By Francesca Louise Grossman
I have tried 46 different times to launch myself out of chronic pain. I know this because every time I try something, I write down what I have done, what it feels like, what it costs, whether it’s covered and how worth it is in a small purple book. No one knows I do this. I scribble in it like I’m confessing to my sixth grade diary. In it is the same kind of anxiety about the future that I had in sixth grade, just not about Andy Apstein and whether he was going to kiss me or ignore me. Instead, it is about the treatment or therapy I try, and whether this one will be the one to finally help.
I opened the book the other day to pen a possible 47th.
The book is chronological, of course, but I put it in alphabetical order for clarity. I flipped through.
It starts:
Acupressure: December 2010 – Feb 2010 – dull pressure, not much change, $120/hr not covered – not worth it
Acupuncture – July 2002 (on and off) until March 2018 – sometimes painful, usually calming, blood flow, lasts less than a day but is relief $75/15 mins – sometimes covered – worth it but has to be ongoing
Acetaminophen – When needed – does nothing – over the counter – $9.89 a bottle of extra strength – not worth it
Bioelectric Therapy – October 2016-April 2016 – possibly dulls pain a little – for about an hour $165/hr at office – not covered by insurance
Cupping – February 2014 – one time, hurt like hell, not worth it. $85/30 mins – not covered by insurance.
Codeine – March 2009 – April 2009 – numb, good, not a long term option – covered by insurance $20 copay
Craniosacral Therapy – September 2000 – October 2001 – When in conjunction with other body work – Myofascial etc – decent relief but dizzy – lasts a couple of days maybe $200/session – sometimes covered by insurance
Cryotherapy – June 2018-October 2018 – feels great right after, like putting ice on a knee. Lasts a couple of hours, heart races. $60/3 min session. Not covered by insurance
And on and on—and on.
The book is 24 years old. The same age as my chronic pain, more than half my lifetime, all of my adulthood, eons.
This book exists because all this time I have had a continuous faith that there is a valve for this pain; that I can escape it, or, more accurately, it can escape me. For all these years I have I known this to be true. I will find it. I will heal. I am a warrior, a survivor; tough, strong, and able. People have told me that pain is weakness leaving the body in all different scenarios, with all different motivations. I don’t have this recorded as studiously but I wish I did.
I have other lists I don’t love revisiting, but help to explain the pain. In my twenties I was diagnosed with Crohn’s disease, an illness of the intestines that leads to violent pain and an urgent need to empty your bowels. I developed Colitis later, a more general type of the disease that bloats my stomach to look four months pregnant. I have had surgeries for my stomach, some of which were determined later to be unnecessary. I had thyroid cancer through out my twenties, finally treated when the tumor on my neck was the size of a ping-pong ball. I developed arthritis along the way, both as a peripheral malady and also it’s own disease. My body is gouged from piles of polyps removed from my insides, and (usually) benign tumors removed from my outsides. My neck doesn’t turn all the way to the right. My hips need forty-five minutes before letting me walk in the morning. I have an unidentified liver problem that swells without notice and bends me in two. If the saying is to be believed, there’s a lot of weakness in there, and it seems to be stuck.
*
When I was twenty-nine, I had surgery to remove my thyroid. The overnight nurse was a doozie of a lady. Opera singer large, big calloused hands that vice-gripped onto my shoulders. Thighs thick as trunks that she used to pin me against the side of the bed so she could administer my catheter without “so much squirming.” She was brutal and brutish. A small silver peace sign sunk deep into her cleavage, drowning in flesh.
She had a hard time getting the catheter in, and as she struggled, she noticed my twisted face.
Pain is weakness leaving the body, my love, she said, repeating it over and over like a command until I could actually pee.
This is an extreme example, but at least once a year, often as much as once a month, this phrase earworms into my psyche. Related to illness and chronic pain or not, this saying has appeared like a subtitle again and again at the bottom of the screen of my life. When I was a weak child? A coach. A teenager who could not stomach even occasional beers? A boyfriend. A young woman unable to go to a bar without scoping out the bathroom situation ahead of time? A roommate. A thyroid cancer patient: a nurse. Doctors, PA’s, med techs. Physical therapists, friends, masseuses, acupuncturists, pharmacists, bosses, guy on the street.
*
I went to the doctor a few weeks ago and a delicate med tech took my vitals. She asked the normal questions, made the normal small talk, took the normal introductory tests. Her thin fingers flew across the keyboard, recording my responses. She asked me if I had any pain.
I wasn’t sure I heard her correctly.
“You mean right now?”
“Yes,” she smiled softly.
“Nothing acute,” I said.
“So no pain?”
“No. I mean, yes, I have pain, the same pain I have all the time.”
“What would you rate it, 1-10?”
How do you rate pain on a scale made for people with no pain?
“I don’t know, 4?”
She nodded and her hands took off. That was the wrong answer. I knew this, I knew that anything under 5 wasn’t worth her noting, that saying 4 was like saying I had a dull headache, or a splinter in my toe. But what should I have said? 7? Wouldn’t that be alarmist? Especially when that pain had been a relative constant for over twenty years? Especially when I knew from decades of experience that the litany of potential remedies for that pain were not going to help?
*
My husband stepped on a quarter inch wire sticking out of the ground near the beach in Fire Island this summer. The metal went a good inch into his flesh, and when he pulled it out blood sprayed mercilessly all over the sand and sidewalk. He howled. He made noises that I have never heard him make before and I have been with him through a lot of painful things. He was pale and sweaty, teeth gritting, eyes rolling back, that kind of pain.
Later that night, his foot gauzed up and iced, still throbbing, he looked at me and said “I’m so sorry you are in pain all the time.”
I didn’t know how to respond. This wasn’t about me, he was the one in pain, and yet a part of me felt smug at his discomfort. Now you know how I feel, was a momentary thought, I’ll admit it, and not one I’m not proud of.
But it got me thinking about pain and the way people relate to it. It is very hard to relate to pain if you aren’t in pain. Which is why I have such a hard time with the 1-10 scale.
Instead, for chronic pain patients, they should ask what kind of sharp thing is in your foot. Splinter? Pushpin? Nail? Quarter inch wire? Razor blade? Glass shard? Burning glass shard?
Nail. I would have said. Occasionally glass shard.
But instead I said 4 and she smiled.
*
I have fought against my pain and weakness for a very long time. I have tried, often unsuccessfully, to be like my friends. In my twenties I tried to stay out all night, I tried to ski, I tried to walk down the street without doubling over. I worked, I played, I drank, I sat as still as I could so that no one would notice the aftershocks. In my thirties I had children, pregnancy an event that paused my pain for a while so that when it came back it felt like a tsunami. Like many mothers of babies I didn’t sleep and then I had severe postpartum depression; I found having small children so physically demanding I came undone. I’m forty-one now and I am very often a prisoner in my house. My stomach bleeds, my liver pulsates, my head spins. Not all the time, but enough.
From my teens until today, this minute, and all those in the foreseeable future, there is pain. At least nail in foot pain. Sometimes glass shard. Never pushpin. A splinter would be welcome. In fact, when I think back on my childhood and that which was difficult – most sports, endurance, gym class, partying, anything else that required my body to function – I think it’s possible that I have been in pain all my life. Back then I never considered that my resting state was anything less than normal, but now I know better. Most people do not live with nails in their feet.
I hurt. I hurt in the morning when I turn over to get up. When I walk, when I carry groceries, when I turn my head to the right to reverse in the car. My stomach burns, my joints swell, my liver rejects everything I eat and drink.
I don’t talk about pain very often. I tell myself it is because people don’t want to hear me complain but it is more than that, I can admit that. I’m ashamed of my pain. I’m ashamed of my weakness.
What is it about pain that is so shameful?
We live in a culture in which wellness equals strength. People my age do cross fit and triathlons, women have babies without drugs, are lauded for their tight abs, their thick skin, their ability to play tough. I have never been strong like this. I have tried, but I have failed. I was never scrappy. I don’t think I will ever be. I am soft. My belly, the place of much of my pain, is squishy. Distended, bloated, doughy, depending on the day. I’m sensitive. I cry at pop songs.
Our society’s greatest hero story is about overcoming obstacles. We love a fighter. We love an underdog who comes out on top. We love triumph and happily ever endings. We love to fix a hoarder, intervene and send someone to rehab, remodel a decrepit house. We love treatment. We love survival. We love hope.
But hope is complicated. After all of these tries, this list of 46 different treatments and therapies, I no longer have hope that things will get better. I have hope that things will not get worse, which is not the same thing. I have a hope that feels a lot more like mercy than it does like faith.
When I ask myself this question about weakness and shame I hear a quiet hum suggesting a better question: why am I fighting so hard?
In my experience, pain is not weakness leaving the body. I realize this is a trope, and any mantra is nothing more than a slogan. But slogans have power. They convince. And I’ll admit I have always believed this – that the suffering I endure might one day let me free.
When I was pregnant and exhausted, a friend of mine told me that of course I was tired, I was making a person in there. Though not the same, pain sometimes feels like that too. Of course I’m tired, I’m fighting against myself all the time, trying to quell the pain so that I can live my otherwise fortunate life.
I’m not delusional about this. I know I live a charmed life in almost every way. I am educated, from a family that loves me – even when I behave idiotically. I am not from a country ravaged by war. I have a husband who cares for me, does not abuse me, even dotes on me sometimes. I have two healthy children whom I adore. I am from a privileged minority, I have more than I deserve. I can walk, breathe and think to exist in my daily life. I can afford therapy, eastern medicine, treatment outside of insurance sometimes, to do part time work. I can try 46 things. In short; I’m lucky. Unfairly so. And yet.
Here’s the whole list, abbreviated to just the titles:
Acupuncture, acupressure, acetaminophen, alcohol, aleve, aromatherapy, bioelectric, CBD creams and oils, cupping, chiropractic, chanting, codeine, cranial sacral therapy, cryotherapy, dairy free, hallucinations, gluten free, guided breathing, fasting, fentanyl, flotation, ibuprofen, oxycontin, marijuana, massage, meditation, myofascial, quell, reflexology, radiation, salt baths, saunas, steroids, sugar free, sodium free, sound bathing, surgery, swimming, percocet, physical therapy, psychotherapy, psychiatry, praying, vicodin, xanax, yoga.
Everything helps a little. Nothing helps enough to be worth the life altering work and piles of money it takes to keep it up.
Here’s a truth: the things that actually take the pain away feel a lot like addiction. They don’t remove the pain, that’s the trick. They numb. And they are delicious. But they don’t last and they unleash other pain, often more severe that the original. It’s never worth doubling the pain tomorrow to have numbness today, no matter how attractive the reprieve.
So the pain is there. It’s always there and most likely it will always be there. I don’t know how it got in. Maybe the pain was waiting for me when I came into this world. Maybe it comes from my ancestors, my DNA, my parents’ tragedies, my childhood bullies, or little or big assaults. Maybe I am sensitive to the world for some reason, and it simply hurts to be here. As woo-wooey as that sounds, that’s the one that feels the most accurate, the most likely.
I think it’s actually softness that makes us strong. It’s not skin made of iron. It’s showing the underbelly. It’s not bracing for the storm, it’s putting a kite up in the wind. It’s the willingness to see the world as a series of experiences some of which are going to hurt like crazy and the ability to just keep going anyway. It’s vulnerability. It’s asking for forgiveness. From ourselves as much as from others. It’s mercy.
Mercy is an open palm. It’s the meaty bit. Curling your hand so that your knuckles face the world is so much easier. But a fist to heart feels quite a lot different from a palm to heart, resting square on your breastbone, staying there, the heel of it pulsing the same rhythm as the heartbeat on your chest, marching your body along in a long trek to some sort of quiet absolution.
My husband’s foot healed in a few days. He stopped limping. The knowledge that he would get better permeated and defined the experience – the faith that this would be over soon.
Therein lies the difference between acute and chronic pain, of course: in how we define hope.
So what kind of hope can I have? What if I looked at my years and piles of pain and perceived weakness not as a failure but as a step towards becoming who I am? What if I forgave myself the years of fighting myself and sank into the deep cool water of acceptance? How would it feel down there?
I do not mean that I should give up. I’ll try things if they look promising. 47, 48, that’s fine. But what if instead of fighting so hard I allowed the pain to be part of me? What if, for a while, instead of the restrictive eating and the therapy and the medicine and the exercise and the planning and the trying (and the failing), what if I just stopped? Even if it hurt? Even if the pain never left? Could I recalibrate to “0”? Could I see that as the most radical act? Doing nothing at all?
For now I’ll put the little purple book in the drawer. I’ll cap the pen and sit quietly. I’ll let what’s in me stay put. I’ll put my feet up, expecting and accepting the pulse of the nail that might be forever lodged there.
Francesca Louise Grossman is a writer and writing instructor based in Newton, MA. Her work includes contributions to The New York Times, Brain, Child Magazine, Word Riot, Drunken Boat Literary Magazine, xojane, Kids in the House, Ed Week/Teacher among others. She is currently working on a memoir and a novel.
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