Review by Jill Stengel
This story, Tender Points, is a true story. It is autobiographical. It is also a biography, of chronic pain. It is medical literature and educated speculation and creativity and vivid vital life. It is a story of things that surround chronic pain, that go with it. Facts. Fears. Feelings. Memory and its loss. Science. Literature. Girlhood, womanhood, personhood. Uncertain futures. Certain pain.
People don’t tend to believe in chronic pain, or understand it, until it happens to them. People think the word “fibromyalgia” is equivalent to lazy, loser, faker, middle-aged woman who doesn’t want to work—even now, still. So little is known. So much is questioned. There is so much variability in the intensity of symptoms. There is no blood test.
Fibromyalgia is routinely described in terms of its lack of certainty or credibility. Even the National Institute of Health has a troublingly vague grasp of the illness; its website explains that “the causes of fibromyalgia are unknown, but there are probably a number of factors involved.”
Up to 90 percent of fibromyalgia patients are female. […] While I can’t say for certain how fibromyalgia would be discussed if the condition primarily affected men, I suspect that we would see worlds like “mysterious” and “unknown” drop from the literature, replaced by the findings—however incomplete—of research done thus far.
Because of how it is presented by the news media as well as the medical establishment, fibromyalgia is viewed with skepticism. As noted above, this condition is mostly diagnosed in women. We all know what that means: no credibility. Women have to prove their truth, the worth of their statements. It is expected that when men speak, what they say is truth, unless proven otherwise. Not sure? Ask around.
Or, think for a moment about the Supreme Court Justice confirmation hearings in 2018, or what came to be Brett Kavanaugh versus Christine Blasey Ford, because of her allegation that he raped her. Think about it. And where is he now? Sitting with Clarence Thomas on the Supreme Court, that’s where.
That’s why I so firmly want prose here. Sentences. Periods. Male certainty. These are facts. No female vocal fry. No uptalk. No question about what I tell you. No metaphor. Go ahead. Fact check. “Did I stutter.” Fuck off.
I’m writing about the violence of patriarchal culture.
I have chronic pain. Every day. I have had pain every day of my life since August something, 1990. Around August 10. There was a car accident. I was a passenger. Someone ran a flashing red, after hours, in San Francisco. Hit and run, man at the wheel. I have more details, but they’re not really that important, are they? What is important is that this happened, and it set off a bomb in my body that has never stopped exploding.
I am not being raped, have not been raped in 20 years, will hopefully not ever be raped again, but I am also continuously being raped. The trauma has lodged in my brain and in my body.
I am so used to the pain. It’s part of me. It feels like just another body part. An always-clenching in my shoulders, neck, back, legs, hands.
I was afraid to read Tender Points. I had to read Tender Points. I picked it up late one night, before bed. I read a few pages or so. I hungered for it, wanted to eat the book, devour it. But there was an argument, I lost, and I turned off the light instead. The next day I did. I ate it all up. With my mind, with my hands and eyes, with my memories and my imagination and my life, my history, and my own unknown future.
It is a deeply personal book, and yet Tender Points also speaks to so many of us, and also for us. Those who suffer and have not yet spoken. Those who suffer and speak. All of us who have suffered chronic pain and sexual assault, and their intricate intolerable and devastating relationship. It is personal, it is political, it gives voice, presence.
It is sharp. It is smart. It is scholarly, with sources ranging from the NIH and fibromyalgia researchers to bell hooks, Freud, Kathy Acker, Susan Sontag, and several poets; and it references pop culture as well, with mentions of “Sex and the City” and “Teenage Mutant Ninja Turtles.”
It is generous with its truths and its tale-telling—the tale as in the story, not as in falsehoods. The fabric, the fabrication—as in creation—the stitching together of the pieces, the building of this book. Tender Points, tender points. It is written in small pieces, almost like fragments, bursts. The small, small essays and notes and quotes and pages build upon one another, making it whole, making the author’s story whole, so many angles of story, so many pieces missing—memory is a strange thing—but enough pieces and parts where wholeness is achieved.
“Trauma is non-linear. There are flashbacks and flash-forwards.” “And so the black holes in my memory become part of the story.” Trauma. Pain. Taken out of oneself, out of body, forgetting—only to be slammed back in hard and hurting always.
The narrative, non-linear, a moving through a mind and a life. Pain, chronic pain, why this pain—why these memories, why this—why can’t I function. She is “bitterly jealous” when a friend says “I can always go back to being a barista for a while.” Berkowitz says of her own life: “Late to work and home straight after. Pain lost in your muscles, trying to find a way out, slams you down in bed but won’t let you sleep.”
And how sexual assault figures into all of this, setting the nervous system on fire, into hypervigilance, flooding the body with hormones that break us. “What vigil is my sympathetic nervous system keeping?”
“Ultimately, all the symptoms of fibromyalgia stem from abnormal activation of the fight-or-flight nervous system,” Berkowitz quotes Dr. Ginevra Liptan, who is both a fibromyalgia doctor and patient. She cites Liptan again later:
“a strong association has been shown between childhood trauma or abuse and the later development of fibromyalgia.” In Figuring out Fibromyalgia, she notes that “studies estimate that more than half of women with fibromyalgia have experienced childhood sexual abuse.”
What is wrong with this culture that this is not unusual?
There is noise music, there are Riot Grrrls, there is college, a lake, friends, boyfriends, weed, and booze. This is a coming of age story of a young woman, any young woman in some ways, and yet a very specific young woman—one who is disabled because of chronic pain. Sometimes this young woman simply cannot go out, do typical young woman stuff, because of pain. Stuff like go to shows, go to work, sometimes even get out of bed. “How the fuck am I ever going to support myself.”
We don’t know how many other young women, or older women, are like her. Maybe they can’t go out much. Maybe they hide or are hidden, maybe they shush. Berkowitz does not shush. Even as a girl, she stares into the eyes of the man who rapes her, her gaze telling him this is not normal, this is not acceptable. With Tender Points, she stares this culture in its “eyes”—this is not acceptable, not at all.
I was one of those young women, like Berkowitz. I was 22 going on 90, I said back then, after the car accident. I couldn’t go a lot of places, do a lot of things, not much, not often. Though I was a women studies minor in San Francisco, I missed most of the Riot Grrrl stuff. Why? Because I was in bed, recovering from work or school. I couldn’t do more. Not “didn’t want to do more” but Could Not. Spoon theory—“a spoonie” who was all out of spoons. Berkowitz notes how facts and scientific terms are more effective when trying to get illnesses to be taken seriously—“Why this insistent cute-ing of illness?” And yet, the spoon theory just works for people who can’t understand the otherwise abstract notion of debilitating exhaustion.
“It’s like having the flu,” people sometimes say about fibromyalgia. But it doesn’t go away. The baseline is feeling bad. Imagine having a mild flu every single day for the rest of your life—as a best-case scenario. At some point you stop telling yourself, “I’ll do that when I feel better,” and you start to let things fall away.
I don’t remember how it feels not to be in pain. At the doctor’s office, pain scales are impossible because I lost my zero. I choose a number because I’m supposed to choose a number.
It’s only when the pain is severe or when the pain prevents me from doing something that I’m forced to think about it. But even when I’m not thinking about it, it’s still there. My body is riding BART and it’s in pain. My body is peeling an orange and it’s in pain. My body is worrying about something stupid and it’s in pain. My body is writing this and it’s in pain.”
Writers write. “No notebook reverie goes unpunished. It’s always a question of: What’s worth writing down?” So many unfinished works, so many not even ever begun because the choice is always more pain or just…rest… But writers write, so we sometimes manage to do it anyway, at a cost. And sometimes we don’t, and/or we can’t.”
Chronic pain is an enormous drain of life-force, of creativity, and of time. And then there is this other drain: the sharing of rape stories.
Now let me be clear: I find tremendous value in talking about rape and sharing stories of your rape with other survivors. There is great power in this, and it is necessary.
But there’s this frustration I feel when…I realize that for the past 20 or 30 minutes we’ve just been talking about rape: our rapes, rape in general, rapists, rape culture, date rape, rape statistics, TV rape, rape apologists, rape flashbacks, celebrity rapists, our rapists.
The time we spend bonding, also supporting, is invaluable. But just think of all the other ways we could bond, and support one another, through creating and discussing fulfilling, meaningful, generative work.
Rape and rape culture limit women’s participation in the world, not just from fear of assault, or recovery from rape, but from the enormous amount of time taken up by talking about rape. Could you imagine what we could be talking about instead? Berkowitz dares to imagine talking with other women about writing projects, art projects, publishing, letterpress, and other writerly, artistic, creative things.
The stories untold, projects unfinished or never even started. Because of constant pain. Because of needing to discuss our rape stories, or because of using our energy to go to the doctor, the therapist, wherever—to deal with simply Being before being able to do extra—to create—and then having little to no resources (energy, time, and reduced or no income)—how do we build our lives, how do we create, sustain? How do we not simply Stop.
Tender Points bears witness to the cultural demand of silence from women, the demand for us to Stop. It shouts directly into the face of this powerful demand, of final and permanent obedience. Stares it down. Says this is not acceptable.
AMY BERKOWITZ (www.amyberko.com) is the author of Tender Points, rereleased by Nightboat Books in 2019. Her writing and conversations have appeared in publications including Bitch, The Believer, BOMB, McSweeney’s, Jewish Currents, New Life Quarterly, and 580 Split. She’s the host of the Amy’s Kitchen Organics reading series and the founder of Mondo Bummer, an experimental small press. From 2017 to 2020, she co-coordinated the writing residency at Alley Cat Books, and in 2016, she co-organized Sick Fest. Her work has received support from the Anderson Center, This Will Take Time, Small Press Traffic, and the Kimmel Harding Nelson Center for the Arts. Berkowitz lives in a rent-controlled apartment in San Francisco, where she’s writing a novel.
JILL STENGEL is a poet and the publisher of a+bend press. She has three children, chronic pain, trauma, and a love of beauty. She gets especially happy when she sees things that are in bloom, such as trees, flowers, succulents, and people. Her work can be found online and in print, mostly in chapbook form. Her website, jillstengel.com, is a work in progress, as are so many things in life.