Thursday, October 8, 2009

Carnival of MS Bloggers #46


Disability, Poetry, and Superpowers

Are We Disabled?
by Jackie of MSunderstood

So I have struggled with this question often, mostly when its simply put on a form or something. Disabled...check yes or no. If only it were that easy.

I have this inner battle whenever I see this question put so nonchalantly on a piece of paper or a radio box online. I want more than a yes or no. I want lines. I want a "maybe" option. I want a "sometimes" option. I want a "depends on what day and what freaking time you're talking to me" option. I feel like maybe this is a really easy question for some people, but for me, and Dana and others its really effing hard to make it so cut and dry.

Perhaps they are specifically asking are you "legally" disabled, but if that was the case wouldn't it specify the "legal" part? Is disability reserved for those who carry handicapped parking permits? I suppose this just really comes down to what is disability? According to good old Wikipedia (which is totally trustworthy)


Well shit...who the fuck isn't disabled at sometime. Is disability in the mind of the beholder? There should be a scale of disability on forms like this. Either you check "no" or you get to rate your disability. I don't know. I just feel like, I never know what to say for those things. I also feel like its a catch 22 to answer it sometimes. I often find myself assessing to pros or cons to whatever answer I decide to give and whether or not that could be beneficial to me.

At this point in my disease progression, I suppose I would say that I am not disabled. But am I more disabled than the other 24 yr olds I know...most definitely. However what does my disability look like? Its not in a wheel chair, its not on oxygen, and it damn sure isn't bed ridden. But instead its the stereotypical MS symptoms...the invisible disability. Numbness, tingling, fatigue, and the constant mental battles that involve toting around multiple auto-immune diseases (and now a fantastic mystery that caused my heart problems).

What is disability to you? How do you answer these questions?

Poetry: 340 and Music
by Mary at Travelogue for the Universe

Three Four Oh


The code

Some one


Should describe what

I have and others have

And try to describe

By words

And symptoms

As varied

As the colors on a rainbow.


The international number

That doctors use

And insurance companies

Cringe at when they see

The number

That means expensive

Meds, treatments and tests

And a person who may not work

Long enough to pay it all back.


I looked for wisdom in that number

And some sign

That the number meant something to me

Or those others with what I have

That quirky strange set of symptoms no one can see but me right now

Some day perhaps I could be identified

By wheels or a cane or a staggering gait.

For now I can keep others from knowing

What I have


notes: "340" is the International Coding Term for Multiple Sclerosis. It is used for Doctors, Hospitals, billing, etc. In numerolgy it is reduced to "7" which is a very unique number. Am I over googling??? Oh, who cares....mary _____________________________________________________

If you could have any superpower, which would you choose?
A local radio show poses this question in a game called Blatant Stereotyping. From what I recall, the favorite answers are usually along the line of being invisible or able to read minds. Superpowers which seem likely to introduce more problems if you ask me. I'd never really contemplated which I'd choose because, well, it's pretend and I couldn't think of one that didn't serve up its own dilemmas. That is until the other morning.

Aside from an unfortunate stint working at 5 am talking to east coast folks about their retirement plans, I've never been a morning person. These days mornings can be downright wicked and this one had been harder than usual. I awoke in a deep fog struggling to come to the surface. The legs were already sporting buzzing and vibrating -- things that usually happen later in the day as my motor skills wind down. My mind began attempting a prediction of functioning for the day. And, I pondered whether any of this was documentation-worthy.

Whether futile or suggestive of neurotic tendencies, I document my daily symptoms and functioning. I'm still looking for clues and patterns in what my body serves up. I'd like to think that the documentation helps to point out things that were once new but have slowly slyly assimilated into my ever-evolving normal. I guess I'm secretly hoping to discover a clue that will be useful to docs. Something that might elicit more than their smile as they shrug their shoulders. Neurologists are somewhat justifiably vague folks.

So, back to that morning. I continued struggling to gain consciousness and movement for an hour or so. Providing a distraction, or possibly aiding in my goal, was my cat, Jake. Each time I awoke he was farther and farther from from me on the bed and sporting a look of disdain and contempt that only felines can dish out. What is it about us cat owners that we knowingly choose this sort of treatment over the steady loyalty and adoration of a dog? In any case, he was clear in his disapproval of my slothfulness and the delay in his feeding. But I digress.

The radio played in the background as I drove to work. I was still pondering how to document the differences in symptoms, how they'd changed from a few months ago, sensory vs. motor, and on and on went my mind until...If you could have any superpower, which would you choose?... jumped out at me from the radio. The woman chose reading others' minds. Doh! Really?! Do you really want to read your boss' mind, or worse, your significant other's mind? Please.

Then it hit me. Yeah, I know what superpower I want! How about if I could transfer my symptoms and functions (or lack thereof) to my doc for just 24 hours? She could get a realistic picture of what transpires for me, or rather inside of me, for a 24-hour period. It could be like a human-to-human plug and play USB function. Yeah, that's it! The checkups would be so much simpler. No rambling explanations. She could feel and assess for herself. My credibility factor would likely be raised significantly. Yeah, this is it! Hmm, but how would this work if all of her patients were doing this? She couldn't function. And, of all the docs I've met in the last few years, I really would not wish that on her. Wait, the other patients wouldn't have this superpower. So, that would be ok. Oh wait a minute. It's just pretend. I wouldn't have it either.

This concludes the 46th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 22, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 20, 2009.

Thank you.
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