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.


You Haven't Written. You Haven't Called...

I admit. I have been AWOL from the textual side of this blog. I hope it hasn't been too lonely or jealous of all the attention I've given to neuro art, which is also a detour, but one with a very different mode of expression.

Since I wrote last I've had:
  1. 7 sessions of plasmapharesis
  2. 1 permacath surgery
  3. 2 trips by ambulance to the ER in 1 week
  4. 1 hospital stay
  5. 2.5 5-day infusions of IVIg (I'm on the third one currently)
  6. 1 rained-out art festival
  7. 1 visit from a high school BF
  8. 1 emergency visit from my mother (on the 2nd trip to the ER)
  9. bi-weekly physical, occupational, and speech therapy sessions, and
  10. 1 break-up
And I've probably made at least 50 new paintings, collages, or drawings, plus a small chapbook. I've also recently:
  • doubled my dosage of anti-depressants even though there are still things and people that make me smile
  • taken 10 steps forward, and at least 5 back (cliche noted and accepted)
  • received two original hand-made canes for neurochic from 80-some-year-old woodworker, Bart Davis
  • filed for social security benefits
  • worked with my rheumatologist to find a method by which I can tolerate the chemo
  • used a Barnes & Noble coupon to get an amazing deal on some art magazines
  • was forced by circumstance to communicate with my ex-husband who despises me (how can anyone (other than the sick person them self) hate a sick person?!)
  • watched my cheeks puff to Biggie-Sized proportions
  • collected my south-bound traveling hair, aka alopecia and
  • used a knife to cut vegetables for the first time since I got sick

Despite all the progress, the full-time-ness of my sicko existence, and the ideas and projects I have splashing about in my mind, my Transverse Myelitis (TM)-Meds-Situational depression has my cheeks. If it were just the puff face, my vanity could handle the blow(fish...couldn't resist the pictorial pun), but this cluttered mind is overwhelmed and underwhelmed.

I'm bored.
I'm tired.
I'm sleeping my life away.
I'm bored with being tired.
I'm tired of sleeping.

Can anyone relate?

At my last doctor's visit, he said to expect another year of life as it is - symptoms, side effects, treatment I assume. Can I handle this? On some days, I think why not. On other days, I want to turn my tremors into an earthquake just for some excitement. Alcohol doesn't even bring me pleasure anymore...I'm too tired and nauseous for it.

Without wine, what is there?

And let's talk self-esteem. I am not used to this low self-esteem thing. And all because of some puffed up cheeks, an errant right side of my body, tremors, and myoclonic seizures of my entire body and vocal chords. Am I vain or what? Or is it deeper than the way I present to the world? I think it is. I know it is. But isn't it obvious - my mortality has taken a serious beating to its ego, and the "not drinking" to drown out my sorrows isn't helping.

But really, I think it's a triple-decker issue of pain, cognition, and time. All of which make expressing myself visually rather than verbally, more enticing. When you don't know what you're doing (as I have no clue since painting is new to me), there's excitement, doubt, questions; it's like a game show and I'm the host. It's like having a job that challenges you, which in my neuro case, isn't possible to any degree.

So Why Haven't You Written?
Because my life sucks, and I don't feel like I rock at the moment. I didn't want to disappoint you with my own disappointments. I'm Melanie, the optimist, the glass 2/3 full girl, the glamour gimp. Invincible, unstoppable Melanie. I didn't want to present the ugly side of me - the 'roid-raged-engorged-faced-chemo-nauseated-TM/meds-exhausted-barely-enough-energy-to-feel-sorry-for-herself-Melanie.

But here we are, guests at my pity party, and what does that get us? A real person, with real emotions that tumble and turn like laundry if I could do it myself.

Painting: "Puffy Cheeks" by Me


  1. Melanie,
    I don't check in often but when I do...your words so reflect so many things that I'm feeling also...

    It's tough because there are some days that I really feel pretty good and want to get out and go places....and then there are the other days...that I can't go anywhere because I don't want to have to hobble around the store and get all fatigued..and then there is the chance of seeing someone that perhaps I used to work with...I'm still not ready for any one of them to see me like this..
    Some days I just don't feel like I'm me or that I'm whole anymore.
    I'm sure you understand....
    Anyway...way to go with the art...I've recently discovered that I have a bit of a penchant for doing some wood carving. I have taken to making canes with woodspirit faces carved in the handle. well and take care...

  2. Kevin,

    Would you design a cane for the neurochic individual artist line? It would be a great honor.


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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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