by Shane Burcaw
Sexy, cute, disability … this photo was a winner.
Choosing a witty, attention-grabbing title for my post would be a huge determining factor in its success, so I pondered it for a while, and then titled it, “I have an adorable disease called spinal muscular catrophy.”
See what I did there? The real name of my disease is spinal muscular atrophy. See? Atrophy. Catrophy. Because of the cats on my lap? Brilliant, I fucking know.
To my zero percent surprise, the picture started blowing up immediately. A hundred upvotes! Two hundred and fifty! Five hundred! My picture made it to the top of the “Aww” front page in like fifteen minutes, which is Redditspeak for: It was going viral. I was jubilant.
I logged out to go do something more productive with my time, and when I came back a few hours later to check if I was famous yet, the post was completely gone. I thought the site was malfunctioning. Where was it? I had been in the fast lane to fame and fortune and now my photo had completely vanished!
There was a message waiting for me in my inbox—POST REMOVED. VIOLATION OF RULE 1.
What the fuck?
I looked up what Rule 1 contained for this particular subreddit, and I’m not kidding here, what I read felt like a punch to the stomach.
“Rule 1: No ‘sad’ content, such as pics of animals that have passed away … or sob stories.”
Apparently, in the eyes of Reddit, a site I respected for its forward-thinking embracement of all people and all ideas, simply living with my disease was considered too “sad” for inclusion on a page that was filled with thousands of able-bodied people posing with their animals.
I closed my laptop and went about my life, disheartened once again by society’s inability to see me as anything but a woeful, pitiable, dying man.
We need to change this stigma. Disability does not equal sadness. And yes, I’m mostly just mad because I didn’t get famous.
Chapter 8
Laughing at Our Nightmare
Sarah nervously adjusted our notes on the makeshift podium (two wooden crates stacked on top of each other) as we waited for the audience to wander in and take their seats. The stage was constructed of hay bales with a wooden board laid atop, which had been made “wheelchair accessible” with another few pieces of plywood angled off the edge. In the field just outside this large event tent there sat a long row of horse-drawn carriages. I took a futile sip of water to wash away the dry anxiety building in my throat.
My business partner (also cousin, best friend, and hair stylist), Sarah, and I had been hired to perform one of our “motivational speeches” at a community festival near Lancaster, Pennsylvania. Normally, this would have been no big deal; our speaking careers were taking off, and we were performing several engagements every week, ranging from corporate retreats to elementary school assemblies. However, an important detail had been glazed over during the booking process for this speech, which was why we now sat in silent panic up there on the janky stage. As it turned out, we were speaking at a conservative Mennonite community festival, attended solely by devout followers of the Mennonite lifestyle and faith. Our audience, wearing traditional clothing and speaking Pennsylvania Dutch, was about to hear a dick-joke-laden presentation with a heavy emphasis on neuroscience and potty humor. A man in the front row stroked his beard and stared perplexedly at my wheelchair, waiting for us to begin. Next to him, his son pressed his nose into a Bible.
The speech began and I made a game-time decision to cut my planned opening bit that ended with the punch line, “and she said … turn down for what?” It was safe to assume the audience would not understand my reference to the popular DJ Snake song featuring Lil Jon. From there, the afternoon went downhill in a hurry. As we progressed through the speech, it seemed like every other joke alienated or offended the crowd before us—“We took I-78 to get here, which was super fun for my neck muscles since Sarah drives like someone who is actively giving birth.” The awkward silence was palpable by about three minutes into our speech. If you’ve ever had the opportunity to bungle a public speaking performance, you’ll know the feeling of warm embarrassment that rose into our cheeks as we realized there was not going to be a dramatic recovery.
Cutting our losses, Sarah and I adjusted and began skipping entire segments that would obviously not go over well, like the part where we examine the details of a portable urinal advertisement in excruciating detail. The whole affair reached a cringing climax at the end of our hastened performance. During my closing monologue—an emotional, passionate argument for finding beauty and humor in even the most challenging situations, like a severe muscle-wasting disease—a man in the audience stood and interrupted me to share that if I’d only accept Jesus into my heart, I’d have no reason to fear death. We packed our things and left as quickly as we could.
While this experience was shocking, it was not the first time Sarah and I had been surprised onstage, and it certainly would not be the last. When Sarah and I decided to take our nonprofit organization, Laughing at My Nightmare, Inc., from a fun, part-time side project and turn it into our professional careers, we did not know what to expect. From the moment of our company’s creation in 2012, up until 2014, we’d seen a decent amount of success. In that time, through putting on random events like Halloween parties and open-mic nights, our company was able to donate a total of $17,000 to muscular dystrophy research. We were proud of this accomplishment, considering we’d created our charity with exactly zero idea of how to start or manage a charity, but after our first three years it felt like we were only scratching the surface of our potential. As 2014 drew to a close and my first book (read it, read it, read it!) was just days away from being released into the world, Sarah and I decided to meet on a cold October evening to discuss the future of Laughing at My Nightmare, Inc. This meeting turned out to be quite pivotal in the growth and success of our small company.
Sarah and I enjoying some sunshine before giving a keynote presentation near Seattle.
Two brand new ideas emerged as we sipped our mango cherrytips pesto passiondoodle tea (or whatever we ordered from Starbucks that night). First, we discussed the possibility of taking our school speaking program to the next level. Until this point, Sarah and I had actually never performed a speech together. Relying on a rotating crew of random volunteers, I had been able to book a few engagements in those first few years, but the talk I was using was poorly written (by me), and I definitely was not performing enough speeches to earn any sort of substantial funds for our nonprofit. On this night, however, we were invigorated by the idea of writing a new speech starring the two of us and dedicating ourselves to developing our presentation into a marketable service.
Okay, great, awesome, but there was an elephant sitting at the table with us. Sarah was working full-time in a sales position for another company. We could not conceive of a situation where we’d be able to expand our speaking program while Sarah was busy from 9 a.m. to 5 p.m. every day.
“I could quit,” she said. She was not laughing. “Things could really take off when your book comes out. We know what we need to do to be successful—to make this our career—we just haven’t pulled the trigger yet.”
“What if we fail, though?” I asked. “The idea of speaking with you at a million schools a year sounds amazing, that’s like my dream, to be doing that full-time, but if we fail, what will you do?”
“Worst-case scenario, I’ll just get another job. LAMN is never going to become the big, awesome company that we want it to be if we don’t go all in. I think now is the time.”
The gears of my brain were spinning. “I have another idea!” I said. Sarah gave me a look to remind me we were in public and I was getting noisy. But my enthusiasm could not be contained. “What if,” I said, “instead of giving all our money to fund research, we used it to provide equipment, like ramps and shit, to people living with muscular dystrophy? Research is important, but every nonprofit on Earth funds research. We could make a real, immediate, tangible impact on people’s l
ives in an incredible way.”
Sarah responded in three words: “Hell fucking yes.”
Just like that, the wheels were set in motion for the rebirth of Laughing at My Nightmare, Inc., which officially began when Sarah left her job and joined me full-time in January 2015. Our new vision was simple: sell our service as professional motivational speakers as far and wide as physically manageable, and use the funds we earned to provide essential equipment to people living with muscular dystrophy.
Sarah turned out to be correct about my book opening up new opportunities. In fact, almost immediately after she joined the company full-time, the speaking requests started to pour in. As tens of thousands of book readers flocked to our website, they were greeted by a shiny new page advertising our availability as public speakers. It worked like a charm. Boston University called us: Can you speak for a student event? The University of Connecticut emailed: We’re having an event and we need a speaker. The University of Vermont. Virginia Tech. Plus dozens of elementary, middle, and high schools up and down the east coast.
Those early days were exhilarating, but rife with the unavoidable mishaps of two young people who were doing their best to “fake it until we made it.” We thought, for instance, that having the text of our presentation printed verbatim would give us confidence onstage. But when an unfortunate draft from an opened door sent our precious notes fluttering across the floor, and an auditorium full of 250 fourth graders sat in fidgeting, awkward silence while we stammered through the rest of our talk, we learned the valuable lesson of overlearning our presentation so that we could perform it with our eyes closed.
Sarah, me, and Paul, our favorite lawyer ever. We owe so much of our success to Paul for selflessly and passionately helping us turn our idea for a nonprofit into reality.
One of our speaking highlights came just a few months later, when we were asked to give the opening keynote at a convocation for one thousand members of a nearby school district. The auditorium was massive, and the spotlight so unexpectedly blinding that for a moment I had trouble steering my wheelchair to the correct spot onstage. I managed to take my place and launch into my opening joke without plummeting to my death off the front of the stage, and better yet, the audience ate it up. Sarah, feeding off the energy in the room, improvised another joke about my awful haircut and the audience roared. We were doing it!
Back at the “office” (my house), we faced another learning curve in managing the behind-the-scenes functions of our charity. In order for LAMN to remain our full-time jobs, we basically needed to multiply our revenue by twenty. Tell any business owner to increase her revenue by 2,000 percent in one year and she’d probably quit on the spot. All at once, we had to be content creators, grant writers, donor-relationship specialists, salespeople, brand managers, fundraisers, organizational experts (still learning this one today), bookkeepers, event planners, marketing wizards, and big-picture decision makers!
My favorite “learning experience” was when I had the brilliant idea of the Laughing at My Nightmare Summer Swear Jar campaign. Trying to come up with edgy, unique ways to raise funds for our mission, I sent out a letter to fifty local business owners and managers inviting them to purchase a Swear Jar from LAMN. Every time you catch an employee swearing, they must deposit a twenty-five-cent donation into the jar. I maintain that this idea was revolutionary, a truly groundbreaking example of savvy fund-raising, but in all my excitement, I didn’t think twice about titling our outreach letter, in large, bold print: “What the Fuck Is the Laughing at My Nightmare Swear Jar?”
We did not receive any responses. A few weeks later, a manager from a local bank offered to take us out to lunch to discuss our work and our mission. Sarah and I celebrated. Real, legitimate businesspeople were taking us seriously. Lunch went well, and I didn’t say anything too embarrassing, when suddenly, at the very end, the bank manager put on what can only be described as his “dad voice” and sternly reprimanded us for sending out corporate mailings that contained the F-bomb—his bank had apparently been on my mailing list, and he made it very clear that my brilliant idea was not just ill-advised, but potentially damaging to our relationship with the community.
Thankfully, Sarah and I are quick on the uptake, and we settled into our new positions faster than I anticipated. Our speeches and online positivity content were booming. Every day we gained dozens of new fans and donors who wanted to support our mission. To launch the equipment-granting initiative, we gave a customized adaptive bed to a high school student living with muscular dystrophy. Once it had been delivered, the family graciously invited us to visit and see firsthand how the bed was helping the young girl regain independence. Using the handheld remote to sit herself up in bed, our recipient reported, “Being able to do homework comfortably in my bed is great, but the best part is having the ability to stay up and chat with my friends into the night.”
In the three years that have passed since Sarah joined full-time, we’ve performed over 150 speaking engagements, from the lovely Mennonite festival, to Harvard, to biotech companies in San Francisco, to children battling life-threatening conditions in New York City. At the same time, we’ve raised and provided over $85,000 in equipment to people living with muscular dystrophy, from ramps to breathing devices to specialized computers. In a few months, we’ll be providing a $50,000 grant to purchase a wheelchair-accessible vehicle for someone in need.
Starting out, we hardly knew what it meant to be a nonprofit organization. The secret was to surround ourselves with people who did know what they were doing, to learn from them and from the mistakes we made along the way. People often ask us “What’s next?” Our answer is always the same: We are just going to keep having fun, taking risks, and finding new ways to help people living with muscular dystrophy get the items they need to thrive.
Chapter 9
Jerika
In the summer of 2016, a tragic story went viral for all the wrong reasons. After it ran its fleeting course and the hoopla fizzled out, a child was dead and the disabled community had been dealt a significant blow.
The subject of the story was a fourteen-year-old girl from Appleton, Wisconsin, named Jerika Bolen. The sensational title, “Terminally Ill Wisconsin Teen Schedules Her Death and One ‘Last Dance,’” caught my eye while I was surfing Facebook. I clicked the article and expected to read a story about someone with late-stage cancer or some such disease going all out for the end of their life. What I saw instead shocked me. Jerika and I shared the same diagnosis—spinal muscular atrophy type II.
Jerika was voluntarily choosing to end her life, and as I read further into the article, I realized with horror that the author was celebrating her for this decision. Not only that, but as I scanned other major media outlets, it became clear that journalists were in the midst of a fucking field day, battling each other to write the most heart-wrenching story imaginable. They called her a hero. They called her an inspiration. They put her name in lights and glorified her “wise” and “mature” nature that led her to the choice to commit suicide. All of these stories ran with a link to a crowdfunding campaign for Jerika’s “Last Dance.” Jerika wanted to attend a make-believe “prom” before she died, so the media did everything it could to urge readers to donate to make her dream come true.
Here’s the basic story as it was being reported: Jerika lived with immense daily pain, and her mother said that they had exhausted all of her pain-management options. There was video footage of Jerika and her mother sitting in their living room with a reporter, discussing the reasons that Jerika was choosing to end her life. The pain made daily life so miserable that suicide was the only option. These interview clips were confusingly followed by shots of Jerika playing video games, smiling, laughing, and telling the reporter about her favorite hobbies, like watching YouTube and chatting with friends—all the things your average teenager loves. She appeared to have caregivers and family members who loved her and provided top-quality care. If her daily life was misery, the video footage and
sound bites certainly didn’t make that evident.
Writers completely glossed over the discrepancy between Jerika’s seemingly—and self-reported!—good life and her desire to die. No one mentioned the fact that she was a child and that the whole situation was riddled with ethical controversy. Should Jerika, as a young teenager, be legally permitted to end her life? Should her mother be approving such a drastic measure? Which doctors were advising this decision? Instead, the media painted a grossly simplified picture: SMA is such a brutally painful and debilitating form of existence that suicide is not only logical, but commendable.
My God, did the public eat up that story. The comment sections were flooded with praise, well wishes, and prayers for her as she made this “journey to heaven.” The GoFundMe page that was created for Jerika to have a special prom brought in over $36,000 as the story went viral. By ignoring all the confusing ethical questions that surrounded Jerika’s decision to die, the media kept the focus on the feel-good idea of giving Jerika an amazing prom. Hundreds of friends, family, and strangers showed up to dance and cheer alongside her as she was crowned Prom Queen on the big night.
Meanwhile, much of the disability community, especially the SMA community, sat flabbergasted at their computer screens, wondering if this was all a big joke. Because the thing was, SMA (and disability in general) was being dangerously misrepresented in most of the stories that were circulating.
Many of the articles claimed that SMA Type II kills people “before they reach adolescence.” This is not true. With advances in medical technology, we are living into our forties and fifties and sixties, with families and careers and passions. Did the media mention this? Nope! They used her disease as further support for her suicide.
More articles stated that SMA Type II causes “debilitating pain.” Again, not even close to true. In Jerika’s specific case, it seems as if her (highly uncommon) thirty-eight surgeries in fourteen years were the cause of her immense pain. On average, people with SMA Type II do not live with severe daily pain. Did the media take the time to highlight this peculiarity? Nope! And the effect of that omission was that readers were unaware that this case was unusual, causing them to further celebrate her choice to die rather than question it.
