Friday, August 14, 2009

Disabled? What? - I Will Have A Cheeseburger.

"Disabled". What? Let me say it again. ahem (me clearing my throat) okay, here goes: "disabled". Nope, can't wrap my mind around it. Let me get the true meaning of the word.

  1. Inoperative: a disabled vehicle.
  2. Impaired, as in physical functioning: a disabled veteran; disabled children.
n. (used with a pl. verb) Physically impaired people considered as a group: the physically disabled

I still don't like the flavor of it. Nope, not at all. Although, it is such that I am, in fact, disabled, amongst those with a disability. I have a disability. I am one of the people for whom 'The Americans With Disabilities Act represents. And thank goodness for those fine folks. I have a handicapped parking sticker. Oh yet another word. Handicapped. I must go look that word up. Be right back.

4. a physical or mental disability making participation in certain of the usual activities of daily living more difficult.

This definition seemed to fit best. I do think however that "usual activities" is quite vague and very subjective. Do you agree? This obvious sarcasm comes out in me from time to time. I am facing the test - and what a weird test it is. On the one hand I do not want to be labeled disabled, handicapped or be known as someone with a disability. And yet, not only do the words apply I have to prove the severity so my long term disability continues. Strange how 'they" expect the disabled to jump through hoops. Here's the bottom line. I can no longer perform my job. I hate to say it, but it is the God's honest truth. I can't do it any more. My evaluations and symptoms read something like this:-

Diagnosis - Multiple Sclerosis - since 6/30/04
- painful numbness/tingling in lower extremities requiring elevation of legs several times a day to alleviate
- extreme fatigue and overall weakness requiring rest and sleep several times a day to improve ability to function
- weakness in right leg which, if over-used, leg begins to drag .... and requires 24 hours to improve.
-patient can walk with assistance of walker with 4 wheels and a seat and or a cane in confined areas up to five minutes before requiring to sit. can stand up to five minutes.
- unpredictable painful spasms and muscle stiffness which take up to 20 minutes to relax
- poor concentration/focus - can involve in a task or project for approximately 30 minutes before focus is lost
-diminished vision - cannot read or be on a computer for more than 30 minutes or strain and blurriness occurs

Avonex injections
daily exercise for toning and balance as outlined by physical therapist
rest daily as symptoms require for fatigue and to alleviate pain of numbness and muscles
avoid heat
avoid stress
keep hydrated
symptoms can be managed if limits are followed. Symptoms will not improve. patient is not able to perform her job due to symptoms and managing of same.

So there you have it. Ick!

I do not feel all that disabled at home. And that's because I can manage my symptoms here, rest as needed, elevate my legs, sit quietly and watch nature, listen to music Out in the world, and certainly at work my limits/disability are so obvious.

I think we all have disabilities of one sort or another and we have to be honest about them and manage them as we should to be able to live as fully as we can. I know I have M S, and that it requires diligence on my part to manage. I also know that M S doesn't have me - and that I have freedoms in my life that are mine to enjoy every day. I have my weaker moments when I wrangle with "why" and give in to fear........and even entertain some self-pity from time to time. eeeeeewwwww I don't like that feeling at all! I know a few posts back I wrote about these upcoming months of testing in August and then meeting with my neurologist in September. Oh it is all so unsettling, so freeing, so frightening, so perfect in it's timing, so wondrous, so life-changing, so full of opportunity, so final, so new, so exciting, so sad, - it is a whirl of every emotion.
For today, I am status quo......I just enjoyed a burger and a beer in a frosty mug!!! Ah, paradise. Enjoy.............

Love Gail


Eileen said...

I would imagine a big part of you just doesn't believe or accept that you are disabled.
My cousin Jeanne Marie has MS, she was diagnosed in her early twenties with it and she's now in her early forties. And even with her limitations, she still says she can't believe it, and she does NOT consider herself disabled. She always says she's living a very able-bodied life with limitations!
You sound like you have much the same wonderful attitude.

I'm glad things worked out for you with being 'on disability', one less thing to have to focus on anyway.
Take care, Gail.
Love, Eileen

Wanda said...

You convinced me that you will be fine no matter what...I do see the conflict it presents at the time...trying quietly not to concentrate on any disabilities and at the same having to prove and say loudly "Yes I do have disabilities"...

I think you have great coping skills Gail...and can face any challenge MS brings your's hoping your attitude and strength keep it in a calm state...not meaning to minimize where you are now with it's effects...but to hope for the best "tomorrow".

I enjoy your views on things, even that touch of sarcasm that comes out time to time...and look forward to your next post!

Gail said...

Thank you for your understanding. I try and keep a positive attitude. I do okay.

Hi Wanda and thanks. I was thrilled about that cheeseburger and cold beer, Ah, nothin' better!

Love you both

The-Grizzled-But-Still-Incorrigible-Scribe-Himself! said...

Disabled? In a pig's eye! Impaired? More of the same sorry swine! Handicapped? Oink, oink, oink!

So you gimp around, lurch a bit, and have to sit frequently. I do too! Take the parking sticker and government check. Enjoy the benefits of both. Play their game…just don't buy into accepting their adjectives as the definition of you and your life.

Your worth is not in what you aren't or can't…but what you are and can; not the negative but the positive. The government wants to measure your glass as half-empty; but everyone's life is only as good as the half-full part.

Let all those negative words be theirs. Borrow them only when you must enter their negative realm. Think of it as putting on rubber boots and a waterproof slicker before you visit the local sewage plant. The operative word being VISIT, as in temporary, not staying around. Get the benefits due you and get the heck out of Dodge! Pronto. Leave the boots and slicker.

Go home. Take a shower or bath. Wash that negative stench away. Eat a cheeseburger.

Enjoy! Remember: Illegitimi non carborundum!

Gail said...

Hi Grizz-

"Thank you, a million "thank you's"
You roughly summed up my sentiments - and I mean roughly in a good way -

You described the conflict of thoughts amazingly well wow!

I know their criteria can't define "me" I define me. I am just so aware of how their criteria fits and so I have to be more aware, as well, of all that I am. phew.

Again, thank you SO much
love you

PENolan said...

We operate in a system that requires labels in order to provide services and funds. There must be codes to fill in blanks on the appropriate forms.

We had to do that with Velvet and the Special Education thing. Once you get the services and the funding, fuck them and their labels.

Rose Marie Raccioppi said...

What you have defined is not a "disability" - dis = not, away from ability... you are presently differently abled. Your creative responsiveness, your loving creed, your willingness to confront, these, the most humanistic of abilities are serving self, family and humanity.

A perspective that defines my educational work:

With blessings,

Rose Marie

Diana said...

Hi Gail, I am visiting your blog from Bernies blog. I must say that I really enjoyed your writing and your attitude. I hope you don't mind if I follow you as I find you very Interesting! It's hard to remain positive when in pain. You seem pretty amazing my friend!

Gail said...

Hi Diana and welcome,
It is SO okay that you are following and I am going over to your blog when I am through here. :-)

I am thrilled you like 'my style'. It you pioke around a bit to some earlier posts you will get a flavor of my "truths". Also, my 100th post, 8 back - has some recaps of hi-lites, so to spseak!!

I am honored you are here. I look forward to getting to know each other over time.

Love Gail

Gail said...

Hi Rose Marie -
I really really appreciate your words to me especially the words "differently abled" I love that so much. I will be visiting your learning website soon. "Thank you" so much for your insights, wisdom and strength.

Love to you

Gail said...

Hey Trish -
I love ya girl - I swear I do. :-)

And I hear ya on the labels imposed to fit criteria for funds - I know it oh so well. Thanks for the reminder though, clearly I needed it. You are such a 'kick-ass' - tell it straight gal and I LOVE THAT ABOUT YOU!!
Thanks SO much Trish
Love Gail

Whitemist said...

I find your courage encouraging. My issue was not a slow advance of a disease, but rather the removal of a certainly life threatening tumor that left me visually handicapped. I am still dealing with all the ramifications.
You have dealt with your a lot longer, but a easier and harder thing at the same time.

Gail said...

Hi Whitemist

It is all so bittersweet. Not sure if the slower onset or the immediate onset is better, worse, gosh, who knows, huh?
Either way we each have our battle to fight. I am glad we found each other - I feel a kinship with you.

Love and hope

Val said...

Yes. Eat that cheeseburger. Drink that beer. And know all is okay....

Fuck the labels, Gail. You are a cheeseburger eating, beer drinking, mistress of life and love and beauty. And you rock!

Gail said...

Hi Val-
your words made me smile from ear to ear :-)

"thank you" rock on....

Love to you

Gail said...

Hi ew Jenny and welcome-

Oh yes, lets gold on tight and speak loud our true, true colours.

Love to you

The Weight of Me said...

Ms. Gail -- woot & toot, I'm over visiting from Cinner's blog ... loved this post, from sarcasm to chee'burgah ... may I suggest a GYNORMOUS order of onion rings to accompany the next one? Onion rings, root beer, and chee'burgahs at the A&W drive in were my beloved Grandpa Andy's cureall for any woe, and it still works for me. YOU are gonna be fine, I can tell.

Gail said...

Hi 'Weight-of-me'
OOPS, I thought your comment went with the next post - so I wrote over on your blog how your comment didn't publish, but voila!! It certainly did. :-)

Love Gail