Laughing at My Nightmare (16 page)

Then the speech ended. Raucous applause accompanied Michelle Obama as she walked off the stage and approached the handicap section. That’s when things got nuts.

When the crowd realized that she was going to shake hands with the front row, everyone went completely ape shit. The flimsy rope that blocked off the handicap section gave way as a flood of able-bodied people crashed into our area, pushing themselves between the wheelchairs to get to the front. The angry wheelchair woman to my left lost her mind and
jumped
out of her chair. I kid you not, she literally leaped out of that wheelchair, screamed Michelle’s name repeatedly, climbed over an empty chair in front of her, and disappeared into the crowd that was surging towards the first lady.

This is when my fragility became a problem. Sitting in the middle of the handicap section, surrounded by wheelchairs, folding chairs, and crazed Obama supporters, I was suddenly very unsafe and very trapped. Large, heavy, adult bodies tripped over me and stumbled into me. I was merely an object for the fans to maneuver around. Generally people are abnormally careful around me, but on this night, if meeting Michelle meant smashing my body, I was getting smashed. All it would’ve taken is one stumbling person to connect with my head and my neck would’ve snapped like a twig.

To make matters worse, trying to forcibly drive my chair in any direction only caused more people to fall over me. All I could do was sit and hope that the craziness would subside and I would live to laugh about it later.

Eventually, Lily used her hulk strength to throw a few wheelchairs out of the way. She then lowered her shoulder and became my lead blocker as we barreled through the crowd on our way to the back door.

Overall, it was a very worthwhile experience. I didn’t die, which is a plus! And let’s be honest, if I had died in the chaos, it would’ve made an awesome story and the Obamas probably would’ve called my family to offer condolences, which is something not many people can say has happened to them.

chapter 29

the start of world domination

During my first few years of college, I grew out of the mindset that my wheelchair was a huge social barrier, and that little awkward interactions like needing to ask a stranger to lift my head up must be avoided at all costs to maintain my “normalcy” in the eyes of others. This shift in cognition—from trying to impress others by hiding or minimizing my disease, to accepting that SMA was a part of who I was and realizing that most people don’t really care that I’m in a wheelchair—was a natural outcome of maturation. I believe this is one of the reasons that led me to start my blog.

On a boring day near the end of May after my freshman year of college, I had the random idea of starting a blog about my life.

Most of my friends were either still at college, or already on vacation, so I was spending the start of my summer doing a whole lot of nothing. On that boring day, while reclined in my wheelchair in the backyard—trying to get tan—I decided it might be fun to write a story about the time I fell out of my wheelchair and broke my femur. At first I was hesitant. Posting stories about my life on the Internet seemed conceited and egotistical. Also, my friends and I made fun of people who use their disability to gain attention, but that wasn’t my intention.

I’ve always enjoyed making fun of the awkwardness, weirdness, and uniqueness of living with spinal muscular atrophy, but my audience was typically limited to my group of friends and my family. For some reason that I don’t think I’ll ever fully understand, I felt a sudden urge to make more people laugh at my disease.

As I began to type my broken femur story, it slowly dawned on me how much material I had to write about. I stopped writing to do a quick Google search for other blogs that were similar to what I was suddenly imagining in my head: a humorous take on a very serious disease. There were no results. The excitement started to build as I finished the femur story, wrote a brief introduction to my life, and posted both on my newly created Tumblr page: Laughing at My Nightmare!

At first nothing happened. I kept the blog a secret from my family and friends, mostly because I talked about dying in my first post—something I had never discussed with anyone out of fear that it would create permanent awkwardness in the way people thought about me. I also felt like I had a lot more freedom writing anonymously. Throughout June I privately messaged countless Tumblr users, asking them to check out my stories. I honestly just needed some validation for all the effort I had put into the stories that I had posted. Slowly, my number of followers started to climb. People began interacting with me, asking questions and telling me to write more.

Anonymous asked:

Have you ever considered getting an assistance animal, like a dog? Or has your family ever had any pets?

Answer:

I have an assistance turtle. He doesn’t help much.

I reached my one thousandth follower on July 7, 2011. I couldn’t believe what was happening. I had stopped messaging people long ago, which meant that people were now finding my blog on their own. Stories I wrote were making people laugh. Fan mail was clogging up my email faster than I could respond to it. It was nuts. One of my friends sent me a message on Facebook saying that he had found my blog on stumbleupon.com and that he really enjoyed it. That’s when I realized I was not going to be able to hide this from my friends and family much longer. I was still extremely nervous about telling them—my story topics now included sex, my questions about God, and more about my fear of dying—but I decided that any awkwardness that might result from me telling them was not worth the effort I was going through to keep it a secret. I could only write when no one was home. I didn’t use any names in my stories, lest a reader make a connection and mention it to my family. For the same reason I couldn’t post any photos (despite my burning desire to toss up some nudes, ladies).

Anonymous asked:

Is this for real?

Answer:

Nope. It’s an elaborate hoax. I’m actually a 46-year-old female living in Bangladesh.

I told my brother about the blog a few days later and his response was, “If you need any pictures of my penis, just ask any girl at school.” Excellent. That was Andrew’s way of saying he supported me. I waited until the following week when we were on vacation in Ocean City, Maryland, to tell my parents. My heart pounded and my hands were sweating as I told them all about what I was doing at dinner on the boardwalk one night. They were more blown away by the several thousand followers I now had than concerned about the subject material I wrote about. No awkwardness at all. Their supportive reaction was such a relief that I posted my blog on my Facebook that night for my friends to see.

My blog was starting to take on a life of its own, growing exponentially. I was enjoying life more than I ever had before. Finally, I had discovered something I was good at, something that mattered. Being good at video games, getting good grades, and knowing lots about sports was cool, but I always lacked a particular skill that I loved enough to carry me toward the future with enthusiasm. In the first few months of my blog, I realized I was a writer, or at least that I loved writing so much that I wanted to become one someday.

Anonymous asked:

How did you get your disease?:(

Answer:

I was bitten by someone else who had it.

By August, several newspapers and online news web sites had even contacted me about doing stories. Everything started to feel unbelievable. Three months prior I had posted a dumb little story about breaking my femur, and now people wanted to write stories about me?

My blog was a source for entertainment, but I realized I had the opportunity to make a real impact on the world. In January, I started a nonprofit organization, called Laughing at My Nightmare, Inc., with a group of awesome individuals. Our mission was to encourage individuals to remain positive in the face of adversity through the use of humor, while also supporting muscular dystrophy research.

The idea for Laughing at My Nightmare, Inc., came from the readers of my blog, and a series of conversations I had with my cousin, Sarah Burcaw (Becca’s older sister). Sarah transferred to Moravian during my sophomore year, just as the blog was starting to skyrocket. We ate lunch together, and the hot topic of discussion was usually the craziness of my blog’s popularity. We scrolled through the abundance of emails I was getting from all over the world and marveled at how honest complete strangers were being with me. A man from New Mexico wrote to tell me that he was contemplating suicide when he found my blog. Its message of using humor to cope with adversity, he said, kept him from putting his thoughts into action that night. A man recounted his life of cross-dressing to me in a lengthy email, detailing moments of intense anguish and hopelessness. He said my blog made him see life in a completely new way. He was going to start letting go of the anger he kept inside him from the prejudice he faced, and focus on living more positively. A teenage girl with cancer told me that my stories were helping her laugh amid the torture of chemo. Laughing just felt so good, she said.

That’s really where the idea originated. Sarah and I read hundreds of those emails in awe, and began to see that laughter wasn’t just fun, it was needed. How could we take that message and put it out there for even more people to grab hold of? Both of us were big dreamers. What if we opened up a comedy club? Probably too expensive. An amusement park? Where would we put it, my backyard? What if we traveled to schools and talked about humor and positivity? Yes. Holy crap that sounded awesome! We could help kids see that life was what they made it.

What if we created a nonprofit to spread this idea? Bingo.

Raising money for muscular dystrophy research, we agreed, was also a perfect cause for us to financially support. There was a moment of pure exhilaration when I realized Sarah and I were in this together.

Founders of Laughing at My Nightmare, Inc.

In fifth grade I wanted to start my own comic book series. The idea died when my best friends lost enthusiasm after the first issue. Too much work. In sixth grade I tried to start a skateboarding team, but nobody wanted to practice. They just wanted to design a logo and tell people they were on a skate team. In eighth grade Pat and Andrew and I set up a lemonade stand (way too old, I know) and made $132 in one day. The next morning I pleaded with them to set up the stand for one more day. We could have done it every day and been millionaires by the end of summer. Too much work, not enough fun. Let’s just go spend the money, they said. I felt like all of my grand ideas throughout life had been squandered by the laziness of friends. When we decided to start a nonprofit, Sarah was a ball of fiery enthusiasm, and her commitment excited me more than the idea itself.

Eventually we began a six-month process of meeting with lawyers and business advisors, working hours every day to formulate our brand and the activities we would do, and filling out more paperwork than I ever want to think about again. But on that first day, as our nonprofit baby was birthed, we wanted to accomplish something to make it seem real.

We decided to sell something with our name on it. Not only would they raise some start up funds, but it would spread awareness: Marketing 101. Sarah pulled out her laptop and credit card. We googled “bulk wristbands,” clicked the first web site that came up, designed a cheap, but fashionable purple wristband (which turned out to be pink when they arrived, but that’s what you get for eight-cent wristbands), and that night I set up a free Web store and promoted it on my blog and social media. I fell asleep to wild thoughts of waking up with a few dozen orders.

Eighty-three orders in the first night. Eighty-three. Everywhere from Bangkok to Sydney to London to Las Angeles, the wristbands were a huge success. We sold out of our first thousand in just a few days, confirming that the world supported our idea.

I continued to write stories as often as possible throughout the spring semester. My followers climbed over 50,000, and our nonprofit had its first official board meeting. Over the next year, my followers continued to rise up over 500,000. I filmed several documentaries about my life and the nonprofit. I spoke at countless schools and met some incredible people.

I will return to the nonprofit later in the book, but for now, sexy time!

chapter 30