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.


What a Feeling!: all Flash, not so much Dance


My childhood girlfriends and I loved Flashdance. Still do. Although, I wouldn't dare watch it today because, as a recently disabled person (7 months and counting!), that "feeling" isn't one I'm ready or willing to confront.

In 1983, I was 8 yrs old, and I already knew what I wanted: I was going to be a dancer, and even though I didn't yet know the word choreographer, I was going to make dances and live my life by "the feeling" because there was no better feeling than dancing. Jennifer Beals represented everything my trio of dancing BFFs wanted to be:

Tough as a man by day.
Struggling dance success story by night or by whatever means possible.

And we danced and danced and danced to the Flashdance soundtrack until each of our cassette tapes wore out, and then we went to Monroeville Mall and bought them again.

We could never have too much flash or dance. And if that ain't a universal truth, it damn well should be.

Though we all took different paths in life, and I - probably the least naturally talented dancer of the three of us - did fulfill that childhood dream, we are still BFFs, and, especially in my situation, that's a "feeling" worth dancing about...

Even if it's an awkward, disjointed, cane-dance.
Even if it means a day or two of couch-potato-inducing pain.
Even if it makes me want to cry that each limb and extremity in my body is listening to its own MP3...with headphones.

Bette Midler meets Marilyn Manson meets Depeche Mode meets Coltrane meets John Zorn meets Stevie Wonder meets Beastie Boys meets Beyoncé meets Barry Manilow (Jewish moms everywhere rejoice!) meets Justin Timberlake meets Liberace (loved him...don't laugh) meets dog barking on street, and you have a....
Transverse Myelitis (TM) body on the dance floor.
Cane "Dancing"
Pretty funky, huh? Now that's experimental dance...some things never change after all.


Now I'm 33, and over the last four years my body began an escalating rebellion against the "feeling" - that dancing feeling that I, like most dancers, wanted to bottle, pickle, and preserve for eternity.

Instead of spending my days in the studio, cleansing my body with sweat, spirited by the immediate gratification of movement and its endless (but limited) potential, loving (I mean I heart heart heart kind of loving) the process of mind/body discovery, and ultimately sculpting what movement was worth remembering into a dance worthy of a stage, I now spend the majority of my days at home or in the hospital or in a doctor's office, attached to some machine or expectation.

And while this is not a universal truth, it is simply a fact. In other words, it may sound like I'm whining, but I'm not. I assure you.

Do I hate my life? sometimes
Do I hate my body? sometimes
Do I love my body? occasionally, but only because I know I should (happy thoughts people!)
Am I miserable? from time to time
Am I grateful? ditto, but only because I've (been lucky enough???????) to have had "life experiences" that enable me to understand the theory of relativity

And speaking of relativity, I still have one thing in common with the Old Mel Body - we both have/are devoting our lives to pushing through our own physical limitations.


I wake up with pains, I spasm, I tingle (and not the XXX-rating-worthy-tingling-kind-of-tingle), I ache, I burn, I am on fire, I fall, I stumble, I hit my head on toilet seats (thank goodness for good manners), I speak in word stews, I can't tell stories (but I can write them), I get blood-in-the-toilet UTIs because I've lost that lovin' feelin' (tho I haven't lost the love), I leak, I pee in public (yes, I know there's a thing called a bathroom), I have orgasmed over the toilet (gasp!...I am too old to wet the bed), I have skinny legs and arms that hide elephants in them like magic, I put deodorant on 3x in a row (and it's not an OCD thing), I forget the nice things people say, I forget the mean things people say, I forget, I forget, I forget, I have friends that are missing (not everyone knows how to handle the sicko-situation), I take poison upon poison upon poison called hope, I see, I don't see, I see peripheral flashes of bug and snake ghosts dancing past my feet and up my apartment's walls, and...

more often than not, I find this hysterically funny.


Even though my latest prescription is Imuran, an immuno-suppressant/low-dose chemo (with quite the list of side effects...oh what a feelin'!) to treat the autoimmune processes that are feeding my TM, even though I may never find a singular rhythm to follow again, even though I'm scared of what will or will not happen:

I heretofore choose laughter as my sole/soul prescription. (And oddly enough, when I'm in the belly of hysterics, laughing at my own nutty neuroisms, my body finds a dance that meets rhythmic logic.)

There. I said it. In legalese, so there's no going back.


1 comment:

  1. Oh god, this made me cry in both a good and bad way. I hope I am not sharing too much, but in April I was diagnosed with Wegener's Granulomatosis, which has left me with kidney failure (Stage 2 CRD) and must be arrested by chemo and steroids or it will kill me. Without aggressive treatment I will be dead in a year.

    Me. Dead in a year. It's just not possible. Yet it is. It is weird to exist in this place where the real and unreal stand side by side.

    I found this blog via your Flickr when I searched for "moon face prednisone" which I am starting to develop. A picture of your face was in the Google search and yours was the picture I clicked amongst all those choices.

    I found out I had the disease when my body finally let me know I had it when I broke my leg in March and developed edema all over my body as a result of the anesthesia I had during surgery. Blood tests, scans - nothing compared to what happened to you but it is easy to feel self-pity at the moment.

    I recall thinking my surgical scar was the end of the world. I love my legs. I had nice legs. Still sort of do. It seems so trivial now that I know I will never have children, may have a dramatically reduced life span and will face a transplant if Cytoxan and Prednisone cannot get this into remission.

    I have this sort of mental dance with myself, trying to see the good of my situation, but I am not to the point you are - the level of self-awareness you seem to possess eludes me. I just keep thinking about the scar and how I can see the plates in my leg.

    I wish you so much goodness in your life. I will read more here, I am sure, but I wanted you to know that this entry affected me deeply.


Thanks for sharing your comments on my blog. Please stop back soon or subscribe by clicking

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.
To play the slide show, click the big play button in the center of the screen, then the small one in the bottom left corner. Click here for more advanced viewing instructions, and select "Help."

Twittering Mel

    follow me on Twitter

    Neuro Art Latest

    See My Art Published in Monkey Puzzle Issue #7

    See My Art Published in Monkey Puzzle Issue #7
    Representing TM through Art and Dialogue...Locally, Nationally, Virtually.