Living Obliquely

Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.
Similar to Multiple Sclerosis, it attacks your myelin, leading to painful and debilitating side effects.
About 33,000 Americans are currently disabled as a result of this rare neurological disorder.
Not one person with TM will ever know their prognosis.
I happen to be one of them.

I am a neurological soup. Since my TM diagnosis, I have developed encephalitis, MS, RSD/CRPS, Osteoporosis (I am 34, no 35, eek), and Chronic Anemia. sucks, but I still rock.


Hey Yinz and Non-Yinzers, Just a "Quickie"

Hey Yinz* Guys,
Pittsburgh: as Seen in Tourism Brochures

I'm writing you from Allegheny's county seat: the grave Pittsburgh of gray skies and killer rivers; of old wealth and Welfare; 446 bridges - a sturdy claim of its singularity - flanked by pot-holed streets made grayer with murky rain and snow and coal-stained buildings that reminisce booming days of blue-collar money and the ultra-wealth of steel, as though both - the city's gothic architecture and its Vitamin D-insufficient faces (what few I see from my room, in this non-gimp friendly city of hills and 'hoods) - still mourn, gray tears - will forever mourn - a proudly proletariat industry that would have made its people and neighborhoods the Hollywood of steel.

A GRAY LIFE IN A GRAY HOMETOWN NEAR A BEAUTIFUL PARK THAT'S LEFT AND IT SUCKS: a tangent from the quickie, for those who like it longer and, yes, it's appropriate here, harder
At "home" - a gray IV pole stands on gray basement carpet, and a devastatingly glorious neighborhood view - despite its classification as The City. Backyards with old wood fences, naked trees, preceded by bigger and older naked trees that circuitously lead to any one of its ubiquitous natural parks that changed me, that changed my world.

Once upon a time, Frick Park was my mistress, my paramour, my other half. Always my lifeline, I wouldn't live anywhere that wasn't within walking distance to one of its entrances.

Now, no matter what the season, it's too rich with tiny mountains of stony hills and narrow sloping paths, where I, probably not alone, walked right into daily peace, a heavy-breathed hike that gifted me with revelatory visions of dances completed and personal philosophies blossomed into manifestos. Every inhale and exhale, each person, each animal passing by, an accidental conversation with a stranger, or a friend you've known for years but never knew your shared adoration for the trails and all its live-in animals and bugs and all the people and animals that visited daily or infrequently to get their dose of whatever the Appalachian's remnants gave them.

Unlike me, Frick park was protected by the city's old wealth, which also happened to share its name and closet many unpunished atrocities. I guess that for every death resulted from their whim of the week, they must have planted a tree, the only penance they knew how to live with, and the gray city slowly became a little bit greener.

Being in Pittsburgh, now 4 weeks and counting, for a balanced mix of medical and familial demands, and sitting here in the gray basement ala bedsit with Frick Park less than 2 miles away, is like knowing your High school sweetheart, who you married after college, and you lived in love in a beautiful house in a beautiful city with beautiful friends that you made together, and at 30 he left you just because, or that's what you tell yourself to make it easier to accept.

No matter the reason. It fucking sucks.

Even though Frick Park and the Fricks' endowments actually supported me with commissions and performance fees, and their grounds and homes and galleries are nearby, we are separated, and that's not my choosing. Do you know that feeling? Of something broken that you want to fix, and you have almost all the pieces and almost all the tools, but you're screwed because those missing bits are exactly what you need to fix, to get back what you want, that something that's almost whole, but you're powerless, because you just don't have everything that it takes to get what you want; to have the life that you spent your entire life creating.

When the Neuro Gods struck, they bankrupted me and took my Frick Park.

AND OUT OF THE WOODS: There's a world in disguise, or inside of (me)...
Although I have a backlog of about 5 posts (just counting those here in neuro land) that still need editing**, finished thoughts lost in neuro black holes, and a little TLC before I release them to you, I wanted to send out a quick update about my latest "quickie" and other things 'burghian. As I'm often told, I'm thoughtful like that.

As you are used to, if not expectant of, my vicious honesty and transparency, today was the first day of many days of a brand new component to my neuro detour (which by the way, you probably have figured out, is becoming the longest detour I've ever experienced, or perhaps even in the history of fierce, successful-ish, (dare I) sexy-ish (oh, yes! say it loud and proud with neo-feminism!), multi-talented, multi-tasker (no more, boo hoo), ultra bright (as in my skin glows day and night, and i have a pretty decent IQ), visionary, petite and on the pretty side, half her age looking, frequently carded at age 35  woman with a plan, or actually many plans that she could recite on command(o) on the planet called Earth, where she once resided***).
Step: Preparation; Photo Credit: Me

Today, with cute undies off, supine, legs akimbo, facing my mother's mirrored closet doors, my Pittsburgh nurse, Pam, (it's IVIg week) whipped out the sterile gloves, spread me apart, gave me my latest-in-life anatomy lesson, and taught me how to self-catheterize.

And then, as omnisciently stated in the title above, I kindly thanked her for the quickie, and invited her to join me in the garage for "the after cigarette," of her answer, I shall not comment.

Not only did I just say it - all of it: cath, me, quickie, oh my! - I documented the entire strangely humbling process with step-by-step photos. (Somebody should really pitch in and get me an SLR already, doncha* think?)

By Lesson 2, I'll be doing it single-handed, so to speak. More documentary photographs to come (without which my short-term memory would leave me and my cath kits without a clue), and I'll post all slightly less than NR(neruo rated) on Neuro Detour's Flick'r page, if there's video, on You Tube too.

Why, all of a sudden after almost 2 1/2 years of regular UTIs, bladder infections, and a diagnosed neurogenic (spastic) bladder, have I received this icky (ahhhhh...well, at least some one's touching my vagina) order?

Because the good ol' urethra's stopped tickin' on its own.

So, fellow neuro-ites, I've joined the minions. And for you non neuro-ites, we TM-ers and MS-ers and other neuro-ers, often have a multitude of bladder issues (bowel too, but that's a secret between me and you, ok), of which I can proudly say, I've probably seen, i.e., had, them all now.

As, we say, her in 'da 'burgh*...

Step: Holy Shit! Ouch, ouch!; Photo Credit: Me

Melanie of the Self-Catheterizing Minions

PS This is just the "tip" of things...

PPS  Happy New Moments Everyone!

PPPS The answers to all your stars below


**Not Pittsburghese. In Pittsburgh, there are no linking verbs. The phrase would be, "needs edited," sort of like our other favorite, the [insert item, e.g., car, clothes, etc.] needs warshed.

***I am not conceited, I mean it. I'm just repeating things I've been told an' 'at*.

1 comment:

  1. Welcome to the INO club! :-D At least you have a sense of humor about it!


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If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (, a new social networking group that I started for people with TM so that we can meet and chat casually. It's only on Facebook for now, so, if you haven't already, join. It's easy.


In Pictures

Please Note: Some photos may contain partial nudity or depictions of medical procedures. Though I am in many of these photos, my reason for sharing these personal photos is to promote awareness, understanding, and advocacy for people with TM and other rare diseases.
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