ABCs of Disability – The Letter A

A is for adversity.  Normally, adversity is viewed as a negative.  However, there are people who are amazingly proving this wrong.

I recently watched a video from TEDMED which is part of TED.  If you haven’t heard about TED, TED stands for Technology, Entertainment and Design and started out as a conference in 1984.   Now…

Along with two annual conferences — the TED Conference in Long Beach and Palm Springs each spring, and the TEDGlobal conference in Oxford UK each summer — TED includes the award-winning TEDTalks video site, the Open Translation Project and Open TV Project, the inspiring TED Fellows and TEDx programs, and the annual TED Prize.

Their about page explains:

On TED.com, we make the best talks and performances from TED and partners available to the world, for free. More than 700 TEDTalks are now available, with more added each week. All of the talks are subtitled in English, and many are subtitled in various languages. These videos are released under a Creative Commons license, so they can be freely shared and reposted.

This list of tags shows how diversified the talks have become.

The speaker in the video I watched is Aimee Mullins and was filmed in 2009.  Aimee is an amputee who was a record-breaker at the Paralympic Games in 1996, and she talks about adversity and how adversity can be used positively in life.

It is 22 minutes long but goes by really quickly.   I found her quite engaging and inspiring as she talks about her life, her disability and how words and language label us and affect our thinking.

Here’s the link to the video. There is also a link to a transcript on the right-hand side of the page.

Enjoy and be inspired!

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The ABCs of Disability – The Letter “S”

This Just In…

Having a chronic illness sucks!  With an “s”.

Having a chronic illness that is invisible really Sucks!

With a “bleeping” big, capital “S”.

I know I’m not saying anything that is earth-shattering.  But there are times when it needs to be said, even if it’s to ourselves.  Even when we’re having a good day.

Having an invisible, chronic illness is like living with a child who has temper tantrums.  Some days the child is really acting up, some days just lying low and a few precious days where everything is all right with the world.

For me, my main problem is vertigo. At 37 years of age I had to start learning to live with, and tolerate, the whims dictated by my inner problem child.   I don’t know when it will strike.  I can do very little to prevent it.

I feel like I’m in a strange, strange limbo.  I read other blogs where people have Meniere’s Disease and I am not on the same level as some of them.  I don’t get the vertigo so bad that I have to lay down for hours or days while throwing up.  My mother had Meniere’s Disease and she would suddenly yell to get the bucket because she would get dizzy and start to throw up.  She started leaving plastic bags in the glove compartment in case she would throw up.  Unless I’m feeling really drained, unbalanced or I’m sick, I can walk the couple of blocks to run an errand.

Yet, it’s bad enough that I can no longer work.  I have to keep my head looking forward as much as possible when I walk (which I now have to do at a slower pace) or sit.  I have to keep my head in my hand a lot of times to keep it still while I sit at my desk and lie down off and on during the day so I don’t get too tired or unbalanced.  I get most of my things online or get one of the people I live with to get me something.  I feel myself become unbalanced when the weather changes.  The weather!  Something else I can’t control.

For me, that’s one of the biggest problems which leads to some of the biggest fears that I’m learning to face.  I, like that temperamental child,  am out of control.   I can’t control my ears, can’t control my balance, have to plan to try to do things on certain days or, plan to try to not do too much if I know I have to go to an appointment.   Even though I try, many days I’m just not successful.   Can’t control this, can’t control that.  Can’t control my life.

Yoda was wrong when he said “Do or do not… there is no try”.   Some days, trying is the best we can do.

The ABCs of Disability

After all these years, I’m still not sure how I feel about being a person with a disability.  I know that once I got on disability, in ways, a whole new world opened up for me.  I had more options precisely because I am now labeled disabled and not just a person with something wrong with her .

But, mentally?

I still have days when the anger and frustration at not being healthy get the better of me.  One day I’m healthy,  feeling fine and going about my life.  And then the switch is turned to  “Throw  into land of disability.  Good luck with that”.  The range of emotions that take over is endless and always changing.

So, in a totally selfish and very deserving way, I’m going to start “talking” about the different emotions I’ve been feeling over the years and some different ways I’ve been dealing with everything.  Some  are bad, as you would expect.  Some have been powerful and helped me out during some dark times.    Some days are bright sunshine with nary a speed bump while other days are full of chaos, both mentally and physically.

I’ll probably have some really short posts at the beginning until I get used to writing about my feelings and actions.  I’m not sure how much I want to write in a public blog.  I’ll find out when I start, so this could get really interesting for me.

Because there comes a day where you need to acknowledge what you are feeling, what you are doing, are you learning anything and can you do it better.

And that time is now.