Rivers of Thought
On Love, Legacy & the Discoveries Along the Way
Last week, I published “The Post I Never Wanted to Write.” As I was preparing to publish it, Carmen and I read through it several times, bawling our eyes out each time. When I hit “publish,” we didn’t know what would happen, but we wanted her story “out there.” We hoped the post would land gently. We anticipated some who read it to reach out.
We received countless messages of kind, supportive words, of virtual hugs, and of offered prayers. What we didn’t expect was for the post to gather people. Many people shared their own stories of caregiving, of long-held grief and pain watching a loved one struggle, of gratitude for sharing our story so they did not feel so alone.
The image that kept coming to me was that of a campfire. Let me explain. In Uncharted Moments, I retell the stories of Carmen and me as we traveled the Lewis & Clark Trail. Many days, in fact, most days ended with us sitting beside a campfire. There we would quietly reflect on our day, on trials and the joys. To this day, we still do this at the end of each day.
I think about Lewis and Clark and the people of the expedition. Every day was filled with toil, challenges, and hardship. But also new sights, sounds, and experiences. Each night, they would build a campfire and gather around. It was more than warmth to dry their wet clothing and warm their tired bodies. They told stories of the day, the fear of facing a grizzly, the pain of prickly pear cactus piercing their moccasins,the wonder of seeing thousands of bison, or the waterfalls, and the mountains. Those who could would journal.
The river demanded everything by day. The fire gave something back at night.
That’s what this week felt like. Not progress. Not answers. Just presence.
What I thought was a single story became a shared fire.
Caregivers found each other. People told stories they’d been carrying alone. Some grief was new; some was decades old.
The common thread wasn’t disease. It was love that refuses to leave.
Resilience isn’t built by powering through. It is build by stopping long enough to be seen.
Sometimes the bravest thing isn’t paddling harder. It’s sitting by the fire and telling the truth about the day.
I’m glad I wrote the post. Not because it was easy. But because it reminded me that none of us are meant to carry these stretches alone.
The river keeps moving.
The fires keeps burning.
For now, that’s enough.
We proceed on — together.
I always thought this space would hold stories—of life, of music, of family, and the small graces of finding our way together. I thought the hardest posts would be the ones I wrote when each of my parents passed.
I was wrong.
This is the post I never wanted to write.
It’s about Carmen.
It’s about disease.
And it’s about love, stubborn as a river, carrying us even now.
Carmen and I at Bridal Veil Falls — early in our journey together.
How We Got Here
For a long time, Carmen called it “the fishbowl.” Dizzy spells, balance that wobbled, handwriting that started to lean and stutter. We visited doctors who looked thoughtful and then not. Finally, someone said, “You need to go to the Cleveland Clinic or Mayo.”
We chose Cleveland.
A neurologist pulled up the MRI, leaned toward the screen, and said, “Your cerebellum impresses me.”
I tried to joke. “We don’t think we want her cerebellum to impress you.”
He shook his head. “No. You don’t.”
The words that followed arrived like hail: Multiple System Atrophy, cerebellar type (MSA-C). Degenerative. No treatment. No cure. Average timeline measured in years you can count on one hand, maybe both.
We rode home in silence that wasn’t empty, just heavy. You know the feeling if you’ve been there—the sound the soul makes when the floor drops out.
Since then, we’ve chased second opinions and third confirmations. We’ve learned new vocabulary we never asked for: rollator, autonomic, orthostatic, and anticipatory grief. We’ve learned how bodies can surprise you, even when you love them fiercely. We’ve learned to grieve in real time.
What Daily Looks Like Now
Carmen once crossed a room the way sunlight crosses a wall—quiet, sure, taking everything with her. Now she uses a rollator and footsteps that shuffle. We purchased a powered wheelchair for outings that require more steps than her body can handle.
Her voice—the one that used to sing through a room without trying—has a tinny edge now, syllables arriving in little bursts, breath paying a toll at every turn. Restaurants are hard. Parties harder. Phone calls require a kind of gymnastics the larynx didn’t sign up for.
She used to be our chef, the hostess who could coax a holiday into happening with nothing but flour, butter, and a list she wrote in that elegant hand I loved so much. Now the kitchen is a maze. The microwave is a mountain.
Then there are the invisible things: blood pressure that drops fifty points when she stands; temperature regulation that forgets its job. These are the quiet alarms we don’t like to talk about. They remind us what’s still to come.
And still—please hear me—she is here. She is Carmen. Grace in a human frame. Humor that keeps showing up. Dignity that refuses to yield the field.
Sacred Ordinary
We’ve always talked about sacred places—how holiness can be a cathedral, yes, but more often it’s a porch. These days, the sacred shows up at 5:30 p.m. on ours, when we drag two chairs into the soft light and call it cocktail hour. Lemonade or tonic for her most nights. It doesn’t matter. The ritual is the sacrament.
Grandkids swarm the house and bend the day toward joy. Carmen can’t chase a ball now, but she can play a rousing game of Uno. She can say yes to makeup sessions and TikTok cookie recipes. They orbit her like she is gravity—because she is. Little Hayden loves to ride “gamma’s car”—her wheelchair.
We binge-watch shows side-by-side. We sit with squirrels. We read old cards and the little notes couples write when the world still feels endless. We touch what time can’t steal.
Sacred isn’t loud.
Sacred is steady.
The Love Story I Didn’t Know I Was Writing
When I began the book that has become Uncharted Moments, I thought I was writing about Lewis and Clark—rivers, road miles, history’s big arc. Somewhere between Fort Clatsop and the stretch of the Natchez Trace near Hohenwald, Tennessee, I understood: I was writing about us. About the woman beside me with the unflappable kindness and the eyes that see both what is and what could be.
She isn’t my Sacagawea. She is — and always will be — my Lewis. The one with a compass lodged somewhere behind the ribcage, the one who would say “we proceed on” with a half-smile and mean it.
I used to say the river taught me how to listen. Carmen taught me how to arrive.
What I’m Learning as a Caregiver
I closed a business I loved. We traded the retirement we imagined—long flights, new stamps in the passport—for hallways and ramps and a different kind of itinerary. I help her into the car. I rub oil into her legs after a shower. I learn the choreography of pillboxes. I fold laundry at 10 p.m. and feel, strange as it sounds, lucky to be the one folding.
Love keeps changing its job description and then handing me a fresh badge. It is less about grand gestures and more about staying. Less about perfect words and more about the breath you take together on a Tuesday when the kitchen is quiet, and there’s a vase of grocery-store flowers trying their best.
There are hard days. Anger with no clean address. Tears that don’t explain themselves. The fear that comes at 3:17 a.m. and wants to explain everything.
But there is also this: we are here. We are not alone. Family shows up. Friends show up. Neighbors carry casseroles and joke about deer in the tomatoes. Nurses and therapists move through our lives like angels of mercy.
If you’ve been praying for us, texting, calling, bringing soup—thank you. You are holding a corner of the map.
Reading the Story More Fully
Years ago, while we were following the Lewis & Clark Trail, Gerard Baker’s voice at the Filson on Main turned our heads and hearts toward a wider story—one that didn’t erase heroism but insisted on context, cost, and a chorus of voices. That practice—of looking again, listening longer—has become a way of life here, too.
Illness wants to shrink the world to symptoms and schedules. We keep choosing to read the margins. To notice the parts that don’t fit neat lines. To honor the whole of a person, not just the chart.
Carmen is not her diagnosis.
She is the builder of a family that didn’t come by blood but by love.
She is the smile that made holidays ring.
She is the woman who, when I dragged us waist-deep into a stream for citizen-science training, looked up at passing teenagers in waders and said, “Be careful who you fall in love with—this could be you,” and then laughed like she’d just invented sunlight.
What I Ask (and What I Don’t)
I don’t have a list of action items. We’re not fundraising or campaigning. We’re learning to let people love us in practical ways and to say yes more often than our Midwestern instincts allow.
If you want to help, the best gift is presence—notes, stories, photos, a memory of Carmen being Carmen. Tell us the small thing you remember: the casserole she brought, the way she made your child feel seen, the time she quietly fixed something no one else noticed was broken. Those are the strands that braid a life.
And if you’re a caregiver or you love one, I see you. You are doing holy work in grocery aisles and waiting rooms. You are building cathedrals out of Tuesday afternoons. Keep going. Breathe. Ask for help. Say yes.
Confluence
There’s a fifteen-star, fifteen-stripe flag near my desk—the one Carmen gave me that flew over Fort Clatsop on my birthday. I look up at it when the house goes still. It feels like a kind of tenderness, mast and map both. It reminds me that the real expedition was never the miles under our wheels. It was the passenger seat beside me.
MSA-C is the terrain we never wanted to encounter. It is also not the whole country. The map is bigger than the diagnosis. There are porches still, and grandkid giggles, and movie nights where nothing much happens except that we are together and the lamp makes a soft circle on the rug.
We are navigating a stretch of river the charts call conjectural—the old word for places not yet fully known. The Corps of Discovery used it for gaps they’d fill in later. I like that. Not denial, just humility. A willingness to proceed without pretending certainty we don’t have.
So here we are. Proceeding. On.
If you pray, pray. If you remember, share. If you love us, keep doing what you’ve been doing. We’re grateful for every hand on the rope.
And if you’re reading this because you’ve been walking your own uncharted season: you’re not alone. The river knows the way. Love knows the way. Sometimes the bravest thing is to sit on the porch, hold the hand that has held yours, and let the evening light do what it does—turn the ordinary into something hallowed.
We proceed on.
A note before we begin:
I’m sharing this story again because it still matters to me — maybe more now than when I first wrote it. It’s about my grandpa, a pair of old donut machines, and a family tradition that has carried memory forward for decades.
This year, we didn’t make the donuts.
We planned to. Brad, Katrina, and Jeremy offered to help. The intention was there. But the holidays arrived with their usual swirl of schedules, obligations, emotions — and, honestly, fatigue. Carmen and I just didn’t have it in us. Not yet.
And I’m learning that sometimes honoring a tradition doesn’t mean forcing the ritual. Sometimes it means holding the story with care and trusting that the right moment will come — maybe in January, or February — when the kitchen is quieter, and the heart is ready.
So for now, I’m sharing the story itself. Because even when the machine stays unplugged, and the flour remains in the cupboard, the meaning hasn’t gone anywhere.
Grandpa’s Donuts
Some of my fondest memories of my Grandpa Williams revolve around his two magnificent donut machines.
Every time — without fail — when he came to visit, all four of us kids would run out to meet him as he got out of the car. We’d jump up and down with excitement, all asking the same question:
“Did you bring the donut machines?”
Every time — without fail — Grandpa would look at us, scratch his head, and say,
“Oh my… I think I forgot those back in Milwaukee.”
Then he’d begin digging around in the trunk of his car. And sure enough, tucked way back behind all the luggage, there they were.
The machines.
They were actually called Brown Bobbies — old donut makers from another era. My great-grandmother had given them to Grandpa in the late 1920s.
During the Great Depression, Grandpa made donuts in those machines and sold them at the Post Office where he worked. Five cents for two donuts. He needed the extra nickels to help support his growing family.
As kids, we didn’t know any of that history. We just knew the donuts were magical.
On one of his trips to visit us in Evansville, Grandpa wrote the recipe in the front of my mom’s cookbook. He must have known that trip would be his last.
When Grandpa passed away in 1971, my mother inherited one of the Brown Bobby machines.
For years, it came out only occasionally — maybe for a church bake sale, maybe just to prove it still worked — but over time it fell into disuse. Eventually, it ended up tucked away in the back of a closet.
Then, in the mid-1990s, something unexpected happened.
I was a new manager and wanted to do something special for my team at work during the holidays. I asked my mom if she still had Grandpa’s donut machine.
She rummaged through the closet, pushing aside boxes and coats and forgotten things — and there it was. The Brown Bobby. Waiting.
We plugged it in, fingers crossed it would still heat up.
It did.
I donned Grandpa’s old apron — handmade by my Grandma, with stitching across the front that proudly proclaimed the wearer to be “The Doughnut Man.” As Christmas carols played softly in the background, Mom mixed the batter the way Grandpa had taught her, and we started making donuts.
And something magical happened.
As the donuts baked and the kitchen filled with that familiar smell, Mom began to tell stories about Grandpa. Stories we hadn’t talked about in years. Stories that brought smiles, laughter, and tears.
Gone for nearly twenty-five years, Grandpa was suddenly right there with us — remembered not with silence, but with warmth.
A new tradition was born.
Since then, the Brown Bobby has come out many Decembers. Some years for big batches. Some years for small ones. Sometimes with family gathered close, sometimes with just Carmen and me in the kitchen — moving more slowly now, taking our time, letting the
smell do the remembering for us. After my mom passed, and then a few years later, my dad, the ritual changed shape again. What had once been something handed down became something we were now responsible for carrying forward. Carmen has been at the center of that — steady, patient, and quietly determined that the tradition not be lost, even when the pace softened, and the batches grew smaller.
And this year?
This year, we paused.
Not because the tradition no longer matters — but because life asked us to move at a different pace. Because honoring memory also means honoring where you are.
The donuts will be made again. I know that. Maybe when the calendar turns quiet, and winter settles in for real. Maybe when the kitchen feels ready.
Until then, the story still holds.
Because traditions aren’t just what we do on a certain day.
They’re what we carry forward — gently, honestly, and in our own time.
And sometimes, the most faithful thing you can do…
… is wait until love has the energy to rise again.
