Play & Book Excerpts
Not Weakness: Navigating the Culture of Chronic Pain
(She Writes Press)
© Francesca Grossman
Francesca shares...
This book is a compilation of stories of what it’s like to live with chronic pain. Though I began by talking to both men and women, it became clear that a lot of women in pain had similar stories, shrouded in a similar culture of silencing, shame, humiliation and fear. Men had some of those experiences, too, and while I have empathy and respect for everyone in pain, I decided the book would be more focused if I concentrated on women.
Some of the women I spoke to appear occasionally. Others are more central in my narrative. Some I spoke to briefly, so while they did not contribute quotes, their experiences and thoughts informed the narrative. Some did not want to be identified, so I tell their stories using pseudonyms. (Demographics and age were important, and I have listed the breakdown in the appendix.)
These women have lived in the shadow of their pain for a long time. My goal is to give them space, voice and light.
This book is a compilation of stories of what it’s like to live with chronic pain. Though I began by talking to both men and women, it became clear that a lot of women in pain had similar stories, shrouded in a similar culture of silencing, shame, humiliation and fear. Men had some of those experiences, too, and while I have empathy and respect for everyone in pain, I decided the book would be more focused if I concentrated on women.
Some of the women I spoke to appear occasionally. Others are more central in my narrative. Some I spoke to briefly, so while they did not contribute quotes, their experiences and thoughts informed the narrative. Some did not want to be identified, so I tell their stories using pseudonyms. (Demographics and age were important, and I have listed the breakdown in the appendix.)
These women have lived in the shadow of their pain for a long time. My goal is to give them space, voice and light.
EXCERPT ~ Beginnings: The Onset of Chronic Pain
The beginnings of things are sometimes hard to remember, but I have a list of firsts that are quite different from most, and they seem to stick with me.
The first time pain found me was right after the first time I found a lump. I had just downed a can of Arizona Iced Tea. Sweet, soft on the back of my throat, ice cold, and only 99 cents, it was the best deal in drinks. It was August in Massachusetts, and the air was hazy and heavy around my face. I lay face-up in my front yard, the prickly summer grass a distant annoyance compared to the throb of my tired muscles. Soccer practice for high school preseason had already begun, burning off the early morning hours with drills I loathed. The Arizona can sweated, and so did my back, in fluid sheets, and I could feel my sports bra forming a damp “O” shape between my shoulder blades. I sat up. I pinched the cotton of my T-shirt between two fingers and pulled it away from my chest, fanning myself with the thin white fabric. Putting both hands inside my shirt, I wriggled out of the sports bra—letting my breasts slap against my chest as I peeled off the spandex.
The tiny marble under my right nipple shouldn’t have been noticeable, even to me. But somehow my palm landed directly on it. I rubbed it around for a minute, kneading the circle under my skin, the flesh soft and pliable. I pulled my hand away.
“It’s nothing,” I decided, lying back down and flipping over onto the yellow lawn, the sharp grass scratching my face, the sun drying my salty neck. The ground felt hard under me, and though I knew it wasn’t possible, I felt the little marble roll beneath me like the princess and the pea.
For weeks, I said nothing. My breast turned blue around the nipple; it hurt to touch. Soon my chest bothered me enough that I had to say something. It took a long time to be diagnosed. At the beginning I was told I had an “undetermined inflammatory disease”—autoimmune in nature. What that meant, practically speaking, was that I would grow small benign growths (not tumors or cysts) that were painful and awkward. Clothes didn’t always fit right. The growths were itchy, jutting out from my chest, my hips, my back, my neck.
After a few years, these benign growths became more worrisome nodules and then, in a few cases, tumors. I have since been diagnosed with many more specific autoimmune diseases, including Hashimoto’s, thyroid cancer, Crohn’s, colitis, and sacroiliac arthritis.
While it is nice to have labels so that insurance companies will pay for some treatments, having all of these diagnoses hasn’t really changed anything fundamentally. Regardless of the names, they result in the same thing. I didn’t know it then, but that day on the grass was the beginning of my life in pain. Years later, after surgery to remove my thyroid because of yet another growth (this one malignant), I was in the hospital in the middle of the night without a voice. I really had to pee. I couldn’t move my legs and I couldn’t talk; my arms were attached to the walls with beeping tubes and clear liquids. I wasn’t going anywhere. Eventually, a nurse came into the room, unopened catheter box in hand. She popped the tape with a slit of her bright pink fingernail. I exhaled, thankful.
Quickly, she spilled the pieces of the catheter kit from the pack onto the bed next to my legs, a long tube hitting the floor before she scooped it up. I wrestled with trying to mime to her to not put the part that had hit the floor in my body, but at this point I was pregnant with pee, unable to think about anything but draining it. She shook out the instructions for the catheter and laid them on the bottom of the bed, smoothing them with her palm. One fingernail held the paper down while another traced the lines of the instructions, one by one.
“You’ve never done this before?” I asked in the loudest whisper I could manage.
“I have. Shh,” she replied.
“I’m sorry, but could someone else do it? Someone who doesn’t need instructions?” I think I said these words, but I don’t think either of us could hear them.
She stopped reading. She looked up at me and let go of the instructions, which fluttered to the floor.
“I’ve . . . got . . . it,” she said slowly.
A half hour later she had pinned me down, finally inserting my catheter, hanging the tube off the side of the bed and then lacing it through one of the rails so that it emptied into the pink-putty bedpan she left at the foot. As it filled, she smiled at me, smug and triumphant. I was so relieved to be draining my bladder I tilted my head back and closed my eyes.
“A ‘thank you’ would be good,” she said. I ignored her.
When I opened my eyes, she was gone. The urine was still draining from my bladder, overflowing the bedpan bucket, soaking the cotton blanket over my feet. I pressed the nurse’ call button. Nothing. I called out, but in nothing more than a hiss. I slept the night with wet legs and a chill that traveled all the way up to the hole in my throat. I couldn’t control the tube, so each time my bladder released, my feet went warm for a minute and then acclimated to the chilly room.
She never came back to change the sheets.
There have been so many firsts like this. My first surgery: benign tumor. My first addiction: benzos. My first MRI: panic attack. My first panic attack: in the MRI. My first financial collapse. My first firing. My first hospital stay. The first friend I lost. The first lie. The first misunderstanding. The first disappointment. The first failure.
And then there have been seconds, thirds, and fourths, and somehow there have not yet been lasts, as far as I can tell. I don’t live in the hole of depression right now. I haven’t had surgery in a while. My stomach is calm, at least for today. I can move a little better than I used to. Maybe none of this will ever happen again. This kind of hope is something I am still learning to process. We have a misguided belief that we control our bodies. We starve them, feed them, and challenge them. We tuck them into jeans. We push them to the very limit, and then we put them to bed, throbbing from effort. We feel accomplished, empowered, and in control. But there comes a time when we no longer can support the illusion that we have control. The change can be subtle. It doesn’t have to be as life altering as my onset.
For many it’s a pimple in the center of your nose, or a cold that knocks you off your feet. Maybe it’s a broken finger or a hangover. Maybe it’s a daze. Those are the usual ways. And we should pay more attention because they are the warnings of our youth.
Of course, there are things we can do to turn the ship a bit. We can sleep well, eat well, exercise, and de-stress. We can have meaningful relationships, we can curb the excess, and we can watch our backs. People say those are tiny things.
To me, they don’t feel like tiny things. They feel like boulders. They are so hard to move.
There’s no beauty in the pain. Anyone who tells us there is has never been in pain. Pain grabs us by the back of our neck and stares us in the eyes, daring us to close them.
The beginnings of things are sometimes hard to remember, but I have a list of firsts that are quite different from most, and they seem to stick with me.
The first time pain found me was right after the first time I found a lump. I had just downed a can of Arizona Iced Tea. Sweet, soft on the back of my throat, ice cold, and only 99 cents, it was the best deal in drinks. It was August in Massachusetts, and the air was hazy and heavy around my face. I lay face-up in my front yard, the prickly summer grass a distant annoyance compared to the throb of my tired muscles. Soccer practice for high school preseason had already begun, burning off the early morning hours with drills I loathed. The Arizona can sweated, and so did my back, in fluid sheets, and I could feel my sports bra forming a damp “O” shape between my shoulder blades. I sat up. I pinched the cotton of my T-shirt between two fingers and pulled it away from my chest, fanning myself with the thin white fabric. Putting both hands inside my shirt, I wriggled out of the sports bra—letting my breasts slap against my chest as I peeled off the spandex.
The tiny marble under my right nipple shouldn’t have been noticeable, even to me. But somehow my palm landed directly on it. I rubbed it around for a minute, kneading the circle under my skin, the flesh soft and pliable. I pulled my hand away.
“It’s nothing,” I decided, lying back down and flipping over onto the yellow lawn, the sharp grass scratching my face, the sun drying my salty neck. The ground felt hard under me, and though I knew it wasn’t possible, I felt the little marble roll beneath me like the princess and the pea.
For weeks, I said nothing. My breast turned blue around the nipple; it hurt to touch. Soon my chest bothered me enough that I had to say something. It took a long time to be diagnosed. At the beginning I was told I had an “undetermined inflammatory disease”—autoimmune in nature. What that meant, practically speaking, was that I would grow small benign growths (not tumors or cysts) that were painful and awkward. Clothes didn’t always fit right. The growths were itchy, jutting out from my chest, my hips, my back, my neck.
After a few years, these benign growths became more worrisome nodules and then, in a few cases, tumors. I have since been diagnosed with many more specific autoimmune diseases, including Hashimoto’s, thyroid cancer, Crohn’s, colitis, and sacroiliac arthritis.
While it is nice to have labels so that insurance companies will pay for some treatments, having all of these diagnoses hasn’t really changed anything fundamentally. Regardless of the names, they result in the same thing. I didn’t know it then, but that day on the grass was the beginning of my life in pain. Years later, after surgery to remove my thyroid because of yet another growth (this one malignant), I was in the hospital in the middle of the night without a voice. I really had to pee. I couldn’t move my legs and I couldn’t talk; my arms were attached to the walls with beeping tubes and clear liquids. I wasn’t going anywhere. Eventually, a nurse came into the room, unopened catheter box in hand. She popped the tape with a slit of her bright pink fingernail. I exhaled, thankful.
Quickly, she spilled the pieces of the catheter kit from the pack onto the bed next to my legs, a long tube hitting the floor before she scooped it up. I wrestled with trying to mime to her to not put the part that had hit the floor in my body, but at this point I was pregnant with pee, unable to think about anything but draining it. She shook out the instructions for the catheter and laid them on the bottom of the bed, smoothing them with her palm. One fingernail held the paper down while another traced the lines of the instructions, one by one.
“You’ve never done this before?” I asked in the loudest whisper I could manage.
“I have. Shh,” she replied.
“I’m sorry, but could someone else do it? Someone who doesn’t need instructions?” I think I said these words, but I don’t think either of us could hear them.
She stopped reading. She looked up at me and let go of the instructions, which fluttered to the floor.
“I’ve . . . got . . . it,” she said slowly.
A half hour later she had pinned me down, finally inserting my catheter, hanging the tube off the side of the bed and then lacing it through one of the rails so that it emptied into the pink-putty bedpan she left at the foot. As it filled, she smiled at me, smug and triumphant. I was so relieved to be draining my bladder I tilted my head back and closed my eyes.
“A ‘thank you’ would be good,” she said. I ignored her.
When I opened my eyes, she was gone. The urine was still draining from my bladder, overflowing the bedpan bucket, soaking the cotton blanket over my feet. I pressed the nurse’ call button. Nothing. I called out, but in nothing more than a hiss. I slept the night with wet legs and a chill that traveled all the way up to the hole in my throat. I couldn’t control the tube, so each time my bladder released, my feet went warm for a minute and then acclimated to the chilly room.
She never came back to change the sheets.
There have been so many firsts like this. My first surgery: benign tumor. My first addiction: benzos. My first MRI: panic attack. My first panic attack: in the MRI. My first financial collapse. My first firing. My first hospital stay. The first friend I lost. The first lie. The first misunderstanding. The first disappointment. The first failure.
And then there have been seconds, thirds, and fourths, and somehow there have not yet been lasts, as far as I can tell. I don’t live in the hole of depression right now. I haven’t had surgery in a while. My stomach is calm, at least for today. I can move a little better than I used to. Maybe none of this will ever happen again. This kind of hope is something I am still learning to process. We have a misguided belief that we control our bodies. We starve them, feed them, and challenge them. We tuck them into jeans. We push them to the very limit, and then we put them to bed, throbbing from effort. We feel accomplished, empowered, and in control. But there comes a time when we no longer can support the illusion that we have control. The change can be subtle. It doesn’t have to be as life altering as my onset.
For many it’s a pimple in the center of your nose, or a cold that knocks you off your feet. Maybe it’s a broken finger or a hangover. Maybe it’s a daze. Those are the usual ways. And we should pay more attention because they are the warnings of our youth.
Of course, there are things we can do to turn the ship a bit. We can sleep well, eat well, exercise, and de-stress. We can have meaningful relationships, we can curb the excess, and we can watch our backs. People say those are tiny things.
To me, they don’t feel like tiny things. They feel like boulders. They are so hard to move.
There’s no beauty in the pain. Anyone who tells us there is has never been in pain. Pain grabs us by the back of our neck and stares us in the eyes, daring us to close them.
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Francesca Grossman is a writer and writing instructor. Her work has been published in The New York Times, Brain, Child Magazine, The Manifest Station, Ed Week, Drunken Boat, and Word Riot, among others. She runs writing retreats and workshops internationally and leads an annual intensive workshop at The Harvard Graduate School of Education. Francesca holds bachelor’s and master’s degrees from Stanford University and a doctorate in education from Harvard University. Her acclaimed, instructional manual Writing Workshop; How to Create a Culture of Useful Feedback is used in universities and workshops all over the world. Francesca lives in Newton, Massachusetts, with her husband and two children. |
Francesca Grossman
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