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.