WARNING: I'M ABOUT TO DISGUISE MY OPINIONS AS GROSS GENERALIZATIONS
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.
ONE IN A MILLION
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.
A REACTION AS IMBALANCED AS THE ISRAELI-PALESTINIAN CONFLICT
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....You can view the entire presentation on which this article is based.
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.
