by Shane Burcaw
On my first day of college, I rolled into my first class of the day, knowing almost nobody and nervous as shit that I would remain friendless through the next four years. I pulled my chair up next to a kid and asked if I could sit by him. He agreed and we briefly chatted until the professor walked in and began class. So far, in my mind I had assessed the situation as a success; the kid sitting next to me wasn’t being awkward about my disability and now that class had started I patiently waited for a chance to answer a question in a way that would show the other students I was not mentally challenged. I know, I have some odd insecurities.
Anyway, as the class proceeded, the professor started writing some notes on the chalkboard. Suddenly, his piece of chalk broke and fell against the metal chalk-holder below. I must have been daydreaming because the sudden loud noise was enough to make my body flinch. I was unprepared for the flinch and sure enough, I lost balance of my head and it started to fall. Using all the strength I had, I tried to keep it upright, but I didn’t react fast enough and my head fell all the way back. If you want a mental picture of what I looked like, tip your head back as far as you can and keep it there. I was now sitting in class with my head stuck in that position.
It felt like every single person in the classroom was staring at me, probably because most of them were. Only about thirty students were in this particular class, so the small classroom made it all the more obvious. There was no way my professor didn’t notice, but he continued the lecture as if nothing had happened. For a moment, I sat there with my head back, as the situation sank in. It might not seem like a big deal, but in that moment I reasoned that I would probably never make friends during college; people would never feel comfortable approaching me. Then reality hit and I needed to decide how I was going to get my head upright, because having my head so far back is also kind of painful. The kid next to me was either completely oblivious to what had just happened, or pretending he didn’t notice. The following is the whispering conversation we had as I awkwardly tried to get help without drawing more attention to myself:
Me: Dude … can you like … push my head up for me … I’m stuck [awkward fake laugh].
Kid: Um, what?
Me: [quiet but real laugh as I realized how ridiculous I must look] My head fell. Can you push it forward?
Kid: Umm, I don’t know … how?
Me: Just put your hand behind my head and bring it forward.
He did what I asked, but didn’t push my head far enough forward for me to regain balance, and it fell right back to where it was before. It took him two more tries until my head was in the right position. I thanked him and sat there feeling utter embarrassment and guilt for putting him in that situation.
chapter 28
an evening with michelle
During my sophomore year, my good friend Lily surprised me with an awesome phone call. “Shane, Michelle Obama is speaking at Moravian! I got you a ticket. You’re coming with me.”
I’m usually pretty hesitant to commit to going to events before doing my own research. (Is the venue accessible? Will there be a handicap seating area? Will I be able to see from that area? Will my nondisabled friends be able to sit with me in the handicap section?) However, Lily quickly convinced me that an event of such prominence would obviously be accessible, and that this was a once in a lifetime opportunity, and that we wouldn’t be friends anymore if I didn’t attend. Needless to say, I attended.
In the van on the way to the speech, Lily and I speculated about what the seating arrangements would be like. I’ve been to plenty of sporting events, concerts, speeches, and shows in my life to know that the handicap seating area is an often-overlooked section of many venues. Michelle was going to speak in the basketball gym at Moravian, a smaller-ish building that does not have a built-in handicap area. I would be sitting somewhere on the floor, probably near the front, I hoped, so I could see the stage. My biggest concern any time I go to a public event is that the handicap section will allow me to sit with at least one of my able-bodied friends. Let’s be honest, if you went to a football game with a bunch of friends, and found out upon arrival that you had to sit in a secluded area with a bunch of strangers while the rest of your friends sat together somewhere else, you would be at least slightly pissed. This has happened to me more than once, and it is indeed a pile of horseshit.
I must have expressed this mentality, because Lily asked, “So what do we do if we get inside and they try to split us up?”
“Tell them that you have to sit next to me in case I need my seizure medication,” I replied matter of factly.
SMA does not cause seizures; I’ve never had one in my life, but toss out the word seizure next time you’re trying to get something from a person of authority, and you’ll be amazed at how understanding they become. To hammer the point home, I promised Lily that if she didn’t do everything in her power to sit with me, I would tell the secret service that she was planning an assassination and have her removed from the venue. That’s what friends are for.
While waiting in line to get in, secret service agents approached us and instructed “my companion” and me to follow them. We were with several friends, but we assumed this would eventually happen, so we didn’t argue. Lily and I followed the badass dudes in suits around the side of the building and into the accessible entrance. Upon entering, we were greeted by an older man with a metal detection wand. At least I’m assuming that’s what it was; maybe it was a Republican mentality detector, so that they could keep all opposition out of the rally. He scanned Lily and let her through, then surprisingly just waved me through the security checkpoint without checking me at all. I have a bag on the side of my chair that, for all he knew, could’ve been filled with bombs and knives and rocket launchers, but I’m a cute little wheelchair kid so obviously I can’t be evil. I smiled and did my best to not look like a terrorist as I drove past him.
The gym was packed. A stage had been constructed on one end of the basketball court, and the rest of the floor was covered by thousands of human beings jamming themselves as close to the stage as possible. My initial thoughts were, “Holy shit. it’s a thousand degrees in here,” and “Where the hell am I supposed to sit?”
Off to the right I spotted a big blue handicap sign and some secret service agents standing around it. I moved towards the sign like a moth instinctively moves towards bright light.
A young woman with a volunteer sticker on her suit jacket stood next to the handicap sign and explained to us that the disabled seating section was located in the front, near the stage. She led us down a narrow path created by a rope barrier along the edge of the gym.
When the handicap section came into view, my heart sank a little. It was a small area near the stage that was blocked off with rope and very noticeably overflowing with old people in wheelchairs. The volunteer lifted the rope for me and promptly closed it in front of Lily. Before I could maneuver my chair around to argue, another secret service agent was directing me into a spot to park my chair. I parked and waited. I can’t turn my head or body very far in either direction, so when another wheelchair pulled up next to me, I was basically stuck staring straight ahead.
Someone off to my left, not in the handicap section, called my name multiple times, failing to understand that I physically couldn’t turn my body to look at them. I felt bad, but this wasn’t the first time this awkward situation had arisen, so I didn’t let it get to me.
A text from Lily informed me that she was in the regular, standing room only section. The secret service would later let her into the handicap section, but she had to sit behind me, making communication impossible by any means other than text message.
I was pissed. But my annoyance only lasted for several minutes before I had the epiphany that I was really lucky to be seeing this speech at all. I had a great view of the stage and ultimately, it was not important if Lily was sitting next to me or behind me. We weren’t at the speech to talk.
Fast forward a few hours, the speech was pre
tty good. Lots of “FOUR MORE YEARS!” chants, which were interesting. It was my first political rally, so I have nothing to compare it to. My mind was most captivated, however, by the people sitting around me in the handicap section. To my immediate left was a middle aged woman in a manual wheelchair who had spent a majority of the speech yelling, “DOWN IN FRONT!” attempting to make some people a few rows in front of us sit down. Assessing the position of her head, in relation to the position of Michelle on the stage, I decided she could see perfectly fine and was most likely just a curmudgeon. In front of me sat a very old man who read a very graphic war novel the entire time Michelle spoke and kept adjusting his wheelchair to be further to the left for no apparent reason. On my right sat two elderly war veterans, and I listened to them intently as they exchanged grim stories of racism back in the day. It was probably the most impactful moment of my night, hearing these two men discuss what it truly meant to have rights in America.
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 tha
t 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.