I failed all the classes I had syllabuses for my first semester at Lehman. No one knew. I pride myself in swallowing the remnants of a failed love. It is now a year post-undergrad, I have a pretty neat teaching job, a cool companion who is also a fire sign and a support system that allows me to be myself.. as Apple briefly tends to remind us how life can transform in a short period of time, I look back at my timeline of failed relations and say to myself maybe just that one heartache was meant to be.
I'm a social science researcher interested in identity development and self-determination, especially as these pertain to young adults with disabilities. I love the idea of a person knowing who they are, becoming their authentic self, and making their own decisions. For the most part, I believe, independence as an adult is hella important. Like, maybe the most important thing.
For me as a woman, for as long as I can remember I have felt I needed to prove my independence and prove I can stand on my own in all aspects of life. (My therapist has told me this hyper-independence is a coping mechanism. I’m sifting through it). But regardless, American society as a whole is very focused on this idea of independence and self-sufficiency.
I identify as fiercely independent and decidedly introverted, yet selectively social as hell. My husband of nearly 15 years would be the first to tell you that I do not like to be told what to do or how to do it, I believe I can do anything I set my mind to, and I am really bad at admitting weakness. I am a staunch feminist in many ways. I believe in making my own money, bucking the societal expectations put on women, not centering my whole life around marriage and having babies (though I chose to do both) while also maintaining a career.
But…(you knew there was a but coming, right?). On November 1st of 2022 I was diagnosed with stage 3 breast cancer. The day after Halloween, which we hosted at my house. In my second-to-last semester as a doctoral student. I was teaching three courses that semester. When my kids were nine and eleven and I was forty-three. Three weeks before our 14th wedding anniversary. And all of a sudden everything in my life to that point would be remembered as stuff that happened before my cancer.
Before my cancer diagnosis I had begun talking with a colleague about co-authoring a conceptual paper we were going to call “people need people,” named for a tote bag that I saw while sitting in a nail salon last summer. And aimed at convincing researchers and practitioners in our field (special education) to de-emphasize their obsession with preparing students with disabilities to be “as independent as possible” and to re-focus our efforts and the verbiage to accompany them to the concept of “interdependence.”
Don’t you just love when work imitates life? Or life imitates art? Or art imitates work and life? You know what I mean…
Basically, I knew in theory, at least as it related to the students that I have worked with for over 20 years, that that overtly Western, boot-strappy concept of “independence” is overrated. And quite possibly anti-humanistic in its very demands. But it took cancer for me to really believe it for myself. And a winsome little tote bag.
Humans are not wired to be solitary beings. None of us are entirely self-sufficient. Especially when in crisis. People need people.
Never before have I felt those words as viscerally as I have since I was diagnosed with cancer. “Any man’s death diminishes me, because I am involved in mankind. And therefore never send to know for whom the bell tolls; it tolls for thee.” Shit.
To kick off my cancer treatment I had 16 chemo treatments over the course of 5 months. Four doxorubicin treatments, a chemo medicine colloquially called the “red devil,” and 12 taxol treatments. Each one of them was traumatic in its own way. There is something uniquely disturbing about willingly putting poison into your body in the hopes that it will kill the bad stuff and spare the good stuff, while likely making your body so weak you may not be able to get out of bed for days in the process. And you’ll lose your hair (eyebrows and eyelashes included- you don’t realize how attached you are to those guys until they’re gone). And maybe your fingernails will turn brittle, and you’ll definitely have some brand of intestinal issue. And possibly mouth sores. And your brain will likely not feel fully-functioning for a while. And the exhaustion and body aches are debilitating.
It is a lot. And that was just the chemo. There were surgeries and radiation and endless lab work and doctors appointments; I’m still in the throes of it. But enough about the cancer treatment- my point about the shittiness of it all is that it may not have been bearable or feasible at all without my people. At the very center of my circle of people, I had my husband and family and friends to drive me to chemo and sit with me and take care of my children. I had friends to bring meals for my family and send cards and texts to say they were thinking of me and to take my kids to do fun things so they didn’t have to spend yet another weekend at home knowing their mom was literally in bed for the third day in a row.
One layer outside of my inner circle of family and friends are the nurses and doctors and others working in the chemo center and oncologist’s office. I have a whole epic poem I am writing about my chemo nurses, but in this space let me just say that those people are friggin’ angels on earth, for real. The aura of sickness and sometimes death that the people receiving treatment in chemo wards inhabit is palpable and the nurses there are as patient and kind and no-nonsense and efficient and wonderful as I have ever encountered. I stopped in to see my nurses a few weeks post-chemo and as I approached their area I teared up. As I spoke to them, the words “I miss you all” tumbled out of my mouth and I felt weird and dumb having said this to a group of people who I technically barely knew and who had pumped poison into my body for 5 months on order of a doctor because there was literally not another way to eradicate my body of tumors trying to kill me, not because they had elected to be my friends. But somehow, they had kind of become that. I laughed it off, but I did (and do) truly miss them. I had created a trauma bond with my chemo nurses.
Nothing bonds people like grief and trauma. That’s why grief groups and survivor’s groups and all kinds of groups aimed at supporting people who have been through terrible things exist–we need support from other people. And what better people to support you than others who truly understand because they’ve been through it too?
Trauma is a tricky bitch. No one wishes for it. But it teaches lessons. It creates bonds. And reminds you for whom the bell tolls. And it’s all of us, all at once.
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.
We were made to do life with other people.
We need the companionship, the support, and the encouragement.
As women, it's truly wonderful when we find those people who really understand us and love us, flaws and all. Some bonds are stronger than we could ever imagine. These people become our safe place.
We laugh together and cry together. The deep, loud laughter that is often accompanied by a snort is welcome with them. The overwhelming, ugly cry that possesses your body like a demon is welcomed. Your tears streak your makeup, dark eyeliner streaming from your eyes, snot flowing as if a dam broke.
You know it's OK. This friend is safe.
Bonds like this are a gift. These friendships are the ones that push us to be better people. They encourage us to apply for the dream job. They give no second-thought to you showing up on their doorstep in tears. They don't get angry if you call in the middle of the night. They tell you when you're wrong, but do so with love.
You may even tell each other everything; connected at the hip (as my own best friend says).
Life is messy. It's a true roller coaster ride of joy and heartache. Should you find that person who is willing to hop on that roaster coaster and do life with you, remember not to take them for granted.
True friendships between women are beautiful gifts. No mean girl moments, no judging, no drama, just people who understand and platonically love each other.
Everyone needs a friend. I'd venture it's safe to say everyone needs a best friend as well.
I know I'd be lost without mine.
Hi everyone!
My name is Heidi Hope, a recent graduate from Azusa Pacific University with a BA in English, where I discovered my love for writing and my desire to be the voice for the voiceless through the written words. This is my first post ever on this forum and my first time officially joining this incredible Harness team, so I would love to start off with a big thank you for having me in this community and giving me this opportunity to share my voice and passion for writing. I am so excited to dive in and I cannot wait to hear all of your reactions. I am also happy to take any commentaries or suggestions, so please do not hesitate to throw your opinions my way. As I am a writer with many hopes and dreams, there will be contents on many topics that I will deliver, so I hope that you all will enjoy them. Thank you again for having me on your team and I am overjoyed to begin. Here I go!
Gratefully,
~Heidi Hope