Get into My World! Get Off My Blog [Hater]!

No. Not you! You, my sisters and brothers and distant compassionate readers of true interest, stay with me.

The word gets out. It's a life. It shouldn't have to be...

VULNERABILITY

And another, more psychologically based phrase, your...

MORBID CURIOSITY

You've missed the whole point of this blog. I'm writing about the rare and disorderly - my rarity, my non-compliant body, how all this affects me... us  - for this very reason. To end our feelings of vulnerability in the realm of those that are currently "whole", whose appointment books aren't littered with doctor's names and treatment, surgery, and procedure schedules, and personal reminders of who we are and what we do and what we did and what we should do. Knowledge, this shared intimacy, this bond I've created with you, should go beyond morbid curiosity, beyond pity and judgment. You should move beyond your fear of the different, the moderately deformed; our hearts are more whole, built and rebuilt, cemented and carpenter hinged, soldered and gorilla glued - so strong what's broken becomes unbreakable. I'm talking bones. I'm talking heart.

We, the different than you, the vertically challenged, the numb, the pained, the beat down, the dishonored, the disenfranchised, the differently abled are more able of heart than your life experience can provide.

To survive these lives is to be a superhero. We are ninjas and black belts of the earth and sky. We are divinity and soul that fills oceans and earth. We are richer than Oprah will ever be in dollars or sense [spelling intended]. We are reincarnations, multiple lives within however many years our bodies have sprawled this planet. We are astral projections. We are global realizations. We are strong. We have self-respect. We have accomplished the impossible. We are alive and smiling. We appreciate life more than you, and we probably enjoy it with more vim and verve too.

We deserve to be treated with respect.

So, if you've come here to "research me." To decide if I'm worthy of your time, a 2nd date, your consideration, your friendship, your purchase (of my artwork or neurochic)... you've come to the wrong place. This is for people who care. This is for people who want to learn more, to feel what we feel, to think what we think, to know what we know.

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

FIRST, AN UPDATE. 

SECOND, THE GIMP RIFF (you're expecting)

THIRD, PS: Related Articles, Citations, Further Reading, Etc.

FIRST
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?! 

WRONG. 

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.  
   

SECOND

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
antipodal
from perfect,
nor reproducible, or
understood
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.

THIRD

 

Related articles and Web sites

• Singles with MS (chat room)
• "NeuroArts" Panel Presented at ISEA 2011 (thebeautifulbrain.com)
• My sicko ex should go down for lying (thesun.co.uk)
• Late Night Gimp Fight - review (guardian.co.uk)
• How To Write A Love Poem (theawl.com)
• Fetish Confession: The Gimp - Unmentionable Taboo, or Trendy New Plaything? (sexytofu.com)
• 30 Patients With Chronic Neurological Disorders Treated With ExAblate Neuro (medicalnewstoday.com)
• Does 'The GIMP' Need A New Name? [Poll] (omgubuntu.co.uk)Dating with Chronic Illness (Web search, many useful links)

Where the hell have you been? And other awards.

My inborne Jewish guilt  has gotten the best of my slacker-ality (add it to the neuro-ictionary), and whala... here I am, with too much and too little to say.

So, here it is, in the best form ever invented - the list form:

1. WE WON AN AWARD!!!!!!! 
1. 
   
   
   
    
2. Thank you, thank you to all who nominated Neuro Detour. Wow, what a friggin' honor! Gee, it almost makes me feel lucky to be so effed up that I can write Neuro Detour and win top 35 gimpalicious blogs of 2010. Yippeeeeeee!
   
3. Now for the down and dirty....
1. it's been a shitty ride as of late, but (and there's always that stupid optimistic idealistic but) I've been lucky too to be in the right place with the right people to get the best out of this life that I can.
4. I did have a recent fall or 2, cracking a rib or 2, but mortal pain is nothing once you've had RSD pain, and I've had quite a bit of that.
5. Vertigo has taken me way yonder to using the original Vertikal Kris-O-fellow-
   TM-er-2nd-time-Hand-Me-Down-WALKER-from-Illinois. 
6. So, special thanks to Verikal Kris for keeping me vertikal [sic]... for the time being.
7. And dear Judy, thanks for being my partner in RSD and portacath crime. We all need a bosom buddy, or in our case, it's porta-buddy - same diff.
8. Being sick really fucking sucks.
9. Losing people you love because you're a sicko really fucking sucks.
10. Losing yourself because you are a sicko really fucking sucks.
11. Losing yourself because you are a sicko on really whacked out meds really fucking sucks.
    
    
    

    Image by christophe dune via Flickr

    Nice Logo... not quite, but close....

12. Some of the meds, like IV Ketamine, not only make you (me) better, but get you (me) trippin' and hallucinating grand realizations that disappear as quickly as the last 2 years have.
13. I am now a graduated TM-er, reaching my 2-year anniversary in August, 2 weeks after my 35th birthday.
14. My Neuro Detour should be over.
15. My Neuro Detour is just beginning.
16. I am no longer a TM-er.
17. I am a TM-MS-Stage 4-RSD-aka-CRPS-er-with lots of ancillary shit diseases like osteoporosis tied in.
18. I belong to no one, no group, nowhere.
19. I belong almost everywhere.
20. I hate that I am not free to go anywhere, even certain restaurants or stores or art galleries because they are not handicap accessible.
21. I hate sickness, and bigots, and nasty cabbies who charge you before you sit down because you take so long to get in the cab with your walker. 
22. I hate chic-chic and down-scale department stores and boutiques who may be accessible in architecture, but not in service. 
23. I hate insensitive people. 
24. I hate inequity.
25. I hate being a triple-quad minority.
Image via Wikipedia
26. I hate that society does not commit itself to the laws of the Americans with Disabilities Act (ADA).
27. I hate that my life is so expensive, but my income is so controlled.
28. I hate that I've ruined other peoples' lives, e.g., my mother, with my chronic illness and disability.
29. I hate bitching and moaning. Mine and others'.
    
30. I have started my first real physical rehabilitation, and I LOVE it. I'm only permitted to do aqua therapy at this point, but Aquatic Therapy of Chinatown is giving me something to look forward to 3x/week.
31. I wish I could walk through life in an 8 sq. ft. pool.
32. I am practicing transcendental meditation - by prescription
33. I am exploring the powers of one's mind.
34. I am starting an international movement (in my head and on a piece of foam core): 
1. Gimp This! (imagine the i in "this" as middle finger.), of dedicated equalists, anti-disability-haters and -prohibitors (silence is as much an act of hate as exclusion, ostracizing, blah, blah, you wronged me, blah.)
2. In other words, watch out out gimp-haters and ADA-non-compliance-ers, Gimp This will get you, out you, and picket you. Looking forward to ruining your business soon. :)
35. I am selling more and more of clothes:
1. Who needs a wardrobe when you're 35 and your job title is patient? (HOWEVER,  I do not sport hospital fashion, rather I am neurochic,,,, and you could be too.)
36. When asked what I do, I no longer say writer or painter (which are both true), or dancer or choreographer (long - gone professions), 
1. I say patient. And that is at least 3 jobs in one.
   
2. I am often completely alone.
3. I am not recovered.
4. I still have no prognosis.
37. I can not go a day in public without being asked, "What's wrong with you?"
38. I can not go a day in public without being stared at by children. 
39. I can not go a day in public without being stared at by people who should be my peers, or perhaps employees. 
40. I love Provigil. 
41. I love all pain meds and pain management procedures.
42. I am afraid my doctor will retire, and I will have no one behind me.
43. I avoid people, even virtual people, when I am sad or conflicted.
44. I gave my birthday away this year, not because I don't want to age but because of what this birthday signified... what should have been the crest of closure.
1. Please take a copy of my birthday for yourself.
45. I have made scenes and thrown cups of frozen yogurt in response to injustice.
1. I have been stupid and assertive against drunken privileged white men harassing a homeless black man. 
2. And when the cops showed their racist spirit, even the black ones, I opened up my mouth again and took badge numbers and said things that could get me arrested.
3. I am a defender of my rights. 
4. I am a defender of my people. 
5. I am out of control more often than before. 
6. I am tough, and I can be mean if necessary. 
7. I may be a cripple or a glamour gimp, but I'm not gimpified. 
46. Please help me Gimp This here and elsewhere.
47. Doesn't asking for help suck?
48. Whole numbers and silence are for pussies.

PS I am not participating in POST (Philadelphia Open Studio Tours) this year. See right column top for more info.