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.


What We Were...a psychogenic illumination and Q w/o A may've heard it before, but hear it again.
About 1 month past my 33rd birthday - when I had danced in my fave platform sandals that highlighted my modeled calves and thighs, partied among a collection of mismatched and matriculated friends, drank wine, ate with a full appetite both for food and life, drank more wine, and snuck hand-holding with man of the month (not my month, but his) - I found myself lodged in an unexpected world, a trip and tripping...2 Septembers ago, 4 weeks past a month of unfathomable, unnameable outer-body, outer-mind, outer-control-of-my-own physical and mental experiences - from street-spinning vertigo, buckling knees, emergency room visits, public incontinence, and finally partial paralysis and full-body pain and sensitivity making walking nearly impossible - I had the luck, yes I said luck, of receiving a swift and accurate, yet unexpected and unheard of diagnosis - Transverse Myelitis (TM).

Immediately hospitalized for more than a week on 1000mg of IV steroids and myriad tests, my doctor was hopeful, or at least he used his doctorly knowledge of the benefit of hope to tell me, I'd be back to normal in a couple of weeks - back to dancing, boyfriends - as many as I wanted, and my job - those things we call freedom.

In those two weeks, my condition worsened and with ongoing steroids stealing my sleep, I had the time and (still) the mental capacity to research this strange and rare condition. Within less than 2 weeks, I was back in the hospital; this time for two weeks receiving two treatments to cleanse my body of the angry antibodies that were attacking my nervous system and spinal chord.

I had lived a life of luxury - not financial, but emotional, experimental, risk-taking, following my humble choreographer's vision to change the world, or at least, a few square miles of it with the communicative and evocative power that only the body in architected motion and meaning, and the mind dedicated and directed in devoted poetic outreach and activism.

Why was my body, that for nearly a lifetime I had sculpted, strengthened, and serviced like a mustang and its overzealous owner, so angry at me?

BACK TO SICK BAY...sea sickness and docking
The second round of in-patient treatments - plasmapharesis followed by IVIg - helped, but didn't fulfill my doctor's promise. He changed his prognosis to a long, arduous 2-year recovery period, yielding an undefinable prognosis.

However, Dr. S promised he would do everything he could to bring me into the realm of the top 30 percentile of TM recoveries, returning me to my previously full-body control state - bladder and all - or at least as close to it as possible. The 2nd third promised minimal or no change, and the bottom third, a bedridden lifetime or ceaseless paralysis.

Since the first symptoms appeared about a week past my birthday, I figured by 34 or 35, my struggle would be over; the prognosis finalized, I'd pick up the pieces, work with what I had, and get back to a normal life - fleeced of uncomfortable and time-consuming treatments and a body in revolt.

That actuality almost ended one day before my next birthday, when the second diagnosis of Multiple Sclerosis (MS) was confirmed and delivered. Although closely related to TM, 97% of people with TM, especially those that fall in the 1st 30 percentile continue throughout the "recovery period" to experience recovery, while MS, for most is forever degenerative.

Even though I didn't yet fit in that tantalizing 30% TM category with new symtpoms popping like movie corn, and old symptoms ebbing and flowing, my doctor and I still had hope, and he still promised things will get better - at least on the TM side.

But now there was not only TM and its accompanied autoimmune encephalitis that clouded my cognition and former intellectual musings and doings, but there was MS. One with an up-view, one with a down-view, and possibly both just waffling along on a fixed tightrope. So the MS treatment started and six months later my lesions held there ground, which is something I consider lucky. My MS was standing ground, not degenerating.

This all came following many return hospital stays - my body and mind not only in revolt, in states of varying dementia, but pain greater than being run over by a car - and I had the right to make that comparison. My cane, a walker, a wheelchair - I knew these mobility assistance devices well; I was naked, if not useless, without them - naked in every sense of the word.

I came to terms with the TM and its recovery period. I accepted the MS. I did my mourning in due order. I had let these disruptions become a part of me, as well as the deformations of mind and body - whether or not friends, lovers, or strangers concurred.


When I returned to the hospital, by then my second home, in February 2010 due to a public relapse that rendered me attached to a lovely but highly-priced couch in West Elm, waving off the sales people who thought I was there as a customer and not a patient with the inability to exhale, speak, or swallow, profound internal and external pain and weakness, and a well-timed stay for my necessary fistula operation (another physical deformity that I hadn't been fully briefed on, also used for dialysis), I was ready for the same old same old.

Not this time.

THEY SAY 3(and a 1/2 and then some) IS A CHARM
RSD. Another diagnosis. Another incurable and barely understood neurological disorder. A painful, ugly, unimaginable pulverization of my peace.

And not only RSD, osteoporosis and chronic anemia as well.

J., one of my regular nurses said, I thought you were going to get that [RSD] diagnosis. When I asked how she knew, she replied that my previous stays and their accompanied tear- and (not my quiet, stoic high-pain-tolerance-way) shriek-inducing bodily-induced-torture that tipped the scale to a hell I didn't believe in, had all the markers.


Most of you know all of this already.

Most of you may not know, now, when I asked that pervaisve question, what do you do?, I answer plainly and truthfully, I'm a full-time patient.


I'm returning to the history of my neurological detour to make a point that found its voice in a delicate woman - my IV Ketmaine booster neighbor of the week. (I'll post the Ketamine cam vids later, at a more appropriate time)

When it was just TM; when it was just TM and encephalitis; when it was just TM, encephalitis, and MS, I still introduced myself as a freelance writer and an artist. Even though I was on long-term disability and SSDI, and that glorious work that once defined me, that gave me purpose, something, anything to look forward to was becoming more and more of a mirage, I knew I had a future - something to go to, someplace to arrive, some kind of existence in which I could be and do and contribute to this thing called society, a community that I still belonged to in some way.

But know it's more than a neuro detour, it's neuro soup, and the basic ingredients are identified (thus far), but the subtle spices that give it its flavor are a mystery. A mystery that is even more spicy than the life I can live now.

This neuro detour-soup is a life of what was, the way we were. In the infusion suite where we are a community, and in that other real world filled with fully-abled, employed and under-employed citizens, we introduce ourselves as what we were:

I was a dancer.
I was a mother.
I was a doctor.
I worked construction.
I was a student.
I was, I was, I was

We talk in terms of what we were, not who we are. And rarely, if ever of what we could be.

We have so many stories of disappointment, loss, pain, mistrust.

Like my compatriot in the reclining chair next to me awaiting our treatment - our hope for some release from the consuming pain, swelling, burning, and sweating of RSD - her family doesn't trust her with her grandchildren - mine with my beloved nieces.

She tells me this. We both cry as silently as possible.

Even in the people's eyes who know us best, who you'd think know our capacity, we are not trusted. We are as unreliable as an addict, but the only addiction we might be guilty of is hoping for a cure, an end, someone, some people who will accept and love us for who and what we are, those special souls who will stay and stay true to who they are and who we are.

It is hard to have hope with these conditions.

It is hard to have hope when insurance companies deny coverage for the only treatments that may bring us some relief, hopefully even remission.

It is hard to have hope when friends, family and lovers give us all the love and support the globe can sustain and when the flare-ups takeover our ease, our freedom, they take their freedom and run - fearful that we'll swallow theirs too.

Yes, hope is imperative. Goals, careers and futures give lives meaning.

So tell me, where do we, the incurable neuro-ites, the stoic pain-stewards, the logically hopeless keep that precious medicine in our personal sphere of self-protection and healing?

In this neuro-life, it is the experience of many of us that the people we love and admire stop trusting us, stop feeling comfortable around us, stop wanting us - in our less than perfect state - in their lives as we are, or as we could be? (Sidebar: If I find the purpose and/or strength and/or utter openness, I will offer physical proof in a future post.)

How do we keep hoping? How do we continue to trust? Can you tell me this - honestly?

I want to know. Trust me.


Our Day Came and Australia?!

I'm embarrassed to admit, but I rarely look at the News Listings on my own blog, but psychic energy drew my eye there today. And what did I learn, Australia has a national Transverse Myelitis Day!

Unfortunately, many of the few of us missed the opportunity to join in this year, as the little known day, May 17, has passed.We could make our own, but why not join forces? Why not initiate an international TM Awareness Day?

We could do it grassroots, but I'd like to make it official. Don't you? So.....


  1. ***Does anyone out there know how to make TM Day an international reality?
  2. ***What organization(s) are responsible for actualizing this & what is the procedure?

Don't know yourself? Don't leave us TMers hanging without our own holiday....

Tweet it. FB it. Ask your family doc. Ask your local politicians. Ask God, Jesus, Buddha, your hairdresser, manicurist, or neighborhood psychic.

And while we're at it...let's work to unite all neuro-ites with an International Neurological Disorder Day (bolded in place of a much-deserved hyperlink) too.

You may be asking, Why don't you, Melanie, do it yourself? The answer - I'm impatient, I want an answer/resolution asap, starting tomorrow I have a week of double treatment (IVIg & Ketamine Infusion boosters), I'm entering another RSD flare-up, I'm exhausted and cognitively impaired, and I can't do everything. I can barely do the requirements of a full-time sicko, let alone manage my life and the lives of every TMer across the globe.

When I started my professional dance career, the first choreographer I worked with often said, It's my job to make it up. It's your job to remember it [do it]. So everybody, let's listen to Patty, and immortalize her contribution to the dance world...and my world.

Chop, chop! I'm looking forward to a lot of comment responses to this one.


Miss me? Come See me this the TA Arts Fest!

Click on the title link above to be taken on a swift journey to one of my many blogs...where I decided to post all the juicy details.

Ta ta,


I Wanna Be A Cheesy Pop Star

Despite the fact that I can't carry a note - the musical kind that requires born-to-be-heard-when-a-bomb-is-not-being-deployed vocal chords nor the physical kind that requires first that you remember what you want to write on the note to remember later and secondly that you remember later that you wrote a note (due to poor genetics and rampant Jewish inbreeding and then neuro soup neuropathic spasticity, pain, and enhanced physical and mental clumsiness), I wanna be a cheesy pop star.

Jeez, that sentence is about as close as I can get to doing the running man - another requirement of being a cheesy pop star.

Aside from all the obvious just-becauses, such as:
  • you're a-glamour-gimp-that-"dances"-to-a-really-really-really-different-drummer
  • honey-you'll-never-be-Cindy-Whitney-Britney-or-Barry Manilow-for-that-matter
  • chances-are-you'll-be-sleeping-when-you-should-be-gigging
  • nice-Jewish-girls-don't-show-their-Lady-Gaga-in-public
  • girl-you just wanna have fun- shuuuut uuuuuu'
I miss being a performer.

When I see cheesy pop stars performing on late night TV or in over-sexed videos dubbed over in German on You Tube, I want that leather jacket. I want an excuse other than, my brain is losing my vision to wear my sunglasses at night. (You know I can't resist....:)

AND, even though I thought I was ready to hang up my callused feet at 30 when my body gave me no other option, I miss being a performer. I could say, I miss being a dancer, but that's just too obvious, and I'm not sure if that's as accurate either.

To be or not to be?
Well, if whoever actually wrote that question was a performer, they'd know the answer.

When I was a performer, avant-garde and wacky as I was - whether it was dancing down the aisles in a paid performance at Whole Foods; rolling across the Benedum stage with the duke in Rigoletto (I even got a "nymph" (really, that was the title of my role) shout-out for the saucy sexiness of that in the review); dancing in my own works on small stages (for small audiences), street corners, and strange site-specific locations; or the handful of poetry readings that I gave... [OK, Melanie, we GET it] I "t0-be'd", i.e., to perform is to be mortal, or philosophically immortal (don't worry, I'm not gonna go there...again).

I existed! I was alive! Of course I was, I must have been if I were breathing that heavily. I actually liked to sweat, altho I could have lived without the slick glaze it mummified into as the clock struck 3 mojitos past post-performance.

I loved it all - from plies to performance. I secretly even liked the reviews - except for the bad ones, and luckily my career was cut short before I accrued more than 1 accost to my baby, my vision, my work, my lover (if you haven't figured it out, all of the previous my...s are referring to the SAME thing).

Bad review = devastation, yes. But, the show must go on, and it always did. And, the drama. Oh, the drama! There was usually more drama back stage than on stage, and 'tho as the director, I actually hated that part, I suffered through it for the ultimate payoff:

To be a performer. To make an impact. To share my joy with the thousands who travelled through the past-lives of my outreach work.

Aaaannnnd, if I were a pop star, I could truly say, my life sucks but I rock, with literal integrity.

That "hit" would be the neuro hit that keeps on hitting.

My dear fellow sickos:
if you're anything like me, you probably often feel as though you barely exist. If it weren't for the pain that reminds me my body is a body - as in human body and not all the other possible definitions of body that I'm too lazy to turn into cheeky, cheesy, pop star-worthy prose.

As a performer, I was real.
As a performer, I mattered (to a select few give or take...).
As a performer, I breathed deeply.
As a performer, I controlled my body.
As a performer, I had a bangin' body.

Damn, I miss those days. And I miss the precious people I performed with. These people, for the most part, were part of an elite class of childhood misfits that finally found their clique. As dancer or choreographer, I was part of something, of a zesty, zingy mini-community with such drive and dedication and passion, as an international movement to bring that other kind of movement to life, into its language, and offered to the living.

As a sicko, not only can I not legally drive, but it's hard to maintain that "drive" that once woke me after 2 hours of sleep to record my visions that would be translated and bloomed by my group of dancers and collaborators in the rehearsal studio.

Now that I'm post-Ketamine (more on the news behind the missing Ketamine Cam days 9 and 10 later) kaput and sans-oxy-soporific, my drive is stuttering, if not stalling out. And I need that drive to get better, to live a life as normal as possible, even though it's painfully true that the possibility of an end to this neuro mayhem is 99.9% implausible and that my new destiny is not to rock out before 1000's of admiring fans but mix vodka on the rocks with unmentionable meds to get even a bit of pain relief, but never - as science exists today - will I be fortuned to live a day without pain.

At least performances end. And if you're a lucky audience member, the program tells you approximately when, including potty or cig breaks as well.

Shameless, I know, but I'm including the promotional video from my performance, the Pittsburgh premiere of "Mission", that a) preceded my exit from the bright lights of regional fame (but on the brink of international stardom, of course), and b) lead to a not quite spread-to-thin (not in weight) Mel, as I soon dropped the dancer credit from my name. But, I'm in this one. Look for the bald girl.


The reason why there was no Ketamine Cam Day 9 or 10 is because I flunked out. I.e., during my Day 9 infusion, I had what you might call a "bad trip" that was explained as a bit of an overdose/system overload, so I was kindly kicked out of the clinic before the infusion would come to its natural conclusion; and in my psychotic state, comforted by the nicest neuro nurses and docs this side of PA.

  • Tomorrow, or rather today, I get bloodwork to check out the level of that oh so special K in my system.
  • Saturday, the 22nd is the Trenton Avenue Arts Fest. COME. BUY. HELP.
  • Next week IVIg continues.
  • Then Ketmaine infusion boosters begin the week after that, and on and on.
  • And, plasmapharesis, is next month, marking the deflowering of my fistula.


Ketamine Cam 4.12.10: Day 8...with special on-phone guest

There are 3 videos in this post, because I, ummmm, am still on ketamine while trying to be a rockstar procuder.

and here's #2:

and here's #3:


Ketamine Cam 4.11.10: Day 7 Part 2...with special guest

...and fr those of you you who don't understand that there is no end until you've scrolled there, I managed to capture today's report in one single shot. Haha!


Even on the Worst Neuro Days, Mom Matters Most...

of the time. Just kidding, but capably
you're my canopy. Even when capriciousness drives
us to polar sides of PA, just because
that's where we live.

You try to convince me
come back home but
that's your present and my past

tense = tension, a trivial life

of tapping
twiddling already
twitching fingers
centrifugal clonus - not a body

on the go, and I'm corny
and cliched with gratitude, awe
for your less than 24-hour
cleaning skills

when the clutter/chaos/call-to-duty
my two homes:

compound into a constant
cat hair

coats coating
once upon-a-time cream-colored carpet
as endless

winter winds that collapse
this caned lady
swishing ear to ear

What's the big deal with vertical?

circular red pills
oval pink capsules
oxy oxy oxy
cotin codone


in my swallow, soundless. So you fly
to me, under the wire,
and that's and those are the same

wire(s) that wrap my recalcitrant
neuro body in conflict,
clinical trials,
insurance corruption;

CRPS (look it up, lazy, then thank your unhindered cognition)
trippy daily treatments;
convulsions; cramps, cricks, & caustic
integument cracking -

an egg on steroids
as my corpus
out of itself;

curse the contiguous
moments of cureless
unconscious health


cause constitution collapse (on the couch
or less corporeal iterations); and ceaseless alliteration

'cause I'm cool and crafty like that
even tho I'm too conked

copious (nar)cotics
constructively commonsensical
(yet uncovered)
Thank you

mom, it's mother's day, one day
past yet another day we call a ride.

Once upon a time, you don't mind roller-coasters

except for this
a crockpotted neuro-concoction
that keeps
on keeping on
crumbling a life that we (altho probably differently) conceived.

Cheers mom.
Prost mom.
Grandma, thank you for calling.
Cheers mom.
Genatzt mom.
Salud, Sláinte, L'chaim!

We both like vodka.
I'm happy we both like vodka
at noon
at night
as closeted contraband
in home/hospital


Mud in your eye, but you're soft
Mud in my eye, because I'm numb
and ossified. Mud in
muddied, vacant, blurred,
blind, breathless, buried

eyes. Aye, aye! It's always as true
as volcanoes in Indonesia,
bottoms up
bottom's up
bottom's up
bottom's up


Ketamine Cam: Day 5, Friday, May 6, 2010

I almost typed that it was 2015, not a wall street bubblegum thumb-o just a mel-o-neuro...but alas, I almost lucid enough to catch my own bottom breaking catastrophes, or at least i have the doctors who can point me in the right direction.

Todays' cam includes a mom cameo and no unintentional videotaping screw-ups, so sit back, relax, take an ativan if your doc prescribes and enjoy the ride...


Ketamine Cam: Day 4, Thursday, May 6, 2010

Yet again...only this time it is a video biopic a monther doesn't love....

except she doesn't have to worry about it, because cuckoo mel messed up again. Let's hope tomorrow is better. The jist of the video per mama mel's memory (since mine is rendereded useless x2) is:

  1. i'm soooooooooooo thrilled to have my mother here
  2. all you gimpee mamas and gimplessee mamas better take heed from my mama and clean your adult child's apartment and help them take care of the 3 full-time jobs of being a professional sicko
  3. and ooooooh don't you wish you were me....or at least me on my newest treatment lalalaland IV Ketamine


Yesterday I Walked. Today I Tripped. Tomorrow...

...I'll be tripping my swollen body off again from the experimental ketamine infusion treatment that I began today to combat neuro disorder #4: RSD/CRPS. The good news, I'm in the hands of the world's most competent ketamine infu-sycian - my neurologist, Dr. Schwartzman.

If only I could record my thoughts and visions during any 1 of the 10 4-hour treatment sessions - I'd be the most prolific gimp writer this world has ever known, but, alas the ketamine/versad infusion doesn't welcome the use of the body in time with the mind.

Anecdotally, what made my treatment super trippy was the music: circa 1980/90's from Erasure to The Cure to Smashing Pumpkins and some hard rock band that begins with T that I can't remember. Envision underground/alternative meets strip joint/under-aged dance club for girls wearing black and white striped thigh highs (yes they were in style 20 years ago too) and boys wearing black nail polish and combat boots (another fashion that has made its debut more than once). I won't get into any more detail on this coinkydink - but it made the treatment all the more nostalgic errrrrr ummmmm.

Yep. We did it. Walking and wheel-chairing (I think I made about 1.3 miles of the 4 upright).

And we're still doing it. We're still raising money for MS, believe it or not. Donations are still coming in, and if someone were to graciously donate $140 to me personally, I would become the #5 top individual fundraisers.

Thanks to teammate and former classmate and roommate Kathy - straight from the ocean waves of Wilmingon, NC - our team brisked the 4 mile runway in original Mel's Neuro Detour F**K MS, TM, and RSD matching tees. (And you can too, we have some extras).

Our small but valiant team, including members from Brooklyn (Rob, pictured behind me) to New Mexico (Ty) in the flesh!!! - friends of 20 years or more, mixed in with new friends from my new Philly home who will hopefully continue to be with us for what is our new annual meeting grounds regardless of zip code.

My post-trippy point, is that we rocked the MS Walk 2010 with grace, poise, comaraderie, hope, and more money than I ever was able to raise from a Junction Dance Theatre fundraiser!

We've committed to reconvening next year, and to increase our cast and crew, so mark your calendars now, so we can move from Top Team #9 to 5 (trust me, we'll never beat #1 - they have us by 140 helpful teenagers).

This sloppy, occasionally slapstick post is probably all you can expect from trippy old-bones mel for the next couple of weeks. Tho, if I had the energy following treatments it would do my writer's pen justice to record my visions.

I'm already feeling some relief in pain, and fat face is depleting, yay yay yay. Let's hope this continues, because not all RSDSers respond to this treatment (which, Aetna, my insurance will not cover BTW...surprise, surprise). visions and I will see you in a few weeks, and if we meet again sooner, won't that be nice.

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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