Friday Night Fire & the 10 Distractions

THE BACK, BACK SOMEWHAT TANGENTIAL STORY
In my family, when the goin’ gets tough, the tough eat Peanut M&M®s. Look in our freezers, and you’ll find at least one, but more likely 2-3 super-sized bags of M&Ms, as well as Vodka. In fact, my freezer is composed of:

• 1 nearly empty bag of Dark Chocolate Peanut M&Ms
• 1 nearly empty 1.5 liter bottle of Pinnacle Vodka - Classic
  
• 1 half-empty bottle of Smirnoff® Triple Distilled Raspberry Vodka
  
• 1 half-empty bottle of Smirnoff Triple Distilled Passion Vodka (this makes the best and cheapest Screwdriver on this planet; I recommend 4:3 Vodka/OJ)
• 1 3/4-full bottle of Absolut® Citron (Fun Fact: Absolut has its own fashion line)
  
• 5 multi-colored, multi-shaped mini trays of ice cubes in the shapes of hearts, stars, triangles, wine bottles, and plus signs (While adorable (the hearts are my favorite), I wouldn't recommend these for people with neuro or rheumatologic disorders.)
  
• 1 unopened 4-pack of Gardenburgers®
• 1 expired package of lox
• 1 freezer travel bag of single-portion packaged meatloaf that my mother made my brother bring with him on his last visit
  

We are neither overeaters nor drunks (well, at least the family members I'm referring to), but we do know there are novelties that make life more agreeable, even festive, and often, those are the same items that grant condolence and clemency from distress.

I wouldn’t be surprised if we’ve kept Mars Inc. and myriad vodka companies in the black through these harsh economic times.

While peanut M&Ms and a Screwdriver work wonders on emotional stress, these treats aren't quite potent enough to put out the relentless fire in my body. Nor are the 30+ pills I take every day, or the vampiric tri-weekly plasmapharesis treatments, both of which have been prescribed to do precisely that, among other wizardly healing.


FIRE STARTER
The fire in my legs—and arms, and neck, and torso, and face—is hot pill-sized bubbles of exploding cherry bombs and muskets that burst like popcorn on the stove, a nuked porcupine, and Mozart's Die Entführung aus dem Serail from my bones to my skin. It’s relentless as Greenpeace volunteers on 15th Street, ubiquitous as Law & Order and its multiple incarnations on cable, and distracting as a new relationship (but that delivers an entirely inverse tingle).

Incontinence can’t extinguish it. A hot bath is a no no. Gabapentin may diminish it, but the alarms are still blaring. Tramadol swilled with a glass of wine can occasionally do the trick, but it takes a lot of follow-through, and too much alcohol is bad (but oh so good) for a vertically-challenged disabled girl on steroids and a narcotics rainbow.

Unless we’re doctors, anything that transpires inside our bodies, is usually impalpable. As a dancer, I spent my career coercing a deep mind-body connection. And as much as I experienced that, it doesn’t make a damn difference now.

Half of my body is numb. My mind doesn’t know my anatomy exists, cold or heat don’t care if it touches my skin, my dangling earrings mourn they perceived loss of their mate, and the air that once danced against body is just distance between me and where I need to get to next.

And despite all this lack of feeling, I feel the fire. And I feel frustrated and exhausted and limited. I’m supposed to be getting better. I’m supposed to be the queen of the dance floor. I’m supposed to be happy, charming, intelligent, sexy, flirtatious, and a joy to be around. But I’m on fire and there’s nothing sensual or flashy about it.


BLAZING THROUGH
So how does one deal with the pain and exhaustion of Transverse Myelitis (TM), and its blood-plasma-life-force-sucking treatments and mind-altering drug menu?

Obviously, the way I phrased this question, although grammatically correct, is pretty damn stupid. Everyone deals with pain, suffering, discontent, and disappointment differently.

I’m trying to maximize the healing components of my new mantra, My Life Sucks, but I Rock, a somewhat contemporary meditational approach to pain and suffering. Although it’s a great ego aid, which is a sanity necessary for most with a chronic or debilitating disease, especially one that is outwardly visible, its vessel for healing isn’t bountiful enough to hold all the fire extinguishers in Pennsylvania. And it certainly can’t hold a muscular, grease-covered fireman with the strength to sweep me off my feet, vacuum my apartment, assemble my new furniture, or screw me mindless until I'm blissfully numb.

While there isn’t any sexual healing happening in my apartment, I have found distraction to be the best therapy for pain management and its emotional side effects, and it comes in many human and non-human, and active and passive forms.

There are many distractions I have found that work, and I’ll address all of them eventually. But in this post, I’m talking about Friday Night Distractional Healing after a 5AM-8PM work-treat-organize-get-on-with-it day comprised of plasmapharesis, somewhat deserved angry text messages and emails, fighting Aetna, work, work, work, my first and humbling Life Alert installment, wearing the ugly and way too big bracelet that goes with it, a 5:30 therapy appointment, and assembling the very cool and on sale tree candle holder, only to find that the glass votives were broken.


FRIDAY NIGHT FIREMAN TO THE RESCUE – PART I: PARTY TIME?
Fantasies aside, my Friday night fireman, came in the guise of an invitation from two friends (that means fireMEN!) to a holiday work party at one of the top landscape architecture firms in the country.

SCENE:
As they skulk along with the hoards of traffic along the Schuylkill express way, firemen, Mat and Jesse, run out of work talk and decide to call the sick, disabled, moody, frequently tired, yet occasionally charming and glamorous Melanie. Not knowing what to expect from their drive or their philanthropic phone call, they take turns staring out into traffic and back and forth at each other, while stealing potluck cookies from the Tupperware in the back seat.

ACTION:
Firemen dial, while swallowing the last bite of a chocolate cookie:

“We’re going to a party, not sure what to expect. We’re stuck in traffic, but we could pick you up in 30.”

ACTION:
Dull, tired, unshowered, undressed Melanie responded:

“Sounds like fun, but I had treatment today, and I should really take it easy, plus my cognitive abilities are on the demise, I don’t think I’ll be much fun to be around.”

ACTION:
And the firemen said:

“It might be boring, anyway.”

ACTION:
Then recently-former-good-time Melanie said, waffling on her lame evening forecast, but still certain it was the best choice and she wouldn’t follow through on her suggestion:

“Why don’t you go, call me when you get there, and if it’s not boring, I’ll grab a cab and meet you.”

ACTION:
As she imagined her single-woman evening itinerary of fire-bound legs attached to her couch and tremoring fingers stuck to her remote, she recalled the discussion she had just one hour ago with her therapist about her lack of single friends and touch and human interaction, and how having more of these things in her life might make living with TM a little easier, she saw a golden flash of young, hot architects dressed in tight black jeans, with equally tight asses and pretty faces prancing before her, and she said with understated appreciation:

“Alright, I’ll come, I can always grab a cab home. How long do I have to make myself beautiful?”

~not quite fin~

Going to a party is like getting married. You gotta look your best and there’s always a way out. And fortunately, the way out generally isn’t as painful or arduous as divorce.

Luckily, I have discovered and purchased Cinderella beauty products and a wardrobe just for these occasions. They couldn’t have saved my marriage, but they do make it possible for a disabled, disfigured, chronically sick and tired woman, such as myself, to look and smell good as the occasion required.


THE 10 DISTRACTIONS
We arrived at the party, and although I was still on fire in a bad way, I felt hot in a good way. I was wearing my latest purchase from Joan Shepp (a luscious dress that had material gentle enough and strategically placed enough to almost cover both of my extruding catheters). In preparation, I had loaded on the Nars Laguna/Orgasm bronzer duo so I had a deceivingly healthy glow, and weighted my wrist with enough bracelets to cover the hospital bands.

To our surprise, the party was bangin’—rife with hip and happening people of all ages, numerous and beautifully laid out food stations, music that could even make a frozen shoulder dance, and free booze.

TM or no TM, I know how important human interaction is to my quality of life. But large crowds make me uncomfortable. There’s the overstimulation (people with TM have hyper-reflexes and responses), the fear of getting knocked over, and public incontinence, just to name a few.


Distraction 1:
Open Bar

This was a large crowd, but one gabapentin and two glasses of savingon blanc later, and I was prepped to navigate its labyrinthine layout and all the beautiful and friendly-faced people.

Distraction 2:
Get cerebral

I often wonder what people are thinking when they smile at me and my various props. I’ll get into more detail about this topic in a future post. But for tonight, it gave me the opportunity to escape the dizzying lights and get into my head.

Distraction 3:
Beauty

Hot guy walks by, and then another, and then another…but I’ve set my sights on one. (Note: this may be counter-sexism, but eye candy is still candy, and I believe I deserve a little extra candy for now.)

Distraction 4:
Small Talk

Alice, a very effective small-talker, introduces herself as a wife of someone who works at the firm. I introduce myself as an ex-girlfriend of someone who used to work at the firm. I silently pat myself on my back for my wit. We laugh and move on.

Distraction 5:
Genuine Conversation

Tell Mat about hot guy #1. He says, really? I say, yes. He says, what are you going to do about it? I say, posed as a statement, not a question, why don’t you introduce yourself to him and then, of course, him to me. He says with resolute reluctance, we’ll see.

We look at the spread of food before us, and despite my lack of appetite, I eat something unidentifiable in the dim lights and appreciate the texture in my mouth. I prop myself on someone’s workstation to rest my legs and wonder why no one is dancing.

Distraction 6:
Meet & Greet

Meet Alyssa and Frank—the most adorable and friendly married couple in Eastern Pennsylvania.

Alyssa too wonders, although out loud, why is no one dancing? I want to dance. She sees my cane for the first time and apologizes for what she considers to be a blunder. There’s such a thing as cane-dancing, I say responding to the fear on her face, but the music has gone downhill, a couple generations and not the musically prolific ones, so we agree to wait for the next good song.

Distraction 7:
Hot guy #1 in Close Proximity

Alyssa says he is the sweetest guy in the world with the cutest accent ever. I ask, would he be interested in a woman with a badass cane? Superficial, I know. But presentation is where these things begin.* She looks me up and down with total sincerity and compassion. Yes, she says.

Courage restored.

Alyssa introduces us. We all chat. I try to hide my cane behind me. Good music returns. Alyssa, Frank, and I take off to fill the void of an empty dance floor bitterly juxtaosed against flawless hip-gyrating music. Hot guy #1 says, I’ll join you later.

Distraction 8:
Bonding

Alyssa and I have bonded en route to the makeshift dance floor. We agree to stay in touch. We agree that we need more friends with joy and spirit. Basically, we agree.

Distraction 9:
Dancing

I know I shouldn’t. I know I will spend Saturday in bed and in pain. I know I can't tear up the dance floor like the old Melanie could. But, I’m feeling the music and forgetting the fire, and it feels so good to move my body.

I don’t feel the air against my skin, yet sound waves still reach my joints and my pelvis is making its mark, even if my feet aren’t’ burning a whole in the dance floor.

Distraction 9:
The Stare

I feel the music, but I also feel the people watching me, thinking, oh look at that disabled woman dancing. How sweet?

But then I realize, I still have more tenacity than the fully-abled dancers. So maybe they’re thinking, what the f*ck is wrong with me? Why aren’t I taking more risks. Why aren’t I checking my baggage at the door? Why aren’t I going for it?

Who knows. Who cares. At this point, I’m back into my private dance world, and more and more people are joining in.

Distraction 10:
Diseased Body Realizes its Limits

I got so lost in feeling human—in the interaction of dancing with new friends and strangers, the possibility of hot guy #1 finding my still-decent-yet-unknown-to-the unknown-eye-limited moves enticing, of the fan blowing the layers of my dress into its own dance—that I danced too long and too hard and too damn good.

And now I cannot hold myself up. Now I need help. I hate needing help.


FRIDAY NIGHT FIREMAN TO THE RESCUE – PART II: WITCHING HOUR
This is where the Cinderella story ends. And it’s actually midnight too.

I grabbed onto my fireman, asked him to hold me up and keep me from stumbling, get me through the crowd and the 300 yards to the exit to save my dignity and my ass or head from another bad fall.

As he walked me outside to get a cab home, I remembered what I had said to him last week: I'm not going dancing again until I get better. The pain isn't worth the joy.

I reneged on my promise to myself, and I’m glad I did.

The next day, the results will be a return to fire and other pains and unpleasant distractions. But tonight, I got out of my home, out of my body, out of my mind, and I extinguished the fire in my body by putting myself into a situation that works.

Human interaction distraction, even if it lasts only for a few hours, is comprised of many moments. And when you have TM or any chronic disease, your life is moment to moment. To have the opportunity to sew so many of those moments into one seamless evening is priceless.

And when I got home, I ate a few peanut M&Ms, took my night meds, fell into my bed, cuddled with my cats, and fell asleep, proud of myself and looking forward to the next opportunity to barter a day of amplified pain for a few hours of feeling like the Melanie I used to know.

~fin...for now~

*"Weakness or other dysfunction may lead to changes in self-esteem and self-image that affect sexual performance. Both an individual with neurologic dysfunction and/or the partner may perceive that disability makes the person with TM less attractive or less masculine or feminine."
From: Issues of Sexuality Surrounding TM by Joanne Lynn, MD and Leslie Moore, RN

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 desire...as 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.


SEX, ANCILLARY GIRLIE DESIRES, and THE REALITY OF IT ALL
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.


A SHORT-LIST OF RATIONAL REASONS WHY SOMEONE WITH TRANSVERSE MYELITIS SHOULD NOT BE OR NOT WANT TO BE IN A RELATIONSHIP
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 Match.com
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 dream...at 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?


A NON-RELATIONSHIP-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?


JUST DEAL OR DO...SO WE CAN ALL LIVE LONGER AND GET ON WITH OUR SEX LIVES
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.

...And After

Even though I was in no mood for surgery today; really, there are some days that I don't mind a little or a lot of poking and prodding, everything turned out fine, and I got to see my OR nurse friend Sharon again. Good people spread good vibes.

No one --from the procedural admissions staff to the patient transporters to the OR staff - could believe the reason for my quick surgical return (See: Why Insurance Companies (Aetna) are More Corrupt than the Mafia...a non-academic crime story).

My super kind Aunt Marci flew in from Montreal and met me after on the 9th floor after the surgery. I cajoled her to drag our legs a couple of blocks to a better taxi-flagging location. Even after being sliced open, I need efficiency.

I'm tired and drugged, so I'll keep this short and just share a couple aftermath photos with you. Feel free to laugh - my sternum might be eligible for a sideshow gig.

PS Plasmapharesis starts tomorrow. Yippee! They'll be using the port with the udders attached.

Surgical Symmetry - Prepping for #3

This morning I feel it is appropriate to talk about myself in the third person.

Melanie is not in the mood for another surgery.

Last night, Melanie saw the advantages: She was gifted with a three-hour race before NPO to drink two vodka & oj cocktails, try to eat something (Amy's Indian Palak Paneer frozen dinner), finish up a copy doc for a 12/3 deadline so she could enjoy the aftermath of anesthesia without having to drink a pot of coffee to regain her writerly sobriety, stressing through another deadline.

But today is her third surgery in one month, her last day of assymetrical sternal scarring and extrusions, and her first day of quatro-boob (def: woman or man with two catheters, one just above each breast.)

So in her morning haste to capture her before and after before leaving for her 6AM hospital registration appointment, she sat in front of her computer, resent the latest version of her copy doc to the copy director, and photographed the last morning of her sternum as it's evolved, she'll load the three photos, and race off to the hospital...late as usual.

She'll probably have more to say later. And she'll probably find grammatical and spelling errors and phrasing that doesn't suit her or anyone.