It begins in the synapses. Jesus, does it ever. First half a pill, and then a whole one, and I am floating in a twilight I remember from my early 20s of sad holidays with a boy who I loved and who hurt me, pills and a rumpled bed and drawn blinds and a flashing blue television.
Now, this time, the pills are to quell my anxiety and hopefully, in turn, an immune system that lashes out indiscriminately, eating away the bone in my pelvis. There’s not supposed to be a gap there, the doctor says, pointing to the blackness on a screen. You’re lucky. Most women don’t come in until their spines have started fusing. And I am doing this to myself, or more precisely, my immune system is doing this, attacking every healthy thing it can find, first my intestines which it eats to ulcers, and once I have convinced it otherwise, my hips.
I am 33 and I walk with a limp. I cannot get out of the car. My he of now has to move me in and out of bed. Can you roll me over? I’m just trying to roll over. In the morning I cannot walk until I figure out how I can, carefully, with my knee locked, if I come down straight on top of the bone, perfectly straight, because otherwise, my God, otherwise. I do not sleep and I do not sleep and I do not sleep and then a migraine. At the hospital the next day the doctor twists my leg gently, innocently, and I am immediately hysterical with the most exquisite (is that the word?), most excruciating pain. But how could the doctor have known? (Most women don’t come in until their spines have started fusing.) She says I’m sorry, I’m sorry, my God I’m sorry, and carefully asks, what about this? Does this hurt? Or this? Or here?
Yes, there are injections to kill my immune system and, yes, this in dangerous. But such a small risk, the doctor says kindly. Of lymphoma, such a small risk. Of fungal infection, a risk, yes, in the Mississippi River basin, and we are in the Mississippi River basin, but still. If you encounter a fever or infection: do you have a primary care doctor? The injections will fix everything by completely destroying what keeps you well. It will take a number of months for this to work.
But I want to talk about the pills for the anxiety, which seems to be the eternal cause of all this, for the anxiety has indeed been eternal, as long as I can possibly remember. All I want are the beautiful, tiny pills for my synapses. I run hot, I tell him. I’m always running hot. My heart with its pumping and the whirring of my brain and always I am running hot. I can’t sleep even when I can, and are you still awake? What are you thinking about? No, I’m not tired. I’ve never been tired in my entire life, but with the pills, the twilight gently descends like a velvet curtain — like the velvet curtain I once dreamt — and I remember back in my early 20s, this same haze, such a lovely haze.
I have not felt calm in over a decade, since before that first cataclysmic affair, but I am with him now — my most-adored him — and he says, my love, the pills will cure you, I’m sure of it, and his certainty almost makes me believe. If only I could quell the anxiety, my immune system won’t feel the need to attack everything in front of it. If only I could not worry so much, perhaps my intestines might not bleed. If only I were not so high-strung. If only I could relax. If only the pills, and the pills and the pills. Eventually 50 delicious milligrams accompanied by “possible sexual dysfunction” another doctor says (we have things we can do about that, though. We have things…), but all I can think of is my body and his, of the lusciousness of these bodies. As he sleeps beside me, I touch myself and listen to him breathe and my synapses sparkle and I am gone, in the haze, Jesus come and take me. I am gone in a horrible sweetness that is right now and is also a decade ago in the darkest days of another love, and in the morning I rise and wear a ring I haven’t worn since those dark days from the long-ago boy who hurt me and it is smooth and cool on my finger. The day I wear this ring, a glass casserole dish inexplicably explodes with the sound of gunshot as I make dinner and I am standing there, in a sparkling room of shards, wearing the ring I have not worn in so long, and were I superstitious person, I would say I made all of this so, that I am the true god of my own destruction.
We live inside a new spring, inside an inchoate summer, and there will be a June wedding and he is handsome and I cannot stop touching his chest.
I’m getting married to him, and this is love, and there was a love in my early 20s as well, and the pills, too. I would like to say it all blurs together and, in a way, it does, but not especially.
Now, there is a small risk of lymphoma and fungal infections that develop into terminal episodes. Now, there is a small risk, yes, of death. Every two weeks, on a Sunday afternoon, I sit on his side of the bed (because it smells like him, the sheets smell of him and if I look long enough there is his shape…) and wipe a section of my thigh with an alcohol swab and then press the plunger with a hard click and I feel the sting of the medicine as it oozes in. After, my hips do not hurt and my immune system slowly fades away until all I am left with is a small, purple bruise.
If pain has a soundtrack, it is Leonard Cohen’s. It is the deep vibrations and sad, sung poems of “the master of erotic despair,” this title bequeathed to him long ago, probably by an ad man in a tall shiny tower who knew next to nothing about pain, be it corporeal or of the soul.
The neighbor dad who lived down the dirt lane from us growing up had spent youthful do-gooder years in Grenada where he caught some sort of tropical disease. Years later, when he and his wife had kids, and I was the kids’ friend, the mysterious disease took hold of him with overwhelming fatigue, muscle pain, puzzling listlessness that seemed to worsen in the heavy, humid heat. In the summer we’d return damp, smelling of turtle shit, from the puddle of a pond down in the valley, to find him sitting in the darkened living room. Plants on windowsills cast shadows that bounced on his lifeless face. The air was the temperature of underground dirt rooms where we stored root vegetables and jars of canned peaches. The deep God-voice of Leonard Cohen growled in the half darkness as we went to and fro, watching him each time we passed, this slight man with his head fallen back in the rocking chair, shirtless, in thin nylon swim trunks and flip-flops.
I only ever remember late Cohen played in that house, that voice. He sung from his guts, straight from out of the shit.
A mother and daughter duo with blue Irish eyes perform a rendition of Dance Me To the End Of Love at the June wedding, our first dance. It is hot, perhaps the hottest day of Iowa summer. We sweat through our clothes as the daughter slowly strums a tiny mandolin in a minor key. The harmony warps around us in mournful curves, the stark melody floats high into the cavernous hay mow. The air hangs thick and hot. It hangs. The guests do not move as we move there in the middle, swaying back and forth. They don’t even breathe. All of us together, hypnotized by the incantation. Dance me to your beauty with a burning violin. Dance me through the panic till I’m gathered safely in. Touch me with your naked hand or touch me with your glove. Dance me to the end of love.
It’s another day, another headache. They come now without warning, usually on mornings after beers or whiskeys, or perhaps when the air has dried into crisp fall dust, or perhaps for no reason at all. They begin deep behind my eyes and I try to ignore them. I drink water and coffee, hum a song, tell myself that if I don’t believe it’s there, it won’t be. Always, though, they bloom to opulent bouquets of pain, silken and lush behind my quickly slackening face, coiling through my sinuses, fibrous tendrils rooting in the bone of my jaw.
It’s not a problem, I say, closing my eyes. I’m fine. I’ll just close my eyes. I won’t talk. Just let me put my head here, and I’m fine until I’m not. Let’s go home. The beer wasn’t a good idea. The cold air. The sunlight. Getting out of bed was not a good idea. I will take whatever pills you have. I will even take pills you don’t have. My eyelids hang low and loose and there is nothing to do but give up, give in to what is happening, what will happen.
We stop by the fancy grocery store on the way home because he wants food and I nod, I’m fine, the pain becomes a meditation on pain. I abide it. I treat it as a friend, a lover. These sorts of lovers have been my specialty. One of these lovers once told me you are built for pain, that’s what makes you so beautiful and I am bobbing in and out of it, leaning against a deli case of expensive cheese, watching my gorgeous new husband decide between golden raisin couscous and three cheese tortellini. Sounds are soft and everything in the store is as it should be. The world has an order unavailable to my normal senses, the senses of wholeness and health. Things and places are. The world, itself, is. Life simplifies down to existing with pain. There is nothing to do. There is just the deli case and watching and breathing.
Inside this pain, I imagine I will be good at dying and wish for a painful one, one that will not make me nostalgic for life, one that will instead make life an easy thing from which to uncurl my fingers. I am going to be great at dying, I tell him in the car, and find comfort in this. The vision out the passenger window as I watch children run and skip paradoxically appears both fuzzy and painfully clear.
The child of love, most sweet and wondrous daughter, is Voluptas, physical pleasure. Pain, poena, is no one’s child, though I like to imagine her mother is that Old French beauty Despoir. Imagine: love and despair merging to create Pain, a shiny-eyed child with feverish red cheeks and horrible little teeth. Call it an old coping mechanism, taking pain and turning it into something else, but this has been how I’ve survived holding a pain as big as a decade inside of me. That cataclysmic love affair — I worked it through my body so many times, sending it through me and around inside me, turning it over, looking at it, crying over it, examining it, until it was smooth and white-hot and as familiar as an organ that I needed to live. I took it and made it mine, a thing I owned, never to be taken from me. And my body obeyed, has obeyed, because it will not stop fighting against a foreign body that isn’t even there. Cruel fate, to never shut down, shut off, to never stop trying to rid oneself of a body even long after it is gone. Eroding bone and inflamed tissue and a fatigue so heavy you can’t help but lay back into it, into the bedsheets smelling of fresh sex, and sleep and sleep and sleep.
The pain fades. It returns only occasionally, after I’ve lain in bed too many nights imagining lymphoma cells, ghostly and mean, prowling my veins, unchecked; after dark hours of regret at all the gardening sessions in my tiny backyard, chiseling through the thick river clay without wearing my surgical mask (but it was so humid and the mask made my face sweat and what about the neighbors, peeking between their blinds at the odd woman back there, look are her, gardening in a mask like a person dying of something…); after months of missed injections because I don’t need them, I feel fine, I feel fantastic, my joints don’t hurt at all and it will be flu season soon anyway. Wouldn’t it be safer to let my immune system surge back in all its overactive glory? Wouldn’t it be better?
And it is until my thumb knuckle swells. My neck goes weird. The migraines return. A tendon beneath my scapula hardens into a gnarled root that sprouts up my shoulder and into my head, sending its throbbing harvest around my skull. I close my eyes and abide it. I call the pharmacy. I order more injections. They come on a rainy day and I sit again on his side of the bed and sink the needle into my thigh.
The doctors say the molecules are so big the will not cross the blood barrier to any child, whether real or imagined, growing inside me. The next day, I bleed: thick, red uterine blood.
You may ask yourself what even is going on with this woman, and I do the same: why am I so anxious? Why has my body started ulcerating itself and turning my intestines to a painful, bloody mess? And why now has my pelvis also grown inflamed, the joint at the back where I didn’t even know there was a joint painful enough to leave me immobile? Has trauma from that traumatic love affair a decade ago insinuated itself into my cells? And why, if I’m now happy, is my body not?
As the doctors do, perhaps you don’t understand why one day my knuckle will turn red and hot and too tender to touch, and then the next day a knee, the third a tendon deep in my ankle. Perhaps you wonder about the garish bruises that come in waves, as if I’ve been beaten or in a horrible accident, huge purple marks that swirl with red and putrid yellow. Why, why, why? And is the pain as bad as she says? As real?
Who’s to say what really caused the miscarriage? These things happen. It is so early, so very early I have not even been to see a doctor, until I see an ER doctor, who silently searches inside me with a sonogram. There is nothing in your uterus, he says matter-of-factly and of course there isn’t, for it has all been slipping out of me now for hours.
You want it darker, Leonard sings. We kill the flame.
A statement, a question, a threat?
I fall asleep and wake up weeping. In every nightmare, my new, beautiful husband stops loving me. In every nightmare, he looks at me and does not recognize my face.
A statement, a question, a threat?
On a sunny day in an unspecific sometime between death and birth, I sit at a wobbly café table on the summer sidewalk and come into consciousness: bones alive with ache wrapped in muscle and skin. I drink a coffee that tastes of bitter chocolate and roasted nuts. The perfect sun. The bluest sky. These clouds which couldn’t be more dear, more lovely. The life of the small city happens around me. People walk and talk and smile and smoke and live. A striped storefront canopy snaps in the breeze. It is the sort of day that makes a person grateful to be alive.
Love is the force that inextricably tethers us to this life, to this day and these people and this place, to our own bodies and the bodies of others. There is something devastating about this love, even in its purest form. It is not strong enough to counter entropy, the slow roll into disorder and disease. It is not strong enough. A body turns to meat, a generation to dust. This minute and hour and day and year and epoch pass. Each and every one of us disappears. So too I love unbearably and, with my effort, my body destroys and creates.
The only time in my adult life I have felt well — as well as one can be — is when I am finally, blissfully pregnant, for this time the foreign body shuts me down, a new love to counter old ones. No immune system, no flames, no questions working their way in between my bones. Just one sweet mystery at my center protecting me from myself. I told him thank you before he was ever born.
I’m 35, and I bring our child home, finally here, finally named — Cohen, uttered as if in prayer, most perfected son, suckling on my swollen breast that aches with milk, as I sway in a rocking chair, the first song he will ever hear rolling with us as I sob, equal parts joyous and mournful, for I am able to see an entire sparkling kingdom laid before him and, at the same time, there at the very greatest distance, his death. Hallelujah, the song goes. Hallelujah. Hallelujah.