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.


SINGLE, SEXY, & GIMPALICIOUS SERIES: The Poetics of Dating: Gimp Style.

SECOND, THE GIMP RIFF (you're expecting)
THIRD, PS: Related Articles, Citations, Further Reading, Etc.

Among the 52 unpublished backlog of post drafts I've started, perhaps finished, maybe edited and re-edited until I forgot what I was writing about, or where I was (true story), exist various series, or new themes I've been considering, researching, or experiencing. When the stars align, and I come back to the EDIT POSTS/ DRAFTS pages, I'm now as overwhelmed by the enormous task of choosing what to edit, what's ready to go and just needs a proof, or a pic, or a link, or which posts are in neuro cognitive impairment chaos.

Neuro is as Neuro does
I've decided that it's time to forgo my perfectionist personality, accept the limitations of my brain and body, such as my inability to experience time in any sense, or how my brain shuts my body down when it's over-stimulated (perhaps explaining the time issue), or how I have difficulty knowing where to start, where to end, and remembering the feeling or even the experience that prompted me to start that obviously imperfect post, as it's still in hiding - buried in the chaos of the Internet, or nets, or intra-brains, wasauchimmer

e.g., The former should have been a minimum of 3 sentences, not 1 run on ramble. But, fuck it! I'm Neuro & I'm Proud! Say it with me, or make up your own: fuck it! I'm Neuro & I'm Proud! Damn, that feels really fucking good!

Seeking Closet Organizer Who Does Brains Too
To organize my brain and my health, I must organize my life. Part of that organization includes acceptance of what this life is - and I've been a neruo gal for 3+ years now, I should know, right?! 


In neuro years, something like the Aztec calendar, or dog years without the hidden equations, I am 3 years, 9 days old. That's in Diagnosis Years. In Symptom Years, it's much more difficult to both pinpoint the date of birth(DOB) and understand what that means, re: age, experience, etc. 

I've now written words and erased them 5 times. So I'll stop my preface, and allow the post, the page to exist as is. And, whew, that was my point. Over the next few months, 

I'll be posting those 52 drafts AS IS. Why? Because that's the neuro brain, and this is Neuro Detour. 

If you want perfection, visit a proofreader's blog. If you want to understand, relate to, find solidarity in, the confusing, complicated, chronic, uncensored Gimp, Sicko, RARE Neurological, Chronic Pain, Autoimmune, Incurable and Unpredictable Labyrinthine reality of being an alien (and activist) like the conglomerate of all of the above, I've plenty waiting to see the light of Web, and Welcome! 

Now, now... the release of these 52 posts doesn't mean I'm giving up on writing well. Consider these AS IS posts as both confession, i.e., the underbelly of chronic illness, and the nomenclature of neuroism. As Yiddish is to Hebrew. Spanglish to Spanish or English, Schweiz Deutsch to Hoch Deutsch... this Neuro Detour gal is building the 1st Neuroictionary (and if ANYONE POACHES THIS I'll gimpslap you.. for starters).

Drum Rolllllllll: Introducing my Green Eggs & HAM-Inspired 1st Draft Impromptu Poem
So here goes. In the spirit of full-neuro-disclosure, I'm sharing this personal neuro-ly transparent post with you as what it is, an: 
  1. AS IS, 
  2. UN-EDITED, 
  3. 1st DRAFT of a reaction, 
  4. i.e., neuro-tangent, to 
  5. the original 1st draft, which 
  6. has been cut and pasted into 
  7. an entirely new post soon to be published 
  8. in the same manner.  


Gimpalicious, 1-in-1 million & 1-of-a-kind* 35-ishWoman seeks Mad Love, or a 2nd date, or some fucking honesty.

Will you love me when I'm green?
Will you love me when I'm bruised?
Will you love me when my broken parts move
from the inside to the out?

Will you love your promises transfixed as dreams,
my stupid something beautiful to look forward to,
such as my stupid relentless hope?

Will you call me
if I strut my stuff with a Cane?
if I wobble with weak legs?
if I prefer to be carried for our first few walks in the park
by metal and wheels
and not your muscles, unbreakable bones,
arms I want to jump into,
arms I can't wait to jump into,
but I don't

Will you ask me to be your other
when I remember how many times I did the above
and how many times I was dropped to the ground
and when I looked up, looked all around, I was alone
and the bank of a beautiful future where I deposited my trust
ran off into the sunset, disappeared? in hiding?
aloof and impenetrable to recourse or punishment -
laws that no lawyer could convince a jury.

Might you love me with Allodynia? Any possibility
you'll still want to see me again? and again?
Would you love me with Edema, Brain Lesions, Blotches, and bluer than the sea?

Will you love me stuttering? Not dancing, but with a Walker?
Will you love me when I cry, because everyone has left?
including the vocabulary, that word, that word, invisible but exists?
Will you love me when I'm a blank page,
black outs mounting without an ounce of alcohol?

Will you love me when I wake - all night long.
When I hallucinate, degenerate, and hate those who berate

my brothers and sisters
and my body
and my mind
from perfect,
nor reproducible, or
by most white coats, residents, family, or medicine and science?

Will you love me when I stay home, supine and solemn?

Will you love my skin?
Will you always want to touch?
Will you love me gently, proudly, consistently?

Will you love me as I
  • gad 
  • about?
When I become a
gadabout, gadding gadding gadding
late, flustered, painted in flashes of heat and humility.

When I apologize for being me?
Will you believe me?

Will you love me
when I apologize
  • for acts and inaction? 
  • inert or bumbling like fireflies in a jar?
Will you love me when my ruler upsets us
the same and different? When I'm sorry
my body,
belonging not to you or me,
on best days and even better or worse?
when my rarity flips
from endearing to disease, an incurable disorder?

Will you love me when the government calls me a burden?
  • and the neighbors, our friends too... as far back as childhood, 
  • your sister, brother, mother, and mine, chime chime chime 
  • in cahoots with ignorance?
When congress dumps me
  • without prognosis, income, or insurance?

Will you love me when I'm purple, legs like a sunset, a black whole, an albatross.
Will you love me rolling miles of road without embarrassment?
When I stand up and shout, in solidarity with all inequality?
When I fundraise, volunteer, take phone calls from Indonesia
at hours you (hopefully) once believed indecent?

When you realize you might be a little bit racist,
  • a bigot, a tacit player in the general disgust
  • of gimps and sickos, even those not willing
to accept the global, local, my, your city's architecture of disrespect?

Will you love your choices, your words that stumbled
from your mouth
to the air of reality...?
When you wake up to the same woman
who flirted in fancy panties, all fantasies fulfilled
who turned you on with her body and beauty...

who you told  
I love you, you're the best
I've ever had,
a smile, beyond imagination

with whom you dreamed in daylight of every kind of a fun,
a fancy future, plans, travels, a family...     you called it infinite

Will you love the same woman forever,
follow through with your avowal when the feast of her flesh
  • fleshes
  • out, 

  • widens, unfurling a face 
  • carrying forty strange pounds, uninvited guests?
  • When I don't know how to make them leave? 
  • When they come back again and again, 
  • benign to your threats?

When she, pardon me, I am a changeling, one-and-one-half
multiplied my size, the size that makes you feel your sex?
Will you love
  • the fat face?  passionately?
  • perched upon my face.

Or when I choke, dry heave, unable to swallow
the tension,
skin not skin
stretched taut as a sheath
of tightrope.

Will you love my pain and muscle it away?
When it consumes me, removes me
from our home to my second home,

  • a homely hospital
  • without a bed for two?

Will you love me then?
  • One night. One week. Two weeks. Three weeks. More...
  • and repeat
  • One night. One week. Two weeks. Three weeks. More...
  • and repeat
  • One night. One week. Two weeks. Three weeks. More...
sharing a bedroom, with stranger after stranger,
a floor of helpers and healers, (I know they will not leave me, judge me, resent me)
but not with you?

When pain is human, so
huge, the losses
  • One night. One week. One year. Three... More...
  • and repeat

and consume, and my dream
is to step out
onto that tightrope,
  • 14 stories, 18 stories, a rooftop deck, and 
  • finally be brave 
enough to die.
and repeat
and repeat
and repeat  
until I accept the losses. not poetics. loss is loss. a  father, gone. a mother, gone. a brother, so far away. a sister, condemner, judger, so real they believe my pain is theirs and theirs is greater because my pain is so great, and newsworthy, the greatest pain in the world, with references to prove it.

Will you love me when you realize life is pain?
When you forget then remember the equation:
l= [p2 + p3] + x 
    [l x l2] ~ x
Will you love me when you understand every morning
I have to choose another day:

pain? you? us? or an end that doesn't exist? because love
should replace the pain, smite disease, because love

mostly, does tell me to stay more
than when love tells me to go.
Because I'm able to trust despite history and love you
more than you resent the cages you see around you;
otherwise known as chronic, incurable, disease;
otherwise known as me?


DISCLAIMER: This is a poem, it is not a real singles ad. It is a commentary, not a solicitation.

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"Yoga Helps Stroke Victims"... so shouldn't it help all of us gimps too?

Yoga Helps Stroke Victims

Not certain how reliable the source is, but as an ex-yoga practitioner of almost 15 years (before Neuro-ism Struck.... ironically during a morning yoga class), and someone who was probably been a minus 6 on the balance scale (see article: linked above and in the post title), and an I got bored with the 6 exercises you had to give me in aqua therapy so I created my own yoga-qua-therapy (including a water version of downward dog without getting your hair wet thus no wet barking dog smell to ruin the serenity with our hyper-superpower-sensitive senses)....

I think this is exciting. Finally we nationalist-capitalist-imperialists are embracing some of the wisdom and natural healing available to us for centuries from other cultures. So turn off your xenophobe, and PLEASE SHARE any ideas or experiences with incorporating non-occidentalist-pills-infusions-scalpels-long hospital stays experiences, practices, trials, accidents, or tribulations with out of the good-ol'-American-box medical practice that we all know and love so well.

Looking forward to hearing what's worked or not worked or might be working for you - especially if it's free :).

I've missed you,

PS I'm in an art show in NYC this week with funds going to research and treatment for patients with rare and incurable diseases. If you're a New Yorker - or going to be in NYC-er, and you want more info, comment here and when I can get off my couch potato ass (just finished day 3 of high-dose IVIg infusions), I'll post the details.

PPS I actually own that book... and it's fascinating and appropriate for anybody interested in body-mindanatomy... perhaps served with a hint of neuroplasticity.

Here's another book on my shelves. This one, I'm reading right now. I kept the image in because 1) I couldn't get it to delete; and 2) I felt it would be a good visual to differentiate the subject from the likes of Barbie and other fine plastic ware.

For the record, I purchased my copy from my local individually-owned bookstore - Joseph Fox Books - for about 2x what Amazon is offering.


Neuroism of the 4th

No fireworks here, just a neuroism on one of my not-meant-to-be neuro-ite blogs.

If you're curious enough to click on the blog title (it links to the blog post as noted), you'll also see where my interest has remained. Actually, it's a blog I started during my the last class I completed of my MFA before Transverse Myelitis Lightening shot that degree out of the (current) ball park.

It might be your last chance to see my previous blog wizardry (choke on water, need speech therapy kind of wink wink), because I'm thinking of shutting down that blog for good.

In case you forgot what this post was about by now (that would be me), here's the link:


2 Gimps With 1 Stone: 1) Mel - Art Opening (tomorrow). 2) Seeking Strong Bodies - Dis-InEquality Live Art (tomorrow).

2 Gimps With 1 Stone - a horrible thing to say, but i'm spent and rushed and neither of those are good for 1 gimp, let alone 2 with or without a stone. Tweet me anyway, please?

And now, I introduce to you.............  a 2 part email ............ this time actually with two parts!

Mel's in an Art Show! TOMORROW!

The James Oliver Gallery Presents:
featuring 18 international artists
in a mixed media group exhibition exploring gender – in all its dimensions - the 21st century 

James Oliver Gallery
723 Chestnut St., 4th floor
Philadelphia, PA 19106

That's me as Old Mel in Bodiverse. And the Gallery Logo... how'd that get there?   

[insert mel]
And I'm reviving my NeuroDemon-Abandoned "ongoing" project Bodiverse. Reincarnated as a 35-minute non-video-art-video-art work. The short description is: the body; the verse; the universe. The long one's all over the pages of the Bodiverse blog. Just google it, and save me the time of links and all that jazz.

After all... I've been IVIg-less since Medicare kicked in May 1. So I can't even see what I'm typing.

Keep on, keepin' on.... for details about this awesome group exhibit.  [Hint: There's a surprise for you at the end.... not a box of chocolate, but almost as expensive!]

[insert gallery]
Oliver wanted the artists to have free reign when developing work for “Femme” – an expression both foreign and innate - that conjures thoughts, emotions, images, experiences, and memories as inclusive as they can be exclusive; as intimate and commonplace as they can be political and controversial; timely, post-contemporary, and historical; ideals and ordeals of gender, femininity, or feminism.  

The variety of mixed-gender artists tackled this broad subject as variously as the artists themselves, resulting in a thought-provoking, intimate ,and universal mixed media exhibition of “Femme” expressed through painting, photography, sculpture, glass, multimedia video, performance, and installation art – as well as the possibility for the on-looker to become art in the show. “Not be be missed,” says James Oliver, gallery owner.

Featuring Artists

Pete Checchia • Karen Gibson • Anthony DeMelas • Nick Cassway • Ernie Sandidge

Melanie Miller • Jesse Beamesderfer • Rick Fichter • Gretchen Diehl

Antonia Cianfrani Brady Sanders • Zito • Benjamin Sperry

Denise Fike• Erin Etcker • James Oliver • Tom Buildmore

[insert Mel: and don't forget]
Opening Reception
June 18th, 6PM-10PM

The exhibit will run through August 20th

to be in a GIMP THIS! Art Installation. 
Also @ James Oliver Gallery's Femme Opening Reception

This is what's posted on Craig's List. Get out your reading glasses, press zoom, just be you're super human self, or click on the image and go right to the original post.

However you swing your cane, feel free to respond if you know a STRONG & WILLING  body, I mean person:

could i take any more short cuts?!

Thanks all! Pass it on if you can!

Yours in Neuroism, Art, & Lights that are way too bright,



1. On Losing - voice, rhythm, the word I want to place here; 2. Quote of the Moment... 2 versions.

On Losing: 
voice, rhythm, the word I want to place here

I have been lost. This happens from time to time - in taxis en route to....?, yes, it's 1995, how did I get here?, where is my shawl?, where did all this blood come from?, my chin's split open!, did I fall? was I mugged? pushed accidentally? and when? and where? and how?

Since we last saw each other, I've lost my voice - the CRPS taking over more of what was once mine. But my voice has returned, speaking and vision (take this how you like). And I lost you in the crossfire. So, how have I existed these past few months without you?!

If I answer, I'll give away the punchline, much like premature textulation(TM)*. Please forgive me. I'm excited to be here, to say hello and send gentle air hugs to my brothers and sisters, my non-neuro friends and family, readers and new readers too. We have a lot of catching up to do - more than I can recall (lucky you).

Cross your pain meds and hope I can still write. Put your pain patches on, 'cause I'm going for a ride... hopefully one that's followable (insert stupid smiley face).

*Neuro for sending a text before finishing typing it.

Being sick, recovery, relapse, see then not, a blur, double, triple, quadruple, kaleidoscopic, multidimensional as though a person becomes 2, 3, 4, of itself sideways and back ways - 8-dimensional "sight". This is called living like Sisyphus, better, worse, up, down, stand, sit - just for a moment, bed-ridden, hospital-living, home-bound, out-bound with caution: the right shoes, the necessary accessories to protect this angry body and its burning skin from the vicious knife-throwing wind, crippling cold, or heat that melts what muscle we own - temporarily as it is, even our eyelids, napping beauty.

I'm embarrassed by my absence. My weakness. A sadness that waffles among hate, fatigue, active ignoring - the phone, the people I love who are ignoring me, leaving me, forgetting, sick of a sicko with bravado. This winter and spring I relapsed and relapsed and relapsed and relapsed with flares and flares and exacerbation after exacerbation.

The trifecta, all three of my neuro disorders, turned on me consecutively and then for the finale in concert. Scarier and more than "more" upsetting than the CRPS flare that took my breath away (truly) or the back to back MS exacerbations, was my first TM relapse - 3 months after my 2-year recovery mark.

This time, my organs were paralyzed rather than my mobility. Whew! The last weekend of my family visit to Pittsburgh, I filled it with a first-class party in one of Pittsburgh's esteemed hospitals, known as Presby - where, without an adult CRPS specialist anywhere in Western PA, they kicked me to the curb the morning after I arrived by ambulance. Short and sweet and useless. Had I been in Philly, that would have resulted in at least a 1- or 2-week respite.

That Ain't My Ho'Po 
In the ER, my entire body convulsing in myoclonic seizures like a pissed off horse holding a 3-hour grudge they quickly got me into a room, as I was scaring the other ER attendees and some residents too. Once in my aproned-off room, still myoclonic and my bladder frozen and uncooperative, filled with 1600cc - enough to Wow! both of my nurses, as well as the idiot resident who squeezed my hand like a corporate power shake then slapped her unusually large hand down on my thigh. 

Needless to say, as I was having my bladder professionally drained, I schooled the daft resident in CRPS symptomology and etiquette.

Let's Celebrate!... before and after we mourn.
I finished the wild weekend, weak and in heightened CRPS pain enjoying the company of my family, especially the cuddle time on the couch with my grandmother, not knowing that would be the last time I'd see her, my nieces, and my bro, during the part of the year - my 7-year-old nieces birthday party!

Which, by the way, I plan to party like a single-digit-year-old this birthday year. Theme suggestions anyone? July's a comin'.

Having gone through divorce, becoming a full-time patient with three neurological disorders, two of which are very rare, incurable and misunderstood, I've learned, or rather taught myself to live without expectations, or at least try my damnedest .

Shit, I forget where this paragraph was going. Neuro Brain.

I'm no Schwarzenegger, but I'll be back (with a heavy German accent).
Pardon me, while I pause for a day or 2 while my brain recovers. I'll return with the rest of part 1, and hopefully I'll even get to part 2 in the same post.

To be continued...

PS There are about 10-15 unfinished posts wasting away in my draft queue. By quick glance, some of the titles look pretty juicy. Don't be concerned if you come across a brand-spankin'-new post dated in 2009, but stepping out in 2011. This time, it's not dementia - most likely. I'm attempting the neuro-impossible: to finish what I start.


Back to the ho'po'

For those of you that don't have a home away from home, ho'po', is melanie-ism for hospital. Second time this's a slow 2011!

This new flare started last night; when I have more time I'll explain it to you. But for now, just wanted to let you know that myself, and all the posts I haven't finished for posting yet will be in Hahnamann for a week or so, give or take.

Check back soon.

Your Chronic-Neurochic-Glamour-Gimp-alicious-Sista',


IVIg Activism: An AWESOME IVIg Campagin Video & YOUR TURN to Speak Out

Michelle Vogel
Michelle Vogel

This just in from Michelle Vogel of the he Alliance for Plasma Therapies:
On February 10th, the Alliance for Plasma Therapies and the MS Society are introducing legislation in CA to stop the practice of tier IV plans/specialty tiers/coinsurance in private insurance plans in the State of California. We are going to be holding a press conference in San Francisco and ABC News wants to interview a patient who has been forced to pay coinsurance (instead of a flat copay per infusion a percentage of the cost of their IVIG). Please let me know if this has happened to you and if you are willing to share your story. You can email me [Michelle] at
While this initiative is currently for California, and this call for patients is specific to Northern California Patients, I hope we can get the Alliance, our local MS Society branches, and maybe even my friends at I.G. Living and Families USA to not only advocate politically on a regional level, but to continue this specific political and community awareness campaign throughout the US and beyond.
I must admit first, I've been out of the activist loop as I've been recovering from a triple exacerbation that landed me in a respectable Western PA hospital (that DID NOT KNOW WHAT! to do with me) while visiting family and hasn't given my portacath a break since. (This is my third week straight attached to an IV pole and the third treatment type of infusion therapy.) So I do not know if or what compatible campaigns are happening in Pennsylvania, or any other state (other than Cali) for that matter. Yes. I am an ignorant blogger. Tsssk, tsssk. Shame, shame. 

Since when have I cared about the judgments of dissenters or righty tighties????, unless they are my mother or brother, of course.
But weak, delusional, flared, or on fire, I'll never stop bull-horning about Aetna's corruption and its life-threatening effects. This is an issue that affected me so profoundly adversely, thanks to Aetna (you can find many a post about them and my experience), that it's hard to know how much healthier I might be today if it weren't for their capitalist, self-serving policies.  
As may have heard this from me, or read about this in a new book on the subject (neuro moment... title, eek), I had to lose my vision, after losing multiple appeals for IVIg coverage during most crucial 3 months of my recovery from Transverse Myelitis, despite the help of THE amazing pro-bono attorney, Jennifer Jaff, the brilliant visionary behind Alliance for Patients with Chronic Illness.  
I should be grateful that I didn't have to repeat the battle with my current insurance company, however I too must pay coinsurance on my infusions - and even without TM or MS exacerbation or an RSD (aka CRPS) flare-up, I survive off the fruits of many many infusions and plasma therapies.

And this is something I still can't understand... 
Why is being sick so expensive, often even more, sooooo much more money than the limited income SSDI and/or Long Term Disability provides us certified gimps to live? And even more offensive, SSDI makes us wait 2 years before receiving Medicare. 
But that's another action to be redressed again, don't worry.
If you're not inspired yet by all of these impassioned people and non profits, you will be. Watch this video.  

So, pretty amazing, right? Well, what are you willing to do about it?
Let's start with a conversation. In lieu of get well flowers, I'm humbly asking you to:
Help this to be the most active comment section of any Neuro Detour post to date. 
Any ideas on how we can spread this campaign into our cities and states? The forum is yours, ours now. Let's share our ideas. Let's work collectively. Let's share our successes and failures. Whether you're a full-time sicko individual like me, or a part-time IV dabbler, your ideas and your voices are crucial. They are the first step. 

Come on now. Edjumacate me. Please?

Let's (me) set a goal*: 10 comments with 10 comments on those comments. 
Meet this goal, and maybe I'll even give you a prize!
*This may be subject to change at any time for any reason by the author, or the author's mind-controlling medications.

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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