Laughing at My Nightmare (22 page)

I groaned, not really in the mood for his friend to intrude on movie night (mostly because I’d have to put pants on), and asked, “Ryan Patton? He’s been here many times.” Ryan was Andrew’s best friend.

“No. Ryan Troxell. He’s a new friend,” he said. Then he stood up and left the room. While I waited, I checked my phone to see if Shannon had landed in Nevada yet, but she still hadn’t responded to my text that I’d sent earlier that day. Bummer.

I sat in my room and ate leftover ravioli while impatiently waiting for Andrew and his new friend to come back. A few minutes later Andrew opened my door, came into my room, and said, “Hey Shane, there’s someone here that wants to see you.”

Before I could even express confusion, Shannon walked into my bedroom.

No fucking way. No fucking way. No fucking way. My brain stopped working. I dropped my fork and stared at her in disbelief. She … Nevada.… flight … Bethlehem … she’s standing in front of me … smiling … she came to Bethlehem! Thousands of thoughts and emotions flooded my mind, but all that came out was, “HOLY SHIT!”

Once we both got past the initial excitement of the fact that she was standing in my bedroom, she started explaining. She had been planning this trip for about a month. My parents, Andrew, Sarah, and my grandparents were all in on it. She came up with her stepdad, and they were staying until Christmas Day. I was in shock for at least the first two days.

Those four days with Shannon were some of the greatest days in my entire life. We hung out all day every day, and it felt like we’d been doing so our entire lives. She learned how to help me do many of the things I need help with and met most of my family. We went sightseeing, made gingerbread houses, had a snowball fight, watched movies, played games, laughed, laughed, laughed, went ice skating, had Christmas dinner at my Nana’s house, and made lots of fun of each other. It was perfect.

My job was to eat icing while watching Shannon build our gingerbread house.

Shannon went back to Florida. About a month later on a terrifyingly cold night in January, we were on Skype, and this time both of us were crying. I fucked up big time.

For months I had been head over heels in love with Shannon. Nobody had ever made me as happy as she did and her Christmas surprise just made my desires for her a thousand times stronger. It was as if flying to Bethlehem made the possibility of us being together an actual reality.

She admitted to having very strong feelings for me on several occasions, but always added that she still wasn’t ready to be with me. I told her I would wait because she was worth it to me. Shortly after she was back in Florida, we had the conversation again. She still felt the same way. I became discouraged. I knew she had many fears and hesitations about being in a relationship with me. They were justified and real and I understood them. But in my immature desire to have what I want when I wanted it, I began to lose sight of how much we loved each other. In essence, we were already dating without calling it that. Unfortunately, I couldn’t handle being told once again that she wanted to be together but just wasn’t ready yet, so I started talking to another girl. Perhaps it’s fair to say that I began to doubt Shannon’s feelings towards me and felt I needed to move on.

Back to us crying on Skype. Earlier that day, Shannon had asked me to Skype, as we usually did, but I told her I couldn’t because I was talking with the new girl, and that things were going very well between us. Something let loose inside of her.

Reduced to tears in the library of her school, she asked with incredulousness if I really didn’t believe she wanted to be with me. Had I forgotten everything we had been through? Was I ignoring everything we said to each other over the past year? Did I think her trip to Pennsylvania was something she’d have done for just anyone? Was I really going to throw away the profound love we shared for some immediate gratification?

I felt like the most horrible human to ever not walk the earth. Here I was, doubting her love, and when I tried to move on, I finally realized how serious she’s been about wanting to be together all along. Society tells me that I shouldn’t admit to moments like this, but we sat on Skype together and bawled our eyes out. Sometimes she yelled and other times she could barely look at me she was crying so hard. I’m not sure which was worse. I was completely resigned. No apology could fix what I had done, but I apologized profusely anyway. In that moment, I realized I wanted to spend the rest of my life with Shannon, and that I would give anything to be together and make her happy. I will always regret upsetting her so deeply on that day.

It is summer, and Shannon and I are lying together watching a movie. Her head rests gently on my shoulder and I feel her steady breathing against my neck. I can’t hide the perpetual smile whenever we are together. We are dating now and making regular trips to see each other. Shannon is serving as the creative director for my nonprofit. We whisper in the darkness about what we are going to do as my condition worsens down the road. We are planning out our future together. I should be terrified. My future is a very scary idea, but all I feel is confidence. Her hand tucks perfectly into mine and we lie quietly for a while, just holding hands.

“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.