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.


TM - Philly Style: Network Euphoria & Solo Depression

As I was limping through Saturday night pre-holiday packed streets of Philadelphia, I passed thousands of couples and groups of friends. Since I was alone, I could do as much wondering as my mind could handle. I wondered how they met, what attracted them to each other, what kept them together, who they were buying chocolates for, and what they had in common.

We choose our mates and friends based on similar interests. Lovers and friends don't need to have everything in common to build a relationship, but I bet the best ones possess something mutually unique that makes their bond work in both the short and long term.

When our lives are seriously altered, it doesn't have to mean that we can't still relate to our peeps or receive the same gifts of their presence in our lives as we always have. They have the best intentions in easing our pain and suffering, but when sympathy becomes the main force of our relationships, the word itself starts to snip into the fibers of the dialogue and interaction that once was so enticing to make us friends.

There's a reason why sympathy and empathy live so far apart in the dictionary, despite their complimentary roots. And while sympathy can be comforting in small doses on the right occasion from the right person (this requires profound intuition), it's also frequently uncomfortable and tiresome and ultimately places way too much emphasis on our illness, which we try so hard to forget.

Empathy takes us a lot further into understanding our own condition and it provides a platform from which to evolve from our situation. While there are occasions that the people in our lives can meet the definition of these two similar wor(l)ds, when one's "serious alteration" is a rare disease, it's equally as rare that this can happen.

Before I had Transverse Myelitis (TM), I never entered a chat room, didn't have a Facebook profile, the only networks I belonged to were ones that furthered my career, and the only support group I ever attended was for one of those "serious alterations", which was the tragic death of my father when I was 18, and in my 6 weeks there I don't believe I said more than a few words.

Since my TM diagnosis in September, and the continuing revolt of my body and mind, connecting with other people with TM has become a mission. While recovering is my top priority, having a network of support is as important to that recovery as the treatment, meds, and rehab.

Considering there are only 1400 new cases diagnosed globally each year, finding those people would and did seem impossible. During the two weeks after my first hospitalization, I spent my waking hours (which, as a result of high-dose steroids were most of the 24 in a day) researching TM, seeking a local support group (there are NONE in Center City), and following up with my other friends with various serious illnesses that I had met in the hospital.

While I found two great online forums for TM that offered virtual support and education (see "TM, Neuro, SCI: Social Groups, Support Networks, and Chat Rooms" links in the right column), I was disheartened and moderately outraged that there was nothing local in such a major city.

Having a rare disease with no clear path or prognosis is terrifying, and even though TM manifests differently in most of us, only other TM'ers can truly understand the myriad emotions and and physical pain that accompanies it.

Despite the unsteadiness of my state, my activist spirit was still sturdy, and I started Transverse Myelitis Philadelphia, a networking group for locals with TM. We began with 2 members and today we have 10, 9 of which have TM. We had our first gathering tonight, 4 of us were there, all of whom had very different TM experiences, from total paralysis to mild numbness.

I was the only one with a cane, Jocelyn was the only one who had developed MS, John was the only one who went from paralysis to completing a triathlon, and Denise was the only one who had become completely paralyzed from the neck down within two hours but considers herself 90% recovered eight years later.

If you watched us interact, it was as though we had known each other forever. In fact, having TM feels like forever, so maybe that immediate connection was just a natural bridge from our own unique experiences. And all of us have engaged in jobs or side projects to advocate, fund raise, or find cures for TM.

It was invigorating, inspiring, and surprisingly moving to be in their presence at once. And although, I felt all of this, that's also when emotional Melanie emerged, precisely as I was in the bathroom releasing my neurogenic bladder. Who knew there was a pee-mind connection?

Perhaps it was just talking about it for two hours with total frankness and disclosure, but instead of coming home gleaming from the understated empathy that exists among fellow TM'ers and the sense that I made three great new friends, my pee-mind-emotional connection persisted.

I may have lost the activist tenacity of the old Melanie (I was too tired to attend today's WILPF Middle East Committee meeting, of which I'm a member), but I'm still allowed to throw some politics into my posts. It's my blog after all.

So here it is, my first video diary captured with iMovie, in all its sappiness, sadness, hopelessness, and irrationality. I should be ashamed and embarrassed to post this, but these emotional discrepancies are part of the TM process, at least as I have experienced it.

According to the article, Demoralization and Depression in Multiple Sclerosis and Transverse Myelitis, by Adam Kaplin, MD PhD, my depressive response is actually normal:

"The brain has numerous functions. It is not hard for people to understand that the brain controls nerves that wire our muscles and that when people have MS or TM, the muscles may not work as they should...People do have a difficult time understanding that there is a part of the brain that regulates our moods....

There are many conditions that will cause depression, but transverse myelitis and multiple sclerosis are the record holders. There are higher rates of clinical depression in TM and MS than in any other conditions. MS has the highest rates of depression ever described, and that is because this condition attacks the brain in a specific way, and that attack leads to depression.

You can view the entire presentation on which this article is based.


  1. Melanie,

    I've been reading all your posts. They are simultaneously captivating and heartbreaking. I can't imagine what you're going through, and can only wish for the best possible recovery offered by modern medicine, ancient remedies, or pop culture - which ever you need to choose at any given moment. But if there is anyone I know that has the confidence and positive attitude to emerge from the other side of this as better person than when they went in, it's you. Anyone who hangs out with you knows you normally have a glowing aura of positivity surrounding you, and, ok, it might be a little dimmer than usual right now, but that doesn't change who you are, or the wisdom and happiness inherent in your decisions to this point. So don't second guess them or yourself or encourage any doubt about your internal capacity for happiness that has been only temporarily sidelined by one of the rarest diseases on the planet. You wrote that this was a normal part of TM, but did you know that it's also a normal part of the holidays? Indeed. The arbitrary celebrations of mice and men may not be of much concern to you at the moment, but the fact is that the holidays are one of the most depressing times for many people. So eff em. I was recently reminded of this by the movie Gremlins, which I recommend you check out if you haven't seen it in a while - hilarious. You have ridiculous odds stacked against your happiness aura and yet you're writing this beautiful blog and when you turn this into a lucrative book deal and your adoring fans and gentlemen callers are clamoring for more you'll look back and realize that even this hard time is part of the happiness you experience in the future, and is made even more powerful by these difficulties. I hope you look forward to that day, as I do. And whether a part of it comes as early as the new year or it builds up a little further down the line, I'll keep reading your blog looking for signs of it's arrival.


  2. i'm touched. i can't say anything. feelings are beyond my dictionary and beyond words...
    hope is our savior

  3. hi mel,

    i was thinking of you yesterday, i don't want to add much, every word in this video is a world in itself and there's a world behind it.

    do u know that i used to dance, too!!!! but not on a stage, i used to dance for myself, to let myself go. While dancing i insisted to reach a kind of flying or floating state, liberating my soul, wandering while wondering my body proprioception. i miss it!
    that's it, i just wanted to share this with you.
    i wish i can hold you mel, to tell you many things, but since 'ocean far' we are, i tell you one thing, i say it now and out loud! hear me! you can't be upset, nervous or angry! this affects and negatively alters the process of recovery! avoid being in a state of shit, i truly know that in a fraction of second i could fall into my deep shittiest misery; tangled in an extreme depressive state, but i have to get out of it, instantly, ANY WAY possible!

  4. although sometimes it's nice and effective to capture the moment...


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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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