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.


I Wanna Be A Cheesy Pop Star

Despite the fact that I can't carry a note - the musical kind that requires born-to-be-heard-when-a-bomb-is-not-being-deployed vocal chords nor the physical kind that requires first that you remember what you want to write on the note to remember later and secondly that you remember later that you wrote a note (due to poor genetics and rampant Jewish inbreeding and then neuro soup neuropathic spasticity, pain, and enhanced physical and mental clumsiness), I wanna be a cheesy pop star.

Jeez, that sentence is about as close as I can get to doing the running man - another requirement of being a cheesy pop star.

Aside from all the obvious just-becauses, such as:
  • you're a-glamour-gimp-that-"dances"-to-a-really-really-really-different-drummer
  • honey-you'll-never-be-Cindy-Whitney-Britney-or-Barry Manilow-for-that-matter
  • chances-are-you'll-be-sleeping-when-you-should-be-gigging
  • nice-Jewish-girls-don't-show-their-Lady-Gaga-in-public
  • girl-you just wanna have fun- shuuuut uuuuuu'
I miss being a performer.

When I see cheesy pop stars performing on late night TV or in over-sexed videos dubbed over in German on You Tube, I want that leather jacket. I want an excuse other than, my brain is losing my vision to wear my sunglasses at night. (You know I can't resist....:)

AND, even though I thought I was ready to hang up my callused feet at 30 when my body gave me no other option, I miss being a performer. I could say, I miss being a dancer, but that's just too obvious, and I'm not sure if that's as accurate either.

To be or not to be?
Well, if whoever actually wrote that question was a performer, they'd know the answer.

When I was a performer, avant-garde and wacky as I was - whether it was dancing down the aisles in a paid performance at Whole Foods; rolling across the Benedum stage with the duke in Rigoletto (I even got a "nymph" (really, that was the title of my role) shout-out for the saucy sexiness of that in the review); dancing in my own works on small stages (for small audiences), street corners, and strange site-specific locations; or the handful of poetry readings that I gave... [OK, Melanie, we GET it] I "t0-be'd", i.e., to perform is to be mortal, or philosophically immortal (don't worry, I'm not gonna go there...again).

I existed! I was alive! Of course I was, I must have been if I were breathing that heavily. I actually liked to sweat, altho I could have lived without the slick glaze it mummified into as the clock struck 3 mojitos past post-performance.

I loved it all - from plies to performance. I secretly even liked the reviews - except for the bad ones, and luckily my career was cut short before I accrued more than 1 accost to my baby, my vision, my work, my lover (if you haven't figured it out, all of the previous my...s are referring to the SAME thing).

Bad review = devastation, yes. But, the show must go on, and it always did. And, the drama. Oh, the drama! There was usually more drama back stage than on stage, and 'tho as the director, I actually hated that part, I suffered through it for the ultimate payoff:

To be a performer. To make an impact. To share my joy with the thousands who travelled through the past-lives of my outreach work.

Aaaannnnd, if I were a pop star, I could truly say, my life sucks but I rock, with literal integrity.

That "hit" would be the neuro hit that keeps on hitting.

My dear fellow sickos:
if you're anything like me, you probably often feel as though you barely exist. If it weren't for the pain that reminds me my body is a body - as in human body and not all the other possible definitions of body that I'm too lazy to turn into cheeky, cheesy, pop star-worthy prose.

As a performer, I was real.
As a performer, I mattered (to a select few give or take...).
As a performer, I breathed deeply.
As a performer, I controlled my body.
As a performer, I had a bangin' body.

Damn, I miss those days. And I miss the precious people I performed with. These people, for the most part, were part of an elite class of childhood misfits that finally found their clique. As dancer or choreographer, I was part of something, of a zesty, zingy mini-community with such drive and dedication and passion, as an international movement to bring that other kind of movement to life, into its language, and offered to the living.

As a sicko, not only can I not legally drive, but it's hard to maintain that "drive" that once woke me after 2 hours of sleep to record my visions that would be translated and bloomed by my group of dancers and collaborators in the rehearsal studio.

Now that I'm post-Ketamine (more on the news behind the missing Ketamine Cam days 9 and 10 later) kaput and sans-oxy-soporific, my drive is stuttering, if not stalling out. And I need that drive to get better, to live a life as normal as possible, even though it's painfully true that the possibility of an end to this neuro mayhem is 99.9% implausible and that my new destiny is not to rock out before 1000's of admiring fans but mix vodka on the rocks with unmentionable meds to get even a bit of pain relief, but never - as science exists today - will I be fortuned to live a day without pain.

At least performances end. And if you're a lucky audience member, the program tells you approximately when, including potty or cig breaks as well.

Shameless, I know, but I'm including the promotional video from my performance, the Pittsburgh premiere of "Mission", that a) preceded my exit from the bright lights of regional fame (but on the brink of international stardom, of course), and b) lead to a not quite spread-to-thin (not in weight) Mel, as I soon dropped the dancer credit from my name. But, I'm in this one. Look for the bald girl.


The reason why there was no Ketamine Cam Day 9 or 10 is because I flunked out. I.e., during my Day 9 infusion, I had what you might call a "bad trip" that was explained as a bit of an overdose/system overload, so I was kindly kicked out of the clinic before the infusion would come to its natural conclusion; and in my psychotic state, comforted by the nicest neuro nurses and docs this side of PA.

  • Tomorrow, or rather today, I get bloodwork to check out the level of that oh so special K in my system.
  • Saturday, the 22nd is the Trenton Avenue Arts Fest. COME. BUY. HELP.
  • Next week IVIg continues.
  • Then Ketmaine infusion boosters begin the week after that, and on and on.
  • And, plasmapharesis, is next month, marking the deflowering of my fistula.

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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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