This is Meant to Hurt You Leah Sottile
En Media Res.
It is August and it is hot and in the other room my husband is dying.
It has become the only explanation that makes any sense. Joe is a 34-year-old man in constant, unbearable, searing-hot pain, a patient doctors have called a “mystery,” as if that were some kind of comfort. The life he wants to live—where he’s a graphic designer and a drummer—dangles in front of him. If he lives that life, he gets sick. If he doesn’t…
He lies on our king-sized bed, his bare legs twisted up in the thin white summer sheets patterned with red branches and petals that look like droplets of blood. When he is awake, he shifts and writhes in constant misery, two box fans blowing hot air at his face. He sighs when things are bearable; he moans the rest of the time. He takes pain pills and suffers in the hot, dark room staring into the ceiling, past another fan whirring so fast its glass light fixture jiggles and plinks from the motion. He crawls to the bathroom.
It’s a 100 degree day in our fourth floor west-facing apartment in a building made of brick. Our place is a pod of three small rooms—nothing fancy, but fairly new. From the win-dows, though, there’s an unobstructed view of Portland’s emerald green St John’s Bridge. Its red lights blink from the tips of the bridge’s spires day and night like slow-beating electric hearts. When we signed the lease on this place—in a brief moment of health—we reveled at the idea of the gothic gem of the Rose City outside our window, as if this would be our very own Frasier apartment.
But too many times lately, as we watch cop cars and ambulances fly over the bridge, sirens screaming, I worry about how close it is. What if, like the people we’ve seen teeter on the edge there, Joe, too, would feel the pull of the bridge’s platform? What if after all these years of fighting he would shuffle out there in his pajamas and give up trying to figure out what was wrong with him? If anything was wrong with him?
Or what if it would be me out on the ledge there, the air whipping around me on a hot summer day?
Cool, quiet relief, for a moment. And then nothing.
It has been seven years since Joe first set foot in a doctor’s office. Seven years of pills and syringes and ER trips, of visits to specialists who gave him a diagnosis of a disease we couldn’t pronounce and no one we knew had ever heard of.
Ankylosing Spondylitis. It sounds like the scientific name of a dinosaur.
It is an awful biological creation, a mutation of the body that is sometimes called “bamboo spine” for how the backbone fuses into a hard, inflexible branch over enough time. For Joe to feel any semblance of a normal life, he sits for hours in a chemo center, surrounded by people with shaved heads and in wheelchairs, where the only drugs that make him feel better are administered through an IV.
“You don’t have cancer, babe,” I reminded him the first time we arrived for his treatment. “Don’t start to think that way. You’re not like these people. You’re sick, but you’re not dying.”
Like every medication he’d tried before, these drugs worked for just long enough that life, it seemed, was normalizing. Joe was playing his drums in a band, even going on weekend-long Northwest tours. He was working. It started to feel like we were a normal couple in their early 30s again.
We planned a cross-state move. Joe took a new job with a big company.
It felt like we were finally strapping lead weights onto the memories of this past seven years, this time of misery and struggle and uncertainty, and we were watching it disappear un-derwater, sinking slowly toward the bottom of the ocean.
I don’t know exactly when Joe’s pain made its grand, dramatic reentry.
It starts in his neck: a hot pain that pulls his shoulder muscles tight like stiff ropes, that sends electricity up into his head and through his forehead, tightening like a vise around his skull. The word headache really doesn’t do it justice.
The throbbing moves down his spine, into his lower back, bending him forward into a hunch, as if someone has smacked him across the back with a two-by-four and he’s frozen there, unable to ever recoil from the blow.
But the worst of it is in his hips: a stabbing so miserable that he walks with a limp. Not like a bounce-walk after you’ve stubbed your toe: Joe’s legs move like he is constantly trying to step onto a stair and missing every time. Calling it a shuffle would be too graceful: Joe walks like a lurching skeleton, a machine without grease. At doctor’s offices and hospitals, he refuses wheelchairs from nurses who look at him with furrowed brows, preferring to be seen hobbling violently and slowly than to drop into the invisible, unseen realm of the wheelchair-bound.
He moves like a young man who has grown old overnight.
His mind is demolished as he comes to grips that there is no real reason why he’s here. Why he’s walking like this, or why he, a young man, has spent hours in waiting rooms beside women with white permed hair and men with canes while everyone else his age seems to be traveling the world and having children and buying houses.
There is no better way to explain it than this: shit happens.
Too many times Joe looks at me with those blue eyes I fell in love with so long ago. They’re clear and desperate and angry. He asks me if he’s crazy. If he feels so much pain, why can’t doctors stop it? Is it all in his head?
“Of course it isn’t in your head, babe,” I say, because I can’t tell him I’ve been wonder-ing the same thing all along. When you love someone, there are certain things you just can’t say.
The doctor waits until after six to call, and when she does, Joe picks it up on the first ring.
She tells Joe that she’s reviewed his MRI, and can definitively say that he’s spent seven years treating a disease that she, an expert, does not believe he actually has.
This is good news.
This, to Joe, is bad news.
He is pissed. Fuming. Spewing who-is-she-to-tell-me-what-I-haves.
And I say maybe it’s good news. Maybe this seven years of toiling was for nothing, and we can put it behind us.
And he looks at me again with those eyes and says he’s still in pain.
That he’s more scared now than he’s ever been.
If his pain isn’t caused by the disease he thought he had, he says, “Then what the fuck do I have?”
Joe’s band was called These Arms Are Snakes.
They were a band for which fans were not casual, whose love ran so deep and true that many a young girl tattooed a black raven with an exposed red heart—the band’s logo—onto their skin.
These Arms Are Snakes would become one of most popular underground punk groups in the country, signed to a respected independent label. They were strange and aggressive, sensitive and off-kilter. Joe, the band’s original drummer, hit his drums with a ferocity and force that inspired just as many onlookers as the band’s enigmatic lead singer. He pounded and pummeled: a beautiful, masculine violence.
But rock bands don’t last forever. Joe knew he had more inside of him than just music, and he quit the band after two years of touring the country nonstop.
After his very last show in Seattle, he packed his forest green kit into their bright blue cases and piled into a 15-passenger van headed toward Spokane, his hometown, five hours to the east.
Less than an hour from his family’s front door, the van hit a patch of black ice that caused the vehicle to spin out of control, slam into the guardrail on the right side of the road, whirl in a circle and, suddenly, stop. They were facing the wrong way, looking through the night mist at the approaching headlights of a semi-truck.
Joe was in the back, asleep across the middle bench seat without a seatbelt on. The sudden jerk of the van, set off it’s smooth course, caused him to open his eyes and see the headlights bearing down on them, blinding and clear as if they were the eyes of God, and he thought to himself, “So, this is how it ends.”
The truck, with a gargantuan piece of metal strapped to its open bed, jack-knifed as it steered and skidded to avoid the van, causing that hulking object to launch into the air and embed itself in the icy blacktop like a meteor.
When the truck collided with the van, the metal encasing left Joe and his friends crumpled and folded as if it were an empty soda can. The windows exploded, sending shards of glass into their hair and skin. There was a six pack of beer somewhere in the van, and the pieces pierced the tin spraying the terrified passengers in alcohol. One of Joe’s drum cases launched into the head of one of his friends.
They were bloody and they were covered in beer, but the impact, somehow, didn’t kill them. Everyone in the van, including Joe, walked away from it. The accident made the headlines of punk news sites.
For Joe, though, it was more than a Buddy Holly moment. As he stood there on the side of the freeway in the freezing cold, as ambulances and police cars swarmed around he and his friends, Joe knew that everything could have just ended. He felt lucky.
He had no idea that, somewhere deep inside his body, everything had just changed.
Joe was wearing freshly-pressed pants and a smart sweater when he walked into the newspaper office where I worked as a music critic. He wore cologne and had combed his hair. We met at the bottom of the spiral staircase that ran like a spine through the center of the office and I remember thinking he looked like a square.
He was smart enough to realize that people make a lot of assumptions about folks that look like he does, and he projected the very image he hoped would get him hired. Nice guy. Smart and easy to talk to. He got the job.
After a few weeks of winning the office over, Joe showed who he was. He grew out his beard, long and bushy and bright red. He arrived at work in jeans and t-shirts, revealing bright blue roses and a dead man in a gas mask tattooed across his arms. And he came upstairs, knocked on my cubicle wall and asked if we could get coffee and talk about music.
I said I had a boyfriend. He didn’t care.
Soon I didn’t either.
Before I met Joe, my world was a blur of beer-bottle green. My best girlfriends were the types who’d hold each others’ hair back every weekend, but we never once talked about if we drank too much. We knew we did. I think we probably all silently agreed that we were having too much fun to overthink it. We were young, we had our whole lives to be sober.
My boyfriend back then was this Friday Night molotov: a corporate guy by day who was quick to throw fists on the weekend. I’ll never forget dragging him away from a fistfight that tumbled out the front doors of a bar on Seattle’s Capitol Hill. He’d starting something with a red-headed guy who looked at him wrong. It was embarrassing to be that girl clutching her purse with one hand and dragging her idiot boyfriend by the shirt out of a pile of bloody noses and split lips with the other.
But anger had always been attractive to me. It was never something I feared — just something I excused as a natural consequence of passionate people. In the house I shared with my friends, I covered the walls of my bedroom in portraits of it: pictures of WTO protests in Seattle, where anarchists covered their faces with handkerchiefs when cops used tear gas. Above my bed, amid punk posters and snapshots from protests I’d organized with my friends, there was a shot of Trent Reznor from Nine Inch Nails’ “Head Like a Hole” video, dreadlocks flying as he’s screaming into a microphone. There was a lot about the world that pissed me off when I was young, but I found an outlet for it through the punk and metal scenes. Anger, there, wasn’t a scary thing; it was a shared human experience. Through our collective rage, we could disappear into the noise and feel more alive.
Not long after I met Joe, I knew my already-rocky relationship was done for when my ex said he liked Joe because he relieved him of needing to talk to me about music—as if it was this silly, passing thing I was nagging him with. I knew long before that Joe—who was broke then, living in his parents’ basement— could give me more than that guy ever could. He wasn’t an angry person. He was patient, quiet—a simmer to my inferno.
In an act of post-1990s courtship, Joe gave me some of his band’s music to listen to. I would put in my headphones and play one of the songs on repeat as I walked to work. It’s called “Drinking From the Necks of the Ones You Love.” At the song’s climax, the singer repeats these lines:
Tell the future to come in the back door,
Tell all the stars that the stars are no more.
Tell the future to come in the back door,
Tell all the stars that the stars are no more.
It’s mumbling that turns, soon, to screaming. He says it again and again and again, Joe’s drums rolling like a soldier’s march behind the words and then everything explodes—the kind of rock and roll A-bomb that makes fans weak in the knees.
I listened to it over and over until I could feel those words driving my pulse, felt them pushing my heart into a steady beat and infusing the blood in my veins with a message: the future was Joe. If I let him in the back door of my life and waved goodbye to everything else I knew out the front, that the even the beauty of the stars, as I knew them, would change.
I remember when all was said and done, when months later we had an apartment together, we agreed that one day we’d have a good story to tell about our earliest days.
We didn’t know then about the invisible darkness growing inside of Joe. But it was as if his body did. As if it led him to quit the band he loved, guided him to find someone to help weather the storm that lay ahead, tumbling toward him like boulders of black thunderclouds.
To find someone whose neck he could drink from when the stars were no more.
You can say “in sickness and in health” all you want when you’re 25 and standing at an altar, but really, are you picturing your loved one withering before you? Are you thinking of the lonely hopelessness that you’ll feel when you offer your beloved their pain pills?
I wasn’t. I thought I had my whole life to prepare for the “sickness” part of that statement. I was young and naive enough to believe that getting sick is only for old people.
It has been months since Joe got the call that he was misdiagnosed, an opinion that a handful of other doctors we visited agreed with. He goes to new doctors: rheumatologists, neurologists, pain specialists, speech therapists, physical therapists, occupational therapists and a pain therapist who explains to Joe what happens to the brain when the body hurts.
We rule out diabetes, multiple sclerosis, cancer, low vitamin D levels, rheumatoid arthritis, lupus, Lyme Disease, cancer.
During a test to cross muscular dystrophy of the list, Joe lays on a bed in his underwear, and a lab tech inserts long needles into his muscles and twists a dial on an ancient looking computer, sending surges of electricity into his muscles. Joe winces in pain as the test progresses, his body jiggling. I pretend to look down at my phone. I don’t want him to see that I’m crying.
When Joe goes on disability, suddenly we are together more than we ever have been, crammed in our hot apartment together.
I escape long enough to feel sane, but not long enough for Joe to feel abandoned. I put a leash on our dog and walk across our neighborhood toward a purple and yellow painted house with a coffee can stationed in front, the words “positive affirmation bucket—take one!” written in black marker across the top.
Day after day, I reach inside and pull out neon green slips of paper with hippie wisdom written on them. As much as I want to laugh at the idea of positivity coming from a coffee can, I cling to my pilgrimages here. I hope that one day the answer to surviving this time will be written on a slip of paper inside. On one visit, I think of upending the whole can, dumping all the affirmations onto the sidewalk and pawing through them until I find the one I need.
I am paralyzed by the guilt that I feel for being angry at Joe when he sends me links to ar-ticles called “15 Things Not to Say to Someone With a Chronic or Invisible Illness.” I’m bitter at the minefield his body has set up for us to live in. I feel like I’m not married to just Joe, but to his illness, too—and I’m mourning seven years of my own life lost, as if he were this vampire sleeping beside me, draining my energy and drinking my blood in order to keep going.
And I feel so selfish for feeling all of it, for grieving a past that never was.
There are times when I cannot physically listen to Joe moan anymore—when I walk into the other half of the apartment, out of his sight, clap my hands over my ears and stretch my mouth wide in a silent scream.
One day, Joe interrupts me while I’m writing, cracking open the door to say “I love you?” A question, not a statement.
“OK,” I say. He opens the door wider and tells me he can see how I look at him when he walks into a room. He can tell I dread the sight of him.
I tell him how I hate his disease, but I hate even more when he says he loves me like it’s a question.
“If I didn’t love you,” I say. “I wouldn’t be here.”
In November, Joe gets a name for the way he feels. It’s called fibromyalgia—a disease that doc-tors say many in the medical field don’t actually believe is a real. They call it an invisible illness.
When we ask how he got it, doctors run down a list of potential triggers, several of which Joe had experienced.
“Have you ever been in a bad car accident?” one asks, and Joe and I look at each other, a photograph of the crumpled van so many years back flashing across the movie screen in my mind.
For some people, a traumatic event like that is something they shake off. Maybe they go through physical therapy for a while, or they take pain pills. But for others, like Joe, their bodies become a written record of their past, aching and creaking in such a way to remind them of how quick, how fragile and how fast this life is.
By 2016, Joe’s body starts working again. He can walk, he starts to work. He leaves the house everyday and suddenly—just as fast as he got sick—life becomes normal. Quiet.
We move, too, out of the apartment that became the stage for the worst of his sickness. We get a house in the country where an ostentation of peacocks struts across the lawn, fanning their feathers and standing on our fenceposts to crow at the sky. At night the old tree by the bedroom creaks and a wooden chicken coop door slams and groans in the wind.
One of the first nights after we moved in, I looked out the bathroom window. It was black outside, not a light around except the stars. A heavy wind was stirring, and the bamboo chimes I’d hung out on the porch were chattering in bursts. It wasn’t quiet, but it was peaceful, and it occurred to me that I couldn’t recall a single time in the last decade when I had used that word to describe my life.
We sat down to eat dinner recently and Joe stopped me when I referred to a period of time as “back when you were sick”—as if it were some kind of ancient history.
“I’m still sick,” he said. “I’ll always be sick.”
It hadn’t occurred to me that even before Joe was in pain, he was sick. That when he asked me to marry him in our kitchen as I was cooking dinner one night, he had been sick then, too. He just didn’t know it yet.
There were times throughout the worst of Joe’s pain when I sobbed uncontrollably about this horrible hand we’d been dealt. The thing I remember about those times is how much worse it made me feel to cry on the shoulder of a sick person.
But that is what love is. It is a thing defined at the worst moments of our lives. Love happens at the bottom, when we willingly tilt our necks to the sides, push our hair away from our neck and offer up our own arteries to drink from when there is no other way to take the pain away.
Originally published in Moss: Volume Two.