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Among the 52 unpublished backlog of post drafts I've started, perhaps finished, maybe edited and re-edited until I forgot what I was writing about, or where I was (true story), exist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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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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