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.


To My Readers: No resolutions. No holidays. I'm celebrating you and the moment.

As you've gotten to know me through my posts, you probably already know that publicly recognized holidays don't mean much to me. I believe every day is worth celebrating, and I'd like to think that with my daily struggles, I still recognize a moment to smile or toast or shake my booty in commemoration of even the commonest gem of daily living.

Daily celebration is hard to keep in your calendar when you're healthy. For those of us struggling with painful, rare, chronic, or terminal diseases, or just the common cold, I'm not certain which direction the scale tips. We may be more cognizant of a fleeting moment of bliss, or we may be mired in the myriad responsibilities and distress of our disease.

Nothing is absolute. Everything is relative.

For some, 2008 was a shit year we'd rather erase and race into 2009. For others, it may have been the best year of their lives.

But why measure life in years? After all, some people have a lot of years ahead of them, and some people have just moments. That's blatant discrimination!

Although I haven't responded to any comments, I want you to know that I celebrate every comment posted on this site and every email sent in response to a post. You're responses, participation, support, and the feeling I get from the potential to help others by sharing my very personal experiences of living with a rare neurological disease is as potent as the ball drop in Times Square.

I love toasts, and I'm not going to hold back just because it's an expected ritual of a holiday that is meaningless to me.

So I am raising my coffee mug in this moment (2:42 12.31.08) for a vague but gracious toast:

To you, my readers, and to my friends and family, the healthy and the sick, the happy and the sad, the free and the imprisoned (wrongfully or not), the good doctors and the bad doctors, the artists and the stock brokers, the rich, the poor, and the bourgeoisie, the TV stars and the couch potatoes, the givers and the takers, and everyone I've failed to mention...

May we all have as many moments as we can collectively greet of happy, healthy everything.


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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.
To play the slide show, click the big play button in the center of the screen, then the small one in the bottom left corner. Click here for more advanced viewing instructions, and select "Help."

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