by Shane Burcaw
On the other hand, I was paid a buttload of money to write a book about it, so I guess I win?
Chapter 12
Deadly Ducks and Cheese Curds
Lake Harriet, one of the dozens of picturesque lakes that dimple the suburbs of southern Minneapolis, is circled by a busy walking and biking path that leads to a popular lakeside restaurant called Bread & Pickle. The area is frequented by an odd assortment of generic families of four pretending to enjoy Family Activity Time, and mustached hipsters wearing child-size cycling shorts and backpacks with nothing in them. The shady walking path is lined with benches where couples rest and enjoy the calm scene of sailboats gliding across sunny water. Three years ago, if you had told me that Lake Harriet, located one thousand miles away from my home in Pennsylvania, would someday be one of my favorite places to spend an afternoon, I would have laughingly dismissed you as absurd.
The course of my life was drastically altered by an email from a girl named Hannah in March of 2016. She was a college student (and a varsity swimmer) at a prestigious liberal arts school in Minnesota and, during a late-night YouTube binge, Hannah had come across the My Last Days documentary about my life—the one where I get a tattoo and talk about my penis way too much. In an effort to further avoid her growing list of assignments and responsibilities, Hannah did some online stalking and got my email address (which isn’t too hard to find) and sent me a message introducing herself. As I read it, I was filled with a strong compulsion to know everything about her. She complimented my sense of humor and talked about some of the interests that we have in common, like swimming, traveling, and playing with puppies. She made fun of herself for being a creepy internet stranger and sent a link to her Facebook page so that I could see for myself that she wasn’t an old man.
But what stood out about her message to me was that at no point did she call me inspiring or commend me for living with such a horrid disease. In fact, Hannah didn’t even mention my wheelchair or my disability at all! In about eighteen sentences, what she did do was thoroughly captivate me with her mind and her personality. When I looked at her Facebook page and discovered that she was a tall, stunningly beautiful goddess with deep blue eyes and the sculpted body of an Olympic swimmer, it was like icing upon a delicious cake that didn’t even need icing in the first place.
I emailed her back right away, and we struck up a conversation. Emailing very quickly led to texting, which very quickly led to FaceTiming, which very quickly led to shifting our daily lives around to make room for more FaceTiming. Those first few weeks felt effortless and exciting as we learned everything we could about each other. I had communicated with other girls online, but never before had it taken such effort for me to say goodbye and hang up at night. I could see that I was falling in love.
Hours of blissful FaceTiming very quickly became not nearly enough, so we eagerly booked the first of many flights for Hannah to visit in person. When I held her hand a few weeks later at an empty hibachi restaurant in Philadelphia, I realized I never wanted to leave her side. We lay awake that first night enjoying the profound difference between a computer screen and actually touching. In the morning, with my stomach in my throat, I asked her to be my girlfriend. She said yes, and we set off for a jam-packed day of activities that included a picnic in a state park because I’m the cutest boyfriend. Saying goodbye in the airport at the end of that first week was harder than all the previous FaceTime goodbyes combined. I’m man enough to say we both cried. That night, over FaceTime once again, we booked a flight for visit number two.
Early on in our relationship, I went to Minnesota to spend time with Hannah and her family. Hannah was excited to show me her home, and one of the activities we were looking forward to was a romantic stroll on the walking path around Lake Harriet, followed by a meal at the lakeside cafe. According to Hannah, Bread & Pickle served superb cheese curds, which I was dying to try while in the Midwest.
When we awoke on the morning of our lake date, the sun was shining in the bedroom window with almost artificial perfection, and Hannah was miraculously able to find a clean pair of boxers in my suitcase. It was shaping up to be a great day.
Hannah helped dress me in my sexiest lake-appropriate attire: tight salmon chino shorts and a classy button-up with palm trees on it (purchased from the children’s section of Target). She carried me downstairs and put me in my wheelchair. Once there, I drove to the bathroom where I instructed her with meticulous detail how to style my disheveled nighttime hair.
“It’s really important that you look handsome for all the women that you need to be impressing today,” she said sarcastically.
When we arrived at the lake later that day, we discovered that because of construction, handicap access to the walking path had been temporarily moved about ninety-seven miles down the road. Our romantic walk would have to take place in the street as we searched for another wheelchair curb cut. Thankfully, we still weren’t far from the edge of the lake, so we quickly forgot about the annoyance and enjoyed the view.
Not long into our walk, we passed a family dragging an unenthused toddler toward the duck feeding area. As the child caught sight of me, his jaw dropped as if he’d seen an elephant stepping on cars and blowing fireworks out of its butt. He stopped walking, shook his hand out of his mother’s grasp, pointed at me, and began to shout, “Look, Mom! It’s a baby! It’s a baby! It’s a baby!”
We smiled and did our best to ignore his shrieking, which was tough considering we were close enough to reach out and touch them as we walked past. Meanwhile, the mother was frantically trying to suffocate her child into submission.
Once we were clear of the family, the silence between Hannah and I was palpable while we waited to see how the other one was going to handle what had just happened.
“I hope a duck eats him in front of his parents,” I said, and we both began to laugh.
When I was a kid, just a few years older than the shrieking toddler, I often received this same kind of unwanted attention. My classmates in elementary school zeroed in on my wheelchair specifically, since many of them had never seen a device like it before. Kids asked, “Why do you have that?” or “Where did you get that?” or “Why can’t you get out of that?”
These questions cut deep, not because I was ashamed of the chair, but because I was aware that other kids viewed me and my chair as different. I didn’t want to be different. The different kids didn’t get invited to sleepovers. The different kids played alone on the playground.
My sense of humor was thus born out of necessity, as a way to overcome that first social barrier created by my wheelchair.
“Oh, I bought it at Kmart. I don’t actually need it, but I get to leave class early for lunch, so I use it.” Many kids didn’t quite understand sarcasm yet, but at least they heard me talking sensibly and saw me laughing, and so they began to learn that Shane and His Chair were not off-limits. We could interact and it was cool.
In middle school, my body stopped growing as my muscles began to deteriorate: one of the lovely characteristics of my disease. Unfortunately, my head never got that memo, so as my head continued to develop normally, I started to resemble a caricature drawing. Now I had to contend with the wheelchair plus a disproportionately large head for the tiny, atrophied body.
Middle school was a rough time, and it taught me the tough lesson that I was responsible for making others feel comfortable around my strangeness. The big head thing was an unspoken insecurity of mine for many years, which further solidified my reliance on humor as a diversionary tactic. If I was out with a group of friends and someone asked why I had such a big head, it was much more socially beneficial for me to say, “My parents dropped me a lot,” than to show my true embarrassment. Humor helped me cope.
In high school, my weight plummeted as my body lost the ability to eat a sufficient number of calories in a day. While everyone around me was hitting puberty hyperdrive and rocketing upward and outward, I fluctuated between fifty to sixty pounds for most of
high school. My arms were twigs. My legs looked skeletal. It was bordering on grotesque, and that’s my perspective, so I can’t imagine what other people thought.
Again (I hope you’re seeing a theme here), humor was my solution. In any social situation, I fully expected strangers to react with aversion to my physical appearance, which now included a trifecta of things that made me “different”—wheelchair, big head, skinny limbs—so I learned how to disarm their awkwardness with jokes and self-deprecation.
“My parents don’t feed me because they wanted a kid who could walk.”
As I got older, my humor took on a shocking quality in order to take the attention off my appearance. I find that humor happens when we are confronted with the unexpected, and so the unexpected became my regular mode of expression.
Now in my twenties, my humor can get pretty dark (hence the “kid getting eaten by ducks” joke), but luckily my diversionary humor had worked once again, so Hannah and I were both still cheerful and enjoying the day when we arrived at the cafe on the edge of Lake Harriet. We navigated through the courtyard swarming with people and joined the long line to order our cheese curds. I automatically scanned the adjacent pavilion for a secluded table.
My issues with eating began in eighth grade, when my mouth suddenly stopped working during lunch in the school cafeteria. I was mid-bite on a massive beef burrito when my mouth simply failed to function. I had to spit everything out onto the plastic tray in front of me before I choked. It was like a volcanic explosion of sour cream and cheese and spit. My friends looked at me with shock and disgust. In my embarrassment, I muttered something about choking and tried to laugh it off.
It didn’t go away though, and over the next few months, I found myself repeatedly unable to chew the food in my mouth.
I adapted. By jamming my wrists under my jaw like a wedge, I was able to assist my mouth with the chewing motion. My deformed kangaroo pose worked great for many years, but during that summer at the lake with Hannah, I was beginning to lose the strength for that as well.
I was hoping to find a secluded table so that Hannah could help me eat our cheese curds without awkward stares from nearby tables. To my dismay, no such table was available, so we settled for one right smack-dab in the middle of the main pavilion.
I sheepishly asked Hannah if she would mind holding my arm up while I chewed my food. She, of course, was happy to help. Immediately, almost involuntarily, I began to fire off jokes.
“It’s gonna be dinner and a show for all these people who get to watch the sick boy eat cheese curds,” I said. “They’re probably assuming this is the first time I’ve ever been out of my house. You should move to the other side of the table, make it look like you’re refusing to feed me. Put a fork in my hand and scream, ‘Hold it!’”
Hannah laughed along with me, which was reassuring, but my head was filled with the emotional baggage of my past: of being looked at like a diseased alien creature; of being avoided on the playground; of being spoken to slowly; of being ignored and left out; of being treated differently, simply because I look different. Half of me expected her to stand up and run away at any moment.
“You know I don’t think this is weird, right?” Hannah’s voice caught me off guard and pulled me out of my deluge of painful thoughts. “Helping you chew like this? I don’t care if people are staring. I love helping you.”
Hannah and I enjoying an afternoon by the lake.
I took a deep breath, exhaled, and felt a smile grow across my face. I hadn’t realized it, but the constant facade of humor was downright exhausting. Hearing her tell me I didn’t need to keep up the act just for her was like sinking into a cozy bed at the end of a long day. The rest of the pavilion melted away and all that remained was Hannah, smiling at me, and forking another cheese curd into my mouth.
Chapter 13
The Elevator
In my early twenties, I went through a rough patch where living with my parents began to wear on my nerves. I can’t stress this enough: My discontent really had nothing to do with my parents themselves. My parents are outstanding people who have shown me nothing but love and support throughout my entire life. Since they were my full-time caregivers, our relationship was naturally much closer than what the average twenty-three-year-old shares with his parents, but even outside of the caregiving dynamic, we have always gotten along well as a family. In fact, up to this point, I rarely thought negatively about my situation of living with my parents; it just wasn’t a big deal.
But after I graduated from college, most of my friends got their own apartments, leaving for places like New York City and Philadelphia in search of jobs and excitement. My social media feed became a constant reminder of the adventures they were living, out there in the wild cities, living paycheck to paycheck but having a blast as they learned how to be adults on their own.
My friends’ departure from their childhood nests prompted me to examine my own situation: I was still living with my parents and had no plans for moving out. As soon as I began paying attention to my surroundings, things that never bothered me became extremely frustrating. For instance, I had always adjusted my schedule to compromise with my parents. If I wanted to stay up writing until 3 a.m., but Dad (who puts me in bed) wanted to be in bed by 10 p.m. because he had to get up for work, then we’d discuss it and typically settle on something like 11 p.m. These types of compromises were never an issue. They made sense, and I had no problem giving up a little independence for the people who so gladly cared for me 24–7 for twenty-three years.
But as I entered this new rough patch, the compromises started to anger me. If I wanted to visit my girlfriend until midnight, or if I wanted to have friends over for a party, I should be able to do that. I was an adult with a life and career of my own, but you can’t just do whatever you damn please when you’re living with your parents, especially when they are the ones performing almost every aspect of your daily care from sunup to sundown. Plus, I care about their well-being, so I couldn’t in good conscience stray from the mild lifestyle that we’d negotiated. You’ll recall that my constant need for their assistance created a burden complex in my mind, so I took extra caution not to exploit their obligation to care for me.
Our house itself was also contributing to the problem. We lived in a smallish ranch house. When I began wanting some separation from my parents, I realized how impossible that would be in this house. There was no privacy. Someone talking on the phone in one end of the house could easily be heard at the farthest point away in the other end, even with doors closed. So much for phone sex.
But seriously, more and more often, I found myself going outside to talk to my girlfriend on the phone. When friends came over after 9 p.m., we had to whisper in my bedroom, since my parents were getting settled into bed in their room ten feet away. Needless to say, friends stopped coming over in the evening.
I felt stuck.
Well then move out, you idiot. You’re not the first person with a disability to reach adulthood, and your parents aren’t going to take care of you forever, so what are you waiting for, you privileged little shit?
Unfortunately, it wasn’t that simple. Living on my own meant finding round-the-clock care—someone to get me out of bed and shower me and get me dressed and brush my teeth and help me pee and hand me my laptop and get me food and help me pee again and adjust my positioning because I’m uncomfortable and get me lunch and put my coat on and take me to a meeting and bring me home and get me food and hand me my laptop and do my laundry and take the garbage out and help me poop and wipe my butt and put my feeding tube in and put me in bed and roll me overnight and adjust me in bed when I’m uncomfortable and on and on and on. It’s a lot.
At that time, those duties (and I’ve only named a fraction of the things I might need help with on any typical day) were divided among my parents, my coworkers at Laughing at My Nightmare, my brother when he was home, my friends, and my girlfriend when she was able. It was a beautiful care system.
&
nbsp; But that system wouldn’t transfer to living by myself. I’d need to hire professional caregivers, a common experience for people with disabilities living independently, and caregivers are crazy expensive, especially when they’re needed 24–7. Some rough math for you: even if I was only paying them a paltry $12 an hour, that’s approximately $105,000 for 365 days of care.
But Shane, don’t they have government programs and waivers and such to pay for your caregivers?
Yup! But I had made “too much” money in the writing of my books, so I didn’t qualify for those types of benefits. I imagine a few of you are now grumbling about paying for it myself if I had so much money, but I promise you, the government’s idea of “too much,” and a realistic idea of “too much,” are very different numbers. Sure, I could have blown my entire savings on caregivers for at least a few months. But could I cover rent? I’m not sure. What would happen after the first year when I ran out of money? Even if I did qualify for government assistance, I’d never be able to write another book or advance my career as a writer and nonprofit executive because I’d risk losing those benefits. That felt counterintuitive, and not worth it.
I’m sure there were work-arounds. I’m sure there were options of which I was unaware, but this brings me to the last hurdle in the moving-out dilemma: fear.
I wasn’t ready to be taken care of by strangers yet. Trust is a vital aspect of the caregiving relationship for me, and because of that, I’ve always been cautious about who I let into that role. If I moved out, it would be a never-ending parade of random employees helping with the most intimate parts of my life. In a situation like that, I reasoned, I was only one apathetic employee away from death. I know it’s absurd. I know that caregivers don’t routinely let their patients die, but when contrasted with the level of trust I had in my parents, there was really no contest.
