can, to hopefully do my part and spread the word that we can do better to help make this world a more inclusive place.

Redefining Disability Awareness Challenge: Week One, Part A

Q: What is your experience with disability? do you have disabilities?

A: My experience with disability has been going on my whole life. I live it and breathe it every single day, but work to make the most of life in spite of it. I sometimes long to dismantle the term “disability”, but then I realize that I can’t fight some things and try to work with what I’ve got and to just go with it.

I was born blind and so was my brother. I was born three years before he was, so my parents eventually had the two of us on their hands, not to mention their two sighted older children.

For many years my diagnosis was something called Leber’s Congenital Amaurosis and my vision really didn’t change. I grew up and lived a pretty normal life with my family. I had a great mother and father from the start, which I think makes all the difference in the world.

I went to my neighbourhood schools with my sighted peers and that, although not without its challenges, made all the difference as well.

Once I hit twelve-years-old I had other health conditions come into the picture and the total diagnosis was changed, or expanded to include a rare set of conditions, grouped together and called

Senior-Loken Syndrome,

involving both the eyes and the kidneys.

Over the years I have lost more vision and I do not enjoy the amount of sight I once had. I have lost the ability to read large print and to see colours. This hasn’t been easy and I fear I will lose the little remaining sight I currently have.

More on my eye condition can be found:

Here.

But my experiences haven’t always been bad. I am lucky and I know it, to be a person with a disability or two, living in Canada because, no matter what, things could always be worse.

You can find more information on Rose’s challenge:

Here.

And stay tuned for next Monday’s answer (Part B) to the question:

Do you have loved ones with disabilities? Do you work with people who have disabilities?

This will be answered by my amazingly strong and brave parents.