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.


Cognitive Goofball: Anecdotes from the Underbelly of TM

NOTE: Some names have been changed or omitted to protect the innocent.


Neurologists Practice's Packed, Dining-Hall-Sized Waiting Room in Downtown Medical High-rise
(Imagine lunchtime at the only senior center in town.)

Front Desk Nurse (FDN): Middle-aged African-American woman dressed in pastel scrubs, with a hard here's-the-deal-so-deal-with-it personality that permeates all office tasks. It's unclear to anyone in the waiting room what her "job" is, but she is always "busy."

Melanie (Mel):
Vision, memory, and walking-impaired, full-body spasming, cane-toting 33-year-old neuro patient with rare disorder. Always late due to what-did-I-forget-repeat-as-she-leaves-her-apartment-syndrome, she is anxious for "answers" during her first follow-up with her (love-hate-love relationship of a) genius doctor.

Other patient: Tall guy. Mid-forties. Button-down shirt.

Extras: About 35 neuro patients, family members, and spouses, mostly in their late forties to eighties.



(standing behind front desk; booming, agitated voice)

Who signed themselves in as Dr. Schwartzmanderin to see Dr. Schwartzmanderin?

All eyes go to FDN. Waiting room extras look for the idiot culprit.
MEL, knowing she had just signed in to see Dr. Schwartzmanderin after OTHER PATIENT, shouts back across the room while looking toward Other Patient who seems smugly non-neuro.

Do you have Melanie Miller on the list?

(looking at her clipboard)

(looking straight at FDN, with complete facetiousness, while laughing)
Thanks for announcing my cognitive issues to the entire waiting room.

MEL looks to extras for ha-ha camaraderie. No go.

You need to come up here and fix your name.

MEL picks up her cane, pushes herself up from her comfy office chair and limps 15 feet to front desk. She looks for the cognitive faux pas, crosses out Dr. Schwartzmanderin's (under patient name column only) and writes in her own above his, walks back to her seat, and drops into the chair. She sets down her cane, which falls to the floor, as usual.

Melanie Miller

(picking up her fallen cane)

You can come back now.


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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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