In one of my all time favorite pieces of The Colbert Report, Stephen goes on a journey to sell his portrait for megabucks at a New York art gallery. He goes the whole nine yards—he has it appraised by several art appraisers, he learns all about the art scene from the art curator Simon de Pury, he shmoozes it up at the pre-auction cocktail party, and he crashes the actual auction.
The whole time, he’s happy as a clam (and a little tipsy at the cocktail party) and keeps sing-songing variations of “it’s happening!”
After it aired, I immediately adopted the entire series of phrases. I was soon greeting people by calling out, “is it happening?” or “there’s a happening happening!” every time I felt excited about something. This was occurring at a time when I was coming out of some darkness and finally seeing some light, relief. And it was my spring semester of my senior year of high school, things were very much happening. (Although they weren’t as spectacular as Stephen Colbert dancing to “Gin & Juice” with a Frenchman.)
Stephen & Simon de Pury jamming to Snoop Dog (The Colbert Report/Comedy Central)
Dysautonomia Awareness Month kicked ass all because of volunteers. (Pardon my French.)
Times Square under an assault of Dysautonomia Awareness (Dysautonomia International)
I burst into tears the day I saw that Nasdaq billboard in Times Square was lit up turquoise with the word dysautonomia plastered all over it.
Two years ago, I’d never heard of dysautonomia. My mom and I had trouble pronouncing it—her proclivity for other languages and their rules had her falling over syllables. And I couldn’t keep track of what letters went where. But we got it right pretty quickly.
Two years ago, as we were learning what this disorder was, we were also explaining it to my doctors. We were shopping for cardiologists who had also heard of it, who had heard of POTS. Some would say “no” and offer up a treatment plan, a treatment plan that was completely wrong for me.
Now? Things are different.
Today, I’m getting e-mails from my cousin at a conference for anesthesiology with pictures of poster presentations on POTS.
Today, my friend who works for a T-shirt design company is getting tons of custom orders for Dysautonomia Awareness shirts.
Today, my doctors are collaborating together on new projects. There’s a lot that they do know, and everything they don’t, they’re making plans together to figure out and to treat me in the process.
I recently got some potentially incredible news that my insurance company might be coming through for me on something big. I’m staying ridiculously cautious in my optimism, but this, like seeing the Nasdaq billboard lit up turquoise, was one of those “cry your eyes out, this is happening” moments.
I’ve been pretty fragile lately. My doctors have been wonderful, reminding me that expectations change when circumstances change. I felt like I wasn’t achieving anything and like I was cutting myself too much slack. I should just push harder, that’ll fix it, right? I wanted results, I wanted to see something happen.
But there are some times when pushing won’t fix it. There are some times when you have to pull back a little bit. A lot of people believe that you have to keep goinggoinggoing all the time to treat dysautonomia, but on the advice of my doctors, I’m pulling back just a little bit. I’m just going to keep going at a slower speed and see if I can make things happen that way.
So I’m working on being good to myself, and I’m working on those happenings.
And in the mean time, big things are happening for dysautonomia.
And that’s pretty freaking cool.
“Let’s make it happen!” (The Colbert Report/Comedy Central)
(Please, do yourself a favor and watch all three parts of Stephen’s quest to sell his portrait–it was for charity, after all: part one, part two, part three)
Birthdays are so tricky. They’re supposed to be the best day of the year—where people celebrate you for just being—and you hopefully get showered with gifts and cakes.
But unfortunately, that means it’s a day filled with expectations that everything has to go well. And with chronic illnesses in play, that’s hard to guarantee.
I finally had the “It’s My Party and I Can Cry If I Want To” Epiphany when I turned 20. I had a ton of great events on the docket—I got to see one of my best friends for lunch in Williamsburg on my to Virginia Beach with my family. Unfortunately, that day I was hit by mood swings which turned into anxiety and I kept panicking, “no! I can’t be sad on my birthday!”
I kept trying the “fake it ’til you make it” approach at having the Best Birthday Ever but once I started getting a tension headache, it got to be too much.
I spent that birthday morose and quiet, upset that I was losing to my body. I was supposed to be happy and perky, but instead I was busy fighting my own feelings and the throbbing in my head.
And then, I finally remembered that I’m the birthday princess, and I get to do whatever I want. I call the shots. This could finally be the year of the grumpy, quiet birthday—something I’d never tried before.
Honestly, it kind of sucked to give in to the mood swings for a while. It sucked to stop fighting to keep them at bay and let them take over for a while. But it saved me a lot of energy. Having bad feelings is exhausting, but battling them when they’re in army gear is so much worse.
Birthdays since the great epiphany have been better informed—for the emotional side, don’t fight your feelings, they’ll probably pass a least a little bit when you have your birthday cake/cookie/brownie/ice cream/whatever. But the physical symptoms are harder to self-talk away, but you can certainly treat them the same way. And on your birthday, no one can truly begrudge you some full-scale drama queen “woe is me! pain on my birthday!” because guess what, you earned it. If that’s your personality, if that’s your style, go for it.
My big day this year started off great—my present to myself was going to be a Treat Yo Self day: sleep in, no exercise, no school work. Mom also surprised me with treats from Mom’s Apple Pie Company. I went through my usual routine but started feeling symptomatic and that led to feeling some heartbreak. I got nervous that it would continue throughout the day—what if I didn’t feel well enough to go out to dinner with my family that night? Thankfully, there’s nothing like fear of feeling unwell to get you to chug water and get your salt.
I rested, got such nice messages from friends (and my mom’s 4 billion Facebook friends), and TWO CAKES!!! And aside from the several pictures my mom insisted we take at dinner, I didn’t force any inauthentic feelings. So yes, I felt bummed and symptomatic for a while. But it was my birthday and tons of people texted and wrote on my wall and liked my mom’s photos of me to tell me they loved me, so there was plenty of time to feel important, too.
This was written last night at 1:30 a.m.
Erin, one of my very best friends in the world, came from Philadelphia to spend my pre-birthday weekend with me. We got breakfast–I had gigantic fluffy pancakes and Erin got a delicious looking omelette. We went shopping and discovered a crazy antique shop. (If you’re in the market for for some old political campaign memorabilia, I’ve got a store for you.) Then, we took on the task of a trip to Target (the seasonal section is having an identity crisis right now–a battle between Halloween and Christmas) and I thought I was going to lean over against a shelf of towels and fall asleep.
Every moment, standing upright, it was like I could feel gravity’s pull on every molecule in my body. -9.8 m/s^2, right? That’s the pull of gravity on Earth? Even though I remember next to nothing from Physics, next to nothing about the practical application of it, all I could think of was, “Yep. -9.8 m/s^2 of gravity is pulling on all of me, but it feels like more.” But at the same time, I was enjoying myself. I loved being out of the house. I loved being with Erin. Maybe I could just ignore the gravity away, because there’s no way I was succumbing to it.
We reenergized with hot chocolate and a break at my house before venturing back out for the main event–seeing Hasan Minhaj (from The Daily Show) do stand-up in Arlington. I laughed loudly and shamelessly. It was absolutely spectacular.
We got home, exhausted and spent. It’s pretty validating seeing a non-POTSie tired from doing the same things you do.
But in the hours since, it feels like every muscle in my limbs has started aching. And not those dull, throbbing aches, it’s the sharp and constant aches. The ones that are loud. The ones that say, “Hey!!! We’re still here! You’ve done all of your easy fixes, but we’re not leaving!” And your only option is to get as comfortable as you can because you just have to ride it out.
These are the ones that make it difficult to sleep. These are the ones that the term “painsomnia” was invented for. (High five to the person who first coined it.) Instead of fighting against gravity like I was this afternoon, I’m fighting against muscles that ache, limbs that are fidgety, a head that hurts, and a heart that feels stressed. And there’s also confusion–because I had such a lovely day with pain that I endured–and now the pain feels like it’s too heavy. Gravity and heaviness wins this time, but at least I made it this long.
I’m going to try to rest now. Because no matter how much my arms and legs hurt, it doesn’t take away how good my pancakes were, how hilarious Hasan Minhaj was, and how good it is to have a friend come visit you for your birthday.
How do you even write the first entry for a blog?
Goals? Mission statement? Two truths and a lie?
I originally wanted to start a blog because a bunch of adults* asked me “so, do you a have a blog?” this summer when I talked about possible future career goals and my experience with dysautonomia/POTS. (*I know that I’m “technically” an adult, but these were real adults, with their own health insurance plans, 401Ks and wills.) The idea resonated with me and I couldn’t shake it.
As far as other goals, they’re pretty standard (and yes, why not share my hopes and dreams with you?)—
- to reaffirm a million times to anyone with dysautonomia that their experiences are real and valid
- to give people without dysautonomia a glimpse into what life is like when their autonomic nervous systems goes haywire
- to give me yet another place to work out some of my feelings because writing is a good time
- to be another voice to raise awareness about dysautonomia
- to share as many cool water bottles, salt shakers, pill containers, and any other cool dysautonomia gear items as I can find
And one day, if I’m lucky, maybe I can make this as powerful and glamorous as Stephen Colbert’s lifestyle brand, Covetton House.
With goals out of the way—you can read my overly comprehensive diagnosis story, see pictures of my dogs on my about me page, and follow me on Twitter for random musings and blog updates.
So let’s get vulnerable! Let’s share stories! Let’s barrel through the stigma, head first, even though it’s scary. Let’s have as much fun as possible. And thanks but no thanks, dysautonomia.
Oh, and most importantly!
Happy Dysautonomia Awareness Month!