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.


Tapped and Plugged

I had my 2nd my spinal tap yesterday, and aside from the obvious excruciating pain that follows a doctor sticking a huge needle into your spinal column, navigating nerve to bone and sucking out precious fluid, it appears that that tap also taps into so many of the questions we Transverse Myelitis-ers and similar disorder-ers face.

At least it has for a surprise knock at my door.

From my history as a dancer/choreographer, I have lived by the Body Mind Connection, or Body-Mind Centering (BMC), and I've experienced the profound links that exist within the labyrinthine corridors of our mind and body. When one has a neuro disorder, like Transverse Myelitis (TM), those corridors become a DO NOT ENTER construction zone, off limits even to the body's owner (i.e., me in my body, you in your body).

But when the doctors comes a tappin' and the all-smiles anesthesiologist comes to take you into a much-loved and deserved outer-body experience (I have to be put under for spinal taps and MRIs because of severe myoclonus - imagine a needle going into your spinal column and a major body spasm meeting paths: hello paralysis!), some of those corridors are cleared, and questions and emotions come a flowin'.

Knock Knock
We rare-disease-chronic-illness-neuro-autoimmune-limbo-livers already have a plethora of questions and emotions to answer, ignore, actualize, embrace, rail at our doctors, or toss out the window of our 18th floor apartment (might I be projecting a bit?).

But something happened yesterday - in my body and in my mind - that clarified one important issue.

I'm screwed. My life is changed forever. So...

What can I do? Who can I be?
Luckily, my ever-supporting mother flew from Pittsburgh to be with me this weekend, so I've had a constant companion to bounce these questions off of, and for a mother, she's been amazingly non-judgmental (aside from the occasionally obligatory mom-nag here and there) and quite resourceful. The questions are: am I me as I am now?, as I was then?, am I me as I was based on then?, or am I a new me based on not knowing any of these Me's?.

For a 33-year-old, I've had many lives, including multiple careers, tragedies, hobbies, educational endeavors, travels, homes, countries. If I just explored the last 5 years, I couldn't contain the list to 10 fingers:
At 28, I married my composer in a beautiful outdoor-October Buddhist ceremony composed of water ceremonies, close family and friends, and three bald heads (my uncle's from chemo, mine in support of his chemo, and the Buddhist monk). I was touring the country with my dance company and the world with his work. At 29, I retired from dancing due to unrelenting hip and knee problems, while moving myself and my nonprofit dance company to Philadelphia, becoming dual-city (not recommended), to follow my husband (also not recommended) who landed a great job in the great city of brotherly love (which I really do love).

That year, I bought my first house (in my name!), began pursuing my MFA, and spent as much time on the road and in Pittsburgh as I did in Philly, caring for my dance company and my uncle/father-figure/friend, Kevin Wander, as he died of a brain tumor. The latter event series was a complete de ja vu of my life-altering 18-year-old experience: replace MFA with undergrad, uncle with father, and husband with boyfriend (both of same name, same spelling.)

Just after my 31st birthday, I was diagnosed with Chronic Kidney Disease (CKD), became separated from my husband in the same week, saw a career counselor, started a freelance writing and consulting business called (the URL was available...and I have no qualms calling myself or what I choose to do with my life cool, so there), was accused of being a prostitute (not by the law but by my soon-to-be-ex-husband) among other things, and finally saved enough money to move out of my house.

By 32, I had my first full-time employee with benefits position EVER as a full-time senior copywriter with an interactive advertising agency, and although it took some time getting used to being the employee and NOT the boss OR a world-traveling artist, I loved it.

I've presented about 1/100th of my good, bad, and evil experiences within 1/2 a decade. I feel like I should apologize right now.

So you'd think reinventing, or redefining, the self would come naturally?.!?
It doesn't - even when you're a life-change-embracer.

Sometimes it creeps its way into your existence or it happens overnight. Sometimes it's forced on you like divorce papers. Sometimes you choose change happily, reluctantly, or by some outside force that can't be resisted (like love, your mother, or prison).

What do you do when your life careers are based on a more-than-competent mind and body? And in this society, we are our career, and as an artist, I may be biased, but I believe this is more true with the arts than any other career.

And what do you do in an economy that doesn't have room for fully-abled employees, let alone a gimp like me - laid up on the couch (today from my spinal tap and other days just from pain, exhaustion and fatigue), home-bound 5 days out of every 4 weeks on IVIg, plus endless doc appointments, tests, rehab, and occasional hospital stays.

Second Guesses

As I write this, I'm second-guessing my honesty: what will my current/future/potential employers think? Am I shooting myself in my neuropathic foot? Is disclosing the pressures, disadvantages, and discrimination against the disabled (yet abled!) worth the potential harm it could inflict on my own money-making, career-keeping potential?

I'm also second-guessing my potential - for recovery; for employ-ability; for my own value to this world, this economy. And therefore, I feel remiss, that I'm second-guessing everyone-else-who's-like-me's potential.


Plug for Rich Man's Hope
It's 8:41AM and, ironically, Bill Cosby and Dr. Alain Poussaint are on the Today Show (click link to see the interview) talking about hope, potential, and role models (as well as promoting their book, Come On People) - not just for African Americans but for people with high blood pressure, a little on the easy-side of disease, but hey, at least they acknowledged some sort of chronic illness.

Know your history, know your future, they say. I'd love to take their advice, but for those of us with rare diseases, is there enough history to learn from? We certainly have role models, like Superman, but he had money and fame behind him. What and who do we normal, bourgeoisie sickies have pushing our wheels up, up, up, up hill?

Sure, there are examples that we can mold to our lives. My uncle's fervent fight against his fatal diagnosis is my inspiration, but it's not my answer. His situation does not match mine. I have met and adopted my superheroes all over the world - other TM'ers, my family, my doctors, fellow neuro patients and disabled friends - but we all have our own story, our own path, our own battles, and our own abilities and inabilities, and our own visions of what we want from our lives.

Third Guess is a Charm
I'd love to say, Melanie, Come on People (me), click my heels 3x, wiggle my ears, flare my nostrils, and have a luminous answer. I may or may not have to devise a new career (again...) - that's an unknown until recovery rears it's pretty spinal column - but no matter what, I have to redefine myself. I have no choice.

From the day I became incontinent in front of Rittenhouse Square, I began transmogrification into the porta-perma-cathed-spinal-tapped-IV'd-thin(literally)-skinned-immuno-suppressed-puffy-cheeked(though my mom says I look better this way)-boobless-buttless-bruisable-spasming-occasionally-partially-paralysis-legged-word-losing-short-term-memory-pants-pissing-fire-body animal of a human that I am today. And that's me - drugged, poked, prodded, pained, forgetful...

and adapting. After all, I'm in my third generation on this earth. I better be able to figure out some things on my own, right? We lose our right to make excuses, when we gain our right to vote.

I stink at asking for help. I want to make it on my own. I want to recover. I want to be me.

Every day, we are new "me"s. My new me, just happens to be like an earthquake that doesn't have a lull in sight. But we TMers are used to balance issues. That's what walking canes and durable medical equipment are for.

Questions, Answers, Plugs
I've asked a lot of questions, and I've given few answers. I've plugged a book by a famous man and a rich man, so now:

I'm going to make a little plug for me. (big font intended...think bullhorn announcement)

Neurochic, neurochic, neurochic...remember the name
While I still don't have answers, I have plans, and one is called neurochic. So, check it out, tell me what you think, tell me what you want from me, from it, and if you can, help me make it happen. Please. I do need your help. And I want you to be a part of it too.

I'm sick of the ugliness of this diseased world. Are you?
Many of us, sick or not sick, are lost in this world; in this economy; in medical, corporate, and governmental bureaucracy; in our own reality vs. reality vs. reality (repetition intended) heads. I happen to be one of them with some exceptional circumstances, but I'm one of many in this latter category.

(Another plug:) Neurochic is my first step out of immobility and into ability, in this case a very fashionable mobility.

This Ain't No Martha Stewart Thang
So, screw the this grisly world and our uninviting-Martha-Stewart-good-host-lesson-needing- minds that don't have space for me or you. While neurochic doesn't answer all of my questions, nor was it inspired by the BMC-induced spinal tap of yesterday, it is part of my answer to my own uncertain existence. And hopefully it'll sex-up the unsightly world that we - the deformed, disabled, sickly, ailed, jobless or soon-to-be jobless - have no other choice but to exist in.

-End Plug-

1 comment:

  1. Wow. There are so many points on which I could comment because you said so much, so well. I smiled at your "porta-perma-cathed-spinal-tapped-IV'd-thin(literally)-skinned-immuno-suppressed-puffy-cheeked(though my mom says I look better this way)-boobless-buttless-bruisable-spasming-occasionally-partially-paralysis-legged-word-losing-short-term-memory-pants-pissing-fire-body." Great description - and one that I can (mostly) share. [No boobs and I don't bruise easily :) ]

    I don't need to use a cane (now) but have Googled them and, especially for women, they seem pretty industrial. Even House's cane is a bit geriatric! So, I applaud your Neurochic. I’ll have to think about this.

    Though we have never and will never (probably) meet, and one of us is from Venus while the other is a Martian, I was saddened by the trials you have endured and the soul questions you are asking. This is a diseased world. And there are times when we can feel so small, alone, insignificant and useless. Then, with TM, these feelings are magnified. And, can become overwhelming. If I remember my statistics correctly, the #1 killer of people with TM is suicide. (Same with MS.) Higher than for people with life-threatening illnesses like cancer. Our minds play tricks and the reality that today’s pain will be there tomorrow can give a hopelessness. (Can I be any more depressing! :))

    I struggle, just as you seem to do. (If I’m reading wrongly into your post, forgive me.) But your post reminded me of one that I wrote quite awhile ago, so I revisited it. As well as needing to remind myself again, I thought I would share it with you.

    I’ll pray that you’ll be encouraged this week.



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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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