by Shane Burcaw
She was beyond panic; she didn’t have the energy for panic. Instead, she melted into a state of resigned terror, like walking through a living nightmare.
We took it one block at a time. Some blocks were better than others. Several times she insisted that she just needed to lie down for a few minutes, and it physically pained me that I couldn’t let her. At one point, her reflection in a glass window scared her enough that we had to stop for me to explain reflections and remind her of our goal of getting back to the room. On another block, she became insatiably thirsty, but her water bottle had seemingly disappeared from my backpack. (It was there.)
We kept onward.
“What should I do with this?” she asked, holding her phone out toward me.
“That’s your phone. You just need to hold it.”
“It’s too heavy.”
My favorite memory was when a severely decrepit woman who had to be at least 106 years old staggered up to Hannah on the sidewalk and leaned into her face.
“May I talk to him?” asked the woman, gesturing at me. Hannah looked at me like legions of bloody demons were massacring thousands of innocent children before her eyes. She had zero ability to process what was happening, but it was scaring her. So when the woman proceeded to grab my arm and scream prayers of healing, all we could do was take off in a new direction, Hannah holding back tears and using my wheelchair as a walking aid.
“I don’t like this. I don’t like this,” she repeated.
We made it back to our room, and I asked Hannah, “What’s the plan?” We’d been practicing her answer the whole way home.
She nailed it: “Get your laptop set up for you before I get in bed.”
She executed the plan perfectly before falling asleep for a solid sixteen hours, only waking once when I roused her from sleep to lift me into bed around midnight.
Our experimentation with edibles was a failure, but as I watched Hannah sleep that night, monitoring the consistent rise and fall of her chest, my concern for her well-being was intensely palpable. Constantly being on the receiving end of care, I was not accustomed to that feeling of “taking care” of someone. So many times I have worried that Hannah was being burdened by my care. When I vocalized those concerns, she always refuted my fears, telling me that her love for me largely overshadowed any feelings of “caring” for me. Not knowing what it felt like to be in her shoes, it was easy for me to dismiss those statements, writing them off as something that she had to say because we were dating and it would be cruel not to say it. However, on the night of Hannah’s epic plunge into edible-induced hysteria, our roles were slightly reversed for a few hours, and it made me realize I’d do anything to keep her safe. Suddenly, it seemed so obvious to me what she had been telling me all along. When you love someone with your whole heart, there’s nothing you won’t do to keep them safe and comfortable. It’s not a sacrifice and it’s not a burden; it’s a natural instinct.
The next morning, while packing up our suitcases for the next leg of the road trip—down to Texas, then Louisiana, Florida, Georgia, and back up to Pennsylvania—Hannah brought up a topic we’d discussed with dreamy eyes many times, but which now felt realistic in a brand-new way. While lifting me into my chair, she said, “We need to live together.”
Chapter 23
The Move
Guess what? That’s exactly what we did. I can barely believe it as I type the words, but I’m writing the last chapter of this book from Minneapolis, Minnesota, where Hannah and I now live together in our own apartment. It’s mid-April and snowing heavily outside, contradicting Hannah’s perpetual insistence that the weather in Minnesota “is actually quite nice.” In a few hours, Hannah will return from a long day of classes. There is chicken thawing on the kitchen counter for the pasta we are cooking tonight, and we plan on watching a few episodes of Criminal Minds before bed. It’s all so adult I could puke. As I watch the snowflakes dance down outside our window, I’m feeling a deep sense of contentedness with the completely unexpected and totally astounding transformation my life has undergone in the last few months.
Several weeks after our big road trip around the United States, Hannah was back at school a million miles away in Minnesota, and our daily life settled back into its normal routine. It was a weekday evening, and I was in my bedroom FaceTiming. Hannah sat at the desk in her dorm room with a towel wrapped around her head, drying her hair after a two-hour swim practice. We were looking at flights for a short weekend visit in about a month, and as exciting as that should have been, the mood was dull and infused with a layer of stress that came from so much time apart.
“Here’s one with no layover, but you’d need to leave on Thursday. Could you do that?” I asked.
Hannah sighed and moved to her bed, propping the laptop on her thighs. “I have no idea, it depends what’s going on in my classes that week, but I won’t know until that week.”
We decided to wait and see, which felt more like agreeing that a visit probably wasn’t going to be feasible. Our moods declined further, and we basically just sat in sulking silence together for a while. Fun night! Eventually, Hannah got up to put on her sleeping clothes, and in an effort to lighten the pressing sadness, I initiated an exaggerated praise of her naked butt as I watched her change.
She was giggling and becoming more interested in the playful striptease that she was performing when suddenly my bedroom door swung open. My mom walked in, unaware of the illicit activity she was interrupting. I must have looked like I was trying to smash an escaping beetle the way I abruptly slammed my mousepad to hang up the FaceTime call before she saw anything. Thankfully, I don’t think she did.
When I called Hannah back a few minutes later, her clothes were back on and the mood had once again plummeted into despair. The weeks and months of time apart stretched out before us like an endlessly bleak desert of loneliness.
I’m not sure what made it happen. Perhaps it was the heavy accumulation of so much longing, but in that darkest of moments, a tiny spark of hope ignited itself and refused to be extinguished.
“What if we moved in together?” Hannah asked.
I laughed half-heartedly. “I mean, yeah, someday, definitely. But you still have two more years of school, plus maybe law school after that.” My unspoken point being this: You certainly can’t move to Pennsylvania right now, and me moving there would require more time, energy, and logistical solutions than we can practically handle with you being in school.
Hannah disagreed. She believed that I could easily move to Minnesota and we could begin our life together, and not only would it be easy, but the ultimate effect would be positive and beneficial for both of us. I’ll admit, at first the idea absolutely terrified me. What felt like hundreds of unanswerable questions clogged up my brain so that I didn’t even know where to begin.
Who will take care of me while Hannah is at classes? Where will we live? Where will I get Spinraza? What happens if Hannah gets hurt or sick or is otherwise unable to tend to me on any given day? Do I need to hire caregivers? Do I have enough money for that? What would happen to Laughing at My Nightmare, Inc? Would I need to switch jobs? Could I support myself just writing? What if Hannah got burned out from my daily care? What if she decided she didn’t like me and didn’t want to live together? I’m quite annoying—it’s not that unlikely. Would her parents see this as a negative thing? Would they allow it? What in the hell would my own parents have to say about it?
For so long, Hannah and I had dreamed about the day that we could say goodbye to our long-distance relationship and move in together. But now that the idea was being discussed as a serious, immediate option, I was forced to face the reality that so many people with SMA have faced before me: The transition from parental/family care to true independence is utterly overwhelming.
Overwhelming, but not impossible. And it was Hannah who helped me see that vital distinction. We began discussing the possibilities, in earnest, and as was always the case in our relationship, the more we put
our minds to the challenges, the easier they seemed to be overcome.
A few days later, while driving home from a Laughing at My Nightmare event with Sarah, my phone buzzed with a text from Hannah. I’d been waiting for it all day. It read, “Took my mom out to dinner and broached the subject of you moving here. It went so well! She offered to help with anything we might need along the way.”
My response did not quite capture the rush of happiness I was feeling. I replied, “Holyshitholyshitholyshit! Is this really happening?!”
Fast-forward a few months. It is March 20, 2018, and I am sitting in my van facing the house where I have spent the vast majority of my life. Surrounding my wheelchair are an impossible number of tightly crammed boxes, as well as lamps, a desk, a bath seat, a toilet chair, feeding tube supplies, breathing machines, and more. Hannah is in the driver’s seat next to me. She’s holding my hand. I’m smiling, half laughing, half sobbing uncontrollably. Andrew is standing on the front porch, waving goodbye. My mom and dad give me a hug and tell me they love me and that they are proud of me.
In the twenty-five years that I’ve been alive, I never fathomed that I’d be in this situation, leaving my parents’ house to move halfway across the country with the girl I love, running a successful nonprofit organization, writing books for a living, and feeling physically and mentally healthier than I’ve ever been. From the earliest days I can remember, my body, society, and the world around me have been feeding me the same message: You are sick and different and your existence is a pity. People are programmed to feel bad for me, knowing nothing about the quality of my life. At times, the outside perception that my life is negative and sad became so powerful that I internalized it and developed harmful beliefs that I was a burden to even the people who love me most.
I’m so in love with her smile in this photo.
It was largely my responsibility to shake off that idea and prove my worth, to show people that I am just as funny, intelligent, sexy, hardworking, adventurous, and successful as anyone else. My friends, family, and girlfriend played a crucial role in helping me achieve a healthy mind-set about society’s misperceptions and my place within it. I owe them more than I can ever give them.
But as Hannah backs up the van and starts down the road, I am not thinking about society or my disability or being a burden. I’m thinking about driving up to our new apartment for the first time, and how amazing it’s going to feel to fall asleep next to Hannah without a countdown of days together in the back of my mind. I’m thinking about how the hell we are going to shower me if the new bathtub is too small for my specialized seat. Maybe we can lay me in the sink? I’m thinking about writing more and reading more and traveling more. I’m thinking about whether it’s too early to let out a small fart or if that’s going to set a bad precedent for the next eighteen hours of driving.
I’m thinking about my brother and … nope, damnit, crying again. I’m thinking about the speaking engagement Sarah and I performed in North Carolina last week. Our company is still growing tremendously, and I’m thinking about the new programs we are working on to adjust to me living in Minnesota. Wow, Minnesota. Minnesota. I’m moving to Minnesota. I squeeze Hannah’s hand a little tighter and she notices. Is that the Spinraza kicking in?
What happens from here is unknown. Life is strange and full of unexpected surprises, so I’m just going to close my eyes, enjoy the sunshine, and see where it takes me next.
Whoops, I let the fart out. Hannah is turning the van around and telling me it’s over.
Acknowledgments
I want to thank both of the editors who contributed to the quality of this book—Claire, for helping me envision a true theme that would guide my essays, and Katherine, for shaping my attempts at chapters into beautiful finished products with your skillful touch. I want to thank my agent, Tina Dubois, for offering support and reassurance when I needed it most. Thank you to everyone at Roaring Brook Press for believing in me as a writer and a voice.
Thank you, Mom and Dad, for giving me the skills, values, responsibility, and confidence to be an independent adult. I love you both more than words could ever say.
Thank you to my brother, Andrew, for being there when shit gets rough, and for so much more that won’t fit here. I’m insanely proud of the man you’ve become.
To Hannah, I love you forever. I’m not saying thank you, because you yell at me for that, but please know you are the best thing that’s ever happened to me.
also by shane burcaw
Memoir
Laughing at My Nightmare
Picture Book
Not So Different: What You Really Want to Ask About Having a Disability
About the Author
Shane Burcaw is a twenty-something young adult with Spinal Muscular Atrophy and a wicked sense of humor. He lives in Minneapolis, Minnesota, where he runs a blog and nonprofit organization dedicated to providing medical equipment to people with muscular dystrophy diseases. He and his girlfriend are the duo behind Squirmy and Grubs, a YouTube channel that offers a behind the scenes look at their interabled relationship. You can sign up for email updates here.
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Contents
Title Page
Copyright Notice
Dedication
Introduction
Chapter 1: Eighth-Grade Pee Fiasco
Chapter 2: Ron
Chapter 3: Locked Out
Chapter 4: Road Rage and Rag Dolls
Chapter 5: Strangers Assume My Girlfriend Is My Nurse
Chapter 6: Buffalo
Chapter 7: Reddit
Chapter 8: Laughing at Our Nightmare
Chapter 9: Jerika
Chapter 10: Beaufort
Chapter 11: Rant
Chapter 12: Deadly Ducks and Cheese Curds
Chapter 13: The Elevator
Chapter 14: San Francisco
Chapter 15: Hannah and Shane Take Manhattan
Chapter 16: Adaptation
Chapter 17: Your Complete Guide to Shane’s Sex Life
Chapter 18: Another Bathroom Story
Chapter 19: Coughing
Chapter 20: If I Could Walk
Chapter 21: Spinraza
Chapter 22: StankTour
Chapter 23: The Move
Acknowledgments
Also by Shane Burcaw
About the Author
Copyright
Copyright © 2019 by Shane Burcaw
Published by Roaring Brook Press
Roaring Brook Press is a division of Holtzbrinck Publishing Holdings Limited Partnership
175 Fifth Avenue, New York, NY 10010
fiercereads.com
All rights reserved
Library of Congress Control Number: 2018944885
ISBN: 978-1-62672-770-0
Our ebooks may be purchased in bulk for promotional, educational, or business use. Please contact your local bookseller or the Macmillan Corporate and Premium Sales Department at (800) 221-7945 ext. 5442 or by email at [email protected].
First edition, 2019
eISBN: 9781626727694
