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chronic pain, Guest Posts

Dear Pain

October 6, 2020
pain

By Diana M. Hernández
That’s you, looming over my thoughts

My movements

My day

My life

I hate you

I really do

People say, “think positive.”

Have they known this pain?

Would they still shit rainbows

If they woke up to this every day?

For years and counting

I’ve hit rock bottom

Times where I thought it would be best

To end it all.

I’m no longer in that dark place

But DAMN I get really frustrated

I have really good weeks

I get a taste of what my life was

Then I’m hit

Days of never-ending

Pulsating

Throbbing

Stabbing

Torture

Radiating from my back

Up to the top of my head

Bleeding into my mood

Blurring it all

I don’t think I’ve hated anyone

As much as I do you

But wait

My son hates you the most

He’s growing up

Knowing pain

Seeing pain

Daily

On the face of his mother

On the body of his mother

He stopped asking me to play

A long time ago

“Momma…

When you die…”

He’ll frequently wonder

Out loud

He is six years old

He should not worry about death

His family drawings

Depict me in bed

“Will you be healthy one day?”

“So that we can play?”

I want with all my heart

To tell him that I will

But I would be lying

So, I nod my head and smile

“You look so beautiful…”

“When you smile…”

I realize then

My child

Isn’t used to seeing me smile

He grew up

Seeing pain every day

On his mother

Dear Pain

Fuck you to eternity

Diana M. Hernández is a mother and graduate student at the University of Texas at Austin where she is specializing in Historic Preservation. She is from Missouri City, Texas and currently holds an M.A. in Spanish Language, Literature and Culture from the University of Houston. 

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Chronic Illness, chronic pain, Guest Posts

Hysteria & Me: An Ancient, Misogynistic Disorder is Killing Women

September 27, 2020
SYMPTOM

By Elizabeth Land Quant

On a December morning in 2017, I woke up face down next to my treadmill. The week before, a rheumatologist at Cleveland Clinic had diagnosed me with fibromyalgia, which she described as an “exercise depravation syndrome,” and told me that aerobic exercise would help my symptoms. “As long as your heart races a little and you sweat,” the doctor’s handout advised.

Now, as I lay on the floor, my heart raced like a trapped bird banging against my chest. I couldn’t take a deep breath. My pants were wet, from urine and sweat, and the nerves in my hands and feet were burning. I needed to throw up. Between the gray-tinged double vision and shaking in my legs, I couldn’t stand up, so I crawled across the floor and slowly pulled myself up the stairs.

After cleaning up my vomit, I vowed to follow my doctor’s advice and try even harder. Her handout said: “First, it is very important to know that even if the pain is worse after exercise, no injury to the body occurs.” But the next day when I tried to exercise things got worse. As the days wore on, I was unable to chew food. My neck muscles would not support my head, and I had to drink my dinner though a straw with my husband’s help. My chest hurt with every breath. I was incontinent, and my intestines became immobile. The burning in my hands and feet got so severe I couldn’t wear socks or gloves. My anxiety and depression were no longer controlled by my meds. I developed double vision and my left eye sagged. I couldn’t take care of my family anymore, or myself.

My husband worked a fulltime job, and we had three teenagers with medical and school needs. With my mother’s and sister’s help, we cobbled together a way to keep everyone fed, up on schoolwork, and attending most doctor’s appointments. Our daughter ran errands for the family after she got off work. My father-in-law picked up our boys from school as much as he could, with Uber as our back up. Dinner was made by anyone who had time that night, or we ordered. I missed countless school events like my son’s football games and my daughter’s high school homecoming coronation, memories we should have made together. I was so thankful that we could get by, but I constantly felt like a burden and a failure.

To get help, I traveled from my home in Minnesota to the Cleveland Clinic with the hope of finding answers for these symptoms. I chose this clinic because its website advertised  a clinic that works “collaboratively with multiple consultants and departments.” But instead of finding answers, after I told her that some of these symptoms had started in childhood, my rheumatologist focused her questions on whether I was traumatized as a child. I didn’t know it at the time, but the rheumatologist that I was seeing is a renowned expert in fibromyalgia, and was head of the Fibromyalgia Clinic at Cleveland Clinic.

“You’ve got severe fibromyalgia. I’m recommending intense psychiatric rehabilitation,” she said.

I found out years later that this rheumatologist conducted a study on how past abuse can indicate the severity of fibromyalgia. Her conclusion was to “recommend that abuse should be inquired about in all patients evaluated for FMS as this may give more clarity to the nature and severity of the FMS presentation and prompt the need for psychological interventions.” This doctor also recommended that severe fibromyalgia patients should not be evaluated for other diseases.

Soon after, back in Minnesota, I was erroneously diagnosed with somatic symptom and related disorders (SSRD), a psychiatric condition that is “characterized by an intense focus on physical (somatic) symptoms that causes significant distress and/or interferes with daily functioning.” They claimed my symptoms were caused by a mental illness and not a physical disease.

For decades, my anxiety, depression and physical symptoms had been attributed by doctors to my own actions. For instance, I was told by a gastroenterologist that my inability to swallow food and my intestinal motility issues were most likely brought on by limiting certain foods from my diet, like gluten and dairy (but if I ate those foods, I got hives and threw up). Other doctors said that my symptoms were present because I “worked and exercised too much and didn’t rest,” or that I was “resting too much” and became deconditioned. I was scolded for being underweight. I was scolded for being overweight. I focused too much attention on my kids and not enough on myself, causing unneeded anxiety. Another doctor said that I focused too much on myself by meditating and googling which vitamins to take, causing an unhealthy obsession with my health. I was told that I just “didn’t like getting older” and was depressed about it. So, all my physical problems – double vision, throwing up, falling down, urinating all over myself – were my fault, and all my therapy sessions, meditation, medicine, exercise, and healthy diet weren’t helping nearly enough, and somehow were making me worse. I had wondered if my kids and husband would be better off without me.

***

I started researching my new diagnoses, and found out that the diagnostic criteria for fibromyalgia and SSRD placed a red flag on patients, primarily women, who have multiple symptoms. Because I fit the criteria for these two diagnoses, I was no longer a candidate for further testing or referral to other specialists. An article in the American Academy of Family Physicians’ magazine states that SSRD “should be considered early in the evaluation of patients with unexplained symptoms to prevent unnecessary interventions and testing.” With approximately 12 million US adults misdiagnosed every year, and women and minorities 20 to 30 percent more likely to be misdiagnosed, how many women are having their “unexplained symptoms” dismissed as part of a somatic illness?

How did we get to this point in the twenty-first century where women are still repeatedly dismissed and misdiagnosed? Women are less likely to be administered pain medicine than men in emergency room settings. Women have a 50% higher chance than men of getting an incorrect diagnosis after a heart attack, and they are 30 % more likely to have a stroke misdiagnosed. Black women and other women of color face even larger disparities in the health care system compared to white women because of racial bias and discrimination. Stigma and discrimination against Transgender people limit their access to healthcare, negatively affecting their mental and physical health. A study “Women With Pain” found that “women with chronic pain conditions are more likely to be wrongly diagnosed with mental health conditions than men and prescribed psychotropic drugs, as doctors dismissed their symptoms as hysterics.”

This brought me right back to college, where a professor asked the question “what is the Greek word for uterus?” When no one answered, he paused for a dramatic beat, and then said, “Hystera. Where we get the word hysteria.” As the women in the class shifted lower into their seats, the men laughed, loudly. There even was a celebratory high five. I will never forget the absolute mortification I felt, and how instinctively I hurried to cover my scars under my shirt from multiple endometriosis and ovarian cyst surgeries. I felt betrayed by my own body.

***

In ancient Egypt, Greece, and Rome, hysteria was considered a women’s condition whose physical symptoms were thought to be attributed to a wandering uterus. Over time, the blame of these various hysteria symptoms shifted from a physical cause to a mental one. In the late 1800’s, the psychoanalyst Sigmund Freud posited that a woman’s psychological stress “converted” into physical symptoms that caused a hysterical state. Also during the Victorian Era, new diagnostic terms like “Briquet’s Syndrome,” named after French physician Paul Briquet, were given to women experiencing hysteria symptoms such as nausea, dizziness, fast heartbeat, pain all over, blurry vision, and weakness. Briquet’s Syndrome was renamed somatization disorder, which eventually became somatic symptom and related disorders. Hysteria was officially removed from the Diagnostic and Statistical Manual of Mental Disorders in 1980, but the stigma of a woman’s illness with a name meaning “melodramatic or attention seeking behavior” still remains.

***

At numerous doctor’s appointments, I was given the Patient Health Questionnaire – 15 (PHQ-15), a tool frequently used to diagnose fibromyalgia, SSRD and multiple mental illnesses, which has symptoms that are also associated with diseases that primarily affect women. The tool listed 15 symptoms and a rating scale of how severely these symptoms affected your life. Each time I checked off most if not all of the symptoms listed, including chest pain, fatigue, heart pounding, nausea, pain, shortness of breath, and stomach pain (refer to chart for complete list). In filling out the PHQ-15, I thought I was helping the doctor get closer to a diagnosis and treatment. Instead, I was checking off a list of “somatic symptoms” that pointed them away from a physical illness and toward a psychiatric disorder like SSRD. Small fiber neuropathy, autoimmune disease, ovarian cancer, autonomic dysfunction, heart disease, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Ehlers-Danlos syndromes, and now long-term Covid 19, conditions that affect millions of women, all have symptoms listed on the PHQ-15, and on screening questions for fibromyalgia. Another devastating problem with this set up is that more and more women are afraid of speaking up about their mental health symptoms, like I was, for fear of their physical symptoms being overlooked, or labelled as psychosomatic.

Women with mental illness, and I include myself in this group, are at risk of their mental health diagnoses being used as a red flag, halting the diagnostic process of their physical symptoms being looked into as part of a physical disease. More than 1 in 5 women in the US have experienced a mental health condition in the past year.  In our modern understanding of mental health, we believe that physical symptoms often manifest as a result of a mental health disorder. The problem is not that doctors identify mental health disorders as one potential cause of physical symptoms. The problem is that those same physical symptoms could also be caused by a number of physical diseases. This is the point where the effective process of a proper diagnosis breaks down. Instead of testing and ruling out physical disease, many doctors jump to the assumption of the absence of physical disease. Having a mental illness does not make us immune to having a physical disease.

Seventy-five percent of Americans with autoimmune disease are women, according to the American Autoimmune Related Disease Association and it takes on average three years and four doctors to get a diagnosis of an autoimmune disease. The study “Frequency of Symptoms of Ovarian Cancer in Women Presenting to Primary Care Clinics” shows that even though 89% of women with early stages of ovarian cancer have a distinct set of symptoms (bloating, abdominal pain, urinary symptoms, fatigue, back pain, constipation) that they report to a doctor, “only 20% percent of cases are caught in an early stage.” How many of these women were dismissed by their doctors because their symptoms fit a somatic illness or were written off as general reproductive issues that halted further testing?

***

About a month after the Cleveland Clinic appointment, my family and I went on vacation in Florida. I almost didn’t go, but this was the only time we could coordinate a trip with all five of us. I spent most of my time in the bathroom, throwing up sips of water I kept trying to swallow. I took anti-nausea meds, Tylenol, Ativan and Imodium to sit with my family by the pool, until I would have to lie down on the bathroom tiles again.

By the time we flew home, I was severely dehydrated and doubled over in pain, but refused to go to the ER for fear I would be accused of faking my symptoms for attention or told that this was my fault and I needed to exercise more. My husband begged me to go in, and it was there that a doctor first mentioned “autonomic disorders,” and autoimmune nerve diseases that could be causing my various symptoms. When I got home from the hospital after getting IV fluids, I looked up my medical records from Cleveland Clinic. The doctor who diagnosed me with fibromyalgia wrote in my appointment notes, “has not been diagnosed with small fiber neuropathy,” a disease that could explain most of my symptoms. It would have been so easy for this rheumatologist to refer me to one of the few nerve labs in the country for a biopsy, right in her same clinic.

***

The diagnosis of fibromyalgia has helped many women get symptom relief and disability services, but has also prevented countless women from receiving a correct diagnosis. Studies show that half of fibromyalgia patients are thought to have small fiber neuropathy, a disease that Johns Hopkins describes as damage to the peripheral nervous system, the nerves that send information from the brain and spinal cord to the rest of the body. This damage can cause symptoms ranging from pain, to gastrointestinal issues, to difficulty breathing and an irregular heartbeat.

Fibromyalgia shares many of the same symptoms of small fiber neuropathy (SFN), but the main difference is that SFN can be definitively tested for and treated, whereas the underlying causes of fibromyalgia are unknown and treatments only address symptoms. A quick and painless skin biopsy can confirm the SFN diagnosis, and if positive, further diagnostics can find a medical cause of the neuropathy in the majority of patients. Prompt treatment can prevent further damage to the nerves, and in some cases, the medical cause of small fiber neuropathy can even be cured.

After researching my symptoms, I convinced an open-minded neurologist in Minneapolis to conduct testing including a skin biopsy and a tilt table test. The biopsy revealed severe small fiber neuropathy, and further testing found Post Orthostatic Tachycardia Syndrome (an autonomic disorder that affects heart rate, blood pressure, and causes many other symptoms). I was also diagnosed with Myasthenia Gravis, a progressive, potentially life-threatening neuromuscular disease which can be fatal with too much exertion (so much for “even if the pain is worse after exercise, no injury to the body occurs”). A year later I was diagnosed with a hypothyroid disorder and asthma, both of which I was told I have had for years. I could not have fought for and received the right tests if I didn’t have a good health care plan, time to research, and money to pay for thousands of dollars of out of pocket costs.

I had missed out on so many of my kids’ events, as well as countless birthdays, anniversaries and holidays. If I had been given a tilt table test or a nerve biopsy instead of being continually misdiagnosed, maybe I could have started the right medications and been more present in my children’s lives while they were still growing up.

***

Being disabled itself doesn’t upset or scare me. I learned that I can live a full and happy disabled life by watching my father work and travel the world with his portable oxygen tank in his backpack. I’m angry about all the time I wasted blaming myself for a disease that was not my fault and all the years fighting for tests and medicine that could have slowed down or stopped the progression of these diseases. However, I am privileged to have the resources I need to live a comfortable life that allows me time to take care of myself.  It is unacceptable that in this country only well-to-do people with disabilities are able to live comfortably, while so many people are forced to fight to obtain correct diagnoses, assistance, adequate health care and safe housing.

When doctors are taught to hold back diagnostic testing based on the number of symptoms a patient has, and considering that so many illnesses that affect women have multiple symptoms, including potentially deadly ones like ovarian cancer, it’s not hard to understand why so many women have been misdiagnosed.

Elizabeth Land Quant is an autistic, queer, disabled writer, wife, and mom to three grown kids, two cats and a very spoiled dog. She studied Latin, Greek and political science at St. Olaf College, and splits her time between Minneapolis and Hot Springs, Arkansas. She researches and writes about her experiences with disability, autism, family, and her undying love for TV. Elizabeth writes poetry, fiction and nonfiction and is currently writing her first novel.  She has been published in Disability Acts.

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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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chronic pain, Guest Posts, Surviving

My Moveable Feast

March 14, 2016
pain

If you are lucky enough to have lived in Paris as a young man, then wherever you go for the rest of your life, it stays with you, for Paris is a moveable feast.  —Ernest Hemingway

By Vicki Gundrum

A Moveable Feast is the only book of Hemingway’s I’ve read, and I’m nourished by the idea of memories. I know it’s more than Paris—it’s driving the ambulance in the Spanish Civil War, catching swordfish in the Gulf of Mexico, gazing on the Snows of Kilimanjaro, swimming in your Key West pool with your gay friend Tennessee.

I’ve lived a life like that, moving up, around and through the world like a hawk on an updraft. It was good and scary, and I collected three concussions.

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My neurologist watched my face change into a Picasso. An eye shrunk and moved, a puzzle piece that should no longer fit, but face tectonic plates shifted to accommodate. My left eye teared. My doctor stared. She said, I’m watching you have a cluster headache. It’s not hemiplegic is it?

I told her I felt the pain behind my left eye but that the headache would become full bore on all parts of my head and face. She said she’d never before watched a cluster headache form. I didn’t say congratulations but I could tell she was excited. She grabbed me by my shoulders and led me to a room with a mirror in it so I could also see the transformation in my face, a reflection of the cluster in bloom. There, do you see your tiny eye there? Or was it my pupil that fascinated.

She rendered her diagnosis with the pride of competence: You are having both transformed cluster headache and transformed migraine, chronic and daily. I asked what transformed meant.

It means you don’t need a trigger.

Oh, I thought my trigger list was merely huge and unavoidable.

My doctor injected nerve blocks behind each eye and prescribed prednisone to break the cluster of clusters—for I’d had a Spring of them. I made another appointment with her but it never happened because she quit the HMO for private practice. Continue Reading…