by Shane Burcaw
“We will figure it out—together,” she says, “No matter what happens we are going to get through it together.”
I believe her.
For most of my life, as I mentioned, I have not been in a wheelchair in my dreams. In them I run and jump and play sports, and when I wake up, I wish I could fall back asleep and return to that perfect world without my chair. A few months after meeting Shannon, those dreams stopped, and now I’m in a wheelchair in all of my dreams. I’m no expert, but I believe that at a subconscious level, my body no longer desires the escape of being able to walk.
There’s no better way for me to capture our relationship in writing. Shannon O’Connor makes me excited about our long-term future and gives me incredible comfort in dealing with my disease and everything it brings.
This was taken seconds after Shannon farted.
chapter 35
the end (the beginning)
The floor of the living room in our house is strewn with cardboard boxes overflowing with Laughing at My Nightmare merchandise, suitcases, camera bags, lighting equipment, coolers, and about a thousand other things. Mom sits on the couch, glancing anxiously back and forth between a list in her hands and the mounds of crap on the floor.
“You are absolutely positive you have everything?” she asks me for the seventh time.
“One hundred percent,” I say, staring out the front window at the white rented minibus that’s being loaded from the rear. The first annual Laughing at My Nightmare LaughTour begins tomorrow.
We wake up with the sun on May 24, 2013. Andrew comes in my room to get me dressed and seems more excited than I do, but to be fair, I still haven’t had my coffee, and yesterday was his last day of high school. That’s really where this whole crazy idea came from. Andrew and I decided we wanted to do something epic to celebrate our last summer together before he went off to college. A road trip to visit Shannon in Florida seemed like the perfect adventure. Mom wasn’t so hot on the idea of Andrew keeping me alive on the road, and requested we bring a third person along. I invited my friend Mark Male, who was serving as the Operations Director for my nonprofit at the time. We were originally connected through a mutual friend just a few months before, but had become great friends in that brief amount of time. He agreed, and Mom gave us the go ahead. Mark, Andrew, Shannon, and I began to scheme. What if, instead of just driving to Florida to visit Shannon for a few days, we picked her up and did a Laughing at My Nightmare speaking tour on the way back to Pennsylvania? We took hold of this idea and ran with it.
The details started to fall together as if by magic. Putting a post on my blog was enough to get us speaking engagements at three venues, including one speech to the employees of Disney World. We arranged and began to promote four additional Meet-Ups (where supports could come hang with us for a few hours) at Panera Bread locations in four states along the way. Earlier in the year, Rainn Wilson’s company, Soulpancake had done a documentary about my life and the blog, so I reached out to their film crew to see what they thought about doing a full-length documentary on the trip. They loved the idea, and we began to crowdsource funding to make it possible for them to come.
“The film crew is already here,” says Andrew, rolling me out of bed. Justin, the director of Wayfarer Entertainment, sneaks into my room followed by two cameramen and a sound technician. They capture Andrew putting shorts and a T-shirt on me as we prepare for our first road trip without our parents.
“I’m not doing this again until we get home, so I hope you like these clothes,” Andrew says to me. Justin stifles a laugh, but not very well.
I look directly into the camera Justin is holding and say, “You’re gonna have to get better at controlling your laughter or you’re going to ruin the whole documentary, asshole.”
“You’re gonna have to not look at the camera or talk to me while we’re filming, stupid” he says.
“You can suck a dick and not come with us,” I say. Now the whole crew is laughing and the rest of the shot is mostly ruined. This becomes a theme during the trip, trying to make the film crew laugh to mess up their shots.
I say goodbye to my parents in the gentle rain of the early summer morning. Mom is nervous, still making sure we have everything. Dad is cautiously excited. Two vans depart from our cul-de-sac, one driven by Mark, with Andrew, me, and two cameramen inside, and another with the rest of the crew. Next stop: Daytona Beach, Florida.
We all underestimate how boring the first leg of the drive is going to be. The interviews start as soon as we’re on the highway. Justin questions all of us about everything from our sexual fantasies to our expectations for the trip as we cruise down I-95. When filming a documentary in a car, you can’t have the windows open or the radio on, or the noise ruins the shots. This becomes highly annoying around hour five or six. Andrew gets bored and starts farting to entertain himself as we gag in the windless van. Despite the small annoyances, this is by far the most fun I’ve ever had.
We get to our hotel room in Daytona Beach around 3:30 a.m. Andrew is driving when we arrive, but the only reason we made it in one piece is because I’ve been screaming at him to stay awake for the past two hours. The motel room has to be the most disgusting things I’ve ever seen. It’s still ninety-eight degrees and 100 percent humidity in Florida at 3:30 a.m., and the hotel room feels like the inside of an old man’s crotch. And it’s full of bugs. We are so tired we hardly even care. The schedule Mark and I created for the trip says we need to be back on the road by 6 a.m., so Andrew tosses me into bed and we crash for a few precious hours.
We arrive at Shannon’s house mid-morning the next day. I can’t get over how oppressively hot it is outside. I love it. Everyone else complains incessantly about the sweat gathering in their underwear. I ignore the sweat and drink up the beautiful sun. Shannon practically cartwheels out to meet us, hugging everyone, including the film crew who she has only met on Skype to this point. We are a great big family already. After a quick but gracious breakfast with her family, we are back on the road. Shannon’s ridiculous amount of clothing barely fits in the van. We almost have to leave her behind.
At our first Meet-Up in Orlando, we realize we should have made more concrete plans with the staff at Panera. About fifteen people show up to meet us, and the restaurant is so busy that we have tremendous trouble finding a place for everyone to sit. Lack of room doesn’t dampen anyone’s enthusiasm, though. A man in his late twenties, covered in tattoos, with a backwards cap, begins to cry as he thanks me for writing my blog and starting the nonprofit to continue sharing the message of humor. “You helped me get through some tough shit, man,” he says to me. I’m overwhelmed. This is suddenly so real. The implication of the work Shannon and Mark and I have been doing finally hits me. I sound like a babbling idiot as I try to thank him in return, knowing I can never show him how happy he has made me.
On the way to Disney, Shannon surprises me once again. She has reserved us a room at a fancy resort in Disney for the two nights we were staying there. “Happy Birthday!” she says. I have almost forgotten that I turn twenty-one in just three days. The room is amazing, but not quite as amazing as the lake, the pool, the bonfires, the scenery, the candy, and all the food I can imagine that comes with staying at this resort. Shannon loves Disney either equally or more than she loves me, and she isn’t settled in the room for two minutes before she asks when we are going to Magic Kingdom.
Our speech to the Disney employees is the next day, and when we arrive they tell us no professional film crews are permitted inside the park. Personal cameras are fine. Easy enough, we strap a Canon 5D Mark 3 to the headrest of my wheelchair, and my “personal camera” records every minute of our day. There aren’t many amusement park rides I can go on without snapping in half, so we take our time exploring the park. Mark and Shannon and some of the film crew ride a few roller coasters, but most of the time we stick together.
The speech goes better than we expect it to go, since it is our first. The cast members surpri
se us, and we get to speak to a group of about fifty employees inside Cinderella’s castle. After that, they announce that the four of us have been chosen to lead the big parade through Magic Kingdom that afternoon. Thousands of people line the streets of Disney as we ride in the Grand Marshal’s car through the park. Justin sprints through the crowd trying to capture it on his “personal camera.” By the time we get back to the hotel late that night, everyone is too dead to do anything but relax by the pool. I am in paradise.
We stop for another Meet-Up in the stunningly beautiful city of Savannah, Georgia, before moving on to Charlotte, where we stay at Mark’s house for a quick night. I turn 21 at midnight, and Mark’s roommate bakes a cake. I take my first legal shot of Jack Daniels. The film crew captures me pooping and also films the clean up process that night. Normally, this would have been the most awkward moment of my life, but I’m so tired I don’t even care. That night I fall asleep harder than I ever have before. As much fun as we are having, this is by far the most exhausting experience of my life.
The Laughing at My Nightmare crew and part of the documentary team
In the morning we depart at the crack of dawn for a morning Meet-Up in downtown Charlotte. We are a half hour late, but when we enter, a teenage girl and her mom leap from their table to greet us. They tell us they have FLOWN FROM ALABAMA TO ATTEND THIS MEET-UP! The girl, Lillie-Ben, says she found my blog while going through a tough time, and that my story helped her get through her adversity. She has a necklace for me, that is meant to be passed on to someone who impacts you deeply. I am honored. I ask them probably ten times if they seriously got on a plane just to see me. We hang with them and the many other awesome people who are there for as long as we can, but soon must pile back in the van to travel to our next speech in Winston-Salem, North Carolina.
I fall asleep in the van face down into a pillow that I situate in front of me in my wheelchair. When I wake up, I’m covered in gooey drool. Shannon cleans me up and teases me relentlessly before we head into the high school that we’re speaking at.
We are an hour early. The stage at the front of the empty auditorium has five massive steps keeping me from getting where I need to be. We forgot my portable ramps at home, the only item to escape Mom’s anal list checking. After greeting us, the principal of the Kingswood school departs from the auditorium to round up a group of hulking men. Together they lift my wheelchair onto the stage while I lie on my back across three auditorium seats. Andrew carries me up the steps and puts me back in my wheelchair, helping to hide my wireless mic discreetly behind shoulder straps. I’m getting nervous as we make last minute preparations backstage. Our speech, which Mark, Shannon, and I have been writing and rehearsing for the past month, seems like a foreign language, I can’t remember any of it. Between a gap in the curtain I see the auditorium filling up with hundreds of students. My heart is racing, and the muscles in my jaw start to constrict. I fear I won’t be able to speak for very long before I’m reduced to an indecipherable mess. The three of us share a collective moment of panic as we realize we don’t know the speech well enough to give it without the use of notes. We decide to have the speech open on a laptop, in case we forget our place.
The crowd erupts as we are presented and come into the spotlight. Holy shit, why? They are treating us like superstars. Surely we won’t live up to their expectations. Deep breaths, I tell myself. Don’t focus on your tightening jaw. Just talk. We begin, and our opening lines illicit genuine laughter. I expect a school full of troubled youth couldn’t care less about what we have to say, but they are focused intently on us, so much that it’s almost creepy. Much of the rest of the speech is a blur. My jaw starts to act up, and I work through it. Shannon forgets a line, and the audience doesn’t even notice. Mark, who had the least amount memorized, barely needs to use his notes. At the end, the audience erupts again. The students start a standing ovation and Shannon cries. I tear up as well, but I’m a tough macho man so I hide it as best I can.
During the Q&A that immediately follows the speech, near the end, one of the younger students from the middle school stands to ask a question. He is maybe thirteen, with shaggy clothes and a rough look that tells me he hasn’t had an easy life. His friends look at him in awe, as if this is completely unlike him.
Proudly and confidently he looks up to us and says, “I just want to thank you guys for coming to our school and sharing your story. I have a lot of problems myself, and hearing your story and the way you handle your problems makes me want to write my story down to share with people and to look at life more positively like you guys do.”
His words hit me like train. My entire life I have been striving to convince the world that I am normal, that my disease doesn’t define me. Now, here stands a little kid who is thanking me for just being me and sharing my story with him. I could’ve gotten on that stage and spouted an hour of “People in Wheelchairs Are Normal!” and it probably wouldn’t have affected a single person in that auditorium. Instead, the three of us spoke honestly about our lives. None of us are normal. I have a disease that’s causing my muscles to waste away. I don’t know if I’ll be alive in ten years. I’m afraid to die. There are tons of annoying, aggravating, obnoxious, and difficult things about living with SMA. But you know what? Life is still fucking awesome. Every single one of us has problems. That’s part of being alive. The beauty begins when you connect with other people and realize that we’re all in the same boat. Once we accept that life is inherently difficult, we can move on and focus on having a good time despite the tough stuff.
Until now I believed my blog and the nonprofit were just ways to make people laugh, a form of entertainment. I received countless emails telling me how much I was helping people, and I became numb to it! There’s no way a story about spilling urine on myself is actually going to change anyone’s life. But the genuine thankfulness in this kid’s voice has slapped me across the face and opened my eyes. I thank him, but my words don’t come close to expressing how profoundly he has impacted me. I’m going to throw everything I have into this nonprofit for as long as I can physically manage. I’m going to make people laugh and show them that life is just easier to deal with when you’re laughing.
The curtain closes behind us as we head backstage to pack up for the drive to the next stop. Then the ceiling of the auditorium collapses and everyone in the audience dies.
Just kidding. (I can’t in good conscious end my book on a serious note. Okay, now what?)
How I Poop:
Step 1: Dad lifts me from wheelchair to changing table he made for our bathroom. (It’s really just a floor cabinet with a soft pad on top.)
Step 2: Dad pulls my shorts and boxers off.
Step 3: Dad lifts me from changing table to toilet and straps me into special backrest. Dad leaves bathroom.
Step 4: I poop by contracting the muscles in my rectum.
Step 5: I yell, “DONE!” when I’m done. Sometimes when I’m feeling fancy, I sing it.
Step 6: Dad lifts me back on to changing table. (Occasionally, there is what we call “a hanger,” also commonly referred to as a “dingleberry.” If a hanger is present, lifting must be executed with extreme caution.
Step 7: Dad wipes my ass with a baby wipe while I pretend to be macho.
Step 8: Dad redresses me and puts me back in my chair.
Step 9: I exit the bathroom and announce the size of my poop to all present family members and houseguests.
acknowledgments
Fear of accidently leaving someone out almost caused me not to write acknowledgments. This list is by no means exhaustive. There are an incredible number of people who have helped me along the way. I am forever grateful to each of you, whether I name you here or not.
First, I would like to thank my parents and brother for putting up with me through this writing experience. We all know that I sometimes got pretty moody after days of writing and editing. Your support and encouragement, toward my book and my life in general, mean the world to m
e, and I can never say thank you enough for being so amazing. Andrew, I’m still cooler than you. Thank you to my girlfriend, Shannon, for believing in me and daring me to step outside my comfort zone when I write. Thank you to my extended family for your genuine interest in all of my activities, from this book to the nonprofit. Thank you to my friends for not hating me too much when all I could think about was writing. A very special thank you goes to Joyce Hinnefeld, a professor of mine who became my mentor for this whole writing process. Your coaching and honest reviews of my drafts made this book about a million times better. Thank you to my friend Paul Acampora for introducing me to the amazing Tina Wexler at ICM, who became my agent. On that note, thank you Tina for not rejecting my initial query. It still blows my mind that you wanted to represent me. Your guidance has made this so much more enjoyable. Last but not least, thank you to my brilliant editor, Nancy Mercado, who challenged me and refused to let me put anything but my best into these pages.
When this book goes double platinum I’ll buy you all a beer. Can books go platinum?
