I can’t pin down exactly when it started. I think asking that question is like asking the Earth on which rotation exactly did the humans stop being casual participants in its orbit and begin their attempts to rule and destroy its surface. An impossible ask, really. I will never know when my body’s creations stopped being, on the whole, kind. I didn’t know then to count the good days before they became scarce.
I don’t think there is a beginning. But I remember the moments I started noticing something had changed.
I’m fifteen. I think we’re starting to get closer to the AP tests and I’m spending all my free time devoting myself to my first exam: AP European History. The class itself is structured in the most boring of ways, but I love the complicated and messy histories of the people who were so certain their lifestyle was better than the rest of the world’s, they spread it everywhere. I would be studying this stuff even if I didn’t get a grade for it.
I’m in the classroom, sitting in a small group, learning something, I think. Maybe modern? Maybe an activity? I don’t know. I should pay attention, I want to pay attention, but all I can think about is the deep ache in the pit of my stomach.
Is it an ache? That’s not the right word. It doesn’t hurt like that. Nothing sharp and distinctly painful. There is something inside me, sapping my energy, melting my thoughts, leaving me nothing but that deep nothingness, eating me alive.
A parasite, I think. I’ve learned about them in biology. It must be a parasite. It’s the hour after lunch. Maybe I ate something?
Keith makes eye contact with me in the desk in front of mine. Somehow, I meet his eyes through the haze I’m currently sitting in. “Are you okay?” he asks.
I look back at him, words getting stuck in my lungs. My body is feeling everything and nothing, buried in the black hole that’s in my stomach. That’s it. Not a parasite. How could I be so silly? It’s a black hole. I watched a video once, where they said if you fall into a black hole, your body gets both compressed and stretched in infinite directions. I can feel the compression starting in my core, and my brain feels impossible to place, stretched into a form unrecognizable. I’m everything, and I’m nothing. A contradiction in every format.
“Are you okay?” he asks again. I can’t tell if it’s been minutes or hours since the last time he’s said something.
Perhaps I could’ve lied. If my brain could’ve thought enough to get there. I shake my head.
I stand, and the world struggles to reorient itself to my new position. I make my way over to Mr. Harris’s desk and tell him I have a stomachache. He writes a pass to the nurse without question. I stumble may way through the long hallway and to the front office. I’ve never visited the nurse’s office before, and I have to ask the secretary for directions. Down past her desk. A left. Second door with glass window next to it. Can’t miss it.
The nurse gestures me towards a bed, and I lay in it for barely a moment before my stomach realizes that it can’t handle whatever’s happening anymore. I scramble to the bathroom and kneel in front of the toilet. My lunch pours back into the bowl.
I rest my head on the porcelain, no matter how dirty I know it is. Perhaps my brain is melting. Not a blackhole then. I must be overheating. It’s that global warming and I am the Earth. I had been a normal body for fifteen years, and I am now careening towards a fiery death, caused by something I cannot stop.
It’s only later, when I take a shower after my Mom picks me up, that I realize I’d gotten my period somewhere along the way. No parasite, or black hole, or global warming. Just a period. A normal period. The same thing my mom gets and my sister gets and I’ve gotten for years at this point. When I tell my mother later, she reassures me: it’s just cramps. Women in my family have gotten bad periods for years and I am the latest victim. The pain is just in my head.
I’m embarrassed that I had to leave class over something so… typical. No one talks about these things. No one’s supposed to notice.
The same pain comes every month after. I’m sixteen and seventeen and eighteen and it is always there. It is normal, even if I don’t know if I can live through it. It should be something I can control, and instead, I can’t think about anything else.
I am nineteen when I learn that I can solve every problem I have. I wake up at five in the morning. Before the sun even gets up. I go on a six-mile run. I only notice the blood when I’m back. No pain at all. In the years prior, I’d tried yoga, and meditation, and heating pads, and taken so much Tylenol, but this, this is the only way that’s ever solved it. It’s like being stuck on puzzle for four years, only to find the solution was with me the whole time. I’ve cracked a code.
Here’s the answer, as I’ve learned it: no oils, no salt, no dairy, no gluten, no fats, no carbs except vegetables. Breakfast is a smoothie made of low-calorie almond milk, half a banana, and almost a whole box of spinach. Lunch is a cup of steamed vegetables. Dinner is tofu or boiled eggs. Exercise off every calorie and then some. At least six hours Anything else is sleep or school.
I weigh a little over eighty pounds. I run a little over 90 miles a month. I eat a little under 1000 calories a day.
And I still get my period. My body is determined to bleed, it seems. But when it comes, I can barely tell. No longer do I bleed through two pads in an hour, or cry on the bathroom floor, or feel like my head is spinning into nothingness. It’s just normal. I feel nothing. I run six miles, and fuel myself on just a few bites, and that’s all I need.
Now I’m the lucky one among my small group of friends. I never complain about cramps or have to take a Motrin. I am thin and fit and for once, I have a full life. Ignore the three times I sprain my ankle in a year, ignore the way I push away my friends and family, ignore the way I pace around my room and do jumping jacks to meet the number on my watch and wear thick clothing to keep myself from freezing in the Phoenix sun. My body doesn’t put me through hell every month. If the answer is a little taxing, it’s better than having nothing.
But even this perfect solution proves itself flawed. I turn twenty. School ends for the summer. I can’t work in six hours of exercise anymore. I binge eat on the weekends, and then during the week, and then every day. It’s all the food I’d tried to deny my body. I gain all the weight I’d lost. And the pain comes back, just as strong as before. Again, I can’t control my body enough to keep the pain away. Again, something that should be normal begins to take over my life.
The pain takes more years of my life. I am twenty-one, months away from twenty-two. I’ve graduated college. We are living through a pandemic. My periods go from bad to worse. I spend two weeks out of the month so nauseous I can’t move. I try training for half marathons, and but my running is sporadic at best. One week, I can fourteen-mile-long runs. The next, I can’t walk more than six steps without throwing up. I sleep for fourteen hours a day, and I’m still so tired, I can’t make it through a single meeting.
The worst day begins with me lying in bed to try to postpone the inevitable. I can feel myself bleeding, but if I don’t stand, then maybe I can prevent the pain. Maybe it could be all in my head.
It lasts about ten minutes before I have to run to the bathroom. When I’m done vomiting, I curl into a ball on the floor and sob, trying to convince my body to stop the stabbing, twisting, churning feeling in my stomach. This must be what dying is like. I wish this was what dying was like. Just let this kill me. If it kills me, I’ll be done. I’ll be free. That’s all I want. I want it more than I want to live. I want it more than anything.
I wish it was a parasite. Or a black hole. Or global warming. Those all come with death attached. This nothing, this terrible, terrible normal thing, isn’t going to kill me. But it will take my life.
I curl my fists into my sides and my body into a ball. The cold tile of the bathroom floor presses against my skin and it burns so bad it makes me vomit again.
If Keith had asked me now if I was okay, I don’t know what my answer would be. I should be okay. Everyone else seems to be okay. But it’s not. I can’t breathe without vomiting and I can’t move without contractions ripping through my uterus and I can’t do this. It can’t be this way forever. I can’t let it.
On April 7th, I go to my first doctor’s appointment. I tell the gynecologist everything from when I was fifteen to the worst day. I tell him about the years I’ve spent curling on any and every bathroom floor. I tell him how my body hurts so bad, I think I’d rather die.
He tells me he wants an MRI and ultrasound and the name of a physical therapist he recommends. He gets me a copy of The Pain Management Workbook and recommends an anti-inflammatory diet. He schedules a surgery for June 31st.
He also tells me that there is a chance they won’t find anything. That I’ll be perfectly normal beyond the pain. But that is not the end. When the MRI and ultrasound come back clean, he reminds me of this. We have to keep moving until we get to the bottom of this. I listen to him. If there’s a chance there’s nothing, there’s a chance there’s something. I don’t know what the odds are, but I’ll take anything. I need an answer, any answer. I need to know that I’m not crazy. It can’t just be in my head.
On the morning of June 31st, I make my way to the hospital alone. The doctors explain that it’s a simple laparoscopic procedure. They’ll use small robotic arms to cut into my abdominal wall, and if they find anything they’ll remove it. I sign a few papers, and I’m prepped for surgery and wheeled into the operating room. My heart races in my chest, for the first time, considering what the odds mean. What do I do if there’s nothing? How much longer can I fight this?
They introduce me to the surgery team, lift me onto the bed, and put a mask over my face. I take a few deep breaths and wake up to my doctor at my bedside, telling me that hours have passed since the last thing I remembered.
He is saying something, but I cut him off. “Did you find anything?”
He smiles, and nods, and begins to tell me about the spray of black pockets of blood they found covering my uterus, and the surrounding organs in my abdomen. He tells me that they cut it out, and they’re getting it tested to be sure, but from what they saw, he suspects endometriosis.
It takes another four hours before I leave the hospital room, and much longer before I start feeling better. I spend the next two weeks bed-ridden, waiting for my scars to heal. I can barely stand to go to the bathroom, and I’m eating mostly soup and bars. My stomach can’t digest much of anything without painful bloating.
Recovery is not easy. I can’t stand straight, or sleep in my bed, or run.
And it does not matter. Because I have an answer. I have endometriosis and early stages of fibromyalgia. And that’s enough.
In the months that follow, I learn about chronic illness. I learn that my pain is not normal, but it is common. One in ten women get endometriosis. Of those, one in three end up with fibromyalgia. I couldn’t control my body because the endometrial tissue infecting it would refuse to let me. I am not weak. It is not all in my head. There are pictures the doctor gave me. Little black gunpowder, held in place by fine white webbing. This is it. This all my sickness.
And now it’s gone. Now I can live.
That’s what I think at first at least. Like so many times before I convince myself there’s an answer to all of this, that I might able to live normally, and, like so many times before, my body is dedicated to prove me wrong.
I begin flaring barely six months after surgery. Every month that passes, my flares get closer together. It’s been less than a year, and signs point to regrowth of my endometriosis. I had been told that some people (in fact most people) need multiple surgeries, but I’d thought I’d be lucky. I thought I had been done. I forgot that chronic means always. That means it will never leave me.
I can’t place the beginning of my illness, and there is not an end to it either. I will live as an infected body for all my days. I won’t find freedom from sickness, because it simply does not exist. It is just a part of me. Like my hair or my eyes or the way I keep trying to control things that aren’t in my hands.
My endometriosis will not end. I can’t do anything but live with it. And most days, that is enough. Not always but most.
