Girl, Interrupted

ImageTa Da! Here I am! I’m Writing again, actual words on an actual page! See? Typey type type, there I go, watch my speed! I’m back, and it feels, frankly, downright triumphant.

I know, I know, it’s been a long time. I promised myself once I got this blog off the ground, I wouldn’t stop. Not for anything. And then I got sick, and I broke that promise. And I beat myself up for it for the past six months or so, because I am rather good at breaking promises to myself. .

So about this getting sick thing. We aren’t talking a little sick. It was bad, and threw me for more than I could shake. You would think that someone living with a rare genetic disorder causing more complications than a runaway marriage would be used to dealing with honest-to–god medical maladies. But I wasn’t. I spent months weak, tired, and confused as to what was happening to my body, why it was happening to me and how I was ever going to put back together my interrupted life. I developed a mistrust in the medical system, and in myself for thinking much of it all stemmed from bad decision making and self-advocacy. For a long time, I wasn’t able to eat, which caused a terribly unfair relationship to food.  What was once one of my greatest life passions became a mortal enemy. It was a long, hard, dark time. Perhaps I’ll get into more detail of all that happened. Perhaps I won’t. I learned a lot with so much own time, about how to learn to be  sick,and how to learn to be a full-functioning human again. Hospitals are kind of interesting places as they are gut-wrenching, and certainly provided fodder for stories. But more on that later.

The important thing is that I’ve scrounged up the courage to say something. All in all, the details of my trip down the sickness spiral hell hole aren’t exactly the point. The point is, sickness, no matter what flavor, can be all-consuming if you let it.

That’s exactly what I did; I let it strip me of the one thing I swore could never ever ever be taken from me–my voice. And that comes to my writing, or lack thereof. For so long, I felt so bad about myself, that I saw writing as just another chore. My self-deprecation had a vice-like grip on my thought processes. Every attempt to write was another escapade in self-doubt. In moments of weakness and lack of confidence, the Thought Demons fed on my vulnerability.

The initial failed attempts of resurrecting my blog and sharing my point-of-view weren’t for lack of trying. Numerous attempts of facing the terrifying Blank Page always played out in a predictable pattern. There would be a starburst of self-confidence, and the burst would fizzle the way a sparkler does and surrender to my well-acquainted darkness. It went a little something like this:

Me: I can do this, I am going to write today! It’ll be useful and therapeutic and something to distract me from feeling so crappy!

Brain: Ha.

Me; I mean it, I can do it! I have so much to say I have, like perspective and stuff, on life with a chronic disease! I’m quirky and witty! I can be Megan, the quirky, witty blogger!

Brain: Cute. Nice try.

Me: I can write about…

Brain About…?

Me: But…

Brain: Exactly.

With a heavy sigh, I would close the laptop, with the steely taste of defeat in my mouth, and return to my Say Yes to the Dress marathon. It was easy. It was passive. It was pretty looking.

And it went like that for months.

But now, things are different. I’m stronger clearer of mind, and ready to pick up where I left off. I have matters to discuss, after all.

So readers, I am back, and determined to keep writing. To use that old cliché, the pen is my sword, and the way I can control a seemingly out-of-control situation. So my sincerest apologies for going all Howard Hughes on you. I haven’t given up, not quite yet; I’ve just been a girl, interrupted.

I’m Not Contagious, I Promise

Ever since the now-infamous Golden Corral incident came across my radar, I knew I wanted to write about it, but avoided this because it gets right to the dark and twisty core of my insecurities. But nevertheless, it’s really important to get this out there, so here I go.

All of us have fears about our appearance from time to time, and worry about what people really think. Too this, too that, not enough this, too many of these. Many times AJD54226, Atlanta, GA, Georgia, Golden Corral, buffet, restaurant. Image shot 2007. Exact date unknown.we are our own worst critic, and assume the worst in our mind when people’s true perceptions of us are vastly different. But what if those deep dark fears actually come true?

There’s having a visible disability, and then there’s a having a visible skin disorder. I am by no means saying one is more difficult than the other, but the latter does come with it the very unique and real possibility that going out in public opens you up to the chance that people think you’re contagious. People see skin problems and associate them instantly with contagion, as some of history’s most infamous epidemics involved skin breakouts. This fear for me is no stranger and it lurks in the back of my mind every time I walk out my front door. Most of the time I keep my self in check by insisting that it’s my own paranoia playing tricks on me.

Consider my utter dismay when a few months ago my biggest fear was confirmed in a Michigan newspaper.

I mentioned it in passing in another blog post, but there was a recent incident at a Golden Corral in Michigan where a family was actually kicked out of a restaurant because their daughter had Epidermolysis Bullosa-my very skin disorder. The manager thought she was contagious, even after her mother explained quite the opposite.

According to the complaint, the manager approached the mother and asked what was wrong with her child. —First of all, hold up. It takes some serious gumption to ask a mother what is wrong with her child. Any way, carrying on—When she said nothing, that her children had a genetic skin condition called Epidermolysis Bullosa, the manager replied, “she has scabs all over, so obviously there is something wrong with her.” They were told to go “find somewhere else to eat” because they were making other patrons uncomfortable. There are fifty flavors of wrong going on here. Because being insulted, discredited, and ya know, thrown out of a restaurant, didn’t make the family uncomfortable is just one. And by the way, Golden Corral, don’t you have bigger food safety issues to deal with than a little girl with a genetic disorder? Last time I checked, norovirus actually is contagious. Oops.

The family sued for discrimination under the Americans with Disabilities Act and the case was settled with the US Justice Department for $60,000.

When I first came across this story, it was like being punched in the gut. That could have easily been me. And then I remembered, it was me.

I flashed back to a time I was traveling with my mother. I can’t remember how old I was, but I had to have been pretty young. I actually don’t remember much at all. But I do remember being on a plane (what is it with my luck and air travel?) and realizing something was terribly wrong. The flight attendant had called my mother to the front of the plane. They were whispering in hushed tones and glancing back at me, while my mother appeared to look increasingly angry.

At one point, she was on the verge of yelling, about to make a scene on the plane. I could feel my face flush. It had to be because of me. I couldn’t hear what they were saying, but sometimes, you just know.

Mother made it back to her seat and I asked her what happened,. She wouldn’t tell me. “Put on your seat belt”, she replied as calmly as she could, the anger still reeling in her eyes. “Everything is just fine”.

As I came to learn later, the flight attendants thought I was contagious. They called my mother forward to devise a plan of action of how to get me off the plane when we landed to ensure the safety of the other passengers. I’m not sure what my mother said, but it was heated and she won. They never said another word. Ever since then, I’ve traveled with a signed doctor’s note explaining I’m not a threat to anyone.

How do you put together any semblance of a positive self-image when there is the very real possibility that people will actually be afraid of you when they see you? I’m 22 and I’m still figuring it out.

What is perhaps most infuriating about the whole Golden Corral incident is the refusal to believe the mother’s authority about her daughter’s condition. In no way was she a threat to any other patron. In fact, it was probably the other way around.

It’s a constant motif in the battle against ignorance; those of us with disabilities are often discredited as knowing anything. We aren’t to be believed. Clearly, everyone else knows better.

So allow me to make one thing perfectly clear:

I’m not contagious.

I Promise.

It’s genetic.

You can’t catch it.

One thing the Golden Corral taught me is that while ignorance is inevitable, it is not without its own consequences. The ADA swooped into action and justice proclaimed a clear wrongdoing. Knowing this, perhaps one answer is to just take a deep breath and step outside my door. In this battle against ignorance, the key is to have the galling audacity to be in public anyway. If I make people uncomfortable, they, not me, will have to find a way to deal with it. Every day I go to the grocery store, I win. Every day I go out to eat, I win.

I’m not contagious, I promise.

My first PolicyMic piece: Teen Fined $1000 for Wearing Feather at Graduation, Check my story out here!

Hey Y’all, so with my new forays into the blogosphere, I applied to test my chops as a news blog contributor. They gave me a test piece to write and they picked it up! You can check it out here. As you may have heard, it is about a Native American Alabama teen who was fined 1,000 for wearing an eagle feather with her graduation cap. A lot of people seem to disagree with my stance, and I see where they are coming from, and I like that it generated a dialogue. What are your thoughts? Also HuffingtonPost and Newsy picked up the same story, Compare it to what I had to say!

When Quincy, M.E. meets Rep. Henry Waxman, A Bill is Born: 30 years of the Orphan Drug Act

Little did I know that way back in 1979 when Congressman Waxman’s office received a call from a constituent whose son had Tourette’s Syndrome, it sparked a chain of events that would culminate in the most important piece of legislation to affect me personally. Quite frankly, I’m sure Rep. Waxman didn’t either.

You see, this year marks the 30th anniversary of a little something called the Orphan Drug Act, a bill that made me and millions like me with rare and orphan disorders-ones that affect less than 200,00 people in the US—basically matter at all to the pharmaceutical industry. To us, the Orphan Drug Act is seminal legislation; it is our Americans with Disabilities Act. It’s our moment where we finally got people to notice us and care.

I wrote briefly on the issue of rare disorders for International Rare Disease Day, but I want to take the chance to elaborate, because the story of how the ODA came to be is fascinating and a tale of the good that can come when Congress and the media join forces. This 30-year anniversary is a huge moment in my own personal history as someone with an orphan disorder. But I want everyone to care and take note. I promise, this story is really cool.

Way back when the FDA was established, it did make immense strides for public health and safety for drugs going to market. It also had the unfortunate side effect of making the very act of developing a drug incredibly costly in terms of time and money. Thus, drug companies focused their efforts on medicines for large disease populations to justify a return on all that time and money needed to get FDA approval, such as heart disease, cancer, and diabetes. So when you have a disorder that virtually no one can spell or pronounce, and that affects, say, less than 200,000 people in the country, it’s kind of like drawing the short straw when it comes to incentives in the free market. Pharma says, “Why bother putting so much energy into such a small population?” and it leaves us without any treatments or drug development for our respective conditions. Hence, we’ve been “orphaned” –hence the term orphan disorder.

This was the case for Rep. Waxman’s constituent when she ran out of ideas to get access for a drug, Pimozide, to treat her son’s Tourettes. It was available in Canada, but not in the US because it wasn’t viable enough to treat such an obscure condition with such a minimal population. She even had a friend try to bring it back from Canada, only to have it confiscated at Customs. Rep. Waxman realized that this one individual case was only a symptom of a much bigger problem that affected way more people across the country than anyone realized. A prompted hearing on the Health and Environment subcommittee, with the constituent’s son himself testifying, only proved the situation for people with rare and orphan diseases was dire. The ODA was well on its way to being drafted and pushed through Congress.

The ODA would be the first of its kind to put in place tax incentives for companies to invest in rare disease research.  ODA also set up patient and market protections. It would provide tax breaks to companies that made treatments that qualified as “orphan” status, as well as made for an easier and more efficient path through the FDA approval process. For example, how on God’s green Earth can you expect a clinical trial to have 1,000 patients when the entire patient population is 2,000? Exactly, carry on. So that’s what the bill did, in a Reader’s Digest version. Now it was time to get it passed.

And here’s where Quincy, M.E., comes in and the story gets really good. A short aside for those of you who may not know, Quincy, M.E., was the CSI  before its time. Jack Klugman, non other than everyone’s favorite medical examiner, Quincy himself, caught wind of the ODA and the fight to get it passed, and decided to turn his show into a bully pulpit for the cause. Not one, but a series of episodes aired featuring patients with rare disorders and the market-based obstacles they were up against. In the episode, “Seldom Silent, Never Heard”, a teenage boy with Tourettes dies and Dr. Arthur Ciotti asks Quincy if he can save the boy’s brain and use it for research toward Tourettes. Turns out Dr. Ciotti had been lobbying for years to get a green light for a treatment for Tourettes but there just wasn’t enough profit to justify the endeavor (sound familiar, Rep. Waxman?). In swoops Quincy, with a grizzled face and determined eye, and he becomes a staunch vocal advocate for government backed rare disease research.

Quincy’s fictional crusade carried on as just as Rep. Waxman and Senator Hatch’s did in the chambers of the Congress and Senate. There were two more episodes in which the storyline followed the ODA, “Who Speaks for the Children”, and “Give me your Weak”. Jack Klugman appeared before another congressional hearing in 1981, making he and Congressman Waxman quite the odd couple (sorry, I couldn’t help myself). In essence, Quincy was Glenn Coco. Watch him go.

Thirty years after the Hollywood ending, we now have the National Organization for Rare Disorders—founded months after the bill’s passing. The passage of the ODA was the first step in recognizing that those of us with rare diseases are no less important simply because we offer no economic value or profit margin incentive. Aside from the fact that if you add up everyone who has a rare or orphan disorder we make nearly 30 million Americans (hardly something to sneeze at), the ODA with the help of Jack Klugman humanized us in the public eye and brought us out of the shadows. Mr. Klugman passed away this passed December, just before the 30th anniversary of the bill’s signing on January 4th. His legacy saw the bill through and the change it made for people just like me. As I said in my speech at the National Organization for Rare Disorder’s 30th anniversary gala, people he and Rep. Waxman decided who were worth it.