The unfinished thought. The unpublished posts. Speaking and Listening. Is it really 50/50 in brains with neurological disorders?

I haven't completed a post in months. I've accumulated 60+ unfinished posts way past due for publication... but some day.... I have more To Do lists and To Do's done. And more tiny notebooks full of thoughts and ideas and poems and projects and things I will accomplish that will change the world or change my world, or just get me up to speed with the world, or your grandmother. But to be honest, I don't even know which world (or grandma) I'm racing against - or maybe it's that I forgot which world it was, or maybe there are just too damn many worlds to fit into this mind and body... and vice versa.

FLASHBACK

Since I could write, I wrote lists. I made lists for every thing, occasion, time of day. And I completed those lists. In my early 20s I wrote a 1-, 5-, and 10-year plan of my dream life. And as my dreams changed or progressed I revised the plan, and I accomplished what I set out to do; what I had known I would do since I was a child.

At 36, I'm lucky if I complete the setting and doing of my daily speech therapy project (it's a really good one if you don't beat yourself up for screwing up); three daily goals - simple tasks, like give self copaxone injection; prepare for doctor's appt., etc. - more basic than the lists I made at age six. And I am lucky - reminder to self: I CAN WALK (most of the time - and with durable medical equipment, but I can walk!)

Image via CrunchBase

Today, after my twice weekly speech therapy session, I was a bit inspired, and I logged onto one of my favorite Web sites, dictionary.com. After looking up a few words (I thought were knew, but I had merely forgotten), I scrolled down to the quote of the day. Enamored by it, I clicked the little elephant head at the top of my computer screen and saved a screenshot of it to Evernote to add to my list of favorite quotations.

Tagging is a strange thing. I never know when to stop. As my speech therapist said, "I get elaborate." One day, I limited myself to three tags per note, or bookmark. What an internal struggle. As though I was contemplating life and death; but no, alas, to tag or not to tag. Which tags are the answer?

Today amidst my elaborate tagging, combined with the profundity of the Quote of the Day, the word ampersand, it's definition & etymology and probably a few other internalized ingredients, like ritalin and morphine, (that was well controlled 2-tagger!) taken as prescribed a poem spawned - in Arial 10pt between the screenshot above and my literary diligence below- how to cite the quote in the screenshot in every possible and acceptable manner copied and pasted and ready for use.

In order to complete this post and hit that sweet orange Publish button, I'll let my Evernote note speak for itself. Just remember, I'm a rusty poet, and it's just a first draft. It ain't no Montaigne, but it's a start... and for today's goal, a finish.


UNFINISHED or 
TO BE CONTINUED or 
CLIFFHANGER ON THE EDGE OF THE EARTH...
AGAIN... BUT...AND...

The neuro brain, at least in my case, does not understand time. I don't experience it, I don't feel it passing, I don't know until my skin tingles and burns and my joints talk - take your meds, I need my meds. I don't know when it's Wednesday or Tuesday, or if that funny thing happened this week or last year. My time is as flat as the bible's Earth. Is there a Flat Timer's Society*[see [*] reference @ bottom. it's giggle worthy], just like the Flat Earther's? If so, sign me up. OR no, take me off the list and mark as spam. I'm working on relearning time. Maybe this is something I should get into when I have more of it.

And speaking of which, I'm going to publish this as is right now - WITHOUT every link, photo, graph, likeness, or the actual post I planned to post... because my time management still sucks, and I have two adorable nieces waiting for me. They are much more important than spell check, some creative commons pics to spice up the page, or "finishing" this, or any, blog post or daily goal. AT least I can say: I set out, I did, and I adjusted.

However, I will take advantage of Zemanta's generosity, and swiftly add the related reading links to give you the richest experience possible, while making me look really smart and thoughtful. Click, click, click, done. IF you're a blogger and you haven't downloaded Zemanta - do it. It rocks.

ADJUSTING - A WORD WITH MANY MEANINGS
Adjusting is one of the key bullet points of the neuro-gimp-sicko life. Yeah, we all make adjustments. I certainly made a lot pre-neuro, pre-gimp, pre-sicko (by definition). I can think of my marriage and divorce. My home life and my 17-year old escape, concrete as disownment and it's etymology -  really, no joke, click the link.

I'm taking ownership of this text in progress, and I'm hoping this is interesting enough for you to look forward to PART II, where I reveal my source, myself in verse (non-rhyming, non-meter, thankyou), and in anal-ity. (I made up that word, use as you desire.)

And, to play with words, as you know I prefer even more than Tonka Trucks™ and Barbie Dolls™: existing or being with a sense or knowledge of time, would in many logical debates result with the winning conclusion that being so means, in short, that one is timeless. Isn't that a nice thought to end with - at least for me.


Timelessly yours,
Melanie
aka To Be Continued Woman



* FUNNY: 
 When I searched for Flat Timer's Society this was one of the PAGE 1 hits:

2. 

   any flat chested first timers noticing a growth in chest size ...

   any flat chested first timers noticing a growth in chest size?: I am 7 weeks,with my first baby ... Back to July 2010 Birth Club ...
   community.babycenter.com/post/a18984215/any_flat_c...

    

    

    

    

    

 

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• The Right Brain Holds The Key To Your Company's Innovation (smallbiztrends.com)
• Skilled readers rely on brain's "visual dictionary" to recognize words (teleread.com)
• The Dangers of REM Behavior Disorder (everydayhealth.com)
• Brain Ventures: A Businessman's Battle With A Rare Neurological Disorder (forbes.com)
• Newly Established Neuroscience Clinical Trials Center Could Bring Treatments To Patients Faster (medicalnewstoday.com)
• Swedish Awarded Major NIH Grant for Brain Disorders Research (prnewswire.com)
• $1.5 Million Grant for Brain Research - Northwestern University (northwestern.edu)
• Case of N.Y. teens' tics makes psychological sense (cnn.com)
•  

 

FLAT EARTH:)

• Liam Byrne's unabashed Blairism is tolerated for now, but he is heading for a clash with Ed Miliband's Flat-Earthers (blogs.telegraph.co.uk)
•  Perry, Cain and Flat Earth Government (themoderateoice.com)
• Flat Earth Society (vanishingnarrative.wordpress.com)
• A Flat Earth to a Dead Planet (showlovedaily.com)
• Dionne: Perry, Cain and flat Earth government in spotlight (goerie.com)

 

HUMOR: Funny & Bizarre Brain Stuff

• Why The Middle Finger Has Such A Slow Connection (medicalnewstoday.com)
• Study Spots Where Humor Tickles Kids' Brains (abcnews.go.com)
• Debie Royston, British Woman, Develops French Accent After Flu Symptoms And Seizures (huffingtonpost.com)
• Sense of Humor Starts Early in Children (children.webmd.com)
• Do Men and Women Process Humor Differently? (psychologytoday.com)
• Imaging study shows how humor activates kids' brain regions (medicalxpress.com)

 

LANGUAGE: SPEECH & SPEECH THERAPY

• Delightful New Speech Therapy App Released for the iPhone/iPad: "Speech With Milo- Verbs" (prweb.com)
• How Speech Therapy Helps People With MS (everydayhealth.com)
• Building Your PRN Pool of Physical, Occupational, and Speech Therapy Staff: The Most Obvious but Overlooked Strategy (metropolitanhealthstaffingnetwork.com)
• The secret to a speech therapy comeback from a stroke? Getting your brain to talk (redoable.wordpress.com)
• Speech-Language Therapy for Autistic Children (everydayhealth.com)
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LITERATURE: Poetry & Writing

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• Metaphors actually trigger the sensory parts of our brains [Neuroscience] (io9.com)
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• Gabby Giffords: Finding Words Through Song (abcnews.go.com)
• Word-of-Mind: Researchers Decode Words from the Brain's Auditory Activity (scientificamerican.com)

MEMORY

• Add Simple Notes in Your Media to Remind You of Your Opinion [Memory] (lifehacker.com) [from Melanie: based on the author of my quote inspiration!

•  Study shows Alzheimer's disease may spread by 'jumping' from one brain region to another (medicalxpress.com)
•  Working Memory And The Brain (medicalnewstoday.com)
• You: Study finds jolt to the brain boosts memory (latimes.com)

TECH: Evernote & Zemanta

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• Evernote for
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• Use Zemanta To Improve Your Blogging (blacknight.com)
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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)

"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,

Melanie

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:
http://melanie-miller.blogspot.com/2011/07/quote-of-day-jdmpapgaf.html