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.


The Shortest Day, So Let's Make This Short

The Winter Solstice, which is today, is the shortest day of the year, and it's also symbolic of new beginnings and reversals. According to the not-so-reliable-but-so-convenient Wikepedia:

Midwinter festivals and celebrations occurring on the longest night of the year, often calling for evergreens, bright illumination, large ongoing fires, feasting, communion with close ones, and evening physical exertion by dancing and singing are examples of cultural winter therapies that have evolved as traditions since the beginnings of civilization. Such traditions can stir the wit, stave off malaise, reset the internal clock and rekindle the human spirit.

While physical exertion is out of my limits today and my singing would kill a newborn, the rest of it sounds like a damn good idea.

For those of us dealing with rare, painful, or incurable diseases, days are rarely "short." Seconds are minutes, hours, weeks, or even years. And no early sunset can change that.

This has been no solstice day for me:
  • Asleep at 1AM, up at 4AM
  • Seven hours of wrapping up outstanding personal, medical, and new apartment to-do-lists-and-last-minute help-from-mother-before-she-returns-to-Pittsburgh from 6AM - 1PM; still so much more to do
  • Unwelcomed goodbyes
  • My own further decline into transverse myelitis (TM) despite my recent plasmapharesis treatments and increased meds dosages
  • Processing the guilt of forgetting a best friend's birthday because of my sweeping self-involvement
  • Buying last minute holiday presents online for my brother, sister-in-law, and nieces while checking and cross-checking pay dates and bank account statements
  • Wanting to buy gifts for everyone who has helped me through this period but being persuaded by my rational mother that this is neither the time to be spending so much money nor the expectation of my friends
  • Processing that reverse responsibility
...and doing all of this through the pain, cognitive, and mobility challenges of a disorder in decline despite a vicious healing regimen.

But here's my theory for today. It's a holiday, or at least it's someone's holiday. That's reason enough for celebration.

Question to Self: But how does one celebrate, when the greatest length of nearly every day is mired in struggle, pity, pain, disappointment (name the negative, and it's probably on the guest list)?

Answer: Repeat mantra, "My Life Sucks, but I Rock." Shout over the needling voice and stomp on the internal clutter of debility, and have a toast to disease-induced depression, distraction, refraction, fatigue...the list goes on.

Symbolism is what we make of it. It doesn't have to last forever, but for at least tonight, I plan to take advantage of the inherent meaning of the day - stonewall the omnipresent The Nutcracker soundtrack that plagues homes and cities (and even MRI cubicles) this time of year, and get over myself and all the shit-crap-bitch slap-vexation that accompanies me even when I'm smiling.

Wouldn't it be great if we could make any long story short? Ummm, excuse me, but no verbosity jabs please. I've had enough short-range punches this season.

I may not be attracted to short men, short leashes, homemade film shorts, short shorts, or any kind of pant that cuts above the mid thigh, and I've had it with short-term memory. And through repetition, the word short itself is really starting to irk me.

But at this (hopefully short) stage of my life, I'll take a short day - a second that really passes as a second or an hour that is only 60 minutes. Reality is such a foreign concept to people like us. But I'm going for it, and I haven't even had a cocktail yet.

Maybe tomorrow, I'll be reborn immune to personal suffering, or better yet, TM. Somehow, I doubt that, and I'm sure those of you who are or are not sick do too. But it's fun to ponder, especially when the idea is ours and not some doctor affirming best-case-scenario-only's, which lead to worst-case-disappointment.

While I may trust my doctors more than myself when it comes to my treatment, I'd rather be disappointed by an evening of symbolic role playing than someone else's bullshit optimism.

So here's to the self-made moment - a good moment in real time with realistic expectations. And here's to not being able to meet those expectations but trying. And here's to life sucking but rocking despite that. And here's to my mother, brother, Marci, other family, friends, coworkers, and strangers who may hopefully not ever know what a challenge it is to control one millisecond in time.

And, of course, here's to recovery, or rebirth, or the Winter Solstice, or whatever you want to call it. We all need it in our lives for some reason or another.

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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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