Get into My World! Get Off My Blog [Hater]!

No. Not you! You, my sisters and brothers and distant compassionate readers of true interest, stay with me.

The word gets out. It's a life. It shouldn't have to be...

VULNERABILITY

And another, more psychologically based phrase, your...

MORBID CURIOSITY

You've missed the whole point of this blog. I'm writing about the rare and disorderly - my rarity, my non-compliant body, how all this affects me... us  - for this very reason. To end our feelings of vulnerability in the realm of those that are currently "whole", whose appointment books aren't littered with doctor's names and treatment, surgery, and procedure schedules, and personal reminders of who we are and what we do and what we did and what we should do. Knowledge, this shared intimacy, this bond I've created with you, should go beyond morbid curiosity, beyond pity and judgment. You should move beyond your fear of the different, the moderately deformed; our hearts are more whole, built and rebuilt, cemented and carpenter hinged, soldered and gorilla glued - so strong what's broken becomes unbreakable. I'm talking bones. I'm talking heart.

We, the different than you, the vertically challenged, the numb, the pained, the beat down, the dishonored, the disenfranchised, the differently abled are more able of heart than your life experience can provide.

To survive these lives is to be a superhero. We are ninjas and black belts of the earth and sky. We are divinity and soul that fills oceans and earth. We are richer than Oprah will ever be in dollars or sense [spelling intended]. We are reincarnations, multiple lives within however many years our bodies have sprawled this planet. We are astral projections. We are global realizations. We are strong. We have self-respect. We have accomplished the impossible. We are alive and smiling. We appreciate life more than you, and we probably enjoy it with more vim and verve too.

We deserve to be treated with respect.

So, if you've come here to "research me." To decide if I'm worthy of your time, a 2nd date, your consideration, your friendship, your purchase (of my artwork or neurochic)... you've come to the wrong place. This is for people who care. This is for people who want to learn more, to feel what we feel, to think what we think, to know what we know.

What Helped You Most After Your _______ Diagnosis?

I just skimmed a one-sided, but thought-provoking article by this title, the fill in the blank being Multiple Sclerosis, but this is an important question for all of us chronic illness-ers to ponder.

Perhaps it brings us a moment of miniature joy, perhaps a wholesome cry, perhaps an epic realization of hallucinogenic shamanic ritual proportions that makes it all make sense.

Regardless, the amount of comments on this article are filling quickly - I'm comment #34 and will paste it below - and I'd love to read, correction: we NEED to hear from those of you that choose to  add your perspective in the comments section on author Julie Stachowiak, Ph.D.'s About.com page for above mentioned article, or just here among friends.


While the article and responses are like a straight line that needs some curves and hills, we - especially the stoic soloists in disease management - need to speak out. And we need not drop our heads in abandon (unless you're too tired to hold up your head) because we are alone.

I've always preferred collaboration, but I also craved the opportunity to be given the award of a solo for my extra sweat and infinite effort. It meant I arrived, graduated to another level; I was good enough; worthy.

I got used to working my ass off - literally - from a young age. As a dancer, if you want to make it, that's what you have to do. As a sicko, at a young age, or golden year, to be a true survivor - someone worthy of an encore, a cacophony of "bravo"s from the balcony, bouquets of flowers thrown at your feet from strangers and admirers - you have to be tough as shit wittling it's way from the cage of a stomach with gastroparesis.

Sick, I know.

But isn't that the point?! And isn't it the truth?

While, I've lost my need for stage presence, (and ability...) for perfect quadruple pirouettes or catapulting my body over another, I'm an olympian when it comes to navigating the triple sow cows (made up ice skating move) of my sicko-ensemble. I'm used to scraps and people's leftovers; to being the banged up tupperware that gets thrown in the freezer before it rots for good, or just tossed -tupperware and green fuzz - in the trash.

Do I see myself as someone else's trash?!

Yes and no. We've all been there. Trashed, pushed aside, forgotten, discarded, dumped, dejected, disowned by the people we love or like or like a little, just because we have something or things that are out of our control per their onset, but mostly in our control how we carry ourselves through the journey. Often times it doesn't matter which way we stumble - with grace or grumpiness; we're still left with our diagnosis (ses) as our only friend(s). Obviously, we need to broaden our social circle and not our disease panel, though sometimes the latter's inevitable, or both may go hand in hand... you never know.

SO WHAT HELPS?
Long rambling, short, I'm sick of being sick to other people and my appointment book. But I'm not gonna bitch about it beyond that. I have a therapist for that. (Highly recommended.)

As promised, here's my #34 comment. I hope you become a number on this page too - even if you're another hubby-is-my-savior-&/or-deserter-answer-er. We've all been screwed by the medical system, but here's our chance to turn that screw into a positive screw, and I could really use a positive screw... or two, or three, or.... That would really, really, really help, and it's doctor's orders.


MY RESPONSE COMMENT
Here's my sunny side of one of my neuro disorders response to Dr. Stachowski's article.

(34) NeuroDetour says:

My story is a little different. In 2008 I was partially paralyzed by a rare demyelinating disorder called Transverse Myelitis(TM), which is sort of like the opposite of MS, and has a 2-year recovery period. What you are left with in the end is what you have and 30% of us remain wheelchair- or bed-bound and on feeding tubes. Because of its rarity, my insurance denied coverage to the limited and integral treatment I needed, calling it “experimental”. When there are only 30,000 people in the US with a disorder, of course everything is experimental.

During our legal battle, I lost most of my functionality and I went 99% blind. Nine months after my initial TM diagnosis, my doc called with an apologetic tone; my MRIs and LP proved MS, which was caused by the TM.

Although my first disorder with an “ending” (but it turns out I’m in the 3% that has recurring TM) turned into a lifetime without prognosis, in many ways this diagnosis has been a relief.

The treatments for MS, such as IVIg & Plasmapharesis, overlap with the limited treatments for Transverse Myelitis. With my MS diagnosis, I never again (for the most part) had to fight the drug companies – for major or minor treatments, surgeries, meds. When in doubt, having MS has made my struggles with my other neurological disorders simplified. I have a total of 3; 2 of which are rare, therefore getting treatment approval is a secondary battle to battling the disorders themselves.

And living with chronic illness, any access to a simplified life is a good life… a better life.