With his signature wit, twenty-something author, blogger, and entrepreneur Shane Burcaw is back with an essay collection about living a full life in a body that many people perceive as a tragedy. From anecdotes about first introductions where people patted him on the head instead of shaking his hand, to stories of passersby mistaking his able-bodied girlfriend for a nurse, Shane tackles awkward situations and assumptions with humor and grace.
On the surface, these essays are about day-to-day life as a wheelchair user with a degenerative disease, but they are actually about family, love, and coming of age.
Shane Burcaw is one half of the hillarious YouTube duo, Squirmy and Grubs, which he runs with his girlfriend, now fiancee, Hannah Aylward.
|Publisher:||Roaring Brook Press|
|Product dimensions:||5.60(w) x 8.30(h) x 0.90(d)|
|Age Range:||14 - 17 Years|
About the Author
Shane Burcaw has Spinal Muscular Atrophy and a wicked sense of humor. He runs a blog about his experiences and is the founder of a nonprofit organization dedicated to providing adaptive technology to people living with muscular dystrophy. He is the author of Laughing at My Nightmare and the picture book Not So Different. He lives in Minneapolis, Minnesota, with his girlfriend.
Read an Excerpt
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.
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.
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 after 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.
When I came out of the back room of the nurse's office, Mike asked, "Did she suck you off, too?" Today, being the mature and well-adjusted adult that I am, I let everyone help me pee: family, friends, strangers. In fact, if you'd like to try it, just email me and we'll make arrangements.CHAPTER 2
It was Good Friday, a day of somber reflection for millions of Americans. It was cloudy, but unseasonably warm for late March. It was midafternoon. I had the day off, as did my father, who spent his day doing quiet work around the house — laundry, organizing the garage, more laundry.
He came into our dining room, where I was enjoying a refreshing adult beverage and working on this very book. It was a lazy day. On the back patio to my left, a gathering of birds was devouring the seeds my mom had put out for them that morning.
My dad pulled the earphones off my head. "You good if I run over to Brian's to see his new bike?" he asked me.
"Yup," I said, not really listening. At the age of twenty-three, I stayed home alone quite often. Sounds reasonable, right? And yet, people always reacted with surprise when they learned that I wasn't constantly monitored by an able-bodied adult figure.
Take my grandfather, for instance, who thought my mom was joking when she first told him that some days during college I just hung out at the house alone if I didn't have classes. As long as I had my phone and some food within reach, I was perfectly content. As long as I moderated my beverage intake and avoided IMAX films about beavers, I could hold my pee for days, so that was not an issue. Still, my grandfather grumbled that I should have someone with me. In his mind, leaving a person with a disability alone was absurd, since his mind blended all disabilities together into a big jumble of helplessness.
With the right adaptations, I can be just as independent as anyone else, which is really important for me. The constant reliance on other people throughout my life has created in me a fear that I'm a burden. I occasionally feel guilty when asking for help, and the feeling can become pretty intense if I know I'm interrupting someone's schedule or activity by asking for their assistance. I can get irritated if my mom so much as interrupts my Netflix movie to ask how to turn off her Bluetooth, so I can only imagine what my family members must feel when their daily lives are routinely interrupted by my round-the-clock care: lifting me, feeding me, showering me, etc. Because of this burden complex, I look for every possible way to increase my independence and reduce how often I need to involve others in my care. I've been staying home alone since I was about fourteen, and it has never once been an issue.
So my dad left the room to get ready, and I returned to my work.
A few minutes later, I saw a figure walking slowly up the porch toward our back door. What the hell? Nobody uses our back door except me and occasionally my brother, but he was three hours away at college. There was a knock, followed shortly by the doorbell (which we installed years ago so I could get my parents' attention when I was playing outside). I couldn't physically turn my head far enough to see who it was through the glass back door.
"Uh, Dad? Someone is at the back door?" I said, hoping he hadn't left for Brian's yet.
"Who in the world ..." said Dad as he returned to the dining room and opened the back door. "Hey, can I help you?"
The man's voice was old, but gentle. "May I come in?"
My dad hesitated, but then opened the door wider. "Sure, everything okay?"
The man didn't answer, but walked into our dining room, past my dad, and into my field of vision. His steps were slow, almost like he was deliberately taking his time. He stopped a few feet into the room and turned his head to look down at me. He was tall, with sleek white hair and expensive clothing — dress pants, Dockers, plaid button-up, and a black suit jacket.
"Do I know you?" he asked, looking at me with genuine curiosity. My initial thought was that he was one of my blog followers. I've had a few rare occasions where strangers felt it was acceptable to simply drop by my house to meet me. It's not acceptable — it's creepy 100 percent of the time. But his question didn't seem to support that theory. He was truly asking who I was.
Either that, or he was toying with me.
"I'm not sure, do I know you?" I said, trying not to let the bizarre situation influence my voice.
He laughed. Full-out chuckled to himself. Then, suddenly, he stopped and looked directly into my eyes. "No."(Continues…)
Excerpted from "Strangers Assume My Girlfriend Is My Nurse"
Copyright © 2019 Shane Burcaw.
Excerpted by permission of Roaring Brook Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Chapter 1 Eighth-Grade Pee Fiasco 6
Chapter 2 Ron 16
Chapter 3 Locked Out 27
Chapter 4 Road Rage and Rag Dolls 35
Chapter 5 Strangers Assume My Girlfriend Is My Nurse 41
Chapter 6 Buffalo 47
Chapter 7 Reddit 56
Chapter 8 Laughing at Our Nightmare 64
Chapter 9 Jerika 74
Chapter 10 Beaufort 80
Chapter 11 Rant 88
Chapter 12 Deadly Ducks and Cheese Curds 93
Chapter 13 The Elevator 103
Chapter 14 San Francisco 113
Chapter 15 Hannah and Shane Take Manhattan 122
Chapter 16 Adaptation 134
Chapter 17 Your Complete Guide to Shane's Sex Life 141
Chapter 18 Another Bathroom Story 148
Chapter 19 Coughing 152
Chapter 20 If I Could Walk 158
Chapter 21 Spinraza 160
Chapter 22 StankTour 172
Chapter 23 The Move 191
Most Helpful Customer Reviews
Shane Burcaw's new collection of essays continues to follow Shane's adventures as he shares what it's like to live with SMA. He is the successful creator of a non-profit organization that provides specialized equipment for people with disabilities. He is also the host of a blog called Laughing At My Nightmare, and the author of a book by the same name. At age 25 he has accomplished more than most people twice his age. I became a fan of Shane's after reading his first book and then sharing it with my 11th grade English students. They had just read Mitch Albom's TUESDAYS WITH MORRIE in which Albom highlights the positive attitude of his old college professor suffering from ALS. Shane Burcaw shares the same positive attitude and includes just the right amount of irreverence to capture the attention of teen readers. Shane's new book reviews a bit of his previous material, but it mostly picks up where he left off. Many of his new experiences involve the love of his life, Hannah. Their relationship has developed to the point of moving in together in Hannah's hometown in Minnesota. Shane exhibits his laugh out loud brand of humor as he relates road trips to Buffalo and Manhattan, his work with contractors as he has an elevator installed so he can have his own living space in his parents' basement, talk about sex and how things work with a steady girlfriend, and much more. I always feel like I've had a breath of fresh air and a healthy dose of positivity after reading Shane's books. His upbeat attitude and his never flagging determination are an inspiration. (Sorry, Shane. I know you wouldn't like the "inspiration" reference, but it's true.)