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

IN YOUR FACE

Last Monday, for the

Redefining Disability Awareness Challenge,

I shared a wonderful post from my very own parents, which I called:

Literally.

Last week’s question was answered by my parents, from the perspective of raising not one, but two children with a disability. They will be back again next week with another thoughtful response, but this week it is my turn once more.

🙂

Week Three: Part A

Q: If you have a medical diagnosis, do you see yourself as having a disability? Why or why not?

A: I probably would not be here answering these questions if my answer were no.

🙂

I have had several of these in my lifetime. The main one was the LCA, see

Here.

Then there was the Senior-Loken Syndrome, which included the renal failure and scoliosis.

These, to say the least, made my teen years interesting ones.

I have had many different diagnosis suggestions from neurologists with the headaches and chronic pain I have dealt with over the last ten to fifteen years now. However, unlike the obvious medical signs that I am blind or that my kidneys stopped working or when an x-ray clearly showed signs of a curvature in the spine, chronic pain shows no signs that can be clearly and medically spotted.

All of this is true and yet, I can not let any of it weigh, drag, or generally bring me down for very long. Whether it’s one medically diagnosed disability or multiple, if it is at all possible to get on with the business of living, I would highly recommend doing so, to myself and anyone else out there.

I did not come up with the term and I do my best to deal with it in this society of labels.

I am so pleased to participate in this awareness challenge of disability because I know I must live life, not just with disability, but in spite of it. I have had it in some form all my life and this makes it very difficult to live in any sort of denial, not that I haven’t had my moments. It just becomes a part of you and something that it would do no good to refute. It’s not that it wouldn’t occur to me because I am human and I have my bad days, but I know I must take control of my own life, to take the power away from the cruelty and the harshness that living with the label of disability often causes.

Yes, the short answer is that I have disability as a part of my life and the person I am. This is the cold, hard, in-your-face reality of the situation. I look forward to getting further into the issues surrounding life with disability, with some of the questions I have yet to answer, in the weeks to come.

Check back next Monday for more.

Next week my two parents will be answering the following, Part B:

If you don’t have one, how do you view the concept of disability and the people in your life who have them?

***

Speaking of in-your-face.

🙂

With September being Chronic Pain Awareness Month I wanted to share here an initiative being organized by the ones fighting to lessen the stigma surrounding chronic pain and a new way to hopefully bring attention to this silent and invisible scourge.

I asked to do what I could to help migraine, headache, and chronic pain ambassador JP Summers, and this is what she had to say:

“Here is the information for the Pie Challenge. I hope we get some media attention for the sake of all of us that are tired of our condition not being considered severe.”

Please check out the links below to see what’s being done:

Twitter,

Facebook,

and

Website.

Of course this is a take on the:

Ice Bucket Challenge for ALS,

because every person has their own unique story of suffering and deserves to be heard and helped, whether it’s by way of ice cold water being poured over the head or a pie in the face.

Whatever works and get’s peoples’ attention, right?

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

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.

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