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.



10.13.2009

Obama Considers Extending COBRA Subsidy...and Other Mel/Health Care Ramblings

THE PLIGHT OF THE JOBLESS SICKO
For those of us that became sickos, were then fired from our jobs for "incompetence due to your illness" or simply laid off (perhaps you were the first target too), are now living off of Disability, and spending some of that on COBRA (thanks to the subsidy), barely getting by with multitudinous doctor and medicine copays, dreading the day the subsidy ends, and scared, strained, and stressed for the impending, unavoidable date that COBRA ends and the months or years that rest in between COBRA and Social Security Disability Insurance (SSDI)....read this article from Workforce Management.

According to the article Obama Considers Extending COBRA Subsidy, "The administration is considering whether to seek an extension of a federal law that subsidizes COBRA health insurance premiums for workers who are involuntarily laid off." To read the entire article click on the title of this post.

Let's gather forces, get informed, and make this happen - not just in our lifetime, but in the now-time.


Healthcare costs for individuals are rising dramatically.

Premiums for employer-provided schemes have risen four times faster than wages, and are now double their cost nine years ago.

The percentage of employees with an annual deductible greater than $1,000 increased from 1% to 18% between 2000 and 2008.

As a nation, the US spent some $2.2tn (£1.34tn) on healthcare in 2007. That amounts to 16.2% of GDP, nearly twice the average of other OECD countries"





ARE YOU SCARED? AND IF NOT, WHY?

I am.

I'm scared shitless (shitless is also a side effect of Transverse Myelitis (TM) & Multiple Sclerosis (MS), as well as many other neuro, autoimmune, and chronic illnesses, and/or it can be caused by or exacerbated by the meds we take) for the day I lose my health benefits.

What insurance company will insure a sick perso n? And at what cost?
(linked is an informative article from the NY Times.)

Click Obama for his thoughts on the progress of the health care reform bill.




If you're sick, best option: DIE.


Years ago, after I was hit by a car and I tried to get health insurance, I was turned down over and over again. I wasn't even given the opportunity to pay exorbitant fees, which, as a young professional dancer (i.e., gives new meaning to the phrase "limited income") busting my ass teaching, waitressing, performing, and going to coll ege, I wouldn't have been able to afford anyway.

This is why we have to take action, speak up, sign petitions, write letters, inform friends, family, and neighbors of the importance of health insurance for all. This is why we should all look to the organization, Health Care for America Now (HCAN), and join them in lobbying for universal health care.

Take action with easy links on their Web site.
Become a fan on Facebook, then invite your friends to become fans too.

HCAN isn't just for people with chronic illnesses, but since this is a site dedicated to that topic, here's what they have to say about it:

People with chronic diseases

HCAN is advocating for reforms that will require all insurers to provide standard, comprehensive health care benefits that meet your needs from preventive to chronic care management services. The plan will have low out-of-pocket costs (like co-pays) so you can afford to get the medical care you ne

ed at any time. The public health insurance op

tion will allow patients to choose their doctor and hospital. Additionally, insurance companies will be required to cover pre-existing conditions so everyone regardless of health status or history can get comprehensive benefits at fair and stable premiums.


Socialized medicine - universal health care - is an absolute must have.
"It's [universal health care] long overdue. There has to be some sort of centralized universal health care available to every citizen in this country. Canada does it and it works," says Iya Garrett, R.N. (and one of my nurses).

Whether you're sick today, tomorrow, or in your (hopefully) golden years, access to affordable health care is a human right, but in our country it's a privilege. Anyone without insurance is a victim of a selfish society.

We even have a president that supports this. (Note: Video link)
And a cell phone company.
And believe it or not, Walmart.

How many of you are victims today? How many of you have ever been victims of our live-to-work-to-get-health-insurance society?

I abhor being a victim, especially to multi-billion-dollar corporations. And I refuse to allow its gated castle nether-world to rule over my health, lack there of, or death. I'm definitely no know-it-all, but I've been a victim of the corruption pandemic that plagues people with rare diseases, or just plain-old healthy insurance carriers.

Help me. Help me find new ways to guarantee that within this year or next, there isn't one person with the basic human right of access to health care.


OH MY OH MY, THE SENATE PASSES HEALTH BILL...SO WHAT?
Yeah, Obama's doing a great job pushing and pushing and pushing his (and my) healthcare reform agenda. But, lawmakers are still divided whether there should be a new government-run insurance scheme.

Socialism? Oh, my! You mean we have to split human rights evenly? Won't that ruin my capitalist agenda? Social responsibility? What the f**k does that have to do with my landscape-groomed-3000+ square foot home-lifestyle?
says the capitalist, suburban, wealthy republican (sans republican Senator Olympia Snowe).

Note: above super duper unnecessarily long link will take you to a video.


According to Paul Adams,
a BBC News Correspondent based in Washingt
on,

"on the long, tortuous road towards reform of America's healthcare system, this was a decisive moment. Several members of the Senate Finance Committee called the vote historic. The Washington Post this morning reported that not since Theodore Roosevelt proposed universal healthcare in 1912 has any such bill come this far. After months of debate, the committee's chairman, Max Baucus, looked delighted and relieved.

In the end, those in favour of the bill won comfortably. This was due in part to a Democratic majority, but also to the support of Senator Olympia Snowe, who became the first Republican to back any of the bills proposed this year.

But this is not the end of the process. There are many more legislative hurdles to overcome before it becomes law. In the meantime, debate will continue to rage."



Let's channel our rage to win the debate. What do you think?





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.

10.09.2009

EVENT! Representing TM, MS, and Other Disabling Chronic Illnesses Through Art


Dear Friends Near & Far,

You're invited to my "studio", which is included among 100's of artists as part of this year's POST, a city-wide open-studio art event. (How cool is that?)

It's my first year in POST, and my first year as a painter. I never imagined that when I lost my dance and my creative writing (for the most part) to Transverse Myelitis (TM) & Multiple Sclerosis (MS), I'd find it on paper and canvas?!

I'm grateful to have a new creative outlet, to be able to share it with others, and most importantly spreading the word about life as a badass gimp with a rare, debilitating, chronic illness. Unfortunately, nowhere in pop culture, are our lives accurately presented. That's not why I started this blog or why I started painting, but it's an added benefit that came as a nice surprise. And when you're sick like me, NICE surprises are few and far between.

I hope you'll stop by 10/10 or 10/11 from 12-6 for a visit, a giggle, a cup of tea or glass of wine, to say hi to my fab mom from Pittsburgh, or (dare I say it) to buy some art - 100+ original paintings & drawings starting at $10, as well as hand-made chapbooks of my poetry & art.

For this weekend only, prices will be less than on the Neuro Art Web site.

Feel free to spread the word. There's more info below.

Thanks!
Melanie


PS
To check out a sampling of my smaller work, visit Neuro Detour: On Paper. And, if you can't make it this weekend and want to see my work in person, feel free to email me to schedule an appointment, or you can purchase work directly from the Web site.

**********************

Who:
Mel's in POST (click to see my personal page on the POST Web site)
What: Philadelphia Open Studio Tours
(West of Broad Street)
Where: The Drake, 1512 Spruce Street #1802, Philadelphia, PA 19102: View Map
When: Saturday & Sunday, October 10 & 11, 12-6PM or by appointment


A WORD (OR MORE) FROM THE POST DIRECTORS:

This October, The Center for Emerging Visual Artists™ is pleased to bring you the 10th Annual Philadelphia Open Studio Tours. Join over 300 professional visual artists, local businesses, arts organizations and galleries to celebrate 10 years of studio art! Artists and event partners in every neighborhood from Chestnut Hill to South Philly will open their doors free to public in the largest event of its kind in Philadelphia.


This year, the Open Studio Tours is happy to feature the following artists in the Center City West neighborhood:

Madeline Adams
Betsy Alexander
DoN Brewer
Kevin Broad
Mark Bullen
Estelle Carraz-Bernabei
Elizabeth Core
Deborah Deery
Jerry-Gerard Di Falco
Eric Frantz
Katherine Fraser
Carolyn George / CRG Studios George / CRG Studios
Thomas Kohlmann
MELANIE MILLER
Ted Mosher
Maria Nevelson
Nicole Pellegrini
Paul Rider
Carlo Russo
Jane Steinsnyder
Lauren Sweeney
Aleksandra Vasic-Lalovic
Angela Victor
Ernest Villareal
Burnell Yow!

You can check out all of these artists work and locations in advance on the POST site.

Artwork Images by Me

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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    Representing TM through Art and Dialogue...Locally, Nationally, Virtually.