by Shane Burcaw
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Table of Contents
About the Author
Copyright Page
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To Squirms, for wiping my poopy butt and still wanting to cuddle after
Introduction
Look, I get it. Normally, I don’t read introductions either, but this one is important, and I’m not just saying that because I wrote it. (Yes I am.)
There are some things you should know about me that will make your reading of this book more enjoyable.
First of all, I have a disease. The disease, which I was born with, is called spinal muscular atrophy. It causes my muscles to waste away as I get older, so I was never able to walk or even crawl. I’ve used a fancy schmancy electric wheelchair since the age of two, and as of writing this at the age of twenty-five, I’m starting to lose more important muscle function, like my abilities to breathe and swallow and speak.
Fun, right?
There’s a whole lot more about my life and the intricacies of my disease in my first book, Laughing at My Nightmare. (Wow, what a dick, plugging another book he wrote on page one!) You really should read it, but I’ll also give you some fast facts here that will illuminate my life history for you. I suppose a better writer would find a clever way to reveal this necessary information seamlessly within the actual essays, so that the book could truly stand alone without need for the reading of other texts, but I am not a better writer. I am merely a young man with some funny stories to tell and an annoying penchant for sarcasm. Perhaps with age I’ll develop some writing chops, in addition to the lovely muscle deterioration that’s in store for me.
My editor is going to love this introduction. First I try to peddle another book to you, and then I tell you I’m a shitty writer. Brilliant.
Let’s see, what do you need to know?
I need help with almost every physical activity, from getting out of bed to showering to picking my nose. I’ve always relied on my friends and family to help me with these things, and they have always been there to help. They are phenomenal human beings. When I began writing this book, I lived with three of them: my parents—Jon and Sue—and my younger brother, Andrew. By the time I finished the manuscript, I was living a thousand miles away from them with my girlfriend, Hannah. More on that later.
Throughout a good chunk of my life, I’ve been trying to convince people that I’m “normal.” My physique has been twisted and bent by my disease, like a plastic action figure melting in a fireplace, so from an early age, people have treated me like I’m a rolling tragedy. Strangers speak slowly to me. They assume I have no friends, no social capacity, no brain, really. People are often inspired by the fact that I’m shopping in the grocery store, as if just being outside of my house is a commendable activity worthy of praise.
In my childhood and teen years, this bothered me to no end, but it felt like an unfixable problem, so I started using jokes to avoid the issue. Humor became my coping mechanism, my solution. By cracking a joke, I could at least ease the awkward tension in most social situations, allowing kids and adults alike to see that I wasn’t some precious creature that needed to be handled cautiously.
In this way, I made a great group of friends who learned to see past my wheelchair.
I played sports. I had crushes and, later on, love and intimacy. (Don’t worry, there’s more on that later, too.) I got in trouble. I got hurt. I went to college.
Mom, Dad, Hannah, me, Andrew, and his girlfriend, Laura, getting WILD on New Year’s Eve.
In college, something unexpected happened. On a whim, I started a blog called Laughing at My Nightmare, and it took off into internet glory. Almost overnight (at least that’s what it felt like), hundreds of thousands of people around the world wanted to read about my life and the ridiculous shit I’ve been through. In a way, all I was doing on my blog was what I had been doing my whole life: telling jokes to help the world understand me. People connected with my message of using humor to overcome hardship, and as enthusiasm for my story continued to grow, my cousin Sarah and I decided to start a nonprofit organization to take that message to the next level. That nonprofit, also called Laughing at My Nightmare, grew exponentially and became my full-time job after college. Today, we have a year-round speaking schedule, teaching audiences across the country the scientifically proven benefits of positivity and humor. I love it, and what’s even cooler is that our organization also provides medical and adaptive equipment to individuals living with muscular dystrophy. We’ve donated over $80,000 in vital equipment since we began that program! Sarah and I are supported in this venture by an outstanding group of board members and employees who help us make our wild dreams a reality every day. The five years since starting that blog have been nothing short of surreal.
What else?
I have two cats, Oreo and Roxy, whom I mentioned in the opening of my last memoir. They are both still alive, unfortunately.
As always, I hope for nothing more than to make you laugh.
Chapter 1
Eighth-Grade Pee Fiasco
The human body is disgusting.
For most, it’s easy to hide our natural nastiness—secretly scraping the brown gunk out of our ears in the privacy of the shower, irrigating our nasal cavities with the sink on full blast to mask the gagging, discreetly allowing a six-second methane death bomb to squeak its way out of our sphincts while we sing Shania Twain and clip our toenails (except, in my case, for the little gray one that curled up and died a few years ago).
To be organic is to decompose, so while we may be able to mostly hide these embarrassing moments, you can know with certainty that absolutely everyone is experiencing the same things. Go ahead and imagine your mom farting in the shower now. (And you thought I had matured a little since the last book … guess not!)
When you have a disease like mine, your ability to hide the nastier side of being human is greatly compromised. For instance, I can’t hold a tissue to my nose to blow it, so if it starts running, or if I’ve got a meaty cliff-hanger dangling on the outer rim for all to see, I’m stuck until I ask someone to help me, which means allowing another person into that vulnerable realm of my being.
Growing up, a majority of my care was handled by my parents. They were the ones dressing me, showering me, bathrooming me, and generally making sure I didn’t smell like garbage on a daily basis. Even though there were moments in childhood when I resented needing their help (e.g., when I had to go home at 11 p.m. from my first Big-Kid Sleepover because I had accidentally pooped in my pants), for the most part, I was comfortable with their care. We had a routine, and the daily repetition felt normal.
Elementary school brought with it the shocking realization that I was expected to allow people other than my parents to help me with these private aspects of my care.
Before starting first grade, I went in to meet my new teachers. Their classrooms were colorful and bright. The teachers were friendly. They used words like “recess” and “snack time” and
“computer lab” that captivated my imagination. School was going to be badass.
It was a great visit, and then Mom dropped the bomb and ruined my entire day in a single sentence: “Let’s go meet the nurse now so we can teach her how to help you go potty.”
Excuse me? Why would I need to potty at school? That was an activity strictly reserved for the upstairs bathroom at home, with the door closed so that nobody ever found out I peed into a red plastic pee bottle rather than the toilet. If people found out about that, they’d think I was weird, and if they thought I was weird, they wouldn’t want to talk to me or be my friend. No thank you, Mother, we can skip the nurse’s office.
I stopped my chair in the middle of the hallway and turned it off. My undeveloped mind expressed my opposition in a series of whiny moans.
“Stop, Shane. You can’t hold it all day. It’s unhealthy.” And she continued to the nurse’s office.
The nurse was a young blond-haired woman who could’ve just as easily been an angel. I didn’t understand why, but as Mom lifted me onto the changing table in the nurse’s private bathroom with the blue-eyed goddess closely watching her every move, it felt like my wiener rocketed right up inside my body. My face burned with embarrassment as Mom pulled off my undies and demonstrated how to angle the pee jar so that my dick went in correctly.
I wanted to evaporate, or die.
“Just make sure you wiggle the last drips off before you pull the jar away,” said my mom. “We don’t want any dribbles!”
The nurse put on a patronizing baby-talk voice: “Easy peasy. We are going to become best buddies, aren’t we, Shane?”
Shockingly, we never became best buddies. In fact, I didn’t use the bathroom once in all five years of elementary school, much to the dismay of my parents, teachers, and classroom aides. During those five years, I perfected the art of convincing people that I just didn’t need to pee, while on the inside, I was tormented by an aching bladder and the anxiety of not wanting anyone but my parents to help me pee.
A newborn pee jar must be breastfed until it reaches maturity.
My refusal to urinate anywhere but in the privacy of my home was an attempt to maintain a perception of normality in the eyes of my peers. My disease forced me to do so many activities in a slightly altered way—the teacher putting on my jacket, the physical therapists pulling me out of class twice a week, the aide attaching the tray I used on my wheelchair in place of a regular desk—that, even as a kid, I knew my classmates noticed my adaptations. Back then, you could be outcast simply for wearing the wrong shirt, so it seemed pretty logical to me that the ways I was different were very bad. I desperately needed to minimize all of my oddities if I had any hope of being accepted into the social circles at school. So I held my pee and let kids wonder how (or if) I went, rather than marching down to the nurse’s office three times a day and further confirming their observations of my weirdness.
It wasn’t until much later in life that my pee protocol finally backfired.
I was in eighth grade at East Hills Middle School. It was the end of the school year, and my entire class was getting excited about the highly anticipated class trip, which was happening in a few days. We were going on an all-day field trip to the Baltimore Inner Harbor, and judging by the lunchtime chatter in the cafeteria, I gathered that this would probably be the greatest day of my life.
There were a few scheduled activities, like the aquarium and an IMAX movie, but we would also have over three hours of free time to explore the harbor on our own. To a group of fourteen-year-old boys and girls, this was equivalent to telling us, “Go do bad things on a school day and don’t worry about consequences.” We were stoked.
Several days before the trip, my teacher stopped me after class to let me know that the school nurse was coming along on the trip and could help me pee since we’d be away until late at night. I thanked him for making that arrangement.
In my head, I immediately dismissed the idea. At that point in my life, I was only good at two things: not walking, and holding my pee. I resolved to hold it for the duration of the trip instead of facing the awkwardness of asking for help on what was supposed to be a day of nonstop revelry and debauchery.
The morning of the trip arrived, and in typical idiot-Shane fashion, I forgot about my plan and enjoyed two cups of coffee with my breakfast.
Dad dropped me off at the middle school around 6:30 a.m., and all the students were loaded onto a luxurious Greyhound bus. (The fact that it had seven-inch televisions that played grainy VHS tapes was the only reason we thought the bus was fancy, but that was enough for us.) The driver pushed aside a row of the reclining chairs to make a space for my wheelchair.
On the three-hour drive to Baltimore, I began to feel that familiar pressure in my bladder, the one that I’d gotten pretty good at ignoring. We carried on.
When we arrived in Baltimore, having watched Night at the Museum one and a half times, I was kicking myself about the coffee. The nurse had subtly approached me during the ride to remind me just to “holler” when I needed to pee that day. I thanked her, and in my head told her to fuck off. I was angry that she had even offered to help me in front of my friends. At this point, my closer friends knew how I went to the bathroom, but it remained an aspect of my care that made me uncomfortable. I could easily crack jokes about how I pee in a jar, but the thought of asking anyone but my parents to help with this private matter embarrassed me immensely.
Our first activity was the aquarium, where there tends to be a lot of water. Not the best environment for someone working to ignore his growing need to pee, but I did my best to enjoy the experience while silently cursing all fish for not being able to breathe air.
Next, we went to lunch with the chaperones—the Hooters was strictly off-limits, although as soon as free time arrived later in the day, half the class went directly to Hooters like they were giving out free money. My friends and I ate lunch at a small diner. I ordered a large iced tea and thought nothing of drinking most of it. My confidence was stellar.
The IMAX movie was about the plight of the American beaver, a poignant film that contained almost nothing but underwater footage. Lovely. It was at this point, mid-afternoon, when I began to question if I was going to make it. But the way I saw it, I didn’t have a choice. Asking the nurse for help would be a clear demonstration of weirdness to my friends, and I didn’t know if I could ever recover from such a blunder. Surely they would never see me the same way again.
Maybe if I don’t wash my hair, kids will like me.
The day progressed with painful slowness. Free time turned out to be much less exciting than we expected—our options basically were the ESPN Zone or getting murdered in Camden Yards. In hindsight, it was a terrible place for a field trip. By the evening, I just wanted to be near the bus when it was time to leave so that we could get on the road as quickly as possible.
After about a hundred years, it was getting dark and finally time to leave. The bus ride home was an exercise in pain management and endurance. My bladder burned. It actually felt hot inside of me. My face and hands and armpits and inner thighs were sweating (probably my body attempting to excrete whatever unnecessary liquid it contained to make room for more urine). I was on the verge of passing out. Tunnel vision. I repeated to myself: “Holditholditholditholdit.”
The bus driver must’ve known I was being an idiot, because he made sure to hit every single pothole on the drive home. The bouncing added a nice touch to my already delightful situation.
Despite all this, I somehow made it back to the school, but as we pulled into the parking lot and hurdled over the first speed bump, it happened.
I lost control and released my entire bladder into my pants right there on the bus. Once the floodgates had opened, it would’ve been suicide to try to close them. There was nothing I could do. It was the most terrifying, and embarrassing, and … physically satisfying feeling I’ve ever experienced. I kid you not: If you haven’t felt the release of peeing afte
r an all-day hold, try it just once. It’s such a euphoric feeling.
Obviously, I was mortified. And wet—like, dripping wet. Like sitting in a warm puddle wet. Like just got out of the pool wet. So as we pulled up to the school, I did my best to avoid all interaction and depart from the bus with haste.
A friend approached me in the parking lot to say goodbye. He looked at my legs, confused, and asked why my jeans were soaking wet.
“Oh, I spilled a bottle of water on myself in the bus. Bye!”
When I found my dad waiting for me in the parking lot, I had a breakdown as I explained what happened. I suddenly hated myself for being so embarrassed about asking for help. Once my dad had finished laughing (which made me laugh), we got in the van and went home. He put me right into the bathtub and hosed me down to get rid of the Baltimore-sewer scent that wafted from my crotch. I was humiliated, but at least we were laughing about it. After all, what else could I do?
In bed that night, I replayed the day in my mind, checking and double-checking my memory to make sure none of my friends had figured out the embarrassing accident I had. It occurred to me that them knowing about the accident was way more embarrassing than them seeing me ask the nurse for help peeing. Perhaps it was time to try something new.
The next day I decided that enjoying an iced tea with my lunch was more important than my anxiety over what my friends might think about me peeing in the nurse’s office.
And later that day, I took a risk and whispered to my friend Mike, “Wanna help me go to the nurse?” In retrospect, it wasn’t a very big risk. I mean, what kid is going to deny a genuine excuse to miss class time?
Along the way I told Mike the nurse was going to help me pee. He asked if she was going to see my dick. I said yes, but only because it’s difficult not to see it when you’re as large as I am. He laughed, and just like that it was over. For eight years I had been avoiding this moment for fear of being rejected, and in the end it amounted to little more than a stupid dick joke.
