Rolling in the Home-y

It all started with Chevy Chase. My brother somehow stumbled across National Lampoon’s Vacation somewhere in his timeline. The humor is vulgar, which I love; and there is nudity, which I found out my brother did not know about because he watched it on network television. Thank God for censorship edits. It only follows that when a Christmas version of the same movie (different children, oddly enough) presented itself for consumption, my brother, my mother, and I made it a regular Christmas Eve tradition.

My affinity for the movie was easy to explain: I grew up Cousin Eddie poor and wanted to live a Clark Griswold life. For me, it was a redemption story; and the cat getting fried by the Christmas tree lights was just a bonus. For Mom, she loved to laugh, and I am pretty sure she hoped I would someday find the Todd to my Margo. But for John, who would watch the whole thing, from the animated beginning sequence to the same at the end, there was a smile on his face that spoke of pure joy. He would belly laugh only once: the scene where the rag/tag, cocksure Uncle Eddie is standing outside of the RV dumping the “shitter” into the sewer drain. I never understood why it was so amusing to John, why it struck him so.

Turns out, it wasn’t Cousin Eddie that struck John as a humorous fascination; it was the RV itself. The “tenement on wheels” held John’s fascination. A home that could go anywhere, the unbelievable abstract come to life for an autistic man. It would be 20 years later when John finally got a chance to partake of the brilliant innovation of tables that turn into beds and toilets in the shower.

When John had his first diagnosis, our family friends, Terry and Renee, moved their fifth wheeler down to Boone Hospital Center’s parking lot so that Mom and I could use it and stay closer to John. John spent his first night in a camper that was far from a tenement on wheels. He was hooked. He looked in every cabinet, pulled out and pushed in every drawer, went on an exploratory mission to find all the things that turned into beds, and finally, when he had tired himself out, retired to the bunk room, on the bottom bunk where he could stretch out and have some privacy. He was in heaven.

Fast forward nine years living cancer-free. Each summer, John had talked about how it sure would be nice to have a camper. We would nod with him in agreement, knowing that our life was not the life that could afford such luxuries. But to John, it was not a dream. I don’t know if my brother is capable of dreaming, capable of holding onto an idea that centers on a tangible thing, but unable to grasp the idea of what it meant to have the money to buy something.

The cancer came back. And so did the loaner home on wheels. This time, we parked it beside a parking garage on the Washington University campus, just a short bike-ride away from Barnes Jewish Hospital. John and I drove up the night before John’s 13-hour surgery scheduled to begin at 5 a.m., following Terry and Renee as they pulled their practically brand-new fifth-wheeler all the way to St. Louis. This was no “tenement on wheels;” this was luxurious, spacious, and the perfect place to return to every night after visiting John in the hospital.

The night before the surgery, once we settled in and had half-way unpacked, John asked if he could have the big bedroom. The big bedroom was up a short stairway and had a huge queen bed. He also asked if he could have the remote for the TV, a sacrifice that I hesitated to make because there were approximately 3,000 channels to be explored. I reluctantly handed it over, sitting in the living room and watching what John watched in the bedroom (reruns of Car 54 Where Are You? and The Lone Ranger) until I could hear John snoring. I snuck into the big bedroom and purloined the remote, turning off his television. It was 9 p.m.

I stepped outside into the middle of the city, still awake and throbbing with activity.

There were four other campers parked in the spaces reserved for family members of patients with critical or terminal illnesses. We were camper number five. I listened to the sounds of other people's lives as I walked away from the camper toward the parking garage. I heard soft sobbing, a man yelling, music on just loud enough to drown out the sound of traffic. I took the elevator to the top floor of the six-story garage, tall enough to be out of reach of the streetlights.

The city surrounded me, a circle of lights blinking, horns blaring, laughter from the college students walking back to their dorms from outings to campy restaurants, bars with singular history, the massive glass library that glowed from within, shining the stories and tales of billions of people, living, dead, characters from someone’s head. The late June heat was rising like mist from the asphalt, and I was a cobra weaving up into the sky. Anger was my venom, and I was ready to strike. Anger, I always try to tell myself, is a waste of energy. The root of anger is most always fear, and I had invited my fears into a little Pity Tea Party and let them sit with me long enough so that in my fear’s anxiousness to act, they became anger. The surgery John was about to have was dangerous, with prolonged anesthesia, moving him from a sling supported by a hook in the ceiling to a bed where he would be on his stomach for the remainder of the removal of soft tissue in his pelvis. I had never feared a period like I feared those 13 hours. But there was something fortifying about being six stories in the air, as if I could look over the landscape with a God-like surety and know the outcome would be acceptable.

I slowly twirled, the lights blurring into a far-off flame around me. This was a solitude I didn’t understand, an anonymity that I never had. And so I let it all out into the city sky. I screamed with an anger that had been wrapped around my throat for the last nine years. I knew it would come. It did not surprise me at all, and I embraced it with my entire body. I howled and squalled, in the middle of the city, sweat and tears mixing into a cocktail of goo that covered my face. The anger, which I had held in from the beginning of the second go-round, was an expression of my stupidity, my foolishness for believing that once was enough for us to go through this. I realized the irrationality of my anger, but that did not stop me from letting it roll right over me, a sand-burdened tide sweeping back into the ocean a bit of the firmament on which I had stood. I did not care that it was stupid; I cared that it was so incredibly unfair.

I cared about that until I heard the whoop-whoop of a bullhorn and peeked over the edge of the parking structure to see a little mini truck with blue and red LED lights whirring on the top. Security; someone had possessed the wherewithal to notify the authorities about me. I leaned over the edge and waved at the officer, a rotund, red-faced man who was attracting every mosquito this side of the Mississippi River. He had a bull-horn. He whoop-whooped me again, and I waved wildly so he could see me.

"Ma’am, do you have any intentions of harming yourself or any other person who might be up there with you?" His tinny voice echoed off the walls of the parking structure and came to me in metered waves.

I shook my head no. Then I said “no.” Then I hollered “NO!”

“Then you are going to need to come down from there and stop screaming, or I am going to have to put you into custody for your own well-being.” He spoke it as if reading from a crib note.

“I’ll come down,” I hollered loud enough for him to hear me through his voice bouncing from the campers to the garage walls.

“Come on down from there!” He hollered.

He was still hollering for me to come down when I exited the elevator and approached him.

“Hey, I’m down now. I’m fine. Sorry for any trouble…” His face reminded me of one of those dogs that has too much skin and not enough bone structure to stretch it taut and smooth.

“Lady, what the hell were you doing up there? These folks that stay here, they need their rest. Are you parked somewhere in the garage?” He was out of breath, as if he had climbed up the six floors and back down again while I was in the elevator.

“We are staying in the camper at the end.” I pointed my finger in the camper's direction.

His voice softened, as did his appearance. “Is it you?”

“It’s my brother, John. Cancer. I’m his… I’m the… I take care of him.” I began weeping again, the snot and sweat doubling now that there was no air stirring. I did not take care of John. John got cancer again, even worse than the first time because it was on my watch.

The security guard put his hand out, as if to shake hands, and I gave him mine. He covered my hand with both of his hands and prayed the simplest, most beautiful prayer of praise and interceding I had ever heard. I peeked at him from under closed eyes a couple of times to make sure he was not glowing or sprouted wings. As he prayed, I felt the anger lift off me, leaving me worn and weary, but also hopeful and settled in a way I had not felt settled since the diagnosis.

“Amen,” he said and dropped my hand. “Now, you need to get some rest, and you need to let other people get their rest as well.” There was a finality in his voice that spoke to some deep part of me that wanted someone else to be the one going through this with John. Yes, this could be done, and it would be done, with or without my anger and resentment and fear. And so, as the security guard pulled off in his little clown-car mini-truck, and as I went back into the camper, I accepted the peace that can be offered by strangers who have no inkling of other’s pain and the deep, sharp stake of truth that a heart can learn to beat despite it being driven to the point of hitting bone.

I went back into the camper and breathed in the air-conditioned cold. I slipped into my pajamas and pulled out the sofa sleeper and went to sleep, deep, restful sleep that I had not had in a long time.

John made it through the surgery like a champ, but even after the massive removal of all the soft tissue in his pelvis, he was still in the positive margins. The oncologist, surgeon, and radiologist told us it was nothing to be concerned with. John was and would forever be a cancer patient.

It was 18 months after that horrific surgery when John’s regular checkup was irregular. His blood work came back telling a story of active cancer cells, busy, determined cancer. A PET scan showed John had a large mass of cancer that was a fist of tissue wrapped around the front of his pelvic bone. No surgeon would touch it. Chemo and radiation only, no surgery. The oncologist pulled me aside. There were signs of it moving to his lungs, small spots in his right lung; it was metastasizing, aggressive, and terminal. It would move to the brain next.

I remember being shocked and doubtful. Then I looked at the scans myself.

John, for all his misunderstanding of social cues and what is and is not appropriate, is a raging fan of Facebook. He has thousands of friends, from people he went to school with, to people that just stumble upon his Facebook Live posts relating what is happening at our house currently (nothing notable) and who is involved (always the dogs… always). I posted a vague explanation of John’s diagnosis on Facebook and asked for prayers. What I got was prayers and a miracle.

Someone started a fundraiser for John. To use for treatment, for travel, or anything John wanted. The goal was $1,000; they surpassed that in the first half-hour. Then $5,000, done in a couple of hours. The fundraiser was up for a week and raised $20,000 for my brother. Within that time, I had been in contact with every cancer center, experimental trial, and university research facility in the country, explaining John’s situation. No would touch it, not in the location, wrapped around a pelvic bone that, if damaged, would lead to John not being able to walk. There was nothing to do but wait it out, monitor it, treat it when it flared up again, and enjoy the fact that it wasn’t causing him pain.

But there was the matter of the $20,000 raised for John’s treatment. We clarified that the money, all of it, was John’s for using as he pleased. And so, on a clear, early June day, we went shopping for campers. John had his list of requirements, and the salesman showed us every single thing that was in our price range. John was in hog heaven, opening and closing things, pushing buttons, figuring out contraptions. He finally landed on the perfect camper for us: used but immaculate, bunkhouse, small slide in the living room area and an after-market stereo that thumped like a beast. We pulled it home to our driveway, filled it with the necessities, and took off on the weekends.

I relegated the extra key to John. He had unfettered access to the camper. When we couldn’t find him in the house, he was out in the camper, just sitting, or exploring it further. We pulled it to familiar places: Shelbina Lake, which was only six miles from John’s first hometown of Shelbyville. There, John and James, my husband, would sit for hours with their fishing poles, not talking, just being there, together. I watched them together, photographing them often without their knowledge. This was John’s Zen. This was my understanding of how simple and joyful life could be for my brother, not because that was all he could do, but because that was all he wanted to do.

We pulled it to new places: Hansen Hills, a bustling, hardcore camper life campground, and pulled it out to some land purchased by some of our friends. On that land, John could roam 40 acres on the UTV, as often as he wanted to do so. A simple man’s heaven: land to roam and explore, freedom to feel validated as an adult person. That is enormous freedom for my brother who grew up not with a label, but as a label. Time has been much kinder to special needs people over the last forty years; but I feel, as a caregiver, as a human being, that we, as a society, must make amends for the years that they did not consider my brother any kind of special, but all kinds of burden. That thought burns like a laser at the back of my mind most of the time.

The only time that it does not pierce and pinch at my brain is when I wake up on a summer morning to sun glistening off the lake, making dancing diamonds on the bedroom wall of the tiny captain’s quarters in the camper, as my husband calls it. And I hear the familiar plunk of a bobber on water and the zipping hum of a reel being turned to draw the bobber back in for another cast. That is when I feel that life, though not fair, provides each of us with a bit of equity every now and then so that we do not smother under the burdens of living. That is when I know that equity comes from people, who have learned, accepted, and love with no boundaries or conditions, and who made my brother’s fascination a dream that became a reality. His own tenement on wheels. That there is an RV, in the words of Cousin Eddie. That there is a small miracle.