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When I dread something, some fond tune or another will often come to mind. Maybe it’ll be the Lucky Charms jingle—Hearts, Stars, and Horseshoes, Clovers and Blue Moons, Hourglasses, Rainbows, and Tasty Red Balloons! Hearts, Stars, and Horseshoes, Clovers, Red Balloons! This trigger could be nothing but whistling in the dark, or maybe it’s a plea for synaesthetic wholeness. Anyhow, I was singing this or another under my breath as I took the train toward our cabin north of the city. I was alone. I was soon to begin the run of BIBP treatments so many had in recent years, and evidence held I was dreading it. At that time, the belief was that only one kind of treatment was viable for BIBP. And terrible. I had seen people on this treatment—bedridden, weak-limbed, suffering what appeared to be total apathy. Even in the documentary I’d watched, which aimed at reassurance or optimism, patients were non-reactive to basic stimuli like the human voice, food smells, touch. The statistic, they said, of patients who complete treatment and fully engage again—as in work, have families, go on trips—was around .2 percent, or one in every five-hundred people. I’ve tried to be an optimist and a realist, meaning I wanted to acknowledge the worst and make good of it. I had only three weeks, so I felt a certain urgency to experience as much and as many varieties of known happiness before then. This was how I meant to do that.
I started by making a broad list of the greatest pleasures and most fulfilling experiences of my thirty-two years. I had given myself one day to do this, thinking I would be done, at latest, by lunch. It took me all day, using shorthand for things, like spag w/ lots parma and sex durg full moon. But when I turned out the light that night, exhausted, that’s when I really felt the kick of inspiration. I clicked the lamp back on, opened my notebook, made a note—fall leaves drinkg spicd wine cookies cemetery Boston—then turned off the light, turned back onto my side. After four or five repetitions of this, I finally just wrote in the dark, dropping the sheets of paper onto the floor. Layg gold leaf on paper w/o wrinkles, Dinner w/ Arthr Jap bar after his heart surgry/saki drunk, Fertility quilt expermts, Picked up Sasza fr humane socty her bald spot striped dog sweatr, Javi said I’m perfect strength for my hgt/likes small breasts w/ big nippls, Rooftop before hurrcn Sandy/flying Stop sign/candlelit bar fiddle music, oysters/view of ocean, Staten Isnd ferry champgne true friends, Ridng ovr Manhttn brg night sept11 memorial lights to back, Mom pecan pie red sweater stockings singing O holy ngt, Javi beautifl penis photo.
I should explain why I was alone in those days, since technically I was not alone. I had a partner, a husband I sometimes called him, who was, as much as possible, supporting me through this. He was unafflicted himself—a stronger immune system perhaps. His name was and is Javier. I was pushing him away, unintentionally I guess. Because I needed to see if it was true, that we go into illness alone.
My assignment for the second day was to select a number of these happy moments that I would mine, as I thought of it, pinpointing the crucial elements—the sensory essence, the exact time of year and weather in which they had occurred, and the precise location if that was vital to the experience. And I would finally choose which ones would be replicable—that I could experience one last time. That was why I had to hurry forward with the project—I would need time to plan, to acquire, to call and arrange things with people I hoped would be there for certain moments. But on that second day and with only nineteen days ahead of me, before my date at the hospital, I was already behind, and tired from the sleepless night. Why hadn’t I done this a long time ago? Or maybe I had done this and had forgotten, a journal filled with my life’s pleasures in a buried trunk—had I? I hadn’t.
After two cups of Medaglia d’Oro coffee and some rice cereal, I sat on the back porch that overlooked a weedy gully and the ridge over the canal. I surveyed my list. Other nighttime additions included the beach in winter. Ocean beach in San Francisco specifically, a cold, windy day with deep fog, a kiss from a boy, nineteen to my sixteen, as we sat on the hull of an upturned paddleboat. A dog, a spaniel, had run by and barked our kiss open, we were shy. And my first period, sitting on the toilet in my parents’ bathroom, with the wooden door that slid closed but wouldn’t fully latch—the muck was brown, not red, and I believed it had come from my thigh, through the fabric, because I’d had a rollerblading accident while wearing shorts that week. It took me three days to tell my mom, three days of constant anxiety in which I didn’t feel like I knew her or knew myself, but was nevertheless thrilled. And the week after Javi and I first met, those hot nights we laid on the roof of my apartment building kissing, his body on top of mine, the silver-painted tar hot underneath my back, cockroaches with their brazen skids bumping into us, and for once I did not hold it against them, their being cockroaches. Happiness.
But was any of this replicable?
I crossed out a handful of memories from these dozen or more pages and finally settled on the first one I would key in on—oysters/view of ocean. This could be done! I opened a brand new, unlined notebook and wrote at the top of the first page: #1: Oysters on rooftop by ocean. First experienced: San Francisco, 2009. I was satisfied with this, as if some of the pleasure had been revived just in the thinking of it.
My phone rang. It was Javi. A five minute conversation about my bike being left locked on the sidewalk and why I’d taken off so suddenly, him wanting me to return to the city. He thought I must be miserable alone up there, sulking.
“Javi-love,” I said with my tone of serenity, “I’m writing a list of happiness, I’m mining it out, you know, from my past, so we can do things together—special things—before you know what. Just give me two more days, ok, then I’ll come back.” I understood from his pause that he did not understand.
“Or I can take tonight’s train and be there before you go to sleep,” he said. “We can do special things now, right? Are you feeling any tiredness or anything yet?”
“No, love, that’s after the treatment starts.”
I ate a lunch of dry Wasa crackers and thought it was kind of ironic, the austerity, as I was writing about eating oysters on a rooftop over the bay in San Francisco, garnished with jalapeno salsa. There’d been sparkling wine too. But I wanted it this way.
Lucas and Petra had brought the oysters back from somewhere north of the bay, had maybe even plucked them from the water themselves. No, probably bought them directly from an oyster farmer if that’s what they’re called. They brought them back in a crate, I noted, followed by my thoughts on how it could be modified so I—we—could do it again, but in New York. I listed the supplies I’d need. The oysters could come from Long Island. I would need to decide who could stand in for Lucas and Petra since they were in Costa Rica now…or Panama. I made an approximate budget. After this, I moved on to sketching out some other scenarios. It was true that I saw something was lost as I modified them to my current circumstances, but even so, it would be better than attempting nothing. I worked like this all afternoon, sitting there facing the gully in my dirty white socks, with my crackers, selecting only the most doable pleasures with care. By 3 or 4 pm, I was only on my eighth, and could not get the chronology right—had our wine-drunk night at the movie palace happened before or after I took my nephew to the Christmas tree lighting near my brother’s house? Did it matter? I kept on until I had run out of food and coffee and took my notebook with me as I walked down the road to the small market in town, trying to write as I walked. I took my time and even sat on a bench by the pond for a few minutes, where some geese were crossing the lawn like search-and-rescue dogs on a scent. It was early fall and only one tree had begun to change, across the pond.
#9: Bike ride along Hudson/Alex. He was standing with his hands in his pockets and even before we said hello, I thought: I can’t believe he still owns that same sweatshirt. The sun hit his greasy hair and blue eyes, I realized he had some freckles. I hadn’t seen him in 7 years.
#10: LSD trip with Marta. We were watching two small Latino men dance on the beach, they were wonderful dancers, the sun was on the horizon, we watched from afar in awe and made running comments to each other. Then Marta realized and pointed out they weren’t dancing at all, but flying a kite, and weren’t so graceful after all. That didn’t change the beauty.
I was beginning to see a pattern in my happiness, my past happinesses. They were always lit by either bright sunshine or dim, colorful lights, like those in an old movie theater lobby, of Christmas trees, or in the East Village Indian restaurants. Also, I was never alone, but never completely connected either. The happiness moment, joy if you will, could be pinpointed to a feeling of stepping away from those present. Of watching people walk away or approach, watching them when they were unaware. Or turning my own back toward the beauty, if only for a moment. And the sensual was usually there, of course—food, alcohol, sex, entertainment, but it was all in the anticipation. Even the discomfort of hunger, a chill, intense desire, fear of loss—it was all part of the pleasure. So long as it was fulfilled.
I had already accepted that I could never relive those most precious of moments, like the one on the roof when Javi and I were just getting to know each other. Instead, those more physical or more comforting, I could put my stock in them. The next day’s assignment would be to begin the actual logistics, and to think realistically about a budget and a time frame. I could afford to spend three thousand, thirty-five hundred at most. Javi and I had shared savings in addition to my personal money, but I didn’t want to touch that. After I finished that day’s work, I would whittle my ten to fifteen sketches down to the best, most realistic few.
Back at the house, I saw Javier’s brown leather sandals on the porch steps. Such a mundane sight, but accompanied by joy and dread at his presence.
“Cat,” he said so very tenderly as I came through the door. I wondered if he had read any of my crumpled nest of papers, but it didn’t look likely and that was never his way. Our cloth grocery bags were on the counter, full of lush sprigs, bottle tops, a baguette, and Javi was beginning to prepare some kind of meal in his slow, methodical way. He had already chopped an onion and appeared to be finely mincing olives.
“I’m making your fav-o-rite,” he sang with a forced giddiness I knew he wanted to make real in us both. “Can you guess?”
A lot of things came to mind. My brain was flexed for this, for remembering favorite things. But I was unplayful. “No, what is it?” I said.
“Pesto di olive verdi! On top of… I don’t know what, maybe on la baguette? Or some soba noodles?”
“Oh, I totally forgot that,” I said out loud but to myself. I went to my papers and rifled through them, to add soba noodles with peanut dressing, eaten that cold night in a borrowed car in a Safeway parking lot, Charlie Parker on the radio.
After our dinner of pesto, grassy goat cheese, fig jam on baguette, I went back out to the porch alone. I had a glass of the white wine Javi had brought and which I appreciated even if I preferred to drink it by myself.
I finished writing out the story of the time I tried to give myself corn rows with the help of my junior high school friend Annie. And another, of my first drink in Paris, age twenty, it was something bright red and fizzy—a kir royale?—in a bar with a klezmerish band playing, confusing bathrooms down in the basement, a pair of beautiful leather gloves I found sitting above the sinks, which I stole. They were of blue leather with a fine diamond-checkered pattern on the inside. I never felt guilty about the theft at all. I now had thirteen experiences mined that I thought reasonably replicable. I opened my computer and clicked on my Google calendar. I stared at the rows of boxes, mostly empty from here on out.
In bed that night, Javi wanted to watch a movie, but I hectored him about his schedule and how much time he could take off work until he didn’t want to talk to me anymore and turned off the light. For the past seven years since college, we had both been working full-time—I’d been an office assistant at an architecture firm then a metal fabrication company in the Navy Yard, and he taught engineering to high school kids. He could not really take any time off before the winter break, just a long weekend, four days tops.
In the morning, Javi was gone. I knew he’d either gone to the coffee shop in town or back to the city; I wasn’t sure which one I wanted. I dressed and left toward town, feeling a little guilty about how I’d taken him for granted. I passed over the canal to reach a mailbox so I could mail the rent check for our apartment in the city—it was made out for six months’ rent so I could be sure we wouldn’t run out of money. Then I went into the coffee shop to look for him. I didn’t see him until I turned around to leave—there was his button-down denim shirt and black hair long enough to curl at his collar in the back. He was at the table by the window and I was surprised I hadn’t see him when I’d walked in. I went toward him and as I stood at his side and he looked up at me, I saw that it was not him. Instead a man in his forties with greys in his stubble, quite sad-eyed and lost looking. In a different story, he could have been my man, but in this one he wasn’t, and was ugly for being the wrong man.
I walked the extra loop, over the town’s pretty little bridge, along a trail dogs are always to be seen on, mostly with owners, sometimes not, and then back to the narrow road our little cabin is on, hidden by trees, a pile of stones indicating the path to our door. I’d once seen a celebrity on one of these forest paths, with her dogs and children. She’d looked nervous and tried to hide her face in her black hood, avoiding my cordial passers-by hello. Thinking about her then made me think about the week I’d had the sense my life was about to end, five years before. The feeling had come to me as I was walking across a stately courtyard on a venerable old college campus I was visiting. I looked at the simple wooden swing hanging from a beech tree, then up at the cloudy sky, and in an instant I did an account-taking of my life up until then and immediately concluded—yes, it’s been enough life, there’s been some good material, if I go now… fair enough.
When I got back to our cabin, I packed up my notebook and computer, my clothes and the leftover food, put on my city shoes and left immediately. I’d go back to the city, to our apartment on ugly Huntington Street, across from the loud elementary school kids were bussed to, and the park with all the dead trees. I realized I was feeling panicked about Javi—that he would leave me now, and I would have no one with whom I could reenact my great moments. Suddenly I could see myself eating Moose Tracks with no one to smile at, or snow shoeing alone across Prospect Park, without any snow, or anyone to smile at. I checked the train times just before I left and saw that the next train was delayed by two hours, nothing now before 3 pm.
I took my shoes off again and sat back down with my computer and drafted a few emails to friends, opened and stared at my calendar for a while. I further fleshed out a few of the memories on my list, but found now that the more I worked it all out, the less great the moments were starting to seem, the happiness of the memories somewhat dulled. Underneath the happiness mines there were other beds. In them, deposits I hoped to bury to erasure. I acknowledged this thought then dropped it. I felt in despair about Javi. About myself. I Googled BIBP treatment message boards to see if there was anything new. The Google search brought up a page I’d never seen before with the byline: NO BIBP—Life Hack! Self-treatment DIY anti-BIBP self-surgery. I clicked on the url.
Conditions loosely clumped together under the umbrella term of BIBP are rampant in the Western world and in the last year, statistics show the US at the top with 12 million sufferers. That means nearly 10 million BIBP treatments have been performed thus far. Despite what the US Dept of Health and Human Services says, the microscopic phytoparasites that implant themselves beneath your jaw in the adipose tissues near the sternocleidomastoid muscles and around the submandibular and tonsillar lymph nodes CAN be surgically removed and the pervasive but high-risk (re future quality of life) treatment CAN be avoided. Surgery requires minimal training and can be performed at home with the appropriate equipment. The importance of thorough lymphatic drainage cannot be emphasized enough. Below is a list of links for DIY surgery and patient care. Please explore with discretion and remember that your caution is the key to enabling rather than disabling this treatment alternative for other sufferers.
Not only had I never heard of a surgery for BIBP, I’d never heard of “DIY self-surgery” for anything apart from maybe warts or cyst popping. This possibility gave me a rush. I opened all of the links and examined the step-by-step photo instructions on one site, then the Youtube clips posted by someone called TotalBodyHackr. I decided I would try it. I texted Javi to apologize for my behavior and told him I had great news and would be back to the city the next day to share the news with him. I turned off my phone before waiting for a reply—I would need total focus. Then I jogged to the village to get to the grocery, hardware store and pharmacy before they closed. I bought a #15 X-acto blade with extra tips, hydrogen peroxide, rubbing alcohol, Krazy glue, a bag of ice, some gauze and paper towels, a thermometer, antibacterial ointment, cannula tubing and a small pair of scissors. I also bought a handful of shiitake mushrooms to practice the incisions on as one video showed. All I could think about was how I would now never need treatment, I would not become a burden, Javi and I would not lose each other.
I won’t go too deeply into the details of my procedure. I began at 7 pm, just after dark, and did not finish until after midnight. And yet, the hours passed like minutes and despite the pain, I enjoyed the process—I was able to be outside myself, completely immersed in something. I had to figure out what my adipose tissue was, where my sternocleidomastoid and platysma muscles were, identify my thyroid notch. Here were my lymph nodes, and over here was that something else. Watch out for the jugular. Watch out for the mandibular nerve. Luckily there were plenty of good illustrations on one of the pages. Luckily I had a bottle of vicodin we’d never thrown away from Javi’s broken toe, which I could take as soon as I was done. There was a lot of liquid, as was to be expected, some of it blood, more of it yellow-clear fluid. It drained beautifully down the cannula tubing and into a juice bottle. The body, I thought, is an amazement. In the early morning hours, once I had bandaged my whole chin and neck area, I fell into a deep sleep that lasted until the late afternoon. When I awoke, I drained some more, took another vicodin, rebandaged, and then looked in the mirror. My face was a bloodless white and surprisingly bloated. I could not smile or turn my neck, but that was to be expected. There was really no way of knowing whether or not the procedure had worked—time would tell—but I felt optimistic. I decided to at least revisit the slideshow that had been so helpful, reread the note about recovery and examine the photos of the model patient. But when I opened my browser, the website was gone. I checked my history and clicked on the links, on all of them, one after the other. Every one of them was now defunct.
There was a train leaving for the city in a half-hour, so I rushed to be sure I’d catch it, leaving the place a mess. Once I’d settled in my seat on the train, I checked my phone. I had a dozen or more missed calls, texts and emails from Javi. I stifled my overwhelming sense of guilt. I couldn’t really talk, so I wrote another text: On the train, coming home. Will be back by 7 or 8. I’m so sorry for my behavior & I love u so much. I didn’t want to give away what I’d done. Because I thought the procedure had gone well—I’d followed everything precisely and had drained abundant fluid—I wanted it to be a surprise to Javi. I spent the rest of the ride dreaming of his happy reaction, thinking how much I loved him—more than I’d ever recognized?—and of all the things we’d be able to do together now, like try for a kid. I ignored the reality that my self-operation might not have worked, in which case I’d still need the BIBP treatment, or the possible repercussions of my surgery—an infection, dramatic scarring, nerve damage. Or that Javi would find my wounds and what would likely be a somewhat distorted jaw line repulsive, unloveable. I didn’t think about any of those things, only of the happiness I was sure Javi and I would share, unforeseen happiness, and his glad surprise when I came through the apartment door, the fortuity of my having found that website during its brief appearance online before it was confiscated. My survival, I would call it from here on out, my great escape.
Soon enough my train pulled into Grand Central and I caught the 6 train toward Union Square, where I’d get the L to the G. On my walk home from the train, I decided, I would pick up a bottle or two of wine and a package of Oreos. Looking around at all of the people on the platform waiting for the L with me, watching the 8th Avenue-bound L come and go, the human rush through its doors, I thought about the game you play with your hands, Here’s the church, here’s the steeple, Look inside, see all the people. Close the doors and hear them pray, open the doors and they’ve all gone away. It gave me a painful foreboding. It didn’t even make sense, really, as a faith chant—do they only pray when no one’s looking? Is that really them praying, or some other white noise, like a conch? And why do they so suddenly flee the church—is it fear, or an act of terrorism?
On the crowded train, I was for the first time aware that people were looking at the bandages on my face and neck with curiosity. I did not really mind. More so, the pain was beginning to intensify. I’d take another vicodin when I got closer to home. For a moment I thought I saw someone with similar bandages across the train car, and I tried to move toward them for a better view. Maybe I could talk to them, exchange emails. We could post our own tutorials online, help other BIBPers. But it was just an off-white scarf around the woman’s neck, tucked close under her chin. I would pick up a bottle or two of wine, maybe one red, one white, Gato Negro, and a package of classic Oreos cookies, a big package, not a one-sleeve box. I wouldn’t be able to chew them, but Javi could. Oh oh oh, ice cold milk and an Oreo cookie, they forever go together what a classic combination…when a dark delicious cookie meets an icy cold sensation, like the one and only creamy crunchy chocolate O-R-E-O. I’d go home to Javi. Javi would open the door, would hold me. Tiny dancer, he’d say, like he did on the roof that time with the cockroaches.