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)


  1. Maybe your Vagina is at the DMV ( department of missing vaginas) Number 1,698,541, waiting to be called for renewal. Janis Z

  2. My mom is coming to visit today (flying up from Florida) and spending the week. She knows everything. Maybe we will find your vagina!


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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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