For my entire life, I have been explaining my body to other people. I was born with scoliosis and clubbed feet and needed ten major surgeries throughout my childhood and teen years. I have skinny and stiff ankles and walk with a limp. I’ve had casts, braces, crutches, and been on bed rest. I’ve been short my whole life — in early high school I had a slight hump in my back before surgery changed that. My body causes questions the minute I enter rooms. Strangers and friends alike have asked if I am okay. “You’re limping,” and I always said yes, it’s just the surgery I had as a kid.
And when I was well into my teenage years, just when my body started to leave the medical world, my mother became sick from complications with type-1 diabetes. It put her in and out of the hospital for years. It became a part of my identity. “I have a sick mom,” was among the top ways I thought of myself, or how others thought of me.
My mother’s illness caused more questions. Many of those questions I thought were unanswerable after my mother died at the age of 49 (I was 22). Diabetes felt intangible. I knew what diabetes was, and lived alongside my mother my whole life, but I never understood it on a biological, scientific level. I never knew other people like my mother or other people like me. Both diabetes and my bones were mysteries, along with the worlds they left in their wake — disability, hospitals, insurance, pharmaceutical drugs, and medical treatments. All of it felt like something to endure rather than understand. A jarred set of enigmas that I compartmentalized and tried to escape as I got older.
It wasn’t until I was much older that I started to get answers. Bodyword is something I wanted to create to help answer questions for myself, and others.
It’s something I wish I had when I was younger. A space to learn more about things like crooked bones, how Ebola works, how U.S. health insurance works, hospital food infrastructure, the history of kidney transplants, or what exactly the gallbladder does. A place to ponder or dig up history.
But it’s also a place to rant, vent, and explore healthcare and body issues. Every post will be different — no rules on the format here. I am going to write what makes sense for the subject.
It's a space to break down difficult and challenging subjects from the world of medicine, health policy, infrastructure, and the vast universe of the human body. With every post, I'll explore a new subject, area, or story that helps bring understanding and makes an argument.
But this is a place to nerd out and learn about a world we all know of, but often don't know about — our own bodies and the forces that affect our health.
Each post will be exploratory, sometimes research-based, fun, and engaging. So if you are curious and want to know more about the world of health, medicine, and the human body, this is the newsletter for you.
Thanks for subscribing! (I will likely be moving this newsletter to a new platform soon, but for now, it’s living here on Tuck Talk — a.k.a. Bodyword).
Enjoy this first entry:
The invisible hands that changed my feet
I used to have this habit of staring at my feet. I’d draw a bath and dunk them in the hot water while I sat on the edge of the tub. I shut the door, played music, or turned on the fan, cocooning in my own tiny, bathroom-sized paused world. I sat amazed, utterly blown away that I had feet that could carry me at all.
They are small — size 6 in men’s sizing, if I can find shoes that size. Most times I settle for a 7 and deal with the extra space. My ankles are stiff and don’t really have upward or downward motion. When I jump I can barely clear six inches off the ground.
Most of the toes on my right side are curled underneath, and both of my big toes don’t move. They hang like stiff carrots. My calves are small, palmful slabs of muscle. The ankles themselves are bone skinny. Under the skin and muscle are warped bones, and my right foot metatarsals look like crushed crackers.
On the side where my ankle meets my feet are two slick scars. Surgeons long ago reached in with a scapula and moved muscle, clipped and released tendons and ligaments. They rearranged the order of soft tissue packed into my foot. All to help my clubbed feet.
Right from birth my feet were turned inward, and without treatment, I would have been walking on the sides of my feet or on my ankles, if at all.
“…the leg seems to terminate in a misshapen and somewhat club-like extremity,” surgeon William Adams wrote in 1873, who was an authority on clubbed feet at the time. I would say that’s accurate.
I was one of the 200,000 babies born with clubfoot every year, the most common musculoskeletal birth defect in the world. I’ll call it a fact rather than a birth defect, though.
To change this fact, I had five surgeries on my feet before the age of eight. I wore braces and used crutches on occasion. I would have five other surgeries on my spine. My feet might have been a bonus, but it was likely a bundle with my scoliosis and being born prematurely. Many, if not most, of those 200,000 babies don’t have issues beyond their feet.
Veins and hair populate the small, fleshy rectangles at the end of my skinny ankles. They have moved me to over 25 permanent addresses before I was twenty-five — a childhood of divorce, a stability-seeking mother, and then unstable young adulthood. My feet have taken me to twenty-something countries. I “ran” in a half-marathon at 23, easily going on bike rides in my thirties. Miles are clocked on these feet. And that’s what I was blown away by when I let the hot water ooze all over my skin in the bathroom. No matter how difficult things got, I still had these feet, these beautiful, tiny feet.
I walk because of surgery, but also because of a now fully-endorsed method called the Ponseti method.
The Ponseti method is almost the inverse of a wonder drug: it’s a low-cost, low-tech, smarter-not-harder treatment that involves mostly patience and frequent hospital visits. It has three phases: casting soon after birth; a not-a-big-deal under-ten-minute surgical procedure on the Achilles tendon that heals in less than a month; and finally, the critical phase and most difficult for babies and parents: bracing. At first, babies need to be in a brace for 23 hours a day, feet are typically strapped into a straight bar apparatus (my partner calls this a snowboard when she sees pictures of me in it). Gradually, you wear it less and less, soon only at night. Then lightly throughout the first few years of childhood. Soon the feet — that group of soft tissues: ligaments and tendons are reshaped — and each foot grows positioned forward. The goal is to get these feet to be functional and comfortable.
And today, with the Ponseti method, a child with clubfeet has an above 95% chance of walking — having a functional and comfortable set of feet — without further treatment or surgery. The Ponseti method is endorsed by every authoritative organization that has skin in the game: the World Health Organization, the National Institutes of Health, and the American Academy of Pediatrics. Anyone who knows about clubfeet will tell you that the Ponseti method changes the facts of birth, and improves the quality of life for thousands.
But despite being around since the 1960s, it didn’t become mainstream until well into the 21st century.
Dr. Ignacio Ponseti first stirred up the method at the University of Iowa where in the 1940s and 1950s, he first studied the effects of surgery-treated club foot. Ponseti, a Spanish-born man whose earliest memory was watching other children jumping over fires that were lit to “sanitize the atmosphere” in fear of the Spanish flu in 1918. He was under six feet, had black hair and a high forehead, curious, and gentle — a word that would follow him all his life.
On the same day, he finished his medical exams in Barcelona, just over 500 miles away, in the North African (and Spanish-controlled) port town of Melilla, a swarm of officers and soldiers stirred up a coup that slowly burned across the country.
Ignacio entered the war as a surgeon for the loyalists — a grab bag, ideologies and groups — the Popular Front party, socialists, communists, trade unions, and anarchists some of whom weren’t all that jazzed about the government to begin with, but sided with the Loyalists (or Republicans, if you like) when facing the rebelling Nationalists.
According to his own account, Ignacio and his team treated 4,000 wounded. By the time General Franco entered Barcelona, the leader of the Nationalist army, who had linked up with the fascists, Ignacio fled to France. A few miles from the border, after a ride bailed on him and the wounded, Ignacio was forced to walk across. He plastered casts around soldiers with broken legs so they might limp across the border. He wrangled mules to haul those who could not walk. It took three days, but they arrived, safely across the Pyrenees mountains, now all political refugees. They would be among the 500,000 refugees who fled to France during the war.
After finding refuge in Mexico, Ignacio followed a connection to Iowa in the U.S., where he entered the Orthopedic Department at the University of Iowa. He would become a U.S. citizen in 1948.
In a few years, he would be looking at post-surgery-treated clubfoot. In one particular project, Ignacio looked at children 20 years after their surgical intervention. All, as young adults, had feet that were stiff, painful, lacked motion, and had weaker muscles.
After seeing such dismal results, now, Dr. Ponseti set out to find another way. He studied the inner workings of the foot, leaned on the bodies of stillborn babies (so much medical knowledge is built on the dead), and cooked up a new method that involved casting, a small procedure to the Achilles, and frequent bracing.
In 1963, along with a graduate student, he published his results in several years of study: In his first crack at his specially-designed treatment, over 70 percent of his patients had, what he called, “good” feet. Twenty-eight percent had a “slight residual deformity persisted” and in all the 94 feet (67 patients) he evaluated, one foot was reported as “bad.” Not bad, and most importantly, all of the “good” cases had better off feet than if they had surgery performed to change the clubfeet.
Unlike insulin in the 1920s and 30s or the Covid-19 vaccines in the 2020s, Ponseti’s idea went dormant and didn’t get nearly the PR it deserved. For the rest of the 20th century, Ponseti’s message struggled to be the treatment of choice when it came to club feet.
Instead, orthopedic doctors elected for surgery. They took out bones, amputated, or focused on primarily soft-tissue releases. You release a tendon or ligament from a bone, restructure it, pin it to another part of the bone, and then the foot is repositioned, it comes down. Like replugging a wired mess behind the modem and television, the orthopedic surgeon looks to restructure the anatomy of the foot to give it the appearance of a more common foot that is unburdened with the fact of a clubfoot, if you follow me.
In one surgery (lauded as revolutionary at the time) a doctor summed up the practice of detaching a ligament from the main ankle bone: “In essence, the entire foot is released from the talus, then repositioned and pinned to the talus in a more normal relationship.” The talus is the main ankle bone. These surgeries take hours to perform and have longer recovery times than say the Achilles tenotomy of Ponseti’s method.
What these surgeries offered though was instant gratification: tons of short and medium-term success, but in health, it’s so often the long game that matters the most. These surgeries often resulted in the same results Ponseti saw in the 50s and 60s: loss in flexibility, pain, and functionality.
It would take a retirement, a book (that he credited his wife for writing, even though his name is on the cover), and the rise of the internet for the word to get out on Ponseti’s method and effectiveness, pretty much revolutionizing the whole damn approach to how clubfoot was treated.
In 1996, surgery as the main method dropped to 70%, and by 2006 it had sloped to 10%. Ponseti ruled the day.
As for me, doctors and my mother, who was an occupational therapist, used the Ponseti method on my own clubfeet. The proof is in my baby pictures. But my scars indicate a surgery took place, which if I was born today with clubfoot would have certainly not have happened.
The Achilles tenotomy that’s used in the Ponseti method doesn’t leave the same kind of scars that are on the side of my own feet. Today, I experience pain after long walks and lack of motion, which sounds to Dr. Ponseti’s original post-surgery patients. But then again, my feet do have motion — if just a little. My father doesn’t remember what kind of surgery I had. My mother is passed. I don’t have records that go back that far.
It’s hard to know, but I would guess I had a mix of both the Ponseti and surgery. If I follow similar data, in the early 1990s, when I had my foot surgeries, the wider orthopedics community had still not fully embraced the Ponseti method. But it does mean something that my mom put me in a Ponseti brace. She still found, or heard from one of my doctors, or a book or journal that the Ponseti method was a good method for clubfoot.
What really racks my brain is imagining that this Spaniard-turned-Iowan who used his gentle hands to manipulate tiny crooked feet had a role in changing the fact of my own feet. It is a miracle he even survived bombs, bullets, disease, and travel to end up in such a position. His hands rubbed plaster on wounded soldiers before the world went to war the second time, and held thousands of fragile clubbed feet against his palm — both aimed at getting somebody to walk. All that knowledge he soaked up and tried to spread to anyone who would listen.
That info sunk into the mind of my mother at the dawn of the 90s. I think of her hands placing my feet in the Ponseti apparatus every night, touching my small feet, rubbing them every time they came out of a cast or brace. Neither my mother's nor Ponseti’s hands exist anymore, but both had an impact on giving me the ability to walk.
When we are young, babies and children, we often can’t choose who changes our bodies or why. Ever since they tried changing clubfoot, way back in the ancient times with Hippocampus, or the surgeries in the 18th century, and even the late 20th, I imagine the limping feet. The post-surgery child limping or sitting with a wrapped ankle hoping what just happened would change the facts of their birth. Or the parents looking down at their child seemingly too young to be in a hospital. I wonder, too, about all the cadaverous bodies that provided an education for all these doctors to construct methods and treatments of change.
And some of those hands changed bodies for the worse. The long, gnarly experiment of changing disabilities within the human body has many trials and errors. Lobotomies for mental illness, unnecessary hysterectomies, and the harms of eugenics come to mind on the heavy end. Sometimes, if not much of the time, facts should be embraced rather than erased.
On the lighter-weight end is where my feet exist. I was lucky. Those early manipulations and calls for changing the facts of my birth put many miles of walking ahead of me. But I don’t want to hide the facts of my feet. They are me, and I will live with them, no matter how much the world tells me that I am less because of the way I was born.
I sit sometimes now when it’s quiet and channel all my feelings to the bottom of my feet. I try to feel the floor underneath, feel the ghosts that made them possible.
ENDIT.
Wonderful writing Tuck. I remember you in your brace. I have a pic somewhere…
Very nice Tucker!