It had been a perfectly normal meal, meaning a frantic orchestra of a family of four struggling to sit down together before the five year old’s (Odd) bedtime. My older son, E, juggled and distributed the table settings, as I grabbed an assortment of worn plastic cups and chipped canning jars. I poured milk for the boys and a table red for Sandy and I. Sandy ladled his latest improvisation on corn chowder into bowls, and E delivered them to the table with minimal spillage. The minimal that did spill was promptly vacuumed up by the basset hound weaving between our feet. Predictably, Odd had stockpiled his anger for the dinner battle over the prospect of eating something other than Annie’s mac and cheese. No amount of cracker bribery was going to convince him that the soup wasn’t our attempt to eliminate him from the family. E whispered something to his younger brother that bought us a few moments between arias, to sit down and take a moment to lift our glasses and each share something from the day about which we were thankful.
After we’d cleared the table and I was trundling Odd up to bed, it began to make itself known to me: a pressure in my chest and abdomen, that felt most like extreme bloating, as if I had to burp desperately. I turned to Sandy, “Honey, something didn’t agree with me. Can you take the little one?” Odd snapped, “I’m not little,” as he monkey-transfered from my back to his father’s front. Without even a blink, Sandy carried on with what vaguely resembled a bedtime routine in our house.
I’d never had the most organized or smooth running of digestive systems. As a kid I had had chronic constipation that was evaluated as irritable bowel syndrome with constipation (IBS-C) after several childhood impactments and eventually a colonscopy in college. IBS-C is short for: we have no idea why, but for some reason you cannot poop. Over the years, I’d mitigated the problem myself by taking magnesium supplements. Still, sometimes things would not agree with me, and I would blow up like a puffer fish: bloated, gassy, and all prickly largely because as everyone in the family knew: Mommy cannot burp. Well, at least voluntarily; infrequently, I did manage a fantastic belch after drinking a carbonated beverage, inevitably while dining with friends or colleagues. Not being able to belch may seem funny to your kids, but it really is an uncomfortable sensation. This time the pain was worse than normal, so I resorted to the tactics I’d used on E when he was a colicky infantile creature, I walked up and down the passage of our long narrow house thumping my chest like in the old Tarzan episodes. Unfortunately, this elicited neither a belch nor a call to the wild creatures of our family jungle. But like most other encounters that I had had with pain, from growing pains to labor pains, as I paced my way through it, it eventually receded.
Another day or so passed in our normal frenzy, before I was similarly struck. That’s when it occurred to me to make note of what I was eating in case I’d developed a food intolerance. I dredged the recesses of my phone for an old food tracking app called MyNetDiary that I had unsuccessfully used to lose weight after our second child. I carefully documented my meal and added a note, “gas incident after dinner” on February 20th, 2014. Inevitably, my dedication over the subsequent week to recording every morsel that passed through my lips waned. Then like a planned secret incursion when defenses were at their lowest, I found myself one evening sobbing and curled in the front seat of the car as Sandy and the boys drove me to the ER. Both boys sat silently and sleepily in the back seat, before Sandy apologetically dropped me at the curb and took the boys home. I staggered in and up to the intake desk where I was advised to sit until they could triage me. I opted to pace, well, more stumble and plod, around the waiting room taking in the variegation of faces, ages, and states of distress: from the grandparent holding the quivering child holding her wrist in its makeshift wrap, to the rough-living man (from the smell of him) with a slow stream of blood sluggishly carving its way through dirt and grit down the side of his face.
A triage nurse, a shot of fentanyl, a medical technician who took several vials of blood, an ultrasound, and an ER doc later, I was advised that I had gallstones, a somewhat typical presentation for forty-something-year old mother of two. The ER doc put in a system referral to a general surgeon for me to have a cholecystectomy – that is to have my gallbladder removed. The follow-up nurse came in with an incomprehensible pile of papers that were my after visit summary: a diagnosis, facts about gallbladder disease, how to prevent attacks with a low fat diet, my appointment with the surgeon in two weeks, and most importantly, my prescription to hydrocodone for the pain. I was ushered out, wrapped, packaged, yet another problem solved. The taxi kicked me to the curb of my house at 3am in the morning. Our basset and the bloodhound were thankfully pathetic at their job of alerting the house of intruders, and I trudged up the stairs to our bed, numb from the lack of sleep, the narcotic and/or the rapidity with which I had been diagnosed.
Nothing about the treatment I received in the ER suggested neglect or dismissiveness, but pain makes one indescribably vulnerable. Continued and constant pain reduces you to a small child seeking the comfort of a grown up who will look at you and see you and you only – who will see into your past and know exactly what is wrong and what will make it better. You need reassurance and empathy both to feel individually and uniquely in pain and yet to feel as if someone understands. What you do not want is for someone you don’t know to take a few moments to summarize and categorize you as a forty-something mother exhibiting right/central upper quadrant pain, to ultrasound and then confirm gallstones. They’ve already skipped ahead to the final chapter, and you’re still unclear of the main characters let alone the plot.
Naturally, this happened days before my weekend retreat to San Francisco to celebrate my birthday. I’d rented an Airbnb in the inner sunset, the neighborhood that my husband and I had lived in before moving across the bay to suburban Berkeley. Friday evening I had invited some mom friends over for a night of wine, cheese, chocolate, and free of children. The following evening Sandy would join me to kick around the old neighborhood. The day in between I would spend wandering around Golden Gate Park.
Well, nothing, certainly not something as simple as gallstones, was going to take away my birthday getaway.
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Humans have an odd relationship with uniqueness. On the one hand, we flatter ourselves by thinking that we are different than the rest. On the other hand, society seems to go out of its way to convince us we are or should be like everyone else. Consumerism and what is currently in or out of fashion classically represent this, but the medical industry stands next to Elle magazine in its decree that people are the same and their bodies behave predictably. The vast majority of people who have gallstones will continue to develop gallstones, therefore, the vast majority of people will be cured of their gallstone disease by removal of their gallbladder. Insurance companies bank on vast majorities. It may be true that a fraction of people develop gallstones exceptionally under non-repeating circumstances, and that that fraction of people would be better served by simple removal of the gallstones rather than their whole gallbladder, the effort and cost of distinguishing between the vast majority and the fraction exceeds the risk and cost of simply adopting the standard mode of practice. My health experiences until that exact moment had had been filled with sporadic anomalies. Nothing that would stand out until later, but we soon began to joke that I followed the 5% path. That is, a doctor sits with you, explains your treatment in broad strokes, and reassuringly describes how 95% of the people who have the surgery recover completely and the treatment resolves all of their problems. While pharmacy companies are obligated to share even the most minuscule undesired side effect while advertising, doctors work under less strict guidelines.
In the days leading up to my pre-surgical appointment, I
I’d never really thought of myself as a sick person, or defined myself that way. It wasn’t until I went through the littany of questions from the rheumatologist that I realized that I either had had rotten luck throughout life or maybe something had been wrong for a while and no one had put it all together.
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Pain is never comfortable. That’s likely its purpose: to rouse you to action. But the discomfort is not only on behalf of the person in pain, but also for those around that person. Have you ever been around a child who won’t stop sobbing about some injustice well past the time when you think they should be crying, maybe telling them that they should go to their room to cry, or worse my favorite from prior generations, “if you don’t stop crying, I’ll give you something to cry about.” The situation speaks both about the child crying, but also the adult’s inability to sit with the discomfort of pain. You’ve probably known people who only complain about their pain, and perhaps you’ve even grown exasperated with them for sharing it all with you or for never moving on to another subject. Again, this reveals your own inability to be with someone in pain when you can do nothing about it. For someone in chronic pain, the pain never goes away, and pain is designed to be a particularly strong signal overriding other signals, so it’s only natural that pain is at the forefront of their thoughts. Listening to a person describe their experience with pain gets us viscerally, we want to distance ourselves from it.
My hats off to pain specialists.