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. sucks, but I still rock.


Calling all Sickos and Non-Sickos: Tell Obama How Insurance in America Sucks/ Fractured Atlas Rocks

Whether you've been critically ill, or just had a minor cold, you've probably had an issue at one time or another with your health insurance, or lack there of.

Take a Chance...or I'll embed Abba videos
Here's your chance to share your personal story and be heard by Obama or one of his cronies. I did it. So you know what that means. So should you.

I got the down low from the always interesting Fractured Atlas Blog, of which I am both a member and grateful subscriber. Great political/arts blog. Check it out. Join. Subscribe. Whatever you do, I'm sharing today's article/call to action:

Tell Obama About the Arts and Health Care

The Obama administration is looking for personal stories about the need for health care reform. This is a great opportunity to ensure that the arts community isn’t left out of this debate.

Remember that not all health care reform proposals are created equal. Some - such as those designed to expand employer-based coverage - would actually hurt our community more than help it. We can’t afford to give up our voice at this critical time for this critical issue.

After you post your story, you should feel free to share it in the comments below (if it’s not too personal, of course).

I didn't mention the arts, but you don't have to be an artist to write to The M
Well, with all the healthcare crap and how to make money now thoughts on my plate, I couldn't help myself but reach out to my buddy Obama and share my thoughts in a 2-part letter about the corruption of healthcare (specifically our buddies, Aetna) and the holes in the Cobra subsidy plan - which affect me personally. By the way, if he can write (see pic to right) can you. Just sayin'.

Do ya think he'll listen?
I even gave him some links to Neuro Detour for further reading. Who do you think is going to click on those in the White House, and I wonder how and if the location of said visitor would show up in Site Meter as "White House". Hah! How cool would that be.


Dear President Obama,

I have two personal stories I'd like to share with you.

1. Critical Coverage - DENIALS
On September 18, I was diagnosed with Transverse Myelitis, a rare and debilitating neurological disorder. Maximal recovery occurs within the first 3-6 months. Treatment is both limited and imperative. Aetna denied my treatment during this critical time period.

I went from being an active, contributing member to society, to nearly blind, nearly paralyzed, and barely functioning. Thanks to a pro-bono attorney, Jennifer Jaff, we were able to win the case against Aetna in January-their decision overturned after many denials.

I am now receiving IVIg, the treatment that could have made a much bigger impact on my recovery. While I have not gotten much worse, I have not improved. This is due to the lack of treatment during those critical months. This is due to Aetna.

I have included a link to my blog, Neuro Detour, and directly to entries about how Aetna adversely affected my life:

To get the entire Aetna story, please refer to my post, “Why Insurance Companies (Aetna) are More Corrupt than the Mafia...a non-academic crime story”:

2. Issue/Personal Story #2: COBRA
The Cobra subsidy is a wonderful idea, but it’s imbalanced. I have been legally separated from my ex-husband for 2 years. We have no contact. Our divorce is scheduled for June. This was a post-nuptial agreement so that I could continue to have benefits, as I was self-employed at the time.

In January 2009 my employers put me on a 90-day unpaid leave of absence (LOA) and in March (30 days short of the LOA) they terminated me, due to my "illness" and its accompanying "disabilities."

Now, although I am eligible for Cobra, I am not eligible for the Cobra subsidy because I am eligible for Cobra through my ex-husband. This stipulation seems random.

I'd like to understand the logic behind this, because the $420+ a month I have to pay out of my disability income is all on me - not my employers, who most likely wrongfully terminated me, and should be partially responsible for my Cobra payments under the context of the new stimulus plan.

What a great plan it is! Too bad, people like me, the 1 in a millions, aren't supported by it.

I urge you to amend this aspect of the Cobra subsidy employer responsibility. Whether I get Cobra through my employer or my ex-husband, it will still cost me at least $400 - money I could be spending on healthy foods, rehab, expensive medications, and basic living expenses, which I can barely cover in my current situation.

If I were to have that subsidy, it could provide me with the necessary income and returns to bring me closer to being a contributing member to our society and workforce - a place where I very much want to be.

Thank you for your time and consideration.

Melanie Miller

Even if noone in power reads or responds to this, I hope one of you do. If you do, feel free to post it here too. We're all "dying" to hear your stories for action and change.

Thanks for reading, and double thanks (in advance) for...(clear throat)...commenting.


And more versions for your viewing pleasure:
Take A Chance On Me
Take A Chance On Me (spoof?)
Take A Chance On Me - no embedding allowed (probably original vid)


We're Popular! Even Tho I'm a CVS Screamer.


Neuro Detour has reached more than 3,000 visitors since I started this blog in October!

I've had other blogs...I still have other blogs, but not one of them has reached the popularity of this one. Being a neuro sicko means having lots of "Who would have thought" thoughts, but, who would have thought that being a neuro sicko would "make you friends and help you influence people"?

Thanks to everyone who reads, reacts, responds. I'm honored to have you has a reader. I'm honored if anything I write makes you take some action or understand this screwed up world we neuro-ites and disabled people live in.


I have a confession to make.

Not only do I have occasional 'roid rage, I also experience hyperactive stimulus responses - intensified hearing, smelling, body reflexes. You name it, this Transverse Myelitis (TM) girl has it. And sometimes it's OUT OF CONTROL.

Example: The Latest and Greatest Incident
Yesterday in CVS, while picking up my meds (I'm a regular) after my last plasmapharesis treatment, I was gimping down Aisle 1 when a suited short man with paralegal (no offense paralegal readers) hair, came sprinting toward me. As he whisked by, I felt the wool of his suit brush against me. The wind of his mad dash nearly knocked me over.

Balance is not a neuro gimps specialty - even an ex-dancer neuro gimp.

Even though the only thing I wanted to do was get home, sink into my couch, take my anti-spasmodic meds, and crash, I stopped, standing my gimpy ground.

So, of course...

I said (not so politely):
Excuse me.

And he said, NOTHING.

So, as he grabbed his precious 1 gallon plastic bottle of mad cow-laced milk from the cooler, I turned and yelled the obvious:
(with equal emphasis on both syllables)

In his rush to return to line, he speed-walked past me with a vicious stare as though to say, how dare you yell Asshole in a crowded CVS. Well, his silent aggression pissed me off even more.

And I responded:
Didn't you see a woman with a cane standing here?

He spoke!:
Didn't you see the box that blocked my vision?

Com'on smarty pants, the box, which was a small "display" was behind couldn't come up with a better, more logical, more "suited" response?

And, I, officially-licensed-cane-carrier (which I couldn't use as a weapon even in a non-post-plasmapharesis state), retorted:
I'm glad your life is so much more important than everyone else's.

And he squawked the only appropriate response:

No sir, Jesus does not help jerks with jobs and social responsibility blindness.


I hope you see this is as a sort of grown-up-gimp fable.

Although my actions, or rather reactions, may not have been...ummm...the most appropriate, I strongly believe they were warranted. After all, it is my duty as a gimp advocate to teach people about compassion for durable-medical-equipment-bearing-neurologically-impaired-immuno-compromised individuals.

I realized that by saying, "Didn't you see a woman with a cane standing here," I was taking responsibility for my people - my companions in this often-hellish-life we exist in and endure. This was not about ME. It was about the old lady who's unsteady on her feet, the sad jobless person who's lost in a head-lowered dreamworld of job-mourning, but especially gimps like me - glamour or non-glamour alike. Maybe I need to listen to (reading books is still a TM/encephalitis-induced challenge) Dale Carnegie, but...

I hereby condone and crown anyone who isn't afraid to yell ASSHOLE, at an asshole running down a narrow aisle in CVS's across the world.

Off you go...

Take control. Take action. Make the world a more compassionate land through malediction. Make people's lives who suck, rock.

Go for it!

Please share your tales of curing through cussing here. Thanks!


Who Would Have Thought A Dancer Could Become a Disabled-Neuro-Sicko-Painter, huh

It's been a tough neuro month, and it's about to get tougher, but there are moments of celebration in every day, and today I have a big one to share.

My piece, "X Marks Not the Spot" has been accepted for publication in the poetry and art magazine, Monkey Puzzle. It will be featured in issue #7, which is available for advance purchase.

Thanks to all of you who are supporting my life in transition. I'm feeling so grateful that I've found a new artistic outlet.

A body in revolt for a dancer is a big deal - hey a body in revolt "period" sucks - but transforming that body into 1- or 2- dimensions makes the pain/burden/loss/mourning process a lot easier to take.

Here's to self-expression - studied, taught, or intuited.

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.