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.


Friday Night Fire & the 10 Distractions

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:
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.

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.

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.

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.

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.

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.”

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.”

And the firemen said:

“It might be boring, anyway.”

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.”

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.

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:

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:

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:

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.

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

1 comment:

  1. i notice that this blog is a realization; as it is intended to be in its description, which is absolutely true. So, i will restrict my comments and i will not allow my self to share neither my opinions on the stories nor my thoughts and questions...Anyway, important artists, movie directors, art directors, photographers, painters won't answer and don't give a shit about mass critics...
    wish u the best melanie.

    hehehhehe :)
    so you think i will control it and i will stop here!
    your blog is excellent, you are describing, publicly, a tough frustrating painful disease in words, your writings and stories are excellent because you are waking up knowledge and defeating ignorance in ppl who don't know what we are facing and what we feel in many many situations and how WE HANDLE all types of blunder. also, when i read your blog i feel that someone is performing 'my pain' while turning the light on what is a neurologic disorder or TM.
    wish you great health Melanie, as i wish it for myself, too :)


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