Love and Illness

Sjohnna McCray

                 Each morning I get up, I die a little.
                 Can barely stand on my feet.
                 Take a look at yourself,
                 take a look in the mirror and cry,
                 Lord, what you’re doing to me.

                                  —Freddie Mercury & Queen, “Somebody to Love”

I have never liked my body; it is like a work by Francis Bacon gone awry. Currently, I have nine scars across my chest and stomach ranging from small raised welts like the candy, Dots, to unidentified islands of lesions. Small horizontal and vertical scars mark the center of my body while there is a long dash above my belly button. Oddly enough, it looks like someone has cut math symbols into the length of my body. The isle to the North of my heart is the largest. It is the width of two fingers and six inches long. According to Wikipedia, these keloid scars “are seen 15 times more frequently in people of African descent than in people of European descent.” Even my body discriminates against me.

When I was diagnosed with kidney failure, I knew the McCray family genetics had finally caught up with me. I grew up in a family of insulin, needles and swollen feet. My grandmother had it, my aunt, my uncle and my father all had to check their “sugar.” My father’s leg was amputated because of complications from diabetes. So, it was only a matter of time before I was doubled over in an emergency room with all the other poor schlubs waiting to see a doctor. It was like a horror movie for senior citizens, hours of boredom coupled with increasing amounts of pain. I was swollen beyond belief and as round as the Michelin Man. Everyone was clutching something: a pillow from home, a purse or just the arm of the waiting room chair.

When a nurse finally took me back, I was so relieved to go through the ER doors, to finally be acknowledged that I didn’t expect to lay on a gurney in a dark room for another hour or so. When the Asian lady doctor comes in with the fancy shoes, I know this because I am gay, and says, “This is a lot to take in. We’re throwing a lot of information at you right now but honey we need to start you on dialysis—now. We need to put in a catheter.” I say yes ma’am and nod because she is talking really fast and called me honey and all I can think about is my partner in the waiting room. I’m sorry this is taking so long.

I apologize in my head for all the inconveniences my health has caused us these past few months. In Chicago, my kidneys were functioning at fifty percent. In Georgia, when the doctor in Swainsboro said they were at eighteen percent, he said you might be okay for several months but then your numbers will nosedive. It was as if my kidneys had the life of an iPhone. There would be no slow decline. Dialysis was inevitable.

***

                 I work hard (he works hard)
                 every day of my life.
                 I work till I ache in my bones…

                                  —Freddie Mercury & Queen, “Somebody to Love”

Sometimes love is not a building up of things but a collapse of expectations. Before my father’s leg was amputated, before I would learn all the horrible complications of diabetes, there was my father’s ugly feet. Those feet took him all across the city as he worked two, sometimes three jobs cleaning bars and nightclubs in the wee hours of the morning. He did it to keep us afloat but I also think he just liked to work. He understood what it meant not to have a job and held on to the ones he had with a singular grip—even after his feet started to blister and swell. Even after they started to smell of rotten meat and crusted his socks in pus and ooze, he hobbled to work. To my father’s detriment, hydrogen peroxide and alcohol did not cure every ailment and by the time he sought treatment, it was too late.

He was the only janitor who wore dress shoes while he mopped. He didn’t wear a uniform or Dickies but slacks he bought from the “rumor sale” and short sleeve shirts that exposed his chest hair. Until I became ill, I never fully realized how my father was conscious of his own vanity. When he’d give me money to buy ridiculously expensive teen fashions, he’d say, “It’s okay. When you look good, you feel good.” When he lost his leg, I was in my twenties and I didn’t think how his body’s betrayal must have affected him. I wonder if he felt the way I do now. If some days are met by sheer force of will.

Even though renal failure and dialysis encourages you to be humble and grateful for the borrowed time, the new normal means you’ll always be a step behind your former life: there will be no overexertion at the gym, your body will retain fluid causing your face to swell, there will be no long walks without occasional jolts of neuropathy and your sex life will take place during the rare times you aren’t thinking about your illness. When you look in the mirror, one of Eddie Murphy’s Klumps in a fat suit is staring back. In short, you feel less of a man even though, technically, you weigh more. This idea was never important to you before but when your body’s “check engine” light comes on and doesn’t go off, you might say your adventurous days are over; your fender is dragging the ground.

My father had fought tooth and nail to get partial custody of my younger brother (different mother, different prostitute), limping to and from the court house. What I didn’t understand then, but my friends with children probably recognize, is how leaving a child when they need you, is not an option. You galvanize your remaining faculties and make that child’s need your only focus. You organize your touchstones, in my father’s case it was his two sons, and banish any futures in which you are not present. Leg be damned.

But while I was off in some collegiate dormitory, I can’t fathom what my father’s mirror must have held for him. He was a short man whose weight fluctuated between rail thin and superior eater. What must he have thought with this new lopsided carriage? Did he fret over the wrinkling of his pants at the knee over the bulge of the prosthetic leg? When he wasn’t reading his bible, did he trace the scars of his body like the lineage of Adam? From one surgery to the next, the man who pulled women far out of his league was diminished. I did not know that in order to live, one’s preening ego is abandoned like a just crowned beauty queen in an empty auditorium. In popular colloquial terms, Ain’t nobody got time for that.

My father put aside his pride, as if he had a choice, and said take it. Take the leg. It was worth the extra time. I didn’t know it was extra because my father had become somewhat of a mythical figure in my family. He had been in out and out of the hospital before but the general consensus was, Danny’s not going anywhere. Nothing can kill that man. However, we were wrong but didn’t know it yet. Before he died, the arrogance, the pride and chutzpah my father had branded himself with began to fade. With no job, he was reduced to the one role that he really coveted: he would always be a father. I know this because he would say, “The only thing I care about is you and that boy, that’s it. Fuck all the rest of this shit. You hear me?”

Once, when I had taken a Greyhound and a city bus home for winter break, I opened the door to our apartment in Pleasant Ridge and it was cool, dim and empty. The furniture was there but I didn’t see my father. I could tell by the orderliness of the room that he had cleaned before my arrival. Our apartment was a collection of outdated, wool covered furniture that evoked 1970s grandma. As I stepped further into the apartment and peered down the hallway to the one bedroom which my father gave to me whenever I came home, I saw him lying flat on his stomach. He was half on and his leg and prosthetic leg were off the bed and to the side. It was the first time I had seen him after the surgery and I thought quite possibly that he might be dead.

I gently called out as not to startle him and like something from his bible, he rose like Lazarus. His body was sinewy and gaunt but his smile was unmistakable. The wide mouth, the awkward teeth. It was as if he floated toward me, I barely noticed a slight limp. It’s silly to say but our relationship had been like a meringue, whipped about vigorously until it yielded this, this moment where my father’s body folded into mine—light as air. Most men, if we’re being honest, can count all the times our fathers unmasked before us, his true identity revealed. “John,” he said, “Man, am I glad to see you.” In one stroke, he was telling me he needed me.

I remember this moment because my father probably weighed the same as a ten-pound bag of potatoes. For the first time, I was physically stronger than him, more capable of working in the modern world. His body dissolved in my arms like water on cotton candy. But his words, “John, man, am I glad to see you,” made me feel necessary, relieved and acknowledged all at the same time.

That small occasion shaped my idea of love. In the movies, love is as tall as the Empire State building but in life love is more of a collapse of all the infrastructure a person builds to create meaning. It resists reasoning and logical equations. It is as simple as an old man collapsing in one’s arms and making sure you are present when you catch him.

***

                 Got no feel, I got no rhythm
                 I just keep losing my beat (you just keep losing and losing)
                 I’m OK, I’m alright (he alright, he’s alright)
                 I ain’t gonna face no defeat

                                  —Freddie Mercury & Queen, “Somebody to Love”

It is Sunday morning and we are still in bed. The light shines through the side window and tries to soften the day. However, there’s no softening the sight of my body and I reach for a T-shirt before Don stops me. I complain about the state of my body. He pauses for a minute and then tells me, “I love your scars. I love every one of them.” I tell him, he has to say that because he’s my husband. In reality, he’s the person whose opinion of my body matters the most, the person I feel I’ve let down by not winning some genetic lottery. He shakes his head and traces the scar that looks like a dark red minus sign and says, “Each one of these has kept you here with me.”

Love is never like the movies. It is unexpectedly ugly and dependant on things that have nothing to do with being soulmates. It is romantic in the least romantic ways. Before I could transition from PD (peritoneal dialysis) to home hemodialysis, I had to guarantee that I had a stable caregiver. Someone who promised to be present in the home every day until the session was over. The sessions would run for three hours, five days a week. It is a vow almost more important than saying I do.

During most marriage ceremonies, the bride and groom look at each other not as they are but as their best and brightest potential selves. They may say they love the person for who they are but what they really mean is I love our potential together, our present and future lives. When Don said he would be my caregiver, he was looking at damaged goods. He was looking at a body ravaged not only by time but by genetics, a failed kidney, a failed pancreas. He was saying I do to a body of failure.

When Don and I begin another night of dialysis, I lay my arm on the white interior of the pale blue lap pad as if I’m making an offering. As he snaps on his rubber gloves, he preps the access site, which consists of two small puncture wounds on the inside of my left forearm, with alcohol and iodine pads. He unscrews the sharp plastic cap of the needle which also acts as a pick for scabs. Before he can insert the dialysis needles, the scabs must be picked clean every night and every night it is like an acute ritual of pain. It’s not enough to be called agonizing but just enough to know your flesh is being picked at. As I watch how he studies the scabs and makes a small scooping motion with what is the equivalent of a razor-sharp ink pen cap, I know this is somebody to love. Regardless of wedding rings and legal documents, when he slides the silver needle into my arm not once but twice, I know this pain is love.

Author Portrait

Sjohnna McCray’s essays have appeared in Carolina Quarterly, Cincinnati Magazine, and Storm Cellar. His poetry has been published in the New York Times Magazine, The Southern Review, The Evergreen Review, and more. In 2015, he received the Walt Whitman Award from the Academy of American Poets for his collection, Rapture. McCray received his MFA from the University of Virginia and lives in Athens, Georgia.