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've Lost My Vagina

I haven't posted signs yet, and DON'T WORRY (mom), they will not have pictures of the missing treasure, but yes, I've lost my vagina.

I've looked in all the obvious (and not so obvious places), and I can't find the evasive bugger.


If you're stumbling across this blog because you, yourself, were searching for vaginas, you might be a little bit confused. How can a 33-year-old woman, with a vagina that has a (known?) history of staying in place, as most vaginas do, lose her vagina?

The answer, my friend, is unfortunately quite simple (and yet so deeply complex), I believe my vagina is somewhere blowing in the wind.

Wait. No. That's not the answer...

  1. My vagina has been the victim of identity theft.
  2. My vagina has gone to LA to be a contestant on that Marry a Millionaire show.
  3. My vagina is on the FBI's top 10 Most Wanted list.
  4. My vagina is in high demand, sucka'.
  5. My vagina got sick of my lazy couch potato ass and is at the attorney's office filing for divorce.
  6. My vagina was tired of being nagged, nagged, nagged, and has left me to explore the big, wide world that exists outside my panties, got hit by a car while crossing the street, lost its memory, wasn't carrying ID, and is lying in some hospital bed on life support all alone with no one to hold its hand while it takes its last dying breaths.
  7. It's winter! My vagina's in hibernation, duh.
  8. My vagina is getting in touch with its inner child and playing hide and go seek.
  9. Maybe I should call my mother. She's sure to know where my vagina is. After all, she knows e-v-e-r-y-t-h-i-n-g.
  10. My vagina just doesn't like me any more. So deal with it.

The truth is, I can see my vagina. It's exactly where it's always been. I just can't feel it.


One of the first questions my neurologist asked me after diagnosing me with Transverse Myelitis (TM) was how's the sex? He didn't quite say that verbatim, but the question and point were close (don't forget, I do have TM-induced short-term memory), I assure you.

At the time, partner-less as I was (though not alone... "clear throat"), I thought everything was A-OK with my little friend. But as the disorder progressed, and so did its side effects, my vagina, just as I have, has become a victim of neuro mayhem. What's so screwed (pun intended) up to me, is that I'm calling my vagina my vagina. It should just be .


It's really about math. On a good day I have 1/2 a vagina; a bad day 1/16; a this f*cking sucks day, nada to the naked eye.

I hated fractions in school, but luckily I was good at them, because we nether-region-losers need to know our fractions and their potential for multiplication like the back of our hand (another pun intended).

This lost vagina is my land, this lost vagina is your land...
I had an illuminating conversation yesterday with a girlfriend (with whom I always have illuminating, enlightening, energy-enhancing conversations) who is going through menopause. We realized that our 10-year friendship has brought us yet another gift of girl-to(not on!)-girl empathy.

The neuro vagina is very similar in its affects and effects as the menopausal vagina, and that got me thinking. My missing vagina is not alone out there. We 1-in-1-million TM'ers and our corresponding sex organs aren't nearly as detached from the world as we thought.

I don't know the statistics or all the populations affected, but those with lost vaginas (or penises) could also include people with spinal chord injuries, neurological disorders, disabilities, menopausal women, victims of female circumcision, or victims of abuse. Please tell me if I've left anyone out, because I sincerely do not want to offend anyone.

Even though, I know I am not alone in my search for the missing vagina, I STILL WANT MY VAGINA BACK!


I may have said it before, and I'll say it again - because I need to say it to myself now, again... again...and again: O.T. There ain't nothin' like it:

  • Kegels, kegels, kegels, kegels...even if I can't feel that muscle that (as an ex-dancer) I had such control over, these are an absolute imperative. OK, they're not that fun to do (on your own), but a) there are many benefits to kegels (think latter-life incontinence ladies - trust me, it ain't fun now or ever), and b) use your imagination, do I have to spell everything out. My mom's gonna kill me!
  • Masturbation...even if it takes 20 minutes instead of 3 and there's no "end result". (Life is about the process, not the end result, right?).
  • Sex. And this is doctor's orders (not Dr. Mel, Dr. Neurologist)! So, in the brilliant words of Nike, Just do it. And, as a former personal trainer and professional athlete, I can assure you, multiple reps and sets are your key to success.

Since hanging missing vagina signs and offering a reward will only deplete what energy and money I have left, as far as finding my lost vagina, there's not much more I can do at this point than the three bullets above. I could hire a private eye (come on...make the hackneyed leap here with me), but that's just plain old ridiculous.

Ohhhhhh, oh, oh...the FRUSTRATION
And, here's how the neuro woman can now relate (perhaps fractionally) to the general male population, who:

a) think of &/or refer to their penis as their penis (i.e., an object with a life of its own)
b) get sexually frustrated and feel like women just don't understand the needs of their penis or understand how we were put on this earth to make their penis's life a happier, healthier, less blue one
c) really want that space between our legs to experience the most it can in life
d) are moderately-severely obsessed with obtaining The Big O


Maybe I'm just trying to make myself feel better - since certain past times are missing the end-mark. But I do feel some consolation in knowing that I am not Hans Solo in my search for my missing vagina or the experience of having a black hole where there should be a pretty pink purr.

The search for a missing vagina doesn't have to be a nail-biting, cops and robbers, covert operation thriller. It is a process. It does need to be acknowledged, addressed, and dealt with, but at least, at the end, I will not have been chased, shot and killed, or arrested - though I may be out of breath.

We've all lost things that are important to us. And, we either find them or we don't. But we look until we know there's no more point in looking.

Yes We Can, or:
I believe I will find my vagina...some day.

The reason I have that hope is because I have a very special neurologist who won't stop working on my behalf until I'm as healthy as I can be. And that means a full-bodied-all-parts-in-as-working-order-as-medically-and-magically-possible-woman. I also have me, and friends, and "partners-in-crime", and in many ways, their support is better than any full-force-search team.

As always, the back, back, back story is as twisted as our nervous system and has a list of characters including advocates (I.G. Living, Advocacy for Patients, my mother, "special" friends, and more; Side Note: I can't believe I just positioned my mother and "special" friends in that serial order, but say lah veeeeeeeeeeee), enemies (Aetna - they don't even deserve a hyperlink), and the sacrosanct IVIg.

For the mean time, I'm going to do my best to enjoy the journey of the case of the missing vagina. But that shouldn't be that hard... (Another pun intended)


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-


IVIg is On & in My Main Vein: February

A Belated Update...ooops
This month's treatment (2/9-2/13) - 5 glorious home-bound(ish) days of 10-20,000 people's superior antibodies infused into my body - went by as quickly as any 5 days in the life of a neuro-gimp hoping for recovery.

In the week or 2 prior to this month's treatment, all I could do competently was sleep. Strangely enough (and in total opposition to my reaction to last month's treatment), I was on a 20K high - that is 20k people breast stroking (that's a nod to swimming...ahem) through my body. Now a sickly high is very different from a healthy high or the blessed, but illegal in this country, high, but it's a high none-the-less. And experience is relative, as are pharmaceutical and non-pharmaceutical narcotics.

Aside from headaches and nausea (possible side effects of the IVIg), the good news is, I feel as though I've finally stopped deteriorating. So, I'm hoping - which can be a bad thing to do, as it's no different from an expectation (i.e., major boo hoo potential)- that next month's treatment is going to mark the start of more noticeable improvements.

In my first few days following treatment, I was elated by a decrease in neuropathic and general pain, increased cognition and strength (but still no stamina), and a decrease in visual impairment. However, as my angry antibodies seem to be eating the yummy prey of the perfectly concocted and diluted serum, these improvements are feeling the bite.

A lot of the old frustrations are stubbornly sticking to my spinal chord, and February is proving its reputation as one of the shittiest months of the year; in my case, including several less than feel-good procedures, including a urodynamics test, cystoscopy, spinal tap, and possibly an EMG (the test that I had 10 years ago following a car accident that prepared me for any level of pain) and an MRI, as well as the typical bloodwork, and a humbling "sample".

Aside from all the crap I listed above, I'm feeling "good enough", and luckily neurological disorders don't make you look like you feel. Surprise! I'm sick inside.

The truth I have to deal with, is that despite all the IVIg in the world, Transverse Myelitis isn't curable, and whatever level of recovery I have, will be just that - a level - not back to normal or back to Old Mel. Still struggling with that, but as I type here and my arms are burning and my fingers are tiring, I am so F*CKING GRATEFUL that we BEAT AETA and that Ativan exists and is on my script list!

I can't imagine where I'd be without IVIg, and if monthly IVIg 5-day home-bound infusions mean status quo rather than improving or deteriorating, I'll take that, but I'm not going to settle for it easily.

So on that note, I should try to get to sleep. It's medicine I don't have to pay for.


Site Update: Your Neuro Detour

I've been so lucky to be able to interact with a lot of you individually - via this blog and the emails you've sent. Now, you can interact with each other and share your stories, tips, news, or updates at Your Neuro Detour by clicking interact in the brand new nav bar at the top of this page.

Check it out, join, invite your friends. It's a neuro free for all.

PS More news updates to come on the new nav bar items (hint: neurochic)


Of all "things"...

Some not-so-stupid but karma-vapid idiot has apparently stolen my identity! And charged thousands onto a debit card (which gratefully, thanks to PNC bank, I am not responsible for) in my honor.

I just found this so ridiculously ironic, I had to share because:

a) I don't have much of an identity to steal, (considering I'm still finding myself in my new Transverse Myeltis (TM) world),
b) I have no income,
c) I'm waiting for disability benefits to kick in,
d) I have a neuro disorder that = shit-life-with-unknown-prognosis,
e) I hope to remember this incident because it makes me laugh (even tho it's one more identity I have to fight for), and
f) Who else would find identity theft funny but me, and
g) Laughter is contagious, so I hope your getting a good laugh too.

So, here's a toast to to stolen identity, because perhaps this thief will steal all of me and normalcy (as much as normal I can muster on a normal day) will return sooner than expected.

PS Please no toast expectations until this weekend. My 2nd round of home-bound IVIg begins tomorrow morning, and toast-time will be limited for the next 5 days; gotta keep the system clean and ordered. Rules stink, don't they?


The Results Are In

Here are the official results to January's Poll (and the first ever Neuro Detour Poll). Thanks to everyone who participated (and no-thanks to those who didn't: NOTE: see friendly smile).

Thirty-four voters. Not bad for a first poll or for a blog on VERY rare disorder. BUT, since Neuro Detour's October inception, we've had more than 1,000 visitors, so I'm hoping, asking, pleading(?...not quite/strike that) that the next soon-to-be posted poll will entice more interaction. Don't forget, we (me) TM'ers are often home-bound, so your interaction means a lot to us (me).

You still have a chance to redeem yourself this round by posting your comments here or anywhere on Neuro Detour. And if you're one of the lonely two who selected other feel free to use this space to explain your other-ness. And if you're not, use it anyway.

What Made You Interested In Checking Out Neuro Detour?

Total Voters: 34
Poll closed: 1.31.09

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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