The Starfish, or, Why I Didn’t Name My Tumor
by Martha Grover
My counselor once told me that my tumor, the tiny tumor on my pituitary, was not me. Actually, what she said was, “You are not your tumor, Martha.” She was right, I am not my tumor. But she was also wrong, because the tumor is most certainly me. I decided in that moment that I didn’t like her.
That particular therapist is now long gone from my life, but I still have my tumor. It’s still there now, somewhere on my pituitary gland, causing problems. Surgeons tried to remove it twice and failed both times.
When I am old, my body will tell a story. Perhaps each body part will tell a different story. As I write this story now, I practice editorial surgery. Or, more to my taste: new cells are born, and the old cells die.
I was 28 when I first found out that I had Cushing’s Disease, a rare endocrine disorder. And I was vain in the way that many women are vain. I hated my body in the way that many women hate their body, or parts of their body. At the time, however, I used my body for work at a grocery store, and its presence and condition were always in my thoughts. Yes, my hair was falling out, but I blamed it on the baseball cap they made me wear every day. Yes, I’d been gaining weight, but I thought maybe I’d been eating too many of those free daily pastries in the breakroom. I’d read Sinclair’s “The Jungle” in high school after all, and I still remembered his descriptions of slaughterhouse workers, their stoops and injuries, the way that work made their bodies conform to its function rather than the other way around. Why was I any different? My body had already suffered an accrual of indignities under capitalism: the insistent ache in the small of my back, the weakness in my thighs from constantly bending over a counter. Then there was the deep gash in my hand. I got it while cutting an 80-pound wheel of Parmesan. Seven stitches. I still feel numbness when I run one finger along the tiny scar on my left thumb.
In college, for a few years I worked at an Italian restaurant with my sister. In our job as bussers we had to carry heavy metal pitchers round and round the restaurant, filling up people’s water glasses. After the first day, my right hand had a deep red crease in it, painful to the touch. “Don’t worry,” my sister said. “You’ll get a callous.” She was right. After just a week, on my right finger, my body grew a callous so thick that it stayed with me nearly a year after I’d quit the job.
Though my work at the grocery store was not nearly as gruesome as that of a slaughterhouse worker still, on duty at the cheese counter, I felt its toll; my body moved in a clockwise direction, eight hours a day, five days a week. I cut cheese from large wheels into smaller pieces. Five and eight dollar wedges of Manchego, nine and ten dollar chunks of Brie. I was a widget, a human cog. No wonder I felt shitty and tired all the time. Of course I did.
But then, when I was diagnosed, a metaphor for what was happening to me fell from the sky. It was the Starfish. What was particularly interesting to me was that you can divide a starfish into smaller pieces and it will survive – grow new limbs even – become another new starfish somehow. I was mystified that an animal could survive autonomously from its other half, or parts of itself.
How can you survive under these circumstances? How can you thrive in this environment?
I once was fucked as if I were a dead person, as if my body were a thing, my vagina a hole in the wall. As it happened, as shocked and horrified as I was by this man’s aggressive fucking, I didn’t entirely disassociate. I didn’t have the experience that many describe during trauma, of floating above my body, looking down on the scene. I do remember looking at his sweaty face and wondering…what the hell is wrong with you? And I did do what many women do, our bodies blown apart by the deadening effects of a man’s ego, I waited until he was done. And then I was polite, hoped he wouldn’t hurt me further than was necessary for his own pleasure, and left as soon as I could. In the morning I texted him, not to tell him that he’d hurt me and seemed like a psycho to me – a total psycho – but to tell him I wasn’t interested in seeing him again. As I protected his ego, I protected myself. My body protected me, my brain protected me.
I try to re-integrate, I pull back pieces of myself. I don’t bring them back, I pull them back, they have never truly gotten away from me. I explain to you. I sew this together.
You see, the miracle of the Starfish is due to its decentralized nervous system; there’s no central command, no brain, no four-star general calling the shots. The starfish is a guerilla army, a terrorist network; cut it apart and you make many networks. The Starfish is a flock of birds, wheeling and turning in a dusky sky. Many as one, one as many. This phenomenon contradicts my binary notion of thingness.
Let’s face it, to be a woman, is already a fractured existence. Remember is not the quite word I should use to introduce the many times, I have been told things, by men, about my body. It’s not particularly interesting to me to list them, so you’ll have to take my word for it.
As if I am a tour guide, introducing an alien to my living room, I say: here we are in 21st Century America, where surgical solutions to the problem of being a woman are regularly advertised on TV. There is always an isolation of, and solution for, any problem body part: teeth whitening strips for your yellow teeth, silicone implants for your breasts.
I do remember my own mind obsessing over the size of my breasts – too small in my opinion – all through high school and college. Obsessing about this seems like so much wasted time now. Nonetheless here I am, no matter how much I protest, I still sometimes feel like the Bride of Frankenstein: patched together body parts in the service of the male gaze.
But/And even if I’m sewn together, even as I sew myself together, my aim is full integration.
This new diagnosis of Cushing’s Disease had me rethinking all of the strange symptoms I’d experienced over the last decade – the broken ankles, the extreme anxiety, the weight gain, the weight loss. I was unmoored, dislocated. I asked myself: am I merely a binding of many things? How do I locate my essential, indivisible self? Who is the pure Martha, what is the essence of me? Do I carry it with me? I remember thinking to myself: is the Starfish, am I, even A Thing, or just an idea that exists in someone’s language/brain at a moment in time?
Many people have tiny tumors on their pituitary, but the vast majority of them are benign, non-cancerous. However, in the case of Cushing’s Disease, these tiny tumors secrete hormonal signals to the adrenal glands, making them overproduce cortisol, the stress hormone. For the most part these tiny tumors are total mysteries, like far-away stars inside our body. They flame up and they die out according to their own trajectory. Who knows why some people’s tumors cycle in toxic hormones for years, while others never “turn on” at all. Not even specialists know why some people develop Cushing’s and why others don’t. They don’t know if the disease is genetic, environmental, or what seems to be the prevailing theory – totally random. This overproduction of cortisol causes some 80 odd symptoms and ultimately death. Those pertinent to me, at least at the beginning of this slow unraveling, were uncontrolled weight gain, hair loss, osteoporosis, fatigue, pain, facial hair growth, uncontrolled sweating, insomnia, and extreme anxiety and depression. I was a mess. I was disordered. My edges were expanding and growing blurry. I went from 130 pounds to 200 pounds in 8 months.
I search for a metaphor, trying them on like clothing.
I grew up “Born Again” Christian. I believe my mother prefers this term to Fundamental or Evangelical Christian, although we were certainly those too. Maybe I’m being too literal, but can one can truly grow up “Born Again”? Aren’t second generation “Born Again” Christians by definition “Born Once” Christians? Those emotional, transformative narratives, of finding Jesus, being born again and anew, never rang true for me. How many times could I wish to be born again, how many times could I ask Jesus into my heart? I couldn’t join the cult. I was already in the cult. I was born saved already, but the stories told to me repeatedly by adults were that I had to feel that salvation, I had to experience the washing away of old sins and the rebirth of a new, Christian personhood. I recall being baptized around the age of nine or ten and waiting, as my head came up from the warm baptismal pool at the front of the congregation, for that ecstatic feeling that I’d heard hundreds of adults tearfully recount in church over the years. I don’t remember feeling anything. It didn’t matter how many times I responded to an alter call, I was never transformed. I was still me, unaltered, if not slightly more confounded.
But then, as life would have it, when I was diagnosed with Cushing’s disease, the Born Again metaphor became incredibly useful. Through shape-shifting, through metamorphosis, through Cushing’s disease, in my late twenties, I no longer recognized myself. I was something else, something new. Everything I’d thought about myself had been wrong. It wasn’t a severing so much as a re-interpretation of my past and current selves. Now, as it turned out, Capitalism and the Patriarchy weren’t destroying my body. My own body was destroying my own body.
And then there came the inevitable fragmentation: my thin hair was a problem, my new, large belly was a problem. My bones were a problem. Each problem required a different specialist. My body was puzzle pieces mashed together. I didn’t like this. I wanted to be cured of Cushing’s but I didn’t want to think about the doctors cutting out a piece of my body, even if that piece of my body was causing me harm. This was one more violation, one more severing.
One day during that suffering, I sat at my parents’ dining room table, teary-eyed, talking to my mother. I was telling her how Cushing’s Disease causes facial hair growth. I pointed out the downy white fuzz on my cheeks. “You can’t really see this white hair. But now I have these dark hairs down here.” I pointed to my chin and neck area.
“I can pay for laser hair removal if you want it,” my mother blurted out.
I was momentarily taken aback. Laser treatment was expensive. And, anyway that hadn’t been my point. The facial hair was really the least of my worries. It was the “my body is being destroyed and I might be dying” part that bothered me. “No! I don’t want laser treatment!” I snapped.
My mother looked hurt. I put my hand on her shoulder. “I really appreciate the offer, but it seems like a waste of your money when there are so many more important issues with me right now. Don’t you think?”
My mother turned her hands over on the tablecloth. “I just thought it was something I could do for you,” she said, staring into her empty palms.
What I realized later was that my illness was my mother’s as well. I was an extension of her body and her self. I’d emerged from her and fed on her breast milk. My suffering was her suffering. I was her starfish arm, cut from the whole.
I was connected to her. Her oppression was my oppression.
We’ve always used metaphor to help us understand our bodies and how they go wrong. We’ve compared our brains to computers, our hearts to pumps. We’ve developed intricate thought systems to bring order to our bodies – like the four humors in the middle ages and the principles of Yin and Yang in Chinese Medicine. And although these analogies have been imperfect, they’ve also been incredibly helpful. So, what metaphor would suffice for a body (my body) destroying itself?
All of my symptoms were, in fact, only my body’s way of coping under chronic stress; the body has its own logic. The weight had accumulated to ward off famine, my bones were being depleted because according to the logic of the body, it was under attack and my bones were less important. My period stopped because, again, if I was under attack, now would not be a good time to have a child.
In the case of a virus or germs, it’s easy to conceptualize an attack from the outside of the body as a cause of illness. But with auto-immune diseases, and diseases like Cushing’s, it’s much harder to imagine the self as an “other.” How can the self attack the self? What is the self if not a self-interested party? If it’s not this, then what is it?
Some people with Cushing’s Disease name their tumor. These names are generally unkind, like “Little Bastard” or “Asshole.” Maybe they believe naming the tumor means they can better fight the disease, or else naming it makes it more tangible somehow. But I never did name my tumor, nor did I want to. Why demonize the tumor? It’s just doing what tumors do; it’s not the tumor’s fault that its sole purpose happens to be in direct opposition to the greater organism’s (my) survival.
Also, naming the tumor was a way to understand and isolate the tumor. It smacked of fundamentalism. And what was happening to me was incomprehensible. It made no sense. Why pretend that coming down with a rare disfiguring disease at 27 was somehow a thing with boundaries, clear edges? Why pretend that we can subjugate the wind?
It feels impossible to talk in language without using binaries.
I don’t “own” my cells. I’m not in charge in any sense of the word. Rather, body systems respond the way they evolved to respond under chronic stress. My body wasn’t in a state of war, a stale-mate, or even non-cooperation. My body just was. It was in a state of being. Metaphors of war and hierarchy do not help the sick individual, not in any meaningful way, not if the individual wants to love themselves unconditionally. Our culture often frames sickness as a battle, but the reality is that health and un-health, self and non-self are merely shorthand for a creature-state adapting, with various degrees of success, to its environment. We adapt to both the inner environment and the outer, separated as we are by a porous skin.
A skin that lets in and lets out. You don’t have a boundary, you are a starfish. Get rid of the notion of a self, the metaphor of the self. Personality tests be damned. Lick your finger and stick it in the wind.
This is all well and good, but at my most sick, I, Martha-the-woman, the creature-state adapting, was being pushed closer and closer to death each day. And I had to do something, even if it meant doing real violence to my body in search of a cure for my Cushing’s Disease.
After two failed pituitary surgeries, I finally decided to surgically remove my adrenal glands. This now means I have Addison’s disease. Addison’s disease is also a rare endocrine disorder, but instead of having too much cortisol, I have none at all. My pituitary is also damaged beyond repair. I take ten pills a day to live. But, I live.
So now I’ve been born-again, again. I woke a second time from the warm baptismal sleep of anesthesia with another brand-new body. My mother stayed with me after the surgery. The first time I walked around the block with her, a week after coming home from the hospital, it was a gray April day in San Francisco.
“I feel so weird,” I said. “I can walk. I’m alive. I don’t feel like this should be possible.”
Later I told her I was a cyborg. My selfhood had now extended to the pills I took to ambulate and breath.
To be self-sufficient is to be alone. We’re actually ants.
Through all of this, I just wanted to love myself, all of myself. Even though I’d lost my thin-privilege, my able-bodied privilege, I would not other my sick self, I would not pursue an idealized “healthy” version of myself. I wasn’t a before and after picture. Even though I’d been born again, every past version of myself had also been me. I needed to reintegrate. We split, divide, split again. My self, as self-serving as I hope it can be, is as much an identity and a thing with borders, as it is a starfish, split and splitting, a flock of migrating birds, assembled from history, genes and historical trauma, the deep cellular knowledge of our ancestors.
Goodbye Martha, I say. Hello Martha, I say.
Martha Grover is the author of One More for the People (Perfect Day Publishing) and The End of My Career (Perfect Day Publishing). The End of My Career was a finalist for the Oregon Book Awards in creative nonfiction in 2017. Her work has appeared in The Collagist, Voicemail Poems, and Switchback Journal among others. She has been publishing her zine, Somnambulist, since 2003. Martha is currently at work on a book of essays about Catastrophe, Myth, and being a sick person in the 21st century. When she is not writing, Martha is making zines and art and selling Real Estate.
Image source: Nadina via Creative Commons