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chronic pain, Guest Posts, Hope

The Shame of Pain

October 24, 2019
pain

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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Guest Posts, Hope, Young Voices

Hope, The Minotaur

August 5, 2019
hope

By Amanda Loeffelholz

Hope. I spend a lot of time trying to understand it. On one hand, it kept me alive and still does. On the other, I’m not sure if that constitutes it as good. Hope is heroin for the masochist. It provides the justification for repeatedly putting oneself in painful situations under the guise of waiting for the probability of one percent, the one scenario that never happens. Hope never involves the expectation that something will happen. Hope is the barely hanging on, the prayer opposite the barrel of a gun.

What is the one percent anyway? What we all want so desperately that we put a piece of ourselves on the line for it, aware we may never get it back? What we close our eyes and kneel at pagan alters for against all odds? Something is behind the whisper in an otherwise empty room, the clenched fists and the held back tears. The one percent is not situational. It transcends what an individual merely hopes for. It is the thing that cannot be given up on, the thing that is shameful to need and impossible to disregard. Continue Reading…

Current Events, Guest Posts, Hope

My Idols Are Dead and My Enemies are In Power

January 1, 2017
idols

By Meghan O’Dea

Two days after Christmas a fellow author posted to Facebook an image of unknown origin I had seen before. A pale hand, female, dangles a thing white cigarette between calves wrapped in black pantyhose, bent at an insouciant angle. The smoke from the cigarette wraps around the subject’s right hand, a gold band around her middle finger. Below a caption, in a yellowy sans-serif font, introduced by a hypen like a subtitle or Emily Dickinson poem, the quote at a tense angle. It reads: “— My idols are dead and my enemies are in power.”

It was, coincidentally, the same day that Carrie Fisher died. My friend, the author, posted the photo before the news broke that Fisher’s heart attack some days before had resulted in her passing. But it summed up well a year in which so many idols died, from those of my childhood (Richard Adams) to those who inspired my teen idols (David Bowie) to those I had little sense of connection or references to (George Michael). The image appeared four days after I showed up at my parents’ house with a suitcase, face still puffy from crying over the end of a relationship I had thought would end in marriage.

Around the time that I had been dreamily listing out the songs I would like to make up the soundtrack to my wedding, Leonard Cohen passed away. At the time, Cohen’s was one more in a procession of celebrity deaths and personal losses that had marked the almost two years I had been with my former partner, a series of blows that took a subtle, steady toll on a new love. The much-beloved cat, hit by a passing car. The friendships faded and fraught, just when they seemed the most needed. My mother’s mid-life crisis, set off the previous summer when I had spent three months at my grandfather’s house and unwittingly stepped into a tight woven trap of family tensions. The mounting pressure and humidity of the political climate, like the Tennessee summers of my childhood just before a storm comes screaming in off the plateau.

Despite living my whole life in the South, I had never seen so many Confederate flags as I had that summer in western New York, so close to Canada I had brought my passport along in my bag. The stars and bars lined the porches and truck bumpers in that sleepy Rust Belt town for weeks after Dylann Roof’s massacre in Charleston. In hindsight it’s hard not to imagine they heralded Trump’s victory, the coming appointments of Steve Bannon and Jeff Sessions.

It had been so strange to explore a brief, unfamiliar sense of romantic happiness in the midst of what often seemed like the world falling down around our ears. But there were those before us who had survived equal or greater tumult. The very elders who were dropping like flies were a testament to what had changed and what had endured since before we were born.

Cohen had been first introduced to me by another former lover, who had played me “Anthem” in a moment of crisis, and unwittingly given me several minutes of of balm to the inevitable heartbreak. There is a crack in everything. That’s where the light gets in. As I drove to the gym after hearing of Fisher’s passing, the strains of Cohen’s baritone drifted by chance out of the local radio tower, through the speakers, and soaked into the worn upholstery. Everybody knows the good guys lost. Everybody knows the fight was fixed. The poor stay poor, the rich get rich.

In a year of endless losses, the partnership in which I’d sought solace became one more unexpected casualty. There was the subtle toll my mental health had taken on my lover’s, the way my history seeped into our present. There are, as Cohen and Fisher and so many others know so well know, cracks and fissures that may let light enter, but which even love cannot fill or heal.

The day after Christmas, the night before Carrie Fisher died, I watched one of my very favorite movies, Meet Me In St. Louis, for the umpteenth time. After I fell down a rabbit hole of re-reading articles and essays on Judy Garland’s life, along with the inevitable mention of the scandals that she felt defined her.

Then the news broke that Fisher had died, and in a way it was all so beautiful in its synchronicity: the timing of finding myself attuned to the parallels and lessons of these two extraordinary women’s lives. They each lived through mental illness, weight fluctuations, disappointments in love, the pressures of their professions, and the burden of existing in a system that was not made for or kind to them.

There are the women you want to be— the women you idolize and wish you could inhabit. And then there are women like Garland and Fisher, whose lives are not exactly enviable, but who have shown that life does not have to look any particular way to be considered a success. Moods shift, bodies fluctuate, lovers come and go, careers rise and fall, times change. It is art, intelligence, and sheer presence that endure. There are the women you learn from.

It was a year that tore us down, and stripped so much away. The year that has become infamous in the lore of internet memes and obituary sections. Yet so many of our fallen idols left behind last works of startling beauty and darkness and celebration. Fisher revisited her younger self in The Princess Diariest from the perspective of one who views youth as something to survive, not maintain. Bowie spoke of resurrection on Blackstar. And Cohen left us with an accusation, a dare, in the title of his final album: You Want It Darker. Perhaps I did. Perhaps we all did, and that is why the world is in the state that it is in. Perhaps this is simply a season we must walk through.

My idols are dead. My enemies are in power. The man I thought I would marry did indeed, in the words of Cohen, dance me to the end of our love. And yet I stand here hopeful. There will always be lovers and enemies, work and slow songs, black nights and bright ribbons. These things unfold endlessly around that which is both ephemeral and enduring, that which is ceaselessly reborn. In the face of all this loss, I am writing again. It is here and now, when so much has faded and changed, when I feel the most certain and strong. I have learned that in the middle of the darkness and tumult, we will always have ourselves.

Meghan O’Dea is a writer and editor who just completed a masters in Creative Nonfiction at the University of Tennessee at Chattanooga. She writes primarily on space and place and the meaning of home. On the weekends she is the homepage editor for Fortune Magazine. She has been published in Washington Post, Fortune, Huffington Post, Hello Giggles, ink&coda, and has an essay forthcoming in The Rumpus.

What’s Jen Pastiloff’s workshop all about anyway? It’s about being human. Connecting. Finding your voice. Not being an asshole. Singing out loud. Sharing your fears. Bearing witness. Telling your fears to fuck off & fly. Listening. Moving your body. Laughing. Crying. Finding comfort. Offering comfort. Letting go. Creating.
Next one after this is NYC Feb 4 at Pure Yoga West. You don’t need to be a yogi at all. Just be a human. Click photo to book.

 

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Grief, Guest Posts, Hope

When Despair Tried To Settle

November 23, 2016
despair

By Melanie Brooks

On a Sunday morning in June, when my sixteen-year-old son reported the news that a gunman had walked into a nightclub in Orlando, Florida, pointed his assault rifle at a festive crowd of people dancing to a Latin beat, and gunned down over one hundred of them, killing forty-nine, I felt it. An unseen hand reaching into my chest, grabbing my heart, and squeezing. Hard. Its fingernails punctured, leaving behind aching wounds.

The ache intensified with every new photograph or video of victims fleeing the horror of the scene, every interview with family members who learned their loved ones were among the dead, every narrative of a beautiful life taken, every media brief on the ongoing investigation that solidified the gunman’s motives of terror and hate.

There was an enticing drag to the hate that pulled at me in the days that followed, and my anger flared. Targets for my fury, the ones that crept into my social media feed or sought sound bites on the news, weren’t tough to find. Continue Reading…

Guest Posts, Hope

Detangling the Knot

September 1, 2016
hope

By Jennifer Rieger

People close to me know that I have psychosomatic reactions to stress. Many do, but sometimes mine are downright bizarre. When I found out I was pregnant, I kept getting these muscle spasms… in my face. As I studied for the Praxis Exams, I had a relentless burning sensation in my left boob. When I was writing my Master’s thesis, my tongue felt like it itched, for weeks. A few years ago, my work kept getting rejected by every publication I sent it to, and the blood vessels in my left eye burst causing a two-month scary zombie eye. My students couldn’t even look at me! I contend with these nuisances, but my typical reaction, and I believe the one most common to normal individuals, is the lump I get in my throat. It’s different than my stress symptoms though. I imagine it as an intricate little ball of nerves woven together in times of sadness and pain—when life is too much to bear, and I can’t seem to find the right words. A little bit of wine, but not too much, can provide temporary relief. Overindulgence usually results in one pathetic alter-ego that even my husband, God love him, cringes to deal with. The one thing that really helps globus—the proper medical term for Jen Rieger’s imaginary, but very annoying, lump—is time. Ah, time, that selfish, fickle bitch that quickens at every lovely occasion and halts at every boring and difficult moment of life. The knot has appeared at sudden moments of sadness, or even weeks later causing me to run to the doctor’s office in a state of hypochondriatic frenzy crying, “It’s cancer, isn’t it?” It’s there when loved ones pass, when my own child is sad, and when favorite graduates leave me.

It reappeared this summer just by watching the news. Continue Reading…

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