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.


Become A Glamour Gimp

This is a new series on my fave sites for sickos and non-sickos alike. Our lives may suck, but we must rock, and retail therapy, especially FREE or discounted retail therapy is great medicine. While it may not compare to oxycotin, it's more like apples and oranges, and one needs both the fiber and the vitamin C. Right?

I had to get this one out immediately, as ideeli is having a Vera Wang necklace giveaway (see pic to left).

And ideeli's not just for girls. They have men's giveaways and super deals too.

From Ideeli and Me:

You're invited to join ideeli, an invite-only shopping community where you get insider prices (up to 80% off) on luxury fashion, home and beauty brands. PLUS, ideeli has extraordinary weekly giveaways! Membership is free but you have to be invited to join- so join now.

PS The more of you that join, the more chances I have to win the Vera Wang necklace, so act quickly and then get your friends to join on your behalf. One of us deserves this beauty. Let's get this neuro detour on its path.


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.



Take Action...There's Hope for Myelin Repair

This just in from the Myelin Repair Foundation

Bottom line:
Myelin Repair = Spinal Chord Disability Extinguished. Wow.

Top shelf:
All donations are matched - kind of like doing birthday party shots.

Who knows:
I'm just doing my job here of spreading the word. It's up to you to make the decision if this is a clinical trial you'd like to support. If I had even an extra $10, I'd chip in...but I don't. My feeling: it's worth the investment. Multiple Sclerosis (MS) is not the only demyelinating disease out there. Transverse Myelitis (TM) fits the bill too.

The Call to Action:
(copied from the Myelin Repair Foundation Web site)

Help Us Raise $100K to Fight MS!

Steve Miller, Ph.D.

Steve Miller, Ph.D.
MRF Principal Investigator

Myelin Repair Foundation (MRF) wants to fund a clinical trial for a promising way to treat MS -- by "tricking" MS patients' immune systems into not attacking their myelin.

MRF Principal Investigator Steve Miller, Professor of Biomedical Sciences from Northwestern University, has a promising idea for an MS treatment.

In multiple sclerosis, the immune system sees myelin proteins as foreign material and attacks them. Recent research indicates that we may be able to "trick" the immune system into believing that the myelin protein is not a foreign material.

Bringing this idea to a clinical trial will help us determine whether this innovative treatment is safe and effective for MS patients.

Myelin attacked by immune system

Visualization of myelin protein attacked by T-Cells

MRF needs your help to make this clinical trial a reality.

Help us raise $100,000 to fund this trial.

The total cost is over $2 million. However, through collaborations with other funders, the MRF is providing only $200,000 for the trial over the next two years. ($100,000 for the first year and $100,000 for the second year).

Donate today. Help us reach the goal of $100,000 by June 30, 2009.

Your contributions to the clinical trial will be matched 100% thanks to another generous donor, bringing us straight to the finish line!

Spread the word to 10 friends and family about the potential of this clinical trial and help us spread the word to more people.

Scott Johnson's signature

Scott Johnson
Myelin Repair Foundation

Notes: This is an early stage clinical trial being conducted in one research institution. All clinical trial patients have already been selected.

If for some reason the clinical trial does not move forward as planned, you can be assured that 100% of your donation will be used to support other myelin repair research conducted by the MRF.

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Learn More:

Donate Today

Show your support for speeding up research on MS by funding our clinical trial!

Use the widget above to help spread the word.

Tell Ten Friends and Family

Tell friends and family about Myelin Repair Foundation's promising clinical trial. Encourage them to learn more about our work and donate to help raise $100K!


Register for our e-Newsletter

Learn more and keep up-to-date on the progress of research on myelin repair, the next REAL hope for treating Multiple Sclerosis.

The Myelin Repair Foundation is the only organization exclusively devoted to investigating the way in which the body creates and repairs myelin — one of the most promising approaches to treating MS


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."

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