I recently underwent a relatively minor – but surprisingly painful – outpatient surgical procedure. I spent the next two days crashed out at my parents house in a haze of Percocet, Zofran, and Ibuprofen. On day three I stopped the narcotics, preparing myself to return to work.
But the pain didn’t stop.
I spent day three on the couch, certain that once I got past 72-hours post-op, the swelling would subside and the pain would cease.
But the pain didn’t stop.
Days four and five were a complete loss. The incision site, near the base of my tailbone, ached with any movement; I missed two days of work because I couldn’t walk without feeling as though someone was stabbing my spine. I couldn’t sit upright in a chair without a wave of pain crashing over me with such strength that it made me nauseous.
So I spent those days crashed out on my own couch, still unwilling to take narcotics, curled up with Aleve and a heating pad, guilt-ridden about missing work and generally feeling sorry for myself.
On the morning of day six, I called the doctor’s office, and spoke to the nurse.
“I thought it would be almost completely better after day 5 post-op,” I said, worried. “And it is better, but it’s still really painful.” I had it firmly implanted in my brain that my recovery would only take five days. I have no idea where this number came from, but I clung to it desperately, a life-preserver of hope in a sea of discomfort.
“Oh, no,” she said, startled. “No, I think you’ve got another week or so left to go. Most patients with surgery at that site say it takes about two weeks before they’re feeling better.”
I spent day six profoundly depressed.
I turned off my phone; I ignored my overflowing inbox. I missed a lunch with some co-workers, too depressed to get out of bed and into the shower. I watched seven hours of television on YouTube, all shows about trauma care and the ER: “An Hour To Save Your Life,” “Baghdad ER,” “Real ER 911: The Bronx.”
Eventually I took one more Aleve, wrapped myself up in a blanket, and fell asleep.
~ ~ ~
I woke up at 10pm, a normal time for me, as a night-shifter, to wake up when I “sleep in.” I sat up at the edge of the bed, and it hurt.
The pain was still there, and now I was angry. I was tired of being in pain. I was tired of missing work, missing the outside world, missing sessions at the gym, missing hikes in the mountains.
I was angry at myself for undergoing an elective procedure for something that had just been annoying, and was now acutely painful. I was angry at myself for not planning this better; I was irrationally angry at my surgeon for not telling me that I should schedule a solid two weeks off from work. In retrospect I realize she probably did tell me this, and I hadn’t listened.
I was angry that the pain was interfering with the life that I’d built up around me, a life that I loved living.
As soon as the thought formed itself wholly in my brain, I froze in my steps, halfway to my kitchen.
This was pain.
This was what my patients in the ER were feeling.
I’d had no idea.
~ ~ ~
It was a moment of intense revelation in a year of profound revelations, a year that has completely changed my practice as an ER nurse.
I saw terrible things in Sierra Leone. I saw adults die, bleeding out slowly in the dark, cold and alone. I saw children die, locked with seizures. I saw mothers holding their infants, watching their children die in their arms of malnutrition, starvation, malaria, Ebola.
I saw some of the worst suffering the world can inflict upon humans.
After four months of work in Sierra Leone I quit my job and flew to Belgium, locking myself away in a tiny, medieval tourist town. I walked. I ate fresh fruit and waffles. I slept. I walked some more.
In many respects I was extremely lucky. I did not suffer nightmares, as did many of my colleagues. I did not suffer debilitating panic attacks, or hallucinations, or anything more than a mild culture shock (I needlessly flushed the toilet a lot, solely because I could, and took dreadfully, wastefully, decadently long showers).
And as I meandered the narrow cobblestoned streets one cloudy afternoon, I happened to glance up at a series of façades above some windows across the street. With a start, I realized they were the Seven Corporal Works of Mercy, the foundation upon which I decided, long ago, to define myself as a nurse.
I stared up at the carvings for a long, long time.
~ ~ ~
What I realized that day is something I’ve struggled to articulate for the better part of a year. It is an awareness broken into two separate pieces.
First, the majority of the humans I meet for the rest of my life, especially here in the United States, will never attain awareness of the type of suffering I bore witness to in West Africa. Here, isolated on our enormous, relatively homogenous, monolingual and tremendously wealthy continental island, we will likely never be subjected to an epidemic that leaves us dying by the hundreds in the street, or to starvation so severe our children die in our arms. Most people here will never have this awareness because they cannot acquire it here.
In some ways, this is not their fault; it is instead a quirk of geography. And luck.
Second, without visceral awareness of global suffering, the only suffering people can comprehend is their own. And without a wide barometer, an ingrown toenail becomes a situation for tears and a panic attack. A three-hour wait to be seen becomes “medical neglect” and a threat of a lawsuit. A refusal to refill a “lost” narcotic prescription becomes “deliberate torture.”
These reactions are clearly out of proportion – but the only awareness people have of suffering is their own.
You cannot teach someone the relative degrees of suffering.
And thus, you must understand them on their own level.
~ ~ ~
I still haven’t articulated this well. I may never be able to. It is incredibly frustrating when my words fail me.
The “annoying” parents in room 30 are very young, uneducated, and frightened because they don’t understand why their infant is crying. They are annoying because they love their child.
Since when is love annoying?
The drunk in room 21 doesn’t want to get sober, or get off the street. He smells terrible and always asks for food and juice. But he drinks because whatever he has endured in his life is so painful that it is better to be drunk and homeless than sober and in despair.
Since when is despair a reason to mock someone?
The woman in the wheelchair in room 9 speaks with a broad southern accent, and doesn’t understand how her diet affects her diabetes, and why her blood sugar is so high. She never finished high school, and cannot read above a fourth-grade level. The tech mocks her accent within the patient’s range of hearing.
Since when is a lack of education a reason for cruelty?
~ ~ ~
It is naive to believe that an ER can run solely on niceness, and I do not harbor such naiveté. We face patients who are violent, cruel, rude, threatening, manipulative, and simply dangerous. We are mandated to save the lives of humans who have willfully killed other humans. We are hit, kicked, spit on, pissed on, shat on, and verbally and sexually harassed.
We cannot be nice to everyone, or we would lose our minds.
But this does not mean we should be unkind to everyone in return.
~ ~ ~
My revelation about the relativity of suffering, first planted on a cold sidewalk in Belgium and nurtured over the past year, has changed me completely. The temper that flared and raged in me is almost gone. Just…gone. I am kinder to my patients. I am fortunate enough to work in an ER where I can take time to listen longer, ask more questions, do more teaching.
I am far from perfect, and I mess up and get frustrated every single shift I work. But I am no longer angry, or cruel. And I work with, and have worked with, nurses and doctors who are cruel. One particular physician is so burned out that he leaves his patients in tears, every shift.
Just as I cannot teach my patients the relative degrees of suffering, neither can I teach it to my coworkers. But I can take this awareness I bought, at hard cost in the jungle along the equator, and pay its dividends to every human that I can, to every patient I have the privilege and duty to care for.
And that brings me back to pain.
I stood frozen in the hallway, partway to the kitchen, hurting, desperate for a cup of coffee and some waffles.
And thought, holy shit. This is what pain means.
Pain means that life suddenly stops. Life is you knew it, as you liked it, as you wanted it, has changed. Sometimes it changes for a few hours, sometimes for a few days, or two weeks. But sometimes it changes forever.
Pain means you can’t think, you can’t concentrate. You can’t study for your certs, or read your fascinating but complex book from the library. You can’t even focus long enough to write a thoughtful e-mail, or make a reasonable phone call. Pain is so distracting that you are reduced to being simply an observer, a seven-hour-watcher-of-YouTube, instead of a participant in your own life.
Pain becomes the central focus of your world, the only thing that matters. You will do anything to get it to stop. You will take some of the strongest, most dangerous drugs in the world, drugs that make you vomit, make you stupid, make you constipated, make your lungs slow down to lethal levels, to get it to stop.
You just want it to stop.
The subject of pain, and how we treat it in the US, is so much more complex than I care to address here. It ties to the failures of our tattered healthcare system, an opiate epidemic that is decimating communities and exhausting emergency responders across the country, a national culture of blame that refuses to care for our most vulnerable populations.
But, at least for me, it unlocked yet another door to help me better understand my patients.
My pain, at its very worst, was maybe a 7 out of 10. I have never experienced 10 out of 10 pain. I hope I am fortunate enough that I never have to.
My pain will stop eventually. My life will resume as it was before, probably even better than it was. But the empathy I gained, though again bought at cost to myself, is priceless.
Because without empathy, or even simple sympathy, we no longer see our patients as humans.
And the moment we no longer see the human beneath the pain, the drugs, the booze, the broken leg, the heart failure, the obesity, the anxiety, the condition that has brought them to our door in the middle of the night — that is the moment we are no longer caregivers.
And that is the moment we need to walk away.
Bravo! This should be required reading for 1st year clinical students and for health caregiver in the US.
Once again fabulous writing. But the point is well taken…..we must take our patients as they come, not as we would like to have them be in the fantasy world of everyone perfect, educated, smart, and not demanding of anything. Sometimes the smallest thing you do you a patient, the glass of ice water when they no longer need NPO, putting their socks back on after an exam, or simply holding their hand while you speak with them is more important than ordering more tests or making a brilliant diagnosis. We ALL, docs included, have time to CARE for our patients!
Thank you, Martha. I agree, this should be required reading. Empathy is a quality sorely lacking in this world.
My friend Clara posted your blog a few years ago. You have a beautiful, poignant way of getting to the heart…of matters and to the essence. I am always profoundly touched by your words, insight and experiences. I’ve cried, and even sobbed, after reading some of your posts. Some are not easy to read, but in my view are necessary reading. They are raw and honest. Real and complicated in a world of sound bites and memes. I just wanted to take a moment tonight to write and thank you.
Splendid articulation of a difficult subject. I’m thinking if we could expand it from the healthcare field to our entire lives – it would help make the world a spectacularly better place.
Thank you Martha- i appreciate this very much
Thank you for these thoughts. They should be our reactions anytime for all fellow humans. We need to stop and try to understand, instead of simply judging
Wow you told my story. I was in both Sierra Leone and Liberia and I remember the ecstasy i felt the first time I took a hot shower when I returned to the U.S. I am not a Nurse but support people with disabilities (devalued of our society) I got severly injured one day by one of the men I support and was paralyzed from the waist down and in debilitating pain. I also had an “ah ha” moment… Finally understanding a life confined to a wheelchair (no more mountain bikes/traveling throughout 3rd world countries …)how difficult and frustrating using public transportation, or. going out can be (not all restaurants/diners/buildings/
sidewalks… are wheelchair friendly.) and how angry people can get having to wait for you to negotiate a world made for the physically able…
God blessed me with successful surgery and I returned to my former life…however with new empathy and respect for the people I support.
Thank you for your courage to speak and for you heart opening words. I do believe people don’t mean to be ungrateful or judgemental…but if you have never truly hungered- not knowing if when you will eat again, or stood by hopelessly watching an innocent child as they waste away from an untreated illness, or had your life and world put into a blender so you are forced to live in a painful broken body… How can you really understand????
We who have lived it need to model and teach and not grow frustrated or tired by another’s ignorance born from lack of experience.
Thank you for being a light. Keep up the great work
Martha, your description of your pain made me cry from recognition of how narrow my life has become as a result of my own. Multiple surgeries for Crohn’s disease have left me with unpredictable bowel, and at times, nearly intractable pain from scar tissue and other complications–almost every day of my life. In the early years of the opioid crisis, although pain took away my ability to focus on my doctoral dissertation or on teaching, a profession I love and miss, I did receive enough pain medication to control the worst of the pain and live with it, and I still have a very caring husband who will do anything he can to help. In the years since, deciding to try a drug holiday from the Fentanyl patch and oxycodone was my downfall. I lost 70 lbs and the pain once more ruled every single decision in my life. Moreover, distrust of chronic pain patients had grown so acute, that I could no longer find a pain specialist with the courage to write a script, and no one takes the time to check my medical records, which prove my ability to judiciously manage drug dependence without becoming a psychological addict. My life since has improved somewhat, but at high financial cost for non-prescribed pain medication, which still leaves me with debilitating, daily pain.
What gives me a little hope regarding the medical community’s response to those of us who suffer is your writing about your own experience with pain, and how it has made you more intuitive and understanding of the ways chronic pain wrecks lives. There is as yet no solution to the opioid crisis, and scarcely any attention has been afforded chronic pain sufferers, now routinely denied the only help they’ve ever gotten. There are any number of posts I have read by chronic pain sufferers who, denied their medications, have described the horror of untreated pain with the conclusion that life is no longer worth living. As these are often the last posts found by these authors, one can only assume that many of them ultimately followed through on this conclusion. I have also found chat groups for ER residents, who poke unbelievably vitriolic fun, and make light of, patients who come in with desperate requests for pain medication, fuming at the responsibility to treat them, no matter how unreliable such patients appear to them to be. Especial scorn, I was sorry to find, seems to be reserved for ER patients complaining of abdominal pain, who are labeled as psychologically needy individuals come in to waste staff time and attention. Experience of mental illness, often Major Depressive Disorder, is indeed a logical result to years of struggle with tough chronic pain, and as you might say, Martha, no reason to kick a person already down. We need people like you to stand up for us, as callous suspicion and fear continue to take the place of intuitive compassion. Keep going, Martha–and keep writing.