Laughing at My Nightmare Read online

  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

  first (real) girlfriend

  “Hey, Shane, I know this is going to seem weird, but I added your brother on Facebook and asked him for your number because I’ve been reading your blog for a long time and I just really want to get to know you. If you’re totally creeped out I understand, you don’t have to text me back, but I would love to talk to you!”

  This is the text message that I woke up to on a painfully cold October morning in my sophomore year of college. Having just been yanked from the perfect warmth of my bed and forced to suffer through the inhumane torture of showering at 6 a.m., I was not in any state of mind to deal with formulating a reaction to what I read, let alone try to type out a response. So I put my phone away without giving the text a second thought and returned to huddling over my cup of steaming coffee. I was never a morning person.

  An hour later, I was sitting in my Research Methods of Psychology class. My body was now awake and functioning, but my brain was still getting dressed and brushing its teeth. Staring at my lap, pretending to listen to my professor, but mostly just trying not to let my eyes close, I thought about the insanity of the last few months. What started as a random attempt to make people laugh had transformed into a blog that was attracting thousands of readers every day. What was going on?

  Around lunchtime, I remembered the mysterious text I’d read earlier that morning and brought it up on my phone to reread.

  Oh God, another crazy follower, was my first thought. At this point, my blog was beginning to take off at a dizzying rate. I was getting at least a few dozen emails a day, and many of them were along the lines of “OMG. I LOVE YOU. OMG.” I genuinely appreciated every email, but quite honestly, I was starting to become numb to the messages. These people liked the words I wrote, they were not actually in love with me. However, this was the first time a follower had gone through the effort of finding my cell phone number to text me fan mail. I respect a dedicated effort. For that reason I decided to humor this anonymous person, and I sent back a text that read, “Hahaha hey! What’s up?” This is so weird. This is so weird. This is so weird.

  After getting past the awkwardness of texting a complete stranger, I learned that her name was Jill, she was twenty-two, and she only lived about an hour away from me. By the evening, after we’d been texting most of the day, I became aware of my heart beating just a little harder every time my phone buzzed and her name came up on the screen. The conversation slowly transitioned from casual to intense. Inevitably, the subject of significant others was brought up, and at first I felt uneasy and annoyed that our chat was progressing in that direction. Relationships were a sore subject. I still hadn’t had one. At the same time, I couldn’t help but feel intrigued. She was the one to bring up the issue. In my limited experience, I always had to be the one to start this conversation, since girls are generally not interested in me. The few times I tried throughout my life, bringing up the topic in a nonchalant manner (so they didn’t get scared away by the wheelchair kid making subtle hints at more than friendship), it always felt like I was being a douche bag. Girls don’t want to date you, I told myself; talking about relationships and being flirty was pointless. Nonetheless, she asked me if I had a girlfriend. Battling nervous excitement, I decided to test the waters. Fuck it, if she gets turned off and runs away, I will stop texting back and move on with my life as if she never existed (not proud of that thought).

  Explaining my lack of relationship experience is about as much fun as having a cavity drilled (I’ve never had a cavity): Hey, I’ve never had a girlfriend, and I have a sneaking suspicion that it has to do with my disease. Why, you ask? Well, for one, there are the 9000 things I need help with/can’t do which seems to be a turn off for most girls, since I’ve been friend zoned more times than I can count.

  Her response was simple, but it turned my heart upside down and made my palms sweat: “I don’t need physical intimacy from a relationship, because that’s not what is important to me. With that being said, I would enjoy being physical with you, and I don’t see any reason why we couldn’t be. You said yourself on your blog that everything works. We might have to do things differently, but I like different.”

  Mind blown. This wasn’t happening. I had only “met” her a few hours ago, and that was only via text message after she had, for all intents and purposes, stalked me to find my phone number. She could be a forty-seven-year-old man for all I knew. Throwing these cautions to the wind, I flirted back, saying something about the irony of how capable I am in the penis-department despite how shitty the rest of my body is. I didn’t sleep that night.

  We continued talking first thing the next day, and a few days later we Skyped for the first time. (She was not a forty-seven-year-old man, but in fact, a pretty twenty-two-year-old girl.) Our conversations over the next few weeks confirmed that we were bot
h very interested in each other, as the topics ranged from our mutual affection for music, to the logistics of how she was going to give me the greatest (and first) blow job I’d ever gotten. I was in awe with her willingness to be sexual with me. I was blinded by the sexuality. I never once stopped to consider how fast things were progressing. I blame my hormones. Skype and texting quickly became insufficient means for sharing our affection. We started planning her first visit. That semester, I only had classes on Tuesdays and Thursdays, which meant that I was home alone for most of every Monday, Wednesday, and Friday. A Friday was selected so that we could be alone together for a large portion of the day. I told my parents I was having a “friend” over, who I had met through the blog. They were very unsettled about letting a stranger come over while I was home alone, but I guess I was a good whiner because they eventually gave in.

  Fast forward a few weeks.

  The front door opened and my heart nearly leapt out of my chest to greet Jill for the first time. It was early in the morning, probably not even 10 a.m. Well before the appropriate time to begin hanging out with someone, but we didn’t care. A month of constant Skyping had built up so much tension that seeing her walk through the door practically made me explode.

  “I love you,” were the first words to come out of my mouth, thinking I was being suave. Instant regret. My face got red and started to burn when I heard her utter the same phrase in response. You don’t love her, danced around inside my head for a few seconds before I shut the thought out while making small talk about traffic and coffee and being tired and other boring topics that neither of us cared about. She sat on the couch close to where I sat in my wheelchair, probably noticing my eyes wander up and down her body. I still remember the black sweater and skirt she wore. We had previously agreed that it would be a “lazy day” of watching movies, and that we were not going to dress nicely for each other. It relieved the tension of meeting in person for the first time. Apparently, neither of us had chosen to abide by the dress code of sweatpants and t-shirts, though.

  After talking for a while, we decided to move to my bedroom and commence the planned activities for lazy day: laying in bed together watching movies on Netflix. She sat down on the edge of my bed and told me to come closer. Welp, here goes nothing! A lifetime of fearing that I would never experience real physical contact with a girl, an intense fear that I was unprepared for being intimate, and a very realistic fear that one of my parents would come home and find us, were all shoved into the back of my mind as I positioned my chair so that our faces were only inches away from each other. It was 11 a.m. and Mom would undoubtedly be stopping home for lunch around at 12:15 to meet Jill (and to make sure we weren’t being naughty), but I ignored that thought too.

  We looked into each other’s eyes, as she gently put her hands on my neck, supporting the back of my head in such a natural way, and leaned into me. I closed my eyes and stopped thinking for perhaps the first time in my life as our lips met. We breathed hard as little sighs of exhilaration escaped our mouths’ in between kisses. I slipped my tongue inside her mouth and let it wrestle hers. She giggled and did the same. Several times we got so into it that I lost balance of my head and it went flopping back into that terribly uncomfortable position. One of the times it fell she refused to help me up and continued kissing my neck. I could not have been happier.

  “Alright, do you want to try to lift me out of my chair?” I asked her, the nerves returning full force.

  “Yes,” she chirped before kissing me several more times.

  I backed away from her embrace and prepared myself for teaching a new person how to lift me.

  In bed we snuggled up close to each other, which was harder than you might imagine. At first we tried sharing a pillow, but when she slid close to my body and rested her head next to mine, my entire body tipped towards the slight incline in the mattress that she created by lying next to me. My face smashed up against hers and my knees rested against her thighs. Not exactly romantic. We giggled like two stupid kids and continued kissing while trying to rearrange our bodies into a position that allowed us to be close, but also comfortable. Eventually we found a spot on the bed that worked nicely. Both of us were kind of halfway on our sides, facing each other, and we used an extra pillow to prop my head into the perfect making out position.

  Once again I lost control of my mind. Having a real human girl to share this kind of intimacy with was surreal. After eighteen years of believing I would never find someone who didn’t care about my disease, my tiny arms, my weak muscles, my wheelchair, my dependency on others, my inevitable decline, my death, and now here laid Jill, caressing me and kissing me and acting like I was the sexiest, most able-bodied boy she had ever met.

  You’d have trouble conceptualizing the increase in excitement when, to my surprise, Jill started sliding her hand down the front of my pants. Holy shit. This was happening.

  Let’s stop the story for a minute so I can explain some background. It’s getting kind of steamy, anyway.

  My penis works fine. Erections are the result of an avalanche of blood rushing into the penile cavity (that’s the medical definition, anyway). SMA doesn’t affect my blood avalanche capabilities, so I get boners and keep them just as well as any horse (I mean person).

  “Can you masturbate?” is a question I get asked at least once a day by anonymous people reading my blog. Weird thing to ask, by the way. But the answer is that I used to be able to. Before my wrists and elbows became too weak and atrophied to reach down between my legs while lying on my back in bed, I had no trouble partaking in that form of entertainment. Of course I had to be smart about it, since the clean up process could be a little tricky. My solution was to lie in bed to “watch a movie.” Then I would tell someone in my family that I had a runny nose, asking for a few tissues to hold while I “watched the movie.” After unloading into the handful of tissues, I’d wrap them into a neat little pile that hid the contents very nicely. Besides, when I asked someone to throw away a handful of “snot-” drenched tissues, their natural reaction was to grab more tissues to separate their hands from the slimeball as much as possible. (Have you puked yet? I feel no regret. You gotta do what you gotta do!)

  Eventually, I lost the physical ability in my arms to masturbate. It sucked. There’s no pretty way to put it. It just plain sucked. I started having wet dreams all the time, given the buildup sperm inside of me. This meant waking up and deciding between lying in a puddle of my own semen for the rest of life or calling my dad to help me get cleaned up.

  As you can see there was more than one reason why Jill’s hand sliding down my pants excited me. I practically lost it the instant her hand slipped under the waistband of my boxers. But for the sake of being cool and macho or something stupid like that I held it together.

  To all my family finding this out for the first time, especially you Mom and Dad, um, don’t be mad. I love you a lot. Next time we see each other let’s just pretend you didn’t read this chapter.

  Jill proceeded to take my pants off. We snuggled closer under my blankets and she gave me the best orgasm I had ever experienced to that point in my life. Apparently, I was pretty terrible at masturbating even back when I thought I was doing it well. It took me a solid few minutes to regain mental function. When I did return to earth, my responsible side took over. It was almost noon, and my mom would be home soon. We were both half naked and not in any mood to get out of bed. However, it takes an expert caregiver (like my parents or brother) about ten minutes to get me dressed and in my chair, and that’s when I’m NOT a mess from the morning’s activities. Panic set in and propelled us to clean up our mess as quickly as humanly possible. By “we” I mean “she.” I basically just lay there offering moral support in between bouts of laughter at the absurdity of the situation.

  We flew through a crash course in getting Shane dressed and were able to get ourselves into the dining room just as my mom came through the front door.

  After I introduced Jill, Mom as
ked, “So, what have you two been up to?”

  “Not much, just hanging out,” I said, glancing at Jill with a subtle wink. Mission accomplished.

  Once Mom left again we went right back to our previous activities. It was an exhausting day, but it left me with an incredible sense of hope. Jill was clearly very into me.

  Living an hour away, and both being in school meant we couldn’t hang out as often as we liked. The texting and Skyping were constant, but it just didn’t compare to the physical intimacy we could share when we were together. A few weeks later I asked her to be my girlfriend, feeling like it was the natural progression of our relationship, considering how sexual we were being every time she visited, and how much I liked her. She agreed and I crossed another “never have I ever” off my list. It was a huge moment.

  Jill and I were very happy together for a few months. We hung out as often as our schedules allowed, went on dates, had “sexy time” whenever possible, and learned a lot about each other. But somewhere along the way, my feelings started to change. I noticed myself feeling like I wasn’t as emotionally invested as I should have been. During some soul searching, it occurred to me that I had gotten so wrapped up in finding a girl who was interested in being sexual with me that I had forgotten the values that truly matter in a relationship. I had ignored vital aspects of growing closer to Jill while focusing on the intimacy. I suddenly felt like I was only interested because of the amazing orgasms I was getting. Those feelings, coupled with increasing responsibilities in other areas of my life, led me to decide that it wasn’t fair of me to stay with Jill. I could have easily lied and pretended I felt more than physical attraction, but it never would have worked out and deep down I knew I couldn’t do that to her.