| The New York Optimist |
 |  |  |  |  |  |  |  |  |  |  |  |
SHARE
Living Obliquely: Rare. Chronic. Incurable. Transverse Myelitis & Me.
Approximately 1400 people are diagnosed with Transverse Myelitis (TM) annually.
Similar to Multiple Sclerosis (MS), 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’m 33-years-old.
A Little History…
Despite the fact that I was a dancer, my body has always invited unusual experiences--hit by a car, car jacked at knifepoint,
flat-face-lip-scarring-fall in Germany, cellulite, you know, the norm.
On 2008’s labor day weekend, after purchasing a gorgeous turquoise Helmut Lang jacket at 70% off from my favorite
boutique, Joan Shepp (Philadelphia, PA), I was strolling tight-jeaned by the haute and happening weekenders basking in the
sun at Rittenhouse Square and strange things started happening to my body — weakness, pain, tingling, loss of bodily
control, etc. (I'll spare you all the details).
Needless to say I was freaked out, and in the following week I saw a new rheumatologist, my nephrologist (I was diagnosed
with early stage chronic kidney disease three years ago), and my urologist. (Are you thinking: HYPOCHONDRIAC? I
certainly have, but over my past four health-insured years, I actually have been legitimately diagnosed with a slew of less rare
diseases for which I’m under ongoing care.)
I was certain that amongst them and my goofy body there'd be a reasonable explanation, an adjustment of my meds and diet,
and whaaala, back to "normal."
Normal: Not quite
All docs suspected MS, and implored me to see a neurologist. Though upsetting, I wasn't too distraught (at least that's how I
remember it now), because MS is so treatable today that many newly diagnosed people leave mostly normal lives.
By my last doc appointment on Friday, September 12, 2008, I was amply convinced that a little further exploration might take
a few hours away from my benign social life, but I wasn’t about to spend the rest of my life pissing myself in public
(oops…there’s that little detail I said I’d spare you), so I walked myself over to 219 N Broad Street to take the plunge…so to
speak.
Dragging One Foot Forward…
As crazy moon-star-Jupiter-alternate-galaxy alignment luck would descend upon me, Dr. Schwartzman, the chair of
neurology at Drexel with an irreverent sense of humor that so matches mine had a cancellation for the forthcoming week
(otherwise, the wait would have been through '09). I had an MRI with Gad contrast of my head and spine that Wednesday
and dragged my scared, weak, right leg into his office on Thursday, September 18 – a date I will never forget.
Within 1 hour of Q&A, pricks, pokes, and other clinical examinations, Dr. Schwartzman diagnosed me with transverse
myelitis (without telling me what it is), a rare neurological disorder most often caused by autoimmune disease. The office
arranged for me to be admitted to Hahnemann Hospital for “three” days (i.e., Dr. Schwartzman’s interpretation of numbers is
very different from the rest of the world’s) that Monday (which turned into 6 days) for IV Solumedrol, a 1000mg/day steroid
treatment, and more tests, including a spinal tap (ouch is right), to get a complete diagnosis.
No big deal right?
That’s the impression I got. One week on steroid drip, two weeks on steroid taper, and I’d be back with a bladder armed to
let everything else loose on the dance floor.
There’s No Place Like Mom: Mom to the rescue.
Mom flew in from Pittsburgh that Monday morning, suitcase packed with sappy foreign films and Beaches (who watches
foreign films or Beaches in a hospital?!). She extended her flight twice as they kept extending my stay and slept with my cats,
as well as my aunt Marci (who made a surprise visit from Montreal and picked up the cutest, comfiest Victoria Secret
pajamas for me to wear in the hospital). NOTE: Feel sick? Feel pretty. It works.
The four of them — Mom, Marci, Max, and Leo — tucked neatly into my 300 sq. ft. studio apartment tolerated my ‘roid
rage, and mom did her best to get some cute residents in my room...for both our benefit...to no avail.
On the Bright Dark Side (bar)
Although I'm not claustrophobic or prone to anxiety, when asked this important question prior to my MRI, I did answer yes
because they give you Ativan, a beautifully mind-numbing, pain-forgetting narcotic, which I willingly intravenously accepted.
After four days, my concerned mother, who was always sneaking peeks at my chart during rounds, saw NO MORE
ATIVAN written even more boldly than that next to my name.
It was good while it lasted.
Two Weeks & Out of Dodge...
Two weeks out of the hospital, and my promised recovery was slow. I was still on high doses of steroids, which my guy
friends thought made me cuter ("less gaunt" in the face is a compliment, I guess).
I just saw a puffball, a puffy, zitty, ball of a face, but carefully applied bronzer is a magical mask. One check for Melanie.
One loss for vanity. I was also on narcotics designed for neurological pain, which helped the fire in my body subside a little
bit, but not much. And with the steroids…I didn't even get to experience the narcotic high. Shame.
Shame.
Bummer.
Today’s Another Day
My first TM symptom was either mid August (vertigo with knees buckling, day spent in ER, discharged as fainting spell) or
the beginning of September 2008 (details already given). That puts me at 10 or 11 months into my 2-year recovery – from
which I had my first relapse two weeks ago.
How can one relapse before they’ve recovered! And how am I supposed to stay optimistic when I’m falling apart in ways
weirder than I’d ever imagined a body could fall?
Mobility is still not my strength. The right side of my body doesn't work very well. I walk with a cane that I punked out with
a studded belt, and I can't walk for long. Think 10-minute blocks rather than 10-minute miles. So I'm sticking to my 2-block
radius for now, which happens to be the best 2-block radius in Philadelphia. There. I found a bright side.
Some Sap with your Slapstick, Please
I have to be grateful. I am grateful, on so many levels of what this disorder and being a full-time sick person could proffer.
Let’s start with the fortune of having great, caring friends here in Philadelphia – some of whom I've met over my past four
years here, some Pittsburgh transplants who I've known for more than a decade, and many whom I've met since I
fortuitously moved into my current residence 2½ years ago.
Locally, friends, acquaintances, and strangers are reaching out and offering their support – from grocery shopping and
cleaning my apartment to beauty treatments and relaxing dinners at one of the cozy restaurants by my building.
I’ve also built an in-person, telephone, and virtual community of TM Friends from this city to Canada, Illinois, Beirut, and
New Zealand. We’ve met through online forums, my blog, http://neurodetour.com, my videos on YouTube about my
experience with TM, and Facebook. Five days out of hospital (I was wired on steroids) I started the TM Philadelphia
Network, a social group for regionals with TM, which has grown from 1 person to nearly 20 in less than 1 year. That’s a
high number for such a rare disorder.
This is where I get my empathy. Even the most caring person’s sympathy doesn’t change the feelings I have about my body
and mind’s debilitating, painful, physical, emotional and cognitive revolt. If you don’t have TM or a similar neurological
disorder, you just can’t get it. And that’s OK. We TMers need you.
We need your smile, your encouragement, your presence, your vacuuming skills, your phone calls just to say hi. Because we
are so alone. We are sick. We have lost so much of ourselves, including our identity, and our ability to function in society as
we had seen ourselves functioning before, as we saw our future to be. When you get TM, you get a life makeover.
You cancel your vacations.
You lose your job.
You lose your sight, your hearing, your memory, your mind.
You lose yourself.http://twincityrestaurantweek.com/
You lose friends.
You lose your drive.
You lose your social life.
You lose your independence.
You lose your license.
You lose your appetite.
You lose your face.
You may be disfigured by portacath and permacath surgeries.
You find family or family finds you.
And you find solutions. You must be your own solution.
You become your own measure of time.
You become your own gauge of distance.
You do physical, occupational, and speech therapy.
You find new means, new outlets, or you just give in.
Anticipation
I've known for about 2 years that it would be likely that some time within the next 20 or so years I could have an
autoimmune disease, and compared to how things have turned out, my little bit of early stage chronic kidney disease was like
a pimple with a fantastic benefit — it kept me skinny.
I thought when I got my diagnosis of psoriasis last year, which as far as autoimmune diseases go and how it's affected me
has been mild and not a huge inconvenience, the picture was complete.
But the complete array of autoimmune diseases causing the transverse myelitis still hasn’t been diagnosed. It could take years.
The big hurdle now is recovering from the TM. I need to keep practicing positive thinking, but it's not coming to me as
naturally as usual. According to my doctor, stress is the worst thing for a neurological patient. And I’ve felt that to be true –
like pins and needles digging into my spinal chord.
Doctor’s…and Mother’s Orders
Over this two-year recovery period, I'm supposed to get a lot of rest (which is against my nature and even harder to do on
steroids), avoid sick people, reduce my stress, and in the brilliant words or Dr. Schwartzman (NOT my mother), have sex
and drink vodka.
I like him.
My Aunt Marci has also offered her intercontinental companionship for my wine-drinking therapy. Hmmmmm. And I thought
I'd have to do it all on my own.
Jobless now, I’m barely making it on long-term disability, but I’m seeking new vocations and interests. I need to be inspired
to live. I want to be busy, but that’s not good for TM, and I generally need a 3-5 hour nap during the day.
Since I lost my dance and my poetry, I found painting in January, and I’ve sold about 10 paintings already. I’m slowly
building a new online fashion business for people with disabilities featuring one-of-a-kind canes and other durable medical
equipment (DME). I’m advocating for other neurological, chronically ill, rare disease carrying people and people with
disabilities.
My likelihood for total recovery is decreasing, but I also (think I) know that if anyone can do it, I can. I am a direct
descendant of survivors of all kinds, and I have really high good cholesterol, so I should be good to go.
And if I don't recover completely with the steroid, plasmapharesis, IVIg, and chemotherapy treatments, my doc and I will
keep trying.
But I am so BORED with being a sick person! I receive 5-day infusions every other week from a home health nurse, I lose all
my energy walking a block with a cane, I can’t remember what I’m talking about mid-word. I feel like a burden.
But for now, it's that hackneyed but oh-so relevant expression, one day at a time. (Amendment: One moment at a time.)
I'm very lucky. Remember, remember, remember this. One more week without treatment and I could have been paralyzed, as
50% of people with TM become, which is when most are first diagnosed.
AND on top of that…
I'm not the woman walking down 17th street cradling her bunny rabbit with a green bow around it's neck…I don't have a
yappy republican Jersey-girl voice…I once could afford to practice retail therapy (liberally until January)…and of course so
many more meaningful things like having who I can only know to be the best family and friends in the world.
So thanks family, friends, and strangers for giving me purpose. Writing this has given me purpose. Thanks for being there.
xo,
Melanie
| © MMIX, The New York Optimist LLC. All Rights Reserved. The New York Optimist & www.thenewyorkoptimist.com is a registered trademark of The New York Optimist LLC. The New York Optimist is a registered service mark of Thenewyorkoptimist.com. The New York Optimist logo and original photos are a registered trademark of The New York Optimist LLC. All other photos are property of the advertiser. And are rightfully protected under their copywright protections. |
