by Shane Burcaw
Each time she returned to her home in Minnesota, I deeply missed the comfort of being lifted into bed by her, of having her shower me and help me use the bathroom. At the same time, maybe even more intensely than me, Hannah lamented that she was not the one brushing my teeth and putting my socks on each morning. Life was better for both of us when she was the person helping with my daily living. Obviously, our desire to be together had much less to do with the actual caregiving and much more to do with the fact that we were best friends (and in love). We made each other laugh and think, and waking up next to her each morning always felt like the start of a brand new adventure.
Over Skype in the months leading up to the trip, we mapped out our route and fantasized about the new places we’d see together. Once, my nervous nature got the best of me and I asked her something like, “You’re sure after an eight-hour drive you’ll be okay with doing all my stuff too?”
Her eyes rolled so far into the back of her head that the internet connection almost zapped out. When she regained control of her facial features, she repeated a line I’d heard from her before: “I love doing that stuff, Shane. It’s the exact opposite of a burden. I want to be the one doing it.”
She had a keen way of laying my fears to rest with that sarcastic roll of her eyes.
So yes, it was just the two of us on this road trip, and no, we didn’t worry whether Hannah could handle all my care. Instead, we worried about …
BETHLEHEM, PA—Do we have the milkshakes?
Months of preparation had us feeling like no stone had been unturned. We’d examined this trip from every angle, and even though a large portion of the details were purposely left up in the air to allow for spontaneity, we still departed from my house on the first morning confident that the most important factors had been adequately anticipated.
One of those factors was how I was going to maintain a healthy level of nutrient intake throughout the weeks on the road. In my typical daily life, I rely on a nasal feeding tube to deliver the majority of my calories—about 1,500 per day. When I’m traveling, it’s often easier to forego the nightly feeding tube and just drink one of the high-calorie protein milkshakes that my doctor prescribes for me. For our trip, I decided to rely solely on these milkshakes, putting them pretty high on the list of “important things not to forget,” along with my wheelchair, Pringles, and plenty of underwear.
Guess what we forgot?
Luckily, we were still close to home when we realized we needed to turn around.
LAGRANGE, IN—Where the hell do you get food after 7 p.m. in rural Indiana?
Wanting to escape the drab repetitiveness of major interstates, we decided to venture off the main highway in Indiana to navigate the forgotten back roads of corn country instead. Peaceful farmland dotted by the occasional three-block “town” became the norm. We argued about whether cow manure was a pleasing smell as we crested the low, rolling hills and the sun set softly before us.
Nearing the small town of Shipshewana, Indiana, where we had booked our first hotel, our stomachs began to growl. I searched the GPS for somewhere to eat. It was 7 p.m. on a Wednesday, and to my confusion, not a single place was open. Not one within thirty miles. I’m not sure how anyone can survive without the occasional 10 p.m. deep-fried McDonald’s fix, but apparently the wholesome people of rural Indiana are all in bed by mid-afternoon.
We located a family-run grocery store in a town that may have been home to six people. It was closing in ten minutes, but they kindly let us grab a meal suitable for royalty—frozen TV dinners and lemonade.
Astonishingly, our room at the quaint little inn not only had a microwave to heat our food, but a whirlpool bathtub right in the middle of the bedroom. It screamed indecency. Maybe those innocent Indianans aren’t so pure after all.
SHIPSHEWANA, IN—Are we weird?
I can’t think of a much sexier occasion than lounging the night away in a hotel bathtub. We undressed and Hannah lowered me carefully into the tub, steaming with scalding water from the surprisingly powerful faucet. I shrieked as the burning water enveloped my body. Mmm, fuck, sexy.
Taking a bath together was something we had talked about doing but never attempted because of the physical challenges. Outside of the carefully constructed supports of my wheelchair, I cannot hold up my head or move my limbs, so a bathtub full of water might as well be the middle of the Atlantic Ocean for me. To avoid drowning, I wore my adaptive neck float that I use for swimming. The plan was to remove it once Hannah climbed in and got situated.
A rare Mangled Sea Anemone in its natural habitat.
“It’s way too hot,” I said, floating in the tub while she took off the rest of her clothing.
“Can I run more cold water for my biggest baby?” she replied.
“Nah, I’m sure it’ll cool off. Hurry up, this neck float is cutting off blood flow to my brain.”
The sex tub was decently sized, but not wide enough for our bodies to lounge side by side. Hannah slithered down in a series of precarious postures, sliding me on top of herself as she got comfortable in the water. I yelped about my fragile feet and fragile hips and fragile ribs. She giggled and assured me she was being careful. I yelped some more. We both laughed. We kissed. She slid down a little further, more frantic yelping from me, and then we were settled.
“Holy shit,” I said. “This is perfect.”
“Our neighbors probably think I’m abusing you over here. ‘Watch my feet!’” she mimicked, leaning over to kiss my neck.
Our bodies were tucked together beneath the water, my head resting against her shoulder now that my float had been removed. Her arms, wrapped around me, made sure I didn’t slip below the surface. The position felt so natural and effortless that I stopped worrying about my feet. We closed our eyes and listened to the chirping of summer crickets outside our window.
All too soon, our relaxing moment was complicated by the growing discomfort of soaking in boiling water on a humid July evening.
“Okay, this is the most comfortable I’ve ever been, and I don’t want to move, but my face is beginning to tingle as I imagine it might before a heat stroke,” I said.
“I’ve been trying to figure out how I can reach my water bottle without submerging you,” she said.
My face was sweating. Her chest was sweating. I could feel the blood in my veins thickening into sludge. The end was rapidly approaching unless we cooled off fast.
Delicately, as if handling an infant, Hannah hoisted me onto her lap and raised us both into a sitting position. She reached forward and turned the bathtub faucet onto full-blast cold, sending a chill radiating up through our feet. She cupped her palm and filled it with the frigid water, splashing it in my face. She brought her next palmful to my lips. In my fervor to cool down, I drank, and as the icy water trickled over my dry lips, hysteria overtook me.
“More! Now!” I said, but she was already chugging a mouthful for herself, and then another, and then another. We took turns like that, sucking beautiful handfuls of water from her palms, until the tub water turned cold and it was time for bed.
Falling asleep that night, we decided bathtubs would not be the ideal venue for future sexy times.
SHIPSHEWANA, IN—Is this ethical?
We never expected the first stop on our trip to provide so many memories, especially considering Shipshewana, Indiana, isn’t exactly known for being a travel destination, but the next morning, before setting off for Chicago, we wanted to see the area.
Shipshewana is home to the nation’s third-largest Amish community, and a quick Google search brought up a nearby Amish-run “animal park” that—bizarrely enough—touted its wheelchair accessibility as a major bonus to all they had to offer. There was no way we could move on without checking this place out.
Two hours later, we found ourselves parked inside a vast animal enclosure, stricken with fear as a variety of hungry beasts attempted to enter our van. An ornery water buffalo with horns the size of parking cones brushed his spi
kes along the length of my van. An ostrich stood outside my window and stared directly into my soul. Something that appeared to be a woolly mammoth tried to mount the rear of the van.
Turns out, goats are totally pro-wheelchair.
It was neat for about three minutes before it became disturbing. The animals were definitely not too enthused about having a line of minivans driving through their habitat every day. I need to brush up on my Amish law, but the whole setup felt like it shouldn’t be allowed to exist. We left.
CHICAGO, IL—Is there a bathroom here?
After taking the obligatory tourist photos in front of the giant bean in downtown Chicago, we meandered through the chaotic city streets until we came upon a tavern that caught our eyes. Once we had been seated, I asked our waiter if there was a bathroom nearby. He calculated a route in his head, and replied, “Yes, follow me.”
We moved through the dining room and turned into a tight hallway. He stopped at an elevator and instructed us to get on. The three of us barely fit, so when a fourth individual—a chef, it seemed—joined us on the next floor up, the mood became quite sexual. We exited on the fifth floor.
He gave us further instructions: “Now, you’re going to follow this hallway down and make the third left. That door only opens if you really tug it. Once inside, another attendant will take you back down two floors on the freight elevator to the backside of the building. Cross the drawbridge and blow out four of the six candles lining the altar that lies beyond. A bookcase will open. Enter it. Ignore the children. Take a right, then a left, and you’ll find yourself in a room full of key-shaped fairies, only one of which will fit the lock to the accessible bathroom at the far right corner of the adjacent room. Good luck.”
Thankfully, I had already peed in my pants during the first half of his explanation, so there was no need to bother with all of that.
MINNEAPOLIS, MN—What are the softest foods?
Throughout our trip, and especially during the week we spent at Hannah’s parents’ house in Minneapolis, we made it our mission to seek out soft food that would be easy for my weakening jaw to handle. Time and time again, while deciding where to eat dinner, Hannah would bring up various menus on her phone and read aloud the items that sounded most friendly for my mouth muscles. I ordered soup almost every day, and as she fed me spoonfuls, we wondered what wild assumptions nearby strangers were making about our relationship. Occasionally, we’d exchange a brief kiss to complicate whatever they were inaccurately imagining about us. We didn’t care if they stared, and I ate to my heart’s content without getting tired every night.
MURDO, SD—Why in the world did we think a Super 8 in Murdo, South Dakota, was going to be a nice place to spend a night?
No explanation needed. There were actual cockroaches in our room, and the best breakfast option the next morning was expired donuts and soggy cheese from the gas station next door.
BADLANDS, SD—Why did I wear pants?
My whole life, I’ve struggled to find comfortable, stylish clothing that I can wear. Pants have been particularly hard to find ever since the baggy clothing of the 90s went out of style. In fact, since my teen years, I’d say one of my biggest struggles has been finding skinny jeans that I can wear. Rough life, right?
I’m small, like slightly-larger-than-a-well-fed-toddler small. And my legs are basically locked into the sitting position of my chair, so when all my friends began wearing skintight jeans back in high school, I had to sit on the sidelines and watch with envious eyes as that fad passed me by. It was just too tough to find a pair of jeans that looked skinny on my stick legs but weren’t so tight that they snapped my brittle twig bones as someone yanked them on each morning.
For a while, I just settled for being uncomfortable. I had one pair of jeans that I deemed cool, and even though putting them on took four hours, and even though the waistband gave me actual bruises on my hips, and even though taking them off was like peeling the skin off a highly sensitive apple using only your fingertips, I wore them every day because they were my best option. After high school, I gave up on this desire to be trendy and returned to wearing whatever clothing was easiest.
Then, while in Minneapolis on this road trip, Hannah introduced me to a magical world called the Girls section at H&M, a place bursting with soft material and stretchy fabric. Just thinking about it makes my eyes moist with joy.
Here I met the oxymoron that is called the stretchy skinny jean. They’re a real thing, and they are exactly what they sound like: soft, comfortable jeans that melt into my curves like warm butter but stretch like putty for easy on and off. Plus, there is a thing in this magical land called “high waisted,” which solved my lifelong problem of having my pants slip off my rear end when I’m being lifted from my bed to my chair.
Obviously, I wanted to wear them every day of the road trip, even when it was 105 degrees in the desert of a state park that is the Badlands. I roasted like a disabled chestnut on an open fire. By the time we got to our hotel in Wyoming later that night, I was sitting in a puddle of my own sweat.
Getting sun poisoning in the Badlands!
Can I blame this on Hannah? She is my caregiver, after all.
YELLOWSTONE NATIONAL PARK—Is that it?
Old Faithful was a letdown. I feel un-American for even saying it, but it’s the honest truth. It was the opposite of thrilling. Don’t get me wrong, Hannah and I greatly enjoyed the rest of Yellowstone, and if you are one of my wheelchair brethren reading this, the park has many accessible trails and pathways and breathtaking sites to see, but the most famous of geysers felt like a lame tourist trap.
Shortly after this, Hannah was distracted for an hour by a family of wild mice.
DENVER, CO—What’s the plan?
In Denver, marijuana is legal for recreational use, so Hannah and I decided to give it a whirl. (My mother just put the book down to send me a disapproving text message.)
I’ll spare you the cringeworthy details of actually purchasing the THC-laced gummy bears from the pot shop and bring you to later that evening when, after ingesting what we both thought should have been enough to give us a high, we were feeling sadly disappointed that nothing was happening.
The golden rule for edible weed products is to give your body plenty of time to digest. A common mistake that first-timers make, we were told, was not giving the edibles enough time to work their magic. People don’t feel instantly high, and think they’ve purchased a dud, so they take more, and then everything they’ve taken hits at once, which can be a pretty scary experience, we were told.
We broke the golden rule.
Despite ingesting enough weed to kill a small cow, I was miraculously unaffected, which must be some freak symptom of muscular dystrophy—a hulkish immunity to weed—but Hannah was not so fortunate, and it turned our night in Denver into one that we—or at least I—will never forget.
It began about halfway through our dinner at an upscale bar in downtown Denver. I asked Hannah if she was feeling the edibles yet.
“I don’t … think?” she contemplated. “But I can’t feel my legs?”
“Seriously? Or are you just being dumb?” I asked.
A few seconds passed before her eyes found mine again. “What?”
“What, what?” I said. Her stare wandered across the room. “Hannah, can you really not feel your legs?”
She turned her glance back to me with a visible amount of effort. “I feel like I keep waking up, like everything you just said was a dream, but I’m awake now. What did you say? I don’t like this.”
Fuck. This was not a good sign. I’d never eaten edibles before, but I’d been around plenty of people who had, and I knew the classic signs of having eaten too many. It was only a matter of time now before the all-encompassing sluggishness pressed itself heavily upon her body and mind. She was about to become a zombie, a really stupid zombie, and we were at least a forty-five-minute walk from the hotel.
“Hey, why don’t we try to finish up so we can head b
ack to the hotel,” I said, keeping my voice light and breezy, lest my worried tone scare her into a bad trip.
Her stare was blank, her eyes drooping already. She spoke in a slow, quiet whimper: “Oh, I don’t like this at all. I feel like I’m watching myself and I can’t feel anything. I can see myself talking. Is this bad? What did you say before about my phone?”
“Your phone? I’m not sure, baby. Hey, let’s eat up and head out, okay? Are you full?”
“I think if I just lay for a little…” And she began leaning over in the booth.
“Hannah, we can’t sleep here. We need to go back to the hotel, okay? You’re probably going to feel very, very sleepy, but that’s totally normal. I need you to stay awake until we get back to our room, okay? Think we can do that?”
The waitress stopped at our table and I asked her to bring the check. Hannah was wearing an expression of pure panic as she lost further control of her faculties. She seemed on the verge of crying. “How long was she standing there? Did I have time to reply?”
“You did great. I just asked her to bring the check.”
On the way out, Hannah needed to use the bathroom. I waited for her outside the door. When she came out a few minutes later she said, “I didn’t wash my hands. I was afraid I would forget you.”
“Okay, psycho. Let’s try to walk back to the hotel.”
Our journey was quite an adventure. Her heart was beating a thousand miles per hour, she reported, which I knew was a normal symptom of too many edibles, but which felt to her like an impending heart attack.