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.


Enough About Me...My Neuro Friend Needs Your Support

When you're hospitalized for weeks, eventually you make friends. It's like being a guest artist for a month in Ketchikan, Alaska (you're all relating right now I'm sure). In Ketchikan, which has a population of 8,500 on a good day, you never befriend the tourists. What's the point? And if you're in Ketchikan for more than a week, no one considers you a tourist. And while I was there, I made friends with the people whose home I was living in, the artists and directors I worked with, and a few locals.

Four years later, I still consider a couple of those people friends.

The hospital is no different. I made friends with other Hahnemann Hospital non-tourists: nurses, security guards, Lou, Al, Clark, and Muhammed from the smokers area, and Lynn, Danielle and Judy from the neuro floor. These people - especially my fellow neuro-ites - made being hospitalized less sickly and more fun. Don't get me wrong, it still sucked.

But like my Ketchikan buddies, some of these new partners-in-sickliness have staying power.

Last week, I asked you to help Lynn. Today, I'm asking you to help my 26-year-old girlfriend Judy Hopkins.

Judy & Mel hangin' at Hahnemann...for weeks
As a fellow-short-term-memory-in-constant-pain-sleepless-rare-neuro-disease-battler, Judy has become one of my most enthusiastic rooters-on and a great friend. And if you had the opportunity (which if you didn't you will once I get the chance to download the documentary footage from the hospital), we're also great entertainment (imagine two people who can't remember what they said 30 seconds ago having a conversation until's right out of a Beckett novel).

If you help, maybe we'll take our shtick on the road.

Unlike my last-minute stay of execution from Aetna, the expenses of Judy's experimental treatments (which are the last possibility for her to survive an atrocious illness and live like a human being) still are not covered by any insurance.

To give you an example of the financial and emotional costs of battling a rare disease and its affect an entire family, just hours before Aetna overturned their denial of my treatment coverage, my single, middle-class mother was about to take out a home equity loan to cover the costs of buying IVIg and paying for a home health nurse to administer it - which could have reached 100s of thousands of dollars. And that's just part of the story.

It doesn't matter if you have insurance or not
With or without insurance coverage, being chronically sick is expensive. And when the insurance you pay for DENIES COVERAGE OF NECESSARY TREATMENT, it's like being forced at gunpoint to buy 50 Mercedes SLR McClarens when you're homeless.

I'll let Judy summarize her story in her own words:

Hey guys,

For those of you that don't know, one year ago I went to Germany for treatment for RSD (Reflex Sympathetic Dystrophy), also known as CRPS (Complex Regional Pain Syndrome) a chronic neuropathic pain disease that I've been battling for the last ten years. The treatment is known as a Ketamine coma. Because of Staff Infection Pneumonia I was in a coma and on life support for three weeks, but awoke in complete remission. Unfortunately, it didn't last and I relapsed a month later.

Over the last year, the disease spread, just like it had for the nine years previous to the first coma. Unlike previously, this time it also went internal and infiltrated my organs and affected my digestive and respiratory systems and eventually spread into my brain. I was unable to eat and hold my food down and was having more and more difficulty breathing. I was slowly losing certain brain function and therefore, became the fifth person ever to have the coma done a second time, which was done in December.

As a result of how dangerous this treatment is, it is only available in Germany and Mexico and is not covered by any insurance. Unfortunately, because of how progressed and severe my case was the majority of treatments I got and continue to get in the US, are considered experimental and are not covered by insurance either. As a result of this, friends of our family are hosting a fundraiser for me and my parents to offset some of those expenses...If any of you are planning on attending, it would be helpful to purchase your tickets ahead of time.

Thanks and Happy New Year,

  1. Attend the fundraiser (see info below)
  2. Send a check (any amount!)
  3. Donate an auction item
  4. Volunteer to help the day of the fundraiser
fundraiser info
WHERE: Brickwall Tavern and Dining Room, 522 Cookman Ave., Asbury Park
Show map of 522 COOKMAN AVE, ASBURY PARK, NJ 07712
WHEN: January 25, 5:00-9:00 P.M.
WHAT: Free drink, buffet, Chinese Auction
HOW MUCH: $25/per ticket
HOW: Call 732-531-2574. Reserve now.

and if you want to take it one-step further:
  1. Forward this post to all your contacts and urge them to take one of the easy-as-pie steps above.
  2. Become a rare disease and/or disability activist.
  3. Write letters to your local, state, and national government officials about the corruption of insurance companies, the need for full and timely coverage, and the eradication of the erisa act.
  4. Sign petitions to support people with disabilities and rare/chronic diseases.
  5. Or, if you're lazy or not interested, just send a damn check of any amount to one of the many large and small patient advocacy organizations that are lobbying, letter-writing, donating their time and services, and making a difference one baby (or gimpy) step at a time. (I recommend, Advocacy for Patients with Chronic Illness, Inc. and IG Living, two organizations that have made a huge difference in my quality of life.)

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If you're a Philly-region person with TM, please consider joining the Transverse Myelitis Philadelphia network (, a new social networking group that I started for people with TM so that we can meet and chat casually. It's only on Facebook for now, so, if you haven't already, join. It's easy.


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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