My paternal grandfather died in 1942, at age 40, from complications from hypertension. My dad was 11, my Aunt Sally was 7, and my grandmother was weeks away from giving birth to my Aunt Mary.
It would be 20 years until doctors had the first crude medication to treat high blood pressure, and 50 years until it was a highly treatable condition that no longer regularly widowed 33-year-old pregnant women.
On my mother’s side, the tragedy was losing babies. My maternal grandmother had three stillborn children in the 1930s (including a set of twins). They were perfect in every way, except they developed something called hemolytic anemia, because their blood had the Rh factor. Nobody knew what that was back then. Now, the condition is easily treated with a medication called immunoglobulin.
I grew up with the notion of “if only” pasted to the background, like wallpaper you don’t really notice, except every once in a while, when some shape or color catches your eye. I don’t recall my mom or dad ever making some dramatic, heartfelt pronouncement about how different their childhoods would have been if advancements in medicine had only happened a few decades earlier. I think I just absorbed it through my cells. You don’t merely get eye color from your parents—you get molecules of their deepest fears and regrets, too. And then, if you’re really creative, you layer on your own meanings. In my mind, medicine took the shape of an arrow that pointed toward the future—as in, if you took the right medicine, maybe you could have one. So when my mother served me crushed aspirin with sugar water on a teaspoon, I lapped it up, knowing it would make the fever or sore throat go away. Even now, I associate the taste of sweet sugar water and shards of bitterness not necessarily with comfort, but with belief.
The romantic in me likes to think that my dad became a pharmacologist to make sure some other 11-year-old boy wasn’t left fatherless, but that’s a layer that fortysomething Judi has added. I think it was simply that he liked science, and happened to find a job at the company started by Cincinnati druggist William S. Merrell. Eventually, the company would become Merrell Dow Pharmaceuticals, and then a few other names until it tuckered out in the era of big pharma. He worked in the lab there for 40 years, testing compounds until he retired in 1994.
My understanding of modern medicine was pretty simple back then: It made life better. It not only healed me when I was sick, it also fed me and put shoes on my feet and books in my hands. In fact, that simple narrative has run like a conveyor belt through my life, delivering a different remedy for every problem.
When I wanted to have sex without getting pregnant, there was the birth control pill…and then the antibiotic to get rid of the STD (#dumbdecisions). When it was time to actually have babies, an epidural was a key part of my “birth plan”; the shot in my leg to stop the hemorrhaging after I had my second baby (who thought it would be funny to be 10 pounds, 7 ounces) was an unexpected addition to the plan, but one I was grateful for. Vaccinations have kept my kids healthy, anti-inflammatory medications have seen me through bouts of tendonitis and IT band pain from running, and I’m thankful to have epinephrine at my fingertips in case my 9-year-old son accidentally eats one of the eight different nuts he’s allergic to.
This narrative is far more than some personal history project. Our own city tells it, too: Albert Sabin dosing 180,000 Cincinnati school children with the oral polio vaccine in 1960, and wiping out for good a disease that shot fear into every parent for decades. Cincinnati Children’s Marilyn Hughes Gaston leading a study that discovered that a simple dose of penicillin could save the lives of babies with sickle cell disease. And every other piece of lifesaving innovation that’s rolled down from Pill Hill.
I’m a champion of statins, an enthusiastic supporter of analgesics, an unabashed defender of vaccines. That “if only” that hovered over my childhood feels like some pale memory. Because in this lifetime, we diagnose, we intervene, and we make life better.
So why does it feel so much like we’re fucking up the end game?
In 2006, I stood with my dad on the deck of a small ship in Resurrection Bay, in Seward, Alaska. We were on a sightseeing dinner cruise. I had joined my parents there for the first leg of a big dream Alaska trip; my sister—who had planned most of the trip—was there, too. I was still childless in those days, so flying off to see the glaciers was an entirely reasonable thing to do.
My dad and I were both feeling a bit nauseous. I had brought a little bottle of ginger caplets, because ginger had always helped me with seasickness. I popped one in my mouth and held one out to him. He hunched down in his jacket, his face full of childish fury. “I’m not taking one more goddamn pill!” he said.
“But it will help,” I offered.
He was a stubborn old thing by that point, confused most of the time due to dementia, and slowly losing his ability to do the things he loved. And with each thing, there was some new medication.
For decades, it was just blood pressure meds. Like his father before him, he lost the genetic lottery regarding hypertension. But it was merely a footnote in my dad’s medical chart, easily solved by a pill, a walk every day, and a good diet. Even by the time the dementia settled in, when he was in his mid-70s, he had already far outlived his own father.
That’s when the other medications began—new bottles on the counter with each passing year. Medications to improve memory, to slow the decline, to help with his mood. At some point in there, he had prostate cancer and cataract surgery, so there were meds for that. There were meds to deal with the physiology of aging, too, things I don’t particularly want to think about, but may include stool softeners.
Seven years later, when he entered hospice care, it wasn’t a difficult decision to take him off every one of those life-prolonging (but not life-improving) medications. My mom and siblings and I sat around the table with his care team and unchecked every medication box, unless it was something directly related to pain or quality of life. There were no arguments, no pleading to help him hold on. It’s as if he was sitting there with us, pounding his fists the way he would on the kitchen table, growling, “I’m not taking one more goddamn pill!”
A few years ago, Ann Patchett wrote the absolute best essay I’ve ever read about watching a parent slowly die from a debilitating disease. In the case of her father, it was Parkinson’s. She talks about the pain of watching the three-year decline and the layers of medicine added to combat something that will not be stopped—and then the utter joy and lightness you feel when it is finally over. She compares it to a dinner party: I’m paraphrasing her, but imagine you and your guests had a fabulous time, but it is 11 p.m., you are exhausted, there is much cleaning up left to do, and no one will leave. Instead, they hover by the door, and they stay for three years.
My dad passed in peace a few weeks after that hospice meeting, and with relief—and yes, with some joy—we left the dinner party behind.
But as I write this now, I am back there all over again, this time with my husband and his parents. The medication list is so long, the problems so great and unstoppable. My father-in-law is down to 116 pounds. The latest diagnosis is cancer—a tumor in his throat that has left it nearly impossible for him to swallow. He has a feeding port, which means he can no longer eat actual food. He was already weak from vasculitis, a rare kind of blood vessel inflammation—likely caused by his MDS, a type of blood cancer. He’s received more than a dozen blood transfusions over the last few years. He gets biweekly shots to treat the blood issues, along with a half-dozen or so other medications to treat everything else. He can barely hear, and some days, he just stares blankly. My mother-in-law—his wife of 53 years—has dementia, just as my own dad did. She’s with him at the facility, on the long-term care side. Her list of medications fills a notebook page as well.
My husband, of course, does not wish to see his parents die (nor do I), but watching them persist with a hollowed out quality of life is equally tortuous. He came home from visiting them the other day, unsettled, second-guessing, overwhelmed. All he could say in a half-sob, half-shout was, “The absurdity of modern medicine!”
It is absurd. And wonderful. In the same lifetime. The same day. The same sentence. Passing through it with my dad, I thought something along the lines of, oh, well that was hard, but I’m glad it was just a one-time thing. Now I see, of course, it’s the thing that will come for so many of us. We’ll wind up lingering inconveniences at Ann Patchett’s dinner party, the meds dispensed on trays, our eyes growing more vacant as we take the next dose.
And yet, if my husband or I were to get really sick tomorrow, I would plead to modern medicine: Please help us! Discover the cure! Innovate for us, and for our children, so that we do not have to leave them too early.
It’s the end game that I can’t figure out. When do we get off the conveyor belt?
Sophomore year in college, I fell in love with the book Love Medicine, by Native American writer Louise Erdrich. If I had been considering being an English major before, reading that book made it impossible to consider anything else.
The novel is a collection of stories narrated by different people, each one trying to navigate identity. I was sifting through the disparate pieces of my own identity at 20, so it made sense that my favorite character was the plainspoken but sweetly articulate half-Chippewa, half-Catholic, Lipsha Morrissey—who was about my age. “I know the tricks of mind and body inside out without ever having trained for it, because I got the touch. I got secrets in my hands that nobody ever knew to ask,” Lipsha tells the reader in the title story.
Lipsha heals the aches of all the old people at the senior center where his grandparents live, but he can’t seem to heal his grandfather, who has dementia—or as the grandpa calls it, “second childhood.” What Lipsha wants, more than anything, is for his grandparents to be happy, and to help his grandfather remember that his wife is his one true love. He dreams up a love medicine, borrowing from a mishmash of Chippewa and Catholic ideas, but it fails. His grandfather winds up dying. Lipsha is broken-hearted at first, until he understands something important, telling his grandmother, “Love medicine ain’t what brings him back to you, Grandma. No, it’s something else. He loved you over time and distance.”
These words took root in some part of me at 20, even though I didn’t know anything about the end game back then. Now, of course, I understand how much of medicine is merely love medicine we use to try to bring our loved ones back. I certainly understand loving over time and distance. But I do not always understand where to place those notions that roll along on that conveyor belt: preventive care, quality of life, treatments that heal, medicine that solves problems, end-of-life care. Who decides which is which and what is what and when is the right time?
I imagine my grandmother, weeping over those lost babies, and my grandfather, taking his last breath far too early, and I still think “if only.”
But I also thought “if only” as I held my dad’s hand over those last months, and I know my husband has the words at the back of his throat now too, afraid to speak them out loud.