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.


Kiss Me...I Have TM

WARNING: This post talks about SEX, as well as-but not with, FAMILY, and FRIENDS. It may not be suited for prudes, conservatives, people with intimacy problems, or my mother.

AUTHOR'S NOTE: 1. This is NOT a solicitation. 2. These are just opinions (but I think they're correct opinions). 3. This is NOT a solicitation - unless you're really nice, smart, charming, handsome, and I like you.

There are a lot of debilitating physical, sexual, and emotional symptoms and side effects of transverse myelitis (TM), most of which should overwrite this post entirely on high-speed-auto-erase. And the medications, surgeries, tests, procedures, and treatments to halt the progression and maximize recovery also have their own party of negative effects - not limited to moderately disfiguring chest implants, and affects to personality, mood, libido, sleep, energy, weight (gain or loss), and what I so fondly call, puff face.

But when it comes to intimacy and the melodious feeling we get from being admired or wanted or liked or respected or "you're just so damn cute I can't keep my hands off of you or stop bringing you flowers or giving you gifts because I adore you and the way you smile at me" or preferably all of the above and in reciprocal fashion...disease and disability can't seem to veto that much as I'd like it to.

That would be the easy way to get through the evening, let alone the next two years of my life.

I've been married, divorced, deeply in love, madly out of love, in long-term, short-term, long-distance, and friends-with-benefits-relationships. I've serial dated - but that was a psychological growth experiment, which worked - better than most of the former. And when it comes to basic needs, I am quite happy to take care of them myself, regardless of relationship-status.

But this is not just about basic needs. With the exception of lifting heavy boxes, running away from danger, getting my palm pilot to work, or opening heavy doors against the wine [damn good sic], I am prepped to manage that part of my life.

In my personal experience, even in my most dysfunctional relationships, there were at least moments of unprecedented passion, touch, and affection- all kinds of touch and all types of affection displayed in different settings, with a zillion meanings and emotions, resulting from multitudinous instincts. And in my most functional relationships, passion was immortal - most of the time.

I regret to admit, I have yet to come across a drama-free-or-most-of-the-time-drama-free-relationship. Since my current state is pretty dramatic, I'd like to avoid any more drama, but I'd also like to think that I've put in enough work to evolve to a psycho-emotional (babble, babble) place where I am capable of recognizing the signs and triggers early enough to evade those unpleasantries.

Having TM is a minimalist, experimental drama (or saga - depending upon your POV) that drags on infinitely; the kind, that as interesting, profound, or groundbreaking as it may be, still gets old, because there's another world outside of people and happenings that might just be a lot more entertaining, enlightening, sexy, and able.

The reasons for me to not want or choose not to be in a relationship at this time could probably hold their hands across America. And I would presume that also applies for the person whose hand I would want to hold the tightest.

My life equals three full-time jobs:
  1. My job that pays
  2. Living with TM, which often includes shoot-em-up internal battles ending in elephantine blubbering, extended hospital stays, and outpatient surgery and treatment
  3. Managing my illness, which lately mostly involves fighting Aetna for coverage, among many, many, many other things
There's no time for:
  1. Watching the news
  2. Living beyond the moment
  3. Browsing the 100s of dull profiles on
  4. Additional drama
  5. Getting a regular mani/pedi
  6. Returning every phone call or text I receive
I have no, limited, or occasional ability to:
  1. Read a book
  2. Stay awake
  3. Understand compound sentences
  4. Feel my entire vagina in its gorgeous natural state
  5. Make my bed AND fold the corners like they do in hotels
  6. Take a real shower (for the next 3 weeks)
  7. Impound with sultry eyes painted for maximum hypnotic response
  8. Walk in speed or without my punk rock cane
  9. Tell interesting stories (the words get stuck in my brain)
  10. Sit in one position for long
  11. Go for a romantic hike in the woods
  12. Vaccuum
  13. Control my bladder in Ikea, Rittenhouse Square, or while playing darts
  14. Be the best dancer on the floor (it always worked before)
  15. Use a knife - for prepping a home-cooked romantic dinner ala Melanie
  16. Wear shirts that cover my porta- and permacaths (which to some could be a perk because what cleavage I have left is always on display...right between my quatro-boobs)
  17. Stand on one leg
In other words, I've lost my zealous ooomph: I'm in pain, I'm partially numb in all the wrong places, I'm boring, I'm self-involved, I'm tired, I'm learning to live a new kind of life, and all of this means that I don't have enough to give to a new or even existing relationship.

Whether or not this is true is not the issue, the fact that I feel this way is.

My attributes that I thought were my draw are in hibernation. My friends and family, who love me dearly, claim I still have so much to give. And to be honest, there are many times when I think they are right on.

But the questions are:
  1. Do I have the sustainable time, patience, trust in myself, inclination, mood-control, libido, focus, or strength to part-take in any kind of intimate relationship?
  2. What man in his right mind would want to have any of the above in his life?

GETTING WHAT YOU WANT WITHOUT GETTING IT...or even possibly being able to give it

Despite the epileptic inducing disco lights dancing in the lists above and my double vision (could this mean I actually see things more clearly?), I STILL REALLY desire intimacy - the whole pretty package.

I want to be touched and kissed and cuddled and held. I want my back to be tickled when the pain keeps me awake. I want to be kissed where it hurts. I want to be kissed on my lips, behind my ear, and under my chin. I want to feel calluses caress the back of my hand. I want an arm that is bigger and stronger than mine to wrap itself around me, and I want to feel the heat from the body attached to it. And, of course, I want sex.

And as much as I want to get all of this simultaneously, I want to give it too - just not every day and maybe not even every week. When you're diseased like me, life is moment to moment, not even day to day, and it's hard to know what I will need or want next.

All of this sounds disengaged - an arm from a body, a mouth from a face, a moment from a day - and it is, because I am disengaged (on physical, personal, medical, and man-to-woman levels). I don't have this kind of intimacy in my life now, I'm not sure if I could handle it, and I'm not certain any man could or would want to either.

But I want it anyway!

I'm not actively seeking it, and when it passes me by (or stands me up), I don't flinch...much, but a girl can least once a week. Right?

And then there's the next question: how does a woman get this kind of intimacy (not just "Thanks for great screw, I'll call you the next time I'm horny or around the corner.") - from a man - without the typical ingredients that comprise a relationship?

In August, I took a partnering yoga workshop at Dhyana Yoga from Ray Christ, a shaman. One of the gazillion insights I took away from this weekend, was that for every single emotion a man has in one moment, a woman has 50 (or 100...I can't remember). It may not be science, but I've seen it in action, and I strongly believe it to be true.

Let's face it, intimacy - whether familial, friendly, or sexual - is a bond. Though there are many different kinds of bonds out there, most of which can be purchased at a hardware store, (most) men equate intimacy as a bond. It's as simple and singularly-emotional as that - they can buy it or return it, take it or leave behind.

And for most men, as it's been explained to me by other men, intimacy and sex are antipodal, especially in relationship to the non-relationship-relationship. So when it comes to intimacy, or bonding, the only way a woman's going to get that is by coupling with a man who wants to be in a relationship. Meaning, if you
Publish Post
want sex without the responsibilities that go with a relationship, you can get it. But if you want sex, kissing, and cuddling, good luck.

Studies show that people with pets live longer. Why? Let me guess. Touch and affection. Because I really hope it's not sex.

Well, I have two adoring pets, and let me tell you, it ain't doin' it.

And according to the Forbes Magazine article, 10 Ways to Live Longer, having more sex lands at #3 - right above getting a pet.

So, back to my previous question, if I'm not sure I can handle or give enough to a relationship, how am I going to get that winning combination of kissing, cuddling, and great sex?


Maybe the answer is compromise. Maybe it's letting go, going out, and taking a risk (a protected risk). Maybe it's just saying fuck it, I'll make room for a relationship. Maybe there's some angel-man who can give me everything I'm looking for without expecting me to be as present, reliable, touchable (the cath-pain screech), focused, emotionally balanced, available, giving as I normally would be, or as another woman out there who looks equally as great in tight black jeans, writes poetry, and has lived in three countries who does not have a rare (but not contagious) disease.

Or, maybe it's just accepting the infinite (and thankfully lacking of sensuality or sexuality) bonds of intimacy I receive from my friends and family, giving up on the sexual intimacy package deal, and settling for a good, but not fully gratifying night of lips and tongue-touching-cuddling-less sex.

I'm not talking about '70's free love in this hypothesis. It may have been the era in which I was born, but it's not where I am. But maybe, there's a 2000's kind of monogamous free-love with a sick person that could do the trick?

I used to be an all or nothing kind of person. I think no matter what journeys we take, life experience reveals, that's not always the most functional or rewarding way to live. So for my final maybe, maybe it's time for me to review my desire for intimacy, and begin seeing it like I know my disease to be - every day brings a new opportunity; there are good, bad, and this-fucking sucks days; there are distractions that find me or I can call on to make me forget about my situation, at least for a moment; and even when I can't do something myself, I do my damnedest to do it on my own.


  1. ... love is about imperfection

  2. Wow Mel!

    Pretty deep, although now I'm having conflicting feelings that I may be more in touch with my feminine side than previously fathomed (or considered). I'm heading out on another of the endless "business" trips tomorrow, but should have computer access at some point to respond more in depth to this blog - it is deep, and one reading just isn't sufficient to respond in any kind of meaningful way... on an objective note, great writing! I only saw one wine that should have been wind, although in some states of mind those words could be interchangeable:)


  3. i agree with princeofdarkness, your blog is getting deeper and deeper in its content and subjects. after i knew and view your performances, i find that you have great potential and now this place is being a 'stage' to perform your ingenuity in words and feelings.
    as for my comments, i have the following:
    1-what is the name of your pets? i've never seen them neither.
    2-i agree with intimacy!
    3-If you are ready for a relationship, and this is IF and only IF (in computer science we write it IIF), u din't mention anything about your 'relation ideal partner' other than his soft hands and the sensation u can get, and all bla bla bla one can get, but what about his health? his physical situation? isn't that a load for you? as u r saying it could be for him? i don't know if i sounded clear about the issue, but what i want to say is that love is not about imperfection, it is about perception.:)
    4-i want to share this with all of you: who are we? we are our thoughts, our dreams, our memories, our hopes, our feelings, our secret fantasies, our fears, our skills, our habits, our pains and our joys. but i think there is one more thing, still missing, i am working on it to figure it out...
    5-one more thing melanie, (this is not advertising as much as i think it is 'concerned' with this blog) do u know this book? "The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed for Life" by Allen Rucker.

  4. one more thing, that's the reference on the 4th point: (from the book "Evolve your brain" by Joe Dispenza).


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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

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