Laughing at My Nightmare (21 page)

Our story is rather unusual, as most of mine are, and filled with millions of details that I could never begin to relate in a single book. This is my poor attempt to summarize our time together.

That is my “happiest boy on earth” face. Shannon and me being cute like always.

It started with a post on my blog in May 2012. My nonprofit was looking for new volunteers. We had this crazy idea to make a mini-documentary about my life and how LAMN got started. For some terrible reason, we decided to crowdsource ideas for that documentary through the followers on my blog. In hindsight, it was probably the best worst idea I’ve ever had. Asking people from around the country who had little to no idea about who I was as a person to essentially storyboard a video about my life basically failed. (The final product was not a failure though! Don’t get ahead of me.) But I never would have met Shannon if it weren’t for putting up a post asking for creative volunteers.

Her application stood out from the dozens of other “OMG YOU’RE MY HERO PLEASE LET ME WORK WITH YOU! <3” emails that I received. She wrote with refreshing honesty about the fact that her mom had passed away a few years prior due to an extensive battle with cancer. Witnessing her mom’s long-term illness and eventual passing, she explained, taught her to appreciate every moment of being alive. She wanted to help share that message with the rest of the world.

This girl gets it.

As I read more, I was astonished when Shannon explained that she had graduated high school at the age of fifteen and was a freshman at Indian River State College by sixteen. Included in her application were several references and examples of work that she compiled from various internships she had balanced while attending school and helping to take care of her mom.

The profile picture associated with her email address further captivated me. She had a gentle smile, with bright eyes that radiated curiosity and wonder. Her lightly tanned, freckle-covered beach body grabbed hold of my mind and hasn’t let go to this day. She was gorgeous.

This is not a fairy tale. There was no life-altering change inside of me while reading her application letter. I didn’t rip my clothes off, climb a mountain, and announce to the heavens that I had found the girl of my dreams. Not that I even could if I felt so inclined.

My reaction was much more practical. This girl, who had a ton of creative experience in print and digital media, would obviously be a great asset to our video production team. I replied to her and a few other well-qualified candidates, congratulating them and initiating plans to begin working together. But later that night, I found myself rereading Shannon’s email.

Fast-forward a few weeks. We were laughing. It was 8 a.m., and Shannon and I were already an hour into our first Skype of the day. Both of us looked like we desperately needed sleep, with baggy eyes and—for me at least—unshowered, crazy hair. We laughed quietly on either end of North America, careful to not wake anyone up in our respective houses, but giggled ourselves breathless nonetheless. I discovered soon after beginning to work with her that her sense of humor was flawless. We were always laughing. In this particular moment the laughter came from some of the more problematic ideas our creative team had generated. Someone suggested we do a remake of
The Lion King
, and Shannon was having trouble staying in her chair as she imagined me dressed up like a baby lion and lifted above someone’s head, similar to the movie’s opening scene.

It became apparent that Shannon was taking her volunteer position very seriously. I had expected to hold a brief Skype meeting with our creative team to introduce the project before sending them off to brainstorm on their own. I figured they’d submit their ideas via email and that would be the extent of our interaction. The process went as I imagined for all of our volunteers, except for Shannon, who was going to be more involved whether I wanted her to be or not. She gave me no option but to ask her for continued assistance throughout the rest of video production.

Shannon was having a rough time with a relationship that summer, explaining to me that over the previous few weeks, her boyfriend started to become a different person, one that was more interested in getting high than being in a committed relationship. I listened and did my best to let her know that I was there if she needed me, albeit a thousand miles away. At night, Skyping became less about work and more about getting to know each other. One day her boyfriend stopped replying to her texts and told her it was over four days before she was supposed to go on vacation to visit him. On Skype that night, she hid her face and openly cried in front of me for the first time. It was devastating. I assured her there were better guys out there. As much as it pained me to see her so upset, it felt good to know that she was comfortable enough to share an intimate moment of her life with me. I desperately wanted to be next to her so she had someone to lean on. It’s impossible to pinpoint an exact moment when the transition occurred, as well as pointless to try, but by this night I can say that we had become best friends.

We Skyped for hours on end that summer. My friends questioned why I had suddenly become a recluse. In years prior, my summers were spent lounging by the pool, going out with friends, and being outside as much as possible. I still did that stuff, but now my days were centered around Skyping with Shannon as much as possible. We worked on the video constantly. We texted incessantly. Along the way, I asked her to serve a larger role than the other volunteers who had helped with the video. When we weren’t working, we told each other stories from childhood, made fun of people, discussed our lives and the future, and made each other laugh. Sometimes we ended up just sitting in silence on Skype together, an activity that never felt awkward to either of us.

Shannon suggested we reach out to local production studios for help with filming and editing the documentary. After many disheartening “Sorry we are just too busy for a pro bono project at this time,” responses, a company name FireRock Productions said they would love to get involved. A few meetings were held and filming was scheduled for late July. The night before filming, Shannon and I were on Skype discussing the shoot. One of the shots we were supposed to film the next day involved a slow motion paint fight. Out of nothing but laziness and wanting to take the easy way out, I scrapped the idea without telling her. The shot required a bunch of supplies, and I didn’t think the effort was worth the reward.

Shannon couldn’t attend filming, since she lived in Florida, but she was involved in every last detail until the cameras were rolling. On Skype that night before filming, it came out that I wasn’t planning to film the paint scene. She lost it. I was unprepared, and it suddenly felt like I had been thrown in a cage with the grizzly bear. In an argument that I feared would end with her never speaking to me again, she questioned my integrity, my character, and whether or not I had what it took to devote myself to LAMN wholeheartedly. I wanted to counter her stabbing questions with smart remarks and witty responses, but nothing came to me. She zeroed in on one of my biggest flaws with a level of perception that amazed me. By the end of our fight, I knew I needed to improve my dedication to the company. Shannon has never allowed me to accept complacency in any aspect of my life. She inspires and drives me to continually improve myself to be the best human being I can be.

We filmed the paint scene, and it was fucking awesome.

Given the opportunity to put paint on his nipples, Andrew will always accept.

A few weeks later, I found myself crying uncontrollably in front of Shannon over Skype. I don’t often cry, especially in front of other people, but that changed as well when Shannon came into my life. It was one of those rare moments when everything awful about my disease caught up to me all at once. I had woken up in the middle of the night, fairly certain that my body had just stopped breathing in my sleep. My lungs were obviously getting worse, which forced me to think about the fact that I am always getting worse and that it’s never going to stop. Slowly but surely, I will lose all physical ability. Now my lungs were starting to fail, and I was afraid to go to sleep out of fear that I wouldn’t wake up the next day.

I explained all of this to her through cloudy eyes and choked back sobs.

“You’re going to have good days and bad days,” she reminded me, “and it’s okay to be afraid.” It was nice to hear that, and she was right.

The difference between Shannon and the rest of the world when talking about the issue of my disease, is that she doesn’t make me feel like I need to change the subject as fast as possible for the sake of her own comfort. She is perfectly at home discussing my fears about death and the future.

We said goodnight, and I went to bed feeling considerably better than I did before.

A few nights later I told her I loved her, following with an addendum that I wasn’t professing my romantic love to her (as much as I wanted to), but that I considered her one of my best friends, and should something bad happen to me, I needed her to know that I loved her in a best friend sort of way. I adopted a routine of texting her goodnight and I love you before bed every night. She began saying it back and everything seemed perfect. The first time I said it to her on Skype, the intensity of her blush-filled smile embarrassed her so much that she quickly said goodnight and hung up. I think we both began to sense deeper feelings that night.

On the morning of Friday, December 21, 2012—the day the world didn’t end as some were predicting it might—Pat came over in the morning to hang at my house for the day. His sister Erinn was getting married that night, so we figured we had at least five solid hours to play FIFA before he and my family had to get ready for the 7:30 p.m. service.

When Pat arrived, I was Skyping with Shannon, so he sat next to me and joined our conversation. Shannon and Pat were well acquainted by now. I had been talking to Shannon pretty much nonstop since I’d first met her back in May. Although we still hadn’t met in person, she knew my friends and I knew her friends. After discussing the overwhelmingly disappointing Mayan apocalypse, we shared our plans for Christmas, as we were all very excited about the approaching holiday.

Pat and I would be partaking in our normal family traditions: family visiting, visiting family, eating too much food, exchanging gifts, all the things that make Christmas such a beautiful time of year. Shannon, as she had been telling me for a few weeks, was flying by herself later that day to spend Christmas with family in Nevada. She was not looking forward to it, mostly because of her severe fear of flying, which is putting it lightly.

While we were Skyping, Shannon held her phone up to show me a funny picture. As she did this, I saw a notification flash on the top of her screen: “Text Message: Pat Hess.” Oh cool, they were texting behind my back. I didn’t care much; Pat had a girlfriend, and it was pretty well established that Shannon and I liked each other, but since I caught them in such a peculiar way, I pretended to get really mad and grilled Pat about what they were talking about. He awkwardly danced around my questions until I was sure they were talking about me, but he repeatedly assured me it was nothing, so I let it go. After a while, Shannon had to leave for the airport so we said goodbye and wished her good luck.

Pat and I played FIFA all day. Erinn’s wedding was beautiful. When we came out of the church after the service, the night sky glittered with heavy snowflakes, which is about as romantic as you can get for a post-wedding scene. Life was pretty great, but I couldn’t help but feel like I was missing something. Not having Shannon around to spend the holidays with just felt wrong. Although we lived so far apart, I considered her one of the most important parts of my life.

Later that night after the reception, Andrew and I were hanging in my room, planning on watching Netflix all night. Around 11:30 p.m. Andrew paused the movie and sheepishly said, “Hey, I think my friend Ryan is gonna come sleep over tonight, so I’m gonna have to go out and meet him cause he’s never been here before.”