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. Yeah...life sucks, but I still rock.



Showing posts with label Poems. Show all posts
Showing posts with label Poems. Show all posts

9.28.2011

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Among the 52 unpublished backlog of post drafts I've started, perhaps finished, maybe edited and re-edited until I forgot what I was writing about, or where I was (true story), exist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


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6.17.2011

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!
 

I.
Mel's in an Art Show! TOMORROW!


The James Oliver Gallery Presents:
"Femme"
featuring 18 international artists
in a mixed media group exhibition exploring gender – in all its dimensions - the 21st century 
 
OPENING RECEPTION, June 18, 6-10PM

James Oliver Gallery
723 Chestnut St., 4th floor
Philadelphia, PA 19106
www.jamesolivergallery.com
jamesolivergallery@gmail.com
267-918-7432

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




II.
Seeking STRONG BODIES 
to be in a GIMP THIS! Art Installation. 
TOMORROW!
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,
Melanie


 

5.09.2010

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
toes,
twiddling already
twitching fingers
smiles
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:
body
abode


compound into a constant
choke:
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


caught


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
swells
out of itself;

crudely
crappily
curse the contiguous
moments of cureless
unconscious health


conundrums


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
on

Ketamine,
copious (nar)cotics
constructively commonsensical
(yet uncovered)
cure-hopes.
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
looping-Magic-Mountain-brain-bending-Mind-Mend-nerves-Corkscrew-nervous-Worlds-of-Fun
a crockpotted neuro-concoction
that keeps
on keeping on
corroding
consuming
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



either/or


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

10.13.2009

My POST: Art, Asses, Gulp Guzzle Gorging, Poetics, Permacath Art, and Pictures to Come...

FIRST OFF...
A big thanks to everyone who stopped by this weekend for my open studio, part of Philadelphia Open Studio Tour (POST) . My mother and I had a lot of fun meeting and mingling with all of the interesting people - from dear friends, to ex-co-workers-who-are-pursuing-an-MBA-in-Atlanta (holla David Papa! Enjoy your new drawing), to out-of-town strangers.

Over the weekend we had about 45 visitors, including quite an unexpected number patrons who purchased little paintings, purple-y collages, big drawings, and my very inexpensive, self-published chapbook; a near complete imbibing of a box of Pinot Evil (my favorite, adorably designed,cheap, yet super drinkable table wine...for goofy and informative links to this vino see below) and 2 bottles of Barefoot Sauvignon Blanc - it's an award-winning cheapie (currently on sale for $5.99 a bottle in PA Liquor Stores, and it's damn good, especially in the summer with sparkling water or plain seltzer).

To my open studio visitors, Thanks for sharing your time and a toast with me. You made my first (POST) experience a successful, inspiring, and exciting one.

Thank You! Thank You! Thank You! Thank You!


FOR MIAs...
To those who planned to come, but didn't make it: The brouhaha continued without you, but a tear was shed for your heart-breaking absence.

Brouhaha Etymology
Origin:
1885–90; < class="ital-inline">brou, ha, ha!
exclamation used by characters repr. the devil in the 16th-cent. drama; perh. < class="ital-inline">bārūkh habbā (beshēm ădhōnai) “blessed is he who comes (in the name of the Lord)” (Ps. 118:26)


To those who skipped over me because they thought, who's this Melanie Miller chick, and how does she get off calling herself an artist: Satnam.

SAT NAM
is the Seed Mantra or Bij Mantra and it is the most widely used in the practice of Kundalini Yoga. Sat means the Truth; Nam means to call upon, name or identify with. Sat Nam means Truth is my identity and I call upon the eternal Truth that resides in all of us. Chanting this mantra awakens the Soul, and more simply means "really". It is pronounced to rhyme with "But Mom!"


MY MONEY, MY CLIMAX, MY CORPSE POSE UPGRADE
I don't believe I have or would have ever suspected that I would pair the wors money and climax. But this weekend is worth a crescendo, so....as part of my artful celebration, I treated myself to a new, clearance-priced 8 Piece Bed in a Bag. It was either that or an automatic kitty litter box, but I couldn't find one that was both in my budget and had decent reviews. (Leave a comment if you have litter box recommendations for future retail relish.)

If it weren't for my mother who is gifted with patience, a keen eye for my style, and vision superior to mine, I may have ended up with an over-priced, underwhelming, itchy, crappy, dry clean only ensemble. So add that quadruple biggie-sized thank you from above to my energizer bunny mom.


MOM:
DO NOT READ THE FOLLOWING UNTIL YOU SEE, "MOM, YOU CAN READ THIS"
IN LARGE RED LETTERS!!



And Speaking of Mom...

Mom's single, lives in Pittsburgh, is obviously one of the best mothers in the world and probably one of the best grandmas too (to my bro's beautiful kids; I'm single and childless). She's a great cook, conversationalist, cleaner of gimp-daughter's apartment and doer of said daughter's laundry, same-day flight booker for myriad ER visits and last-minute hospital stays (all mine; all her expense); and a great catch (i.e., those aren't implants).

If you're interested, email me with:
  • Your similar-to-a-dating site profile, or a PDF of your profile if you have one
  • RECENT pictures (no more than 3 please - and make them good ones)
  • A copy of your 2008 tax return
  • Criminal Record Clearance
  • A short essay on why you think you would be good for my mother
  • A complete 2-column list of your good qualities and flaws
  • A list of ex-wives, current wives, and/or ex- or current-live-in girlfriends with contact info
I will pass your information on to my mother. If you don't get a response, bummer - but don't contact us. We'll contact you.


MOM, YOU CAN READ THIS...

BACK TO ME AND MY SPRINKLES ON TOP...

(NOTE to the YOUNGINS': The following contains profanity.)
I'm still using a bed set from my married days, YIKES!, and its time to get that karma off of my body and out of my space - even if it is a Nicole Miller (no relation - unfortunately). And the rest...to pay for 6 (of many) prescription refills, the two doctors' visits' co-pays I'll have this week, perhaps I'll free the scarf/wrap I put on layaway at Joan Shepp, and then last and unfortunately not least - that ubiquitous four letter word, debt. (If you thought I was going to write fuck or shit, luckily those are two things I'm never charged for - assuming we don't count the TMers bowel-savers: reasonably priced stool softener pills and enemas.)

Center for Emerging Visual Artists (CFEVA), might you consider making POST a biannual event?

FOR YOUR VIEWING PLEASURE: PINOT EVIL ON YOUTUBE...


Pinot Evil


I totally disagree with this guy. He definitely is a wineass.

Pinot Evil Vintage? France



I liked this video so much, I subscribed to his channel.


Taste Along w/ Adam The Wine Guy #171-Pinot Evil



His nerdiness and occasional high-pitched syllable makes this one a keeper.

1.29.2009

Breaking (Up) is Necessary to Do: A Series


Break glasses, hearts, arms, toys, the bank,
stupid words like good and bad. Go o(d)d.
B(e)
ad(dition minus conclusion.)
B(e
an) ad (for .) Broken bodies,

not just parts, the whole
damn lot: laptops, coffee pots, clutches, memories -
break twice as directed(?) with power
tools. Break rules. Break time. Break out.
Breakdance. See it. Break it. Break
what's broken
twice as directed.

How to leave home
without keys? Never
come home again.

Break up with the sun, sight, the sense
of sensation. Knowledge is too big
a word. Break it. Future is too full
of itself. So are yesterday and today.

I want to say: fuck it all and go to hell.
I won't say: fuck it all and go to hell.
I say: fuck it all and go to hell
anyway.
I don't believe; I've met
believers who believe I am in hell,
I am headed toward hell. I am hell

on wheels constructed of assistive
technology, a word not recognized,
a person not there, not designed, not home,
therefore not breakable.

1.29.09


*****


It took me a while to finish this. I added the poem today, but the following (written in the present tense was started almost 2 weeks ago).

Another Author's Note & Disclaimer (I so want to write Notlaimer):
Today (1.18.09) will be day 4 of my IVIg treatment. Though I'm feeling some improvement already (internal sigh), vision impairment is still a nag. But despite the absof***inglutely annoyance of writing "in the dark", this post has been on my mind for days, which in visual terms is a pretty dark place anyway. At least the way, I imagine it. So now I need to break these thoughts from there. If I say more, I'll give too much away.

It's also 4:30AM, 31/2 hours after taking my night meds cocktail (a colorful and occasionally effective montage of narcotics), 4 days since my last shower (my port has been accessed), and I'm feeling a little vain. So with these two paragraphs combined, plus a dash of writerly stubbornness, a video recording of me babbling through my thoughts won't do. So I'm taking a chance here with digit(al) muscle memory. As always, please forgive me for "breaking up" with my perfectionist, perfectly proofed ways...and for carrying my metaphors on for way too long.



OH, THE PAIN
Even when we're healthy, independent, and our lives are full of naive potential, breaking up is hard to do. Remember your first love and how you looked forward to his (or her) calls and that long wait to Friday night when you could "go out with your friends" and sneak away from the pack to a quiet place where your breath turned white while you experimented with the flexibility of your tongue and lips dancing with another? and then the days and days of pillow-sobbing that followed the inevitable end?

Or, going back even further in time, how you loved your yellow Tonka truck more than any other toy, even the remote-controlled speed racer? and the day paint began to chip away and the eventual dismantling of its parts that made the whole thing so damn fun? and how when the first already dangling wheel broke off for good and you could no longer control your feelings, and you cried as though the whole world was against you?

Just like sickness, these losses continue through our lives to have a long list of side effects - tears being just one of the painful or embarrassing traits. While that list may be plentiful and weigh heavier on the negative, as adults, by now we should know it would do us more benefit to focus on the positive side effects.

But let's be honest with ourselves. Do most of us see the plus, when the minus is so much more emotionally and physically oppressive?

Probably not.

Even in my happiest moments, I waffle here. Do you? Why is it that we gravitate our emotions in that downward direction again and again?


BREAKING DOWN THE CLICHE: from Tonka Trucks to Playthings

Mostly, when we think of that horrific phrase, break up, we either think of the end of love or that timeless song (The Carpenters aside, you wouldn't believe how many ear-breaking covers I could have chosen from YouTube).

But it's not just relationships - with lovers, spouses or playthings (toys, so to speak), a shattered sentimental mug or burned-down home, the image of our body as whole after losing a limb or becoming disabled in any way from any cause - that break us into pieces of our once puzzle-completed selves. Forced to rebuild, feeling as though the task is greater and more dangerous that erecting a bridge from scratch, these all qualify as "life sucks" phases of our lives.

Most of these break ups are forced upon us. These unsolicited surprises impose uninvited challenges and change.

Ironically, most of us invite a challenge, even crave it - in our jobs these c-words make the day go by faster and give hope for promotion and pay raises. For athletes, like I once was, it presents an opportunity to rise to the top; to give our audiences a more satisfying performance; to receive more praise, or trophies, and medals to show off to our friends.

For the humbler athlete, the gratification of challenge-induced improvement, which comes from within, and our teachers, directors, or mentors - is not only enough in itself, but it's the basic matter that completes our identity.


I AM WHAT I HAVE, THEREFORE I EXIST
Bullshit.


RELEVANT TANGENT 1: THE POINT OF THIS SERIES REVEALED
I could have just come out and written this in the intro, but that would ruin the suspense. (You were reading with anticipation...weren't you?...Just say
yes...Thank you.)

So, here it is, THE POINT OF IT ALL as it exists in my head right now (it will evolve, devolve, deform, and reform every day):

Now that I'm sick, I mean really sick - disabled, debilitated - I better get my broken ass in gear and break up with myself. Medically, physically, I can never be Old Melanie. And New Melanie is as impermanent as most of our incomes.

I've been working through this idea before the birth of this blog: before the onset of my Transverse Myelitis (TM); my divorce; the deaths of my father, uncle, and friends; my first dance injury and my last performance; the loss of my house, a stolen wallet, etc., etc., etc.

Wait! This isn't a "focus on the negative-oy ve-what's wrong with me-I'm so miserable-life is unbearable-self pitying" self-help column. And it's not just about me, me, me.

I feel the need to probe - and it's not revenge against all the probing inflicted upon me.

There are so many emotional, physical, spiritual, medical, and psychological effects that this catalyst of "breaking up" (in all its incarnations) imparts on our lives. If I don't explore this - if I don't discover what's worth breaking - I think I'll screw myself out of maximal recovery. I think we'll all screw ourselves out of our maximal everything.

How am I going to do this? My plan is to
research, scrutinize, and celebrate this subject's impact on our lives in real- and remembered-time: present, past and future. The break-up themes will be informed by interviews with myself (I'm easy to get in touch with), other neuro-rare-chronic-illness (NRCI) friends and strangers, as well as NRCI-impaired-free people.

Obviously, by the title, you've probably figured out that this is the first of many posts to come. (Here I go again, over-promising. But I really mean it. Really, I do.)

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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    See My Art Published in Monkey Puzzle Issue #7

    See My Art Published in Monkey Puzzle Issue #7
    Representing TM through Art and Dialogue...Locally, Nationally, Virtually.