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.



8.05.2011

"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.




7.04.2011

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

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


 

5.24.2011

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

1. 
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.



CALL ME SISYPHUS
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.


TRIFECTA ATTACK
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.

Lucky
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 .

Huh? 
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.

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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