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.


Breaking (Up) is Necessary to Do: A Series

Break glasses, hearts, arms, toys, the bank,
stupid words like good and bad. Go o(d)d.
ad(dition minus conclusion.)
an) ad (for .) Broken bodies,

not just parts, the whole
damn lot: laptops, coffee pots, clutches, memories -
break twice as directed(?) with power
tools. Break rules. Break time. Break out.
Breakdance. See it. Break it. Break
what's broken
twice as directed.

How to leave home
without keys? Never
come home again.

Break up with the sun, sight, the sense
of sensation. Knowledge is too big
a word. Break it. Future is too full
of itself. So are yesterday and today.

I want to say: fuck it all and go to hell.
I won't say: fuck it all and go to hell.
I say: fuck it all and go to hell
I don't believe; I've met
believers who believe I am in hell,
I am headed toward hell. I am hell

on wheels constructed of assistive
technology, a word not recognized,
a person not there, not designed, not home,
therefore not breakable.



It took me a while to finish this. I added the poem today, but the following (written in the present tense was started almost 2 weeks ago).

Another Author's Note & Disclaimer (I so want to write Notlaimer):
Today (1.18.09) will be day 4 of my IVIg treatment. Though I'm feeling some improvement already (internal sigh), vision impairment is still a nag. But despite the absof***inglutely annoyance of writing "in the dark", this post has been on my mind for days, which in visual terms is a pretty dark place anyway. At least the way, I imagine it. So now I need to break these thoughts from there. If I say more, I'll give too much away.

It's also 4:30AM, 31/2 hours after taking my night meds cocktail (a colorful and occasionally effective montage of narcotics), 4 days since my last shower (my port has been accessed), and I'm feeling a little vain. So with these two paragraphs combined, plus a dash of writerly stubbornness, a video recording of me babbling through my thoughts won't do. So I'm taking a chance here with digit(al) muscle memory. As always, please forgive me for "breaking up" with my perfectionist, perfectly proofed ways...and for carrying my metaphors on for way too long.

Even when we're healthy, independent, and our lives are full of naive potential, breaking up is hard to do. Remember your first love and how you looked forward to his (or her) calls and that long wait to Friday night when you could "go out with your friends" and sneak away from the pack to a quiet place where your breath turned white while you experimented with the flexibility of your tongue and lips dancing with another? and then the days and days of pillow-sobbing that followed the inevitable end?

Or, going back even further in time, how you loved your yellow Tonka truck more than any other toy, even the remote-controlled speed racer? and the day paint began to chip away and the eventual dismantling of its parts that made the whole thing so damn fun? and how when the first already dangling wheel broke off for good and you could no longer control your feelings, and you cried as though the whole world was against you?

Just like sickness, these losses continue through our lives to have a long list of side effects - tears being just one of the painful or embarrassing traits. While that list may be plentiful and weigh heavier on the negative, as adults, by now we should know it would do us more benefit to focus on the positive side effects.

But let's be honest with ourselves. Do most of us see the plus, when the minus is so much more emotionally and physically oppressive?

Probably not.

Even in my happiest moments, I waffle here. Do you? Why is it that we gravitate our emotions in that downward direction again and again?

BREAKING DOWN THE CLICHE: from Tonka Trucks to Playthings

Mostly, when we think of that horrific phrase, break up, we either think of the end of love or that timeless song (The Carpenters aside, you wouldn't believe how many ear-breaking covers I could have chosen from YouTube).

But it's not just relationships - with lovers, spouses or playthings (toys, so to speak), a shattered sentimental mug or burned-down home, the image of our body as whole after losing a limb or becoming disabled in any way from any cause - that break us into pieces of our once puzzle-completed selves. Forced to rebuild, feeling as though the task is greater and more dangerous that erecting a bridge from scratch, these all qualify as "life sucks" phases of our lives.

Most of these break ups are forced upon us. These unsolicited surprises impose uninvited challenges and change.

Ironically, most of us invite a challenge, even crave it - in our jobs these c-words make the day go by faster and give hope for promotion and pay raises. For athletes, like I once was, it presents an opportunity to rise to the top; to give our audiences a more satisfying performance; to receive more praise, or trophies, and medals to show off to our friends.

For the humbler athlete, the gratification of challenge-induced improvement, which comes from within, and our teachers, directors, or mentors - is not only enough in itself, but it's the basic matter that completes our identity.


I could have just come out and written this in the intro, but that would ruin the suspense. (You were reading with anticipation...weren't you?...Just say
yes...Thank you.)

So, here it is, THE POINT OF IT ALL as it exists in my head right now (it will evolve, devolve, deform, and reform every day):

Now that I'm sick, I mean really sick - disabled, debilitated - I better get my broken ass in gear and break up with myself. Medically, physically, I can never be Old Melanie. And New Melanie is as impermanent as most of our incomes.

I've been working through this idea before the birth of this blog: before the onset of my Transverse Myelitis (TM); my divorce; the deaths of my father, uncle, and friends; my first dance injury and my last performance; the loss of my house, a stolen wallet, etc., etc., etc.

Wait! This isn't a "focus on the negative-oy ve-what's wrong with me-I'm so miserable-life is unbearable-self pitying" self-help column. And it's not just about me, me, me.

I feel the need to probe - and it's not revenge against all the probing inflicted upon me.

There are so many emotional, physical, spiritual, medical, and psychological effects that this catalyst of "breaking up" (in all its incarnations) imparts on our lives. If I don't explore this - if I don't discover what's worth breaking - I think I'll screw myself out of maximal recovery. I think we'll all screw ourselves out of our maximal everything.

How am I going to do this? My plan is to
research, scrutinize, and celebrate this subject's impact on our lives in real- and remembered-time: present, past and future. The break-up themes will be informed by interviews with myself (I'm easy to get in touch with), other neuro-rare-chronic-illness (NRCI) friends and strangers, as well as NRCI-impaired-free people.

Obviously, by the title, you've probably figured out that this is the first of many posts to come. (Here I go again, over-promising. But I really mean it. Really, I do.)

1 comment:

  1. I think it was inevitable.

    so beautiful words


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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.


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