FUND WHAT YOU FEAR
by Marnie Goodfriend
I lie in bed, my eyes fixated on the fruit trees outside my bare windows. I do not have insomnia. I am bone tired. Recently, my pain is nocturnal. My body waits until my head makes contact with the pillow before fireworks burst in my pelvic cavity. I bend my knees like an upside-down V and press my feet into the mattress. V is for vulture. violence. victim. vampire. vagina.
The other day, my friend Melissa told me about the fund-what-you-fear philosophy. Her words bloat several text bubbles. They remind me of our distended stomachs: agitated, acting out, hardened. There’s something like less than one dollar a day that goes toward endometriosis research and when the medical world is predominantly men … it’s easy to see why they never push money towards diseases that only affect people with a uterus.
Is this a philosophy or just reality? I google “Fund What You Fear Philosophy.” The first entry is the 80s English pop duo Tears For Fears’s Wikipedia page. Other entries include a punk band, a first-person shooter video game, and a 2013 British psychological horror film where the characters are trapped in the same place regardless of what road they take to escape. Knowing these subjects weren’t what I was searching for, Google suggests I drop the word “fund.” “Missing: fund | Must include: fund.”
I met Melissa while interviewing sources for an article I was writing about energy work and endometriosis. She told me it took twenty-one years for her to be diagnosed. At that point, endo had eradicated her right ovary, covering it with black disease her surgeon described as “rotten fruit.” She had a tumor on her right fallopian tube, two endometriomas on her left ovary, clusters of adhesions on her diaphragm, eighth rib, abdominal sidewall, bladder, uterus, and lower pelvis. The disease had chewed a hole through her rectum requiring two layers of separate stitches.
My boyfriend holds onto my left arm; the other dangles off the bed, clicking a control button up and down, the settings high medium low. For other interviews, endo women have shared photos of burn marks on their bodies from extended use of the high setting. If I fall asleep with the red light on, I worry the bed will go up in flames. But sleep never comes to me. I coax my legs to stand and walk to the living room couch which doubles as a sickbed, the heating pad’s electric wire dragging behind me like an umbilical cord attached to no one.
Melissa’s diagnosis is horrifying, but it does not shock me. It reads like one of my own post-op reports, cysts and adhesions covering my pelvic region, digestive tract, and rectum. I stare at my sweatpants’ elastic waistband cinching my stomach and wonder what’s growing inside me right now. Which of my organs looks like rotten fruit? Our front yard is littered with deformed oranges in black, gray, and green mold fallen from a neighbor’s tree. At night, rats feast on the decomposing fruit. We pick them up, but there are always others to replace them.
Melissa and I are getting to know each other the way people with chronic, invisible illnesses do. Once alone, we now know someone who understands our pain, confusion, anger, isolation. We stick together like magnets, offering up our insides, in case one of my pieces fits with hers and we discover something new that could alleviate some of our pain. She is a painter and educator. We are both accidental activists, doctors, surgeons, psychiatrists, social workers, researchers, nutritionists, healers.
If a room of men in powerful positions who are in charge of allocating funds for research on diseases or treatment, they are more likely to fund things they can empathize with. This isn’t new information, but knowing it is unjust, someone gave it a name. I take a highlighter to it, write it on a sticky note. Every time we are seen, I underscore the words so they will glow in the dark. I imagine a million tiny pieces of paper illuminating unlit hallways from beds to couches or guest rooms across the globe. We are guests in our homes and in our bodies. We have no control over when the pain arrives or checks out.
Sometimes I wrap the plastic heat around my stomach. Other times my pelvic muscles cry for me to loosen them from their vice grip. Recently, I’ve been fastening the hot rectangle between my legs like a giant maxi pad. In the medicine cabinet, there are countless bottles of antidepressants and opioids in fuzzy peach, butter yellow, and baby blue pastels. I am not sad or bereft. The capsules are dress up costumes of people I don’t want to be. They’d grow fuzz inside my head, mask the pain, my personality, creativity, identity. Their child safety locks go unchallenged.
In 1990, Ellen Goodman wrote an article about a congressional hearing of the House subcommittee on health and the environment and how in scientific and medical research, testing is primarily done on white male rats. Females are “usually excluded because of what might be called ‘raging hormonal imbalance.’ Not only are men studied more, so are their health problems. All in all, about 13 percent of NIH’s $5.7 billion budget goes to study the health risks of the half of the population that is female.”
In the living room, I prop myself up with a pillow to write a fairytale about a place and time when there was no pain. The truth seeker in me is offended by my attempt to wring out the blood stains and backspaces to the beginning when women were set on fire for claiming to be sick.
In another article, “Endometriosis Sufferers Long Blamed,” Dr. Camran Nezhat, a Stanford University gynecologist, suggests that our 4,000-year history of blaming women for their “angry uteruses” has perpetuated the medical belief that pain with menstruation is normal.
My boyfriend pads into the room and rests his hand on my forehead. You okay? he asks. Mmm hmm. Okay, I nod. He’s told me he can see the pain on my face even when I try to hide it. I fear that if I complain too much, I’ll sound like a hypochondriac or he’ll think that I’m depressing to be around. Too much time on the couch and I’ll appear lazy or privileged. How people imagine bedrest: woman in silk pajamas eating pints of White Halo, online shopping, writing in her journal while binge-watching insert your favorite show. What bedrest actually looks like: unshowered woman in ripped sweatpants not sleeping, not eating, not journaling, crawling out of bed to press her head against the hardwood floor when the pain is too much.
According to Dr. Nezhat’s research, women were strapped into straight jackets, sent to asylums or prisons and subjected to leeches, hanging upside down, and bloodletting because they were attention seekers, experiencing “love sicknesses,” nymphomaniacs, drug addicts or suffering from mental illness. Others were deemed witches and burned at the stake. It is now believed that these women most likely had endometriosis.
I guess I never directly answered his question. I am not okay. What I meant was I will be okay because I can’t not not be okay.
Plato believed a woman’s desire to have sex was intrinsically tied to her innate need to have children. If she does not fulfill this desire, the womb will wander around her body “like an irrational, roaming animal” that will cut off her breathing. In the 1700s, this suffocation was rebranded as hysteria. Women were still hysterical until The American Psychiatric Association ceased using the term medically in 1952.
My GI doesn’t think the burning sensation I liken to someone pouring acid on my heart is endometriosis-related. He suggests I go to the emergency room the next time I have a flare-up and buy some Miralax, the equivalent of liquid Tums, from Costco. The one with the purple cap, he adds as he pats my back on our way out of the examining room.
The Ob/Gyn says he can’t see it, but my endometriosis has most likely grown back because I haven’t been taking care of it. When I decline his script for the hormone injection Lupron developed for chemotherapy, he shrugs his shoulders and suggests pregnancy because it would be the best of both worlds. He never asked me if I wanted to have children (I do), so I have no idea what two worlds he’s prescribing to all of his endo patients.
In pristine white scrubs and a halogen light above her head, my urologist Christine looks like an angel. A decade after my diagnosis, she is first to acknowledge my pelvic floor myalgia, another condition common for those with the disease. Reading the prescription for daily doses of Macrobid in my chart, her forehead wrinkles like a folded fan. Stop taking that. Immediately. And while she can’t help with my endometriosis, I should make appointments with other GIs and Ob/Gyns who have better advice to give. We have to work together as a team. It’s both a pep talk and an admission of what little information is available to women, even female doctors.
The Endometriosis Foundation of America confirms that pregnancy as a cure for endometriosis is a myth. There is no cure for the 200 million women staring out their windows at night while others are sleeping. Many who had taken Lupron developed osteoporosis, permanent joint pain, and nerve damage. A few days after my Ob/Gyn appointment, I read about a woman in Atlanta suing the pharmaceutical companies that manufacture it when her body began attacking her bones after two injections and is now confined to a recliner.
My pain comes in waves, small ones that break into white water before swallowing the shore. Other times they are four-to-six footers, rising, curling into themselves. I paddle wildly to get on top of them, stand up, and ride safely to land. Instead, they pull me under, dragging me like a rag doll. Suddenly, I am without breath and it feels exactly like almost choking to death. I struggle to resurface and find air again. When I do, my mouth opens wide to let all living things pass through—minnows, clams, stingrays, jellyfish. I breathe sharply like a black key, slippery, discordant, jarring, burning. It is my siren song.
Melissa sends me a Facebook group invitation connecting me to 50,000 endometriosis sufferers. Late at night, I stop writing stories and read all the things I could have done to receive better care and take control of my condition. It’s my daily shaming hour. If only social media existed back then, maybe I would have been able to have children. Maybe I would have slept more nights than not. Maybe it could have is the most painful symptom of all.
It’s five in the morning, my boyfriend tells me. In ninety minutes his alarm will fire. I follow him back to bed, grateful he is warm and there is no fire. I lay on my side, abandoning my heating pad to watch him drift into sleep like a dream. I am still wide awake.
Marnie Goodfriend is a writer, activist, installation, and social practice artist. She is a 2018 VCCA fellow, recipient of the Jane G. Camp scholarship, and a 2016 PEN America fellow. Her memoirs: Birth Marks, a coming-of-age story about a black market baby illegally sold by an infamous baby broker, and The Time It Takes To Leave My Body, chronicling the double rape of two young women by a serial rapist dubbed The Top Gun Rapist, are forthcoming. Her essays, articles, and other writing appear in TIME, Washington Post, The Rumpus, and elsewhere. Marnie is essays editor at The Nervous Breakdown.