Mom with baby Micah in 2008.
I remember leaning forward on a chair, three days after giving birth to our second child, trying to find a position that didn't make me wince. I recognized the pain, the numbness down my leg, the way my back froze when bending.
I'd given birth without drugs but the pain of a herniated disc is different--it is constant, relentless, unflailing. It is biting your lip until it bleeds and hoping no one sees you.
It’s also one of the primary reasons for opioid and drug addiction. Chronic pain is only a little thing to those who have the good fortune of not experiencing it.
For the next nine months, I couldn’t sit or recline or even stand without that pain at my side, in my back, down my leg, through my toes. I don't have any happy nursing memories with Micah because every session was a lip-biting, pain-struck agony.
I can’t imagine what I would have done without the love, friendship, and kindness of the Crafts.
Six months of physical therapy and two epidural blocks (which would not have been possible without the childcare offered by Jessica) helped my disc recede. But it’s still bulging. Although it still screams at me when I sit too long or lift heavy things, the nonstop pain is gone. A gift. A stroke of fortune. An instant where things worked out.
See, this isn’t really about my back or my body. I’m using myself as a springboard into the bigger issue of what I see in the anti-umbilical states of america. I’m extending a hand and love to the countless humans who are struggling with pain or medical issues and feeling shamed by it.
Because I felt so guilty for what was wrong with me. As if I had done something to deserve it.
That's how ableism works--we shame others for the ways in which their bodies don't perform. I still shake my head when I think back to all the energy and time and mental effort trying to protect others from my pain--constantly underplaying it, brushing it off, denying it, doing all the things females are socialized to do in our macho, play-tough culture.
Earlier this week, in my 11th day of nonstop muscle tingles, I decided to make that Stevie Nicks dance video with my daughters—you know, the one I keep swearing to make someday soon but then putting off for later. I made it because I’m not so sure about later. I know later doesn’t come for many of us, and maybe living in the present—making those memories now—is the most rational response to the bodies that betray us. I’m supposed to feel ashamed for mentioning this. I’m supposed to present an image of perfect family, perfect body, perfect health, and other such priceless bullshit. But here’s why I won’t…..
I want to talk about shame.
As a writer. As a mother. As a partner. As a human who makes less than $10,000 a year.
Your pre-existing condition is not your fault. Your STD is not your fault. Your colon cancer is not your fault. Your breast cancer is not your fault. Your fibromyalgia is not your fault. You don’t deserve it any more than a newborn deserves to be born without limbs.
Let me be clearer. Your schizophrenia is not your fault. Your autism is not your fault. Your postpartum depression is not your fault. Your acne is not your fault. Your multiple sclerosis is not your fault. Your depression is NOT YOUR FAULT. Your addiction is not your fault. Your PTSD is NOT YOUR FAULT. DO YOU HEAR ME? Your damn hernia is not your fault. Your skin cancer is NOT YOUR FAULT. Your cystic fibrosis is not your fault. None of these things are YOUR FAULT. None of these were chosen by you as features of your life or death.
The illness-blaming isn’t new.
Donald Trump won on a political platform rooted in mocking and shaming the vulnerable, the under-privileged, and the weak.
We live in a culture of lies and loneliness where everyone pretends to be stoic while self-medicating with anything that takes an edge off the worry. That's who we are as a nation--the puffed-up peacocks of Faux Strength.
For the record, cruelty is not a kind of strength. Ableism is not a virtue. Good health isn't something you earn or deserve—it’s just what happens, a combination of genes, experience, and economic or social resources.
Meanwhile comfort, or interpersonal comforting, mostly exists with a price tag in our commodity culture where friendships focus more on small talk than soul talk. The price we pay for therapy culture comes out in our personal lives and relationships. The price is silence.
And the silence does violence to ourselves as whole persons.
“Sometimes I talk about shame with my students. Not that I’m trying to force them to write about things they’re ashamed of, if they’re not ready for that or comfortable with it. But sometimes shame is that little bit of steam coming up off the land, and then you know there’s something with real heat underneath. It can sometimes be a barometer: there’s some experience here that I’m not done reckoning with yet. There’s something to write into here.”
I’m a bibliomaniac from way back. The reader in me goes to books to feel less alone--to find ways of navigating a complex reality in which my story is one of ten million stories, each unique and yet common, special and yet unremarkable. Rachel Toliver's wonderful conversation with Leslie Jamison in Image Journal heartened me so much yesterday.
For Jamison, the purpose of literature is :
”That you can read something spoken or written by somebody from a very different place or time or background or state of being—and it can feel true anyway. And you can take that truth and bring it back into your own life.”
What would we do without the books that held our hands in the dark?
How can we thank the writers that risk their image by exposing their weakest, most tender parts?
Being a writer is a blessing and a curse. We live in a commodity culture that values what we do to extent that it makes money. Writers lie at the bottom of the valued labor heap.
But the writer also learns quickly to cut the small-talk and stop wasting time on the prologue. The writer learns to risk the difference between the performance and the reality.
The writer learns to suck it up and write despite how people might see you. And, in a sense, the writer learns that stoicism makes for the shittiest writing precisely because its fakeness is exposed and visceral. And real. If I had been writing when Micah was born, I would have written the pain and shame of those months. To do anything else would have been dishonest.
I wish I could remember the novel in which Rachel Cusk wrote: "How often people betrayed themselves by what they noticed in others." How often we reveal our own anxieties by attacking them in others. Isn't the whole white-woke-world a facet of this? The racism we oppose and fear in ourselves comes out in our uber-righteous statements about others.
And the very emotions we fear in others become spaces of avoidance within ourselves. Leslie Jamison mentions how hard it was for her to move from the shallow waters of writing “about the experience of being a medical actor and also some of these abstract ideas about empathy” into the deeper threshold of “writing into my personal experiences of being a patient.” She feared sounding “self-indulgent, self-pitying, all the things that come up whenever we write about experiences that are painful.”
And then her friend read the manuscript and called her on the obfuscation:
“Not only does it seem like you’re backing away from some of your most important material, but it actually feels like whenever you’re writing toward personal experience, your tone is becoming somehow jaded or dismissive or clinical, almost the way you described those medical dossiers.”
Interrogating her own choice to rise about her alcoholism, Jamison wonders why the addiction story has to be extreme in order to be worthwhile. Does someone need five cancers to be worthy of empathy? Is a gang bang more important than an ordinary, back-alley rape? What do we want and demand from the stories of differently-abled bodies? In Jamison’s words:
“Why do we praise exceptional stories? Why do we feel like a story has to be unique? What if we turned that wisdom on its head? And that became part of the intellectual territory I was exploring, rather than just anxiety that this story had already been told.”
There is nothing worse than being treated like a "victim" in culture that turns its hate onto the humans it hurts. That is just rape culture at its most profound and constant--the victim blaming and shaming that has made survival a semantic battle to be called X rather than Y out of fear of dehumanization. Humans who struggle with anxiety and trauma need to know they are not alone. That's why rape support groups and cancer support groups are so helpful--because they provide a space in which one can be seen "whole" and not shamed.
I am so grateful to those who share their experiences of trauma and terror with me. I am grateful for the bridges we build across anxiety and into hope, possibility, and lack of stigma. Sharing draws shame away from the person trapped in it. Judgement thickens the shame and punishes us for speaking.
In Jamison’s journey with alcoholism, she found that AA meetings provided a space of shared reckoning and support:
“The shared experience of coming to feel extremely dependent on a substance could really resonate across very different lives. The experience of recovery itself could also resonate across different lives. Meetings gave me this idea of what it might look like to try to articulate the possibilities of resonance, but not to fall into that trap of believing that all of our experiences were the same.”
Recovery. What a thick word. What a complicated, multi-dimensional noun. What a vessel to describe the spectrum of dealing with addicton and addressing the underlying mental health issues that cause it.
I don’t have much to add apart from love and hope in your physical journey, whatever it may be. Trump is narcissistic asshole who is trying to normalize a culture of anti-empathy. His karma smells like month-old baked beans on the side of a highway. But it’s not your fault that those views are dominant. Live your life. Love your tattered body. Do what you can with it until the finale arrives. May the culture of shame have nothing on your one and precious life.
“One of my abiding preoccupations is interrogating this categorical divide between the real and the performed. There’s a moment in the essay “The Grand Unified Theory of Female Pain” where I quote my friend Harriet, who is a very wise woman, saying that performed pain is still pain, while she’s also interrogating that divide in a very efficient way. To try to isolate some aspect of living, or some aspect of ourselves as the authentic self that is not performing, sort of misses the point. We’re always performing for somebody, or for ourselves, but that performance is also being—it is also just what it means to be alive, to authentically be in the world.”