Field Notes #48: Lessons from "the brief, wondrous life of little Leo"
Plus, a magical interview with U.S. Poet Laureate Ada Limón, a 10-step guide to creating your own training program, and the liminal space of commuting
Hello, dear friends, and Happy March! We finally got a real snow here in the Hudson Valley, after an odd winter of warmer days. I wonder how you are faring, wherever you are, with this fitful weather. Even though winter is not my favorite season, I was delighted to see the flakes softly falling, the quiet, plush white landscape, the metamorphosis of a season. It felt celebratory, like a birthday that had, at long last, arrived.
The winter weather was fitting, too, because Winter Camp is underway! It’s been a delight so far, with new connections and insights and conversation in our community portal. This Saturday, Rebecca Sturgeon leads a DANCEmandala session. If you are craving connection, and wishing you had joined, reach out. We have more than three weeks ahead together.
This is the weekly Field Notes compilation of health news and tidbits I’ve run across lately: 1 health insight, 2 quotes, and 3 links. As always, I’m wondering if this format is working and what you want to read about. Thoughts, feedback, ideas, are always welcome. Here we go …
1 health insight
I stumbled across this story recently of Leo Babler, a little boy who was born with a rare and fatal genetic disorder, rhizomelic chondrodysplasia punctata (RCDP). The Brief, Wondrous Life of Little Leo was published in, of all places, Outdoors Magazine. But wait, it makes perfect sense.
His mom, Lewann Babler, wrote this story, and explains at the outset Leo’s diagnosis:
“RCDP drastically affects the musculoskeletal, nervous, and respiratory systems. Leo would never walk or talk. The soft tissues in his joints were severely contracted, and he would need daily physical and occupational therapy to relieve pain and, hopefully, someday move his limbs. Even though he was born at a healthy weight, his growth would slow and plateau—leaving him on the small side of the first-percentile growth curve for kids his age going forward. … Doctors explained that spinal surgeries would likely be necessary to alleviate scoliosis, spinal compression, and stenosis (the narrowing of the spinal canal against the spinal cord) as he aged. He would have to be fed through a gastrointestinal tube (G-tube). His immune system was compromised, which meant he would be acutely susceptible to illness. Seizures could be expected as he got older. Experts said Leo would live between one and three years—five if we were lucky.
Leo’s parents, Lewann and Ryan, adjusted and looked for whatever would support his health.
“We balanced meetings and workloads with Leo’s many weekly appointments—often two per day, which I took him to. He regularly saw his pediatrician, a craniosacral therapist, an acupuncturist, a Feldenkrais practitioner (someone who specializes in mindful movement), and a chiropractor. I spent an hour each day doing massage and bodywork with him, typically on the couch with Netflix playing in the background. Except for the pediatrician visits, none of the above were prescribed by his doctors. But the care and focused treatments allowed us to opt out of some of the surgeries—the doctors were surprised at the overall health of his spine, which was mobile and stable though still curved.”
Leo seemed especially happy in the outdoors, so they moved to the mountains, and eventually into a van to travel around the country.
“When we took him to the boardwalk along the Saint Croix River and to local state parks, his eyes lit up and the laughter flowed. Time in nature seemed to energize him.”
They hiked national parks and trails and brought their son with them over thousands of miles, first in a stroller, and then carrying him.
It’s a beautiful story that reminded me of what is possible when we look more broadly at what makes us happy, what other actions help our bodies, what can support our health. Medications and surgeries can be life-saving, but there are so many other dramatically helpful ways of living well that are rarely part of the recommended protocol in our healthcare system.
This is not a new revelation, but I think it’s worth hearing again:
No one knows the full and complete future, including physicians.
Our health is an interplay of many factors, and there are always many things we can do to nurture our health, even when a diagnosis is vast in its scope.
Leo had a marvelous life, loved and happy and cared for. He lived to be 7 1/2.
Read The Brief, Wondrous Life of Little Leo.
2 quotes
“I suppose I could spent time theorizing how it is that people are not bad to each other, but that’s really not the point. The point is that in almost every instance of our lives, our social lives, we are, if we pay attention, in the midst of an almost constant, if subtle, caretaking. Holding open doors. Offering elbows at crosswalks. Letting someone else go first. Helping with the heavy bags. Reaching what’s too high, or what’s been dropped. Pulling someone back to their feet. Stopping at the car wreck, at the struck dog. The alternating merge, also known as the zipper. This caretaking is our default mode and it’s always a lie that convinces us to act or believe otherwise. Always.”
— Ross Gay
I really believe that poetry is something we humans need almost as much as we need water and air. We can forget this. And then there are times in a life, and in the life of the world, where only a poem — perhaps in the form of the lyrics of a song, or a half sentence we ourselves write down — can touch the mystery of ourselves, and the mystery of others.” — Krista Tippett
3 links
U.S. Poet Laureate Ada Limón with Krista Tippett on the On Being podcast — A magical, lovely conversation with plenty of spectacular poems, wisdom, and moments of laughter. The best podcast episode I’ve listened to in a long while. The conversation comes from a live event in Minneapolis, and now we can listen in from any cozy spot in the world.
10 Step Approach to Designing a Training Program from Huberman Lab (PDF download) — Dr. Andrew Huberman, host of the super Huberman Lab podcast, has started offering free resources like these printable instructions, which is a supplement to a recent episode with Dr. Andy Galpin that details how to create your own training program.
Study: Commuting has an upside and remote workers may be missing out (NPR) — As someone who was commuting 2 hours pre-pandemic, and who now works from home, I was skeptical about this headline. But the researchers raise an interesting point about commutes being a source of “liminal space” — that transition time that allows our bodies to detatch from work and recover before switching into home time. This reminded me of the idea of having a work-day shutdown routine. How do you help switch between modes in your life?
I hope you have a wonderful week ahead.
To our journeys,
Brianne