The Post I Never Wanted to Write
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.
Here’s one of my favorites: after a fun night in Chicago we ended up at Buddy Guys, then back to the hard Rock Hotel
Who hit every button on the elevator so we could check out all of th guitars on display?
Carmen, of course.
Love you guys. Pray for you every morning.
Jeff I am reading this note as I am sitting with my 94 year old Mom. Three years ago she was diagnosed with uterine cancer that had spread to her lungs. We are now in Hospice at home but it is difficult to have a front row seat to their journey.
Carmen was the light of the second floor at Thomson! Please give her my love. Jennie
Jeff – without reservation, you are one of the most talented writers I know and I always look forward to your inspiring and thought- provoking messages and emails!
Jeff – such beauty and soul in your writings. I never met Carmen but feel as if I know her through your conversations, your writings, and your posts. I especially love the donuts at Christmastime. And know what a marvelous human being she must be. I am navigating caregiving full-time for my 88-year-old dad, and to a lesser degree, my mom. You capture so much of these journeys so gracefully and accurately. I pray for you and Carmen every night. May you continue the beautiful moments of grandkid giggles, movie binges, and sitting on the porch, as long as possible. What an incredible love story you both have. Thinking of you both.
Jeff,
Thank you and Carmen for sharing your story of love and courage. “Love keeps changing it’s job description” but you are the ideal candidate and well prepared for this assignment. Sending love and blessings to you and Carmen.
Jeff, while I don’t have a story to share I feel like I know your Carmen well. Your ability to bring her to life through words is poetry unto itself as evidenced by the this letter. As always, I ask the Universe to be kind to the two of you and offer continued peace.
Jeff, such a beautiful story that only you could write. You and Carmen are in my thoughts and prayers. It was a joy to meet up with you and Carmen at the Colts games. We had a lot of fun times.
Love,
Marsha
Jeffrey – you and I met in 2023 when I was visiting Andrea in Indy. You took time out of your schedule to spend time with me that didn’t guarantee any return. You shared your experience and insights and we “wasted time” together just talking – the way people will sometimes do when they are willing to make a new friend. We haven’t spoken since and I just happened upon your LI post – and this article.
I am grateful for the beautiful, heartfelt way you share your current experience. The beauty of your realizations is a blessing for all of us – if we choose to “waste a few minutes” to join you on your journey.
From a physical distance I send you my encouragement and offer my prayers.
God bless your moments.
Jeff Villmer, St. Louis, MO
Dear Jeff – please give Carmen a big hug from me. We went to ICA together. I always admired her -she was very sweet and always had a smile. My mom had Alzheimer’s for 13 years and it was an honor to take care of her. I can tell you love her by your beautiful writing and I can picture Carmen so well. You are to be admired for you devotion and love for her -and in that respect she is a very fortunate lady. Take good care of her and also yourself- Connie
Hello Jeff & Carmen. I also went to ICA with Carmen, she was always so much fun and so funny. I went to the Indy 500 one year with Carmen and her parents. I had never been in a Cady going 80mph! What a memory! Thoughts and prayers for both of you. My sisters and I took care of my mom for a year and a half after dad died, now I miss those times. Love to Carmen, Dar
Praying for your family Jeff
Carmen is one of the nicest people I have ever met.
Thank you and bless you both.
Jeff, you write beautifully!
I know it is a blast from the past in our Lauth days, but I do remember so fondly being welcomed into your home and spending time with you both. I remember Carmen being such a light that I looked forward to seeing! I had no idea of her illness. Though I’m 11000 miles away, sitting just a small walk away from the feet of the Sphinx, I’m sending you both virtual hugs of love and light! Thank you both for bringing joy into that moment of my life!
So glad you are still able to share all those great little moments amongst the heavier, crushing ones. I have a Carmen, and I watch her giving everything in her own caregiving life now, so while I have never met your Carmen, I feel for you both, and hope the great moments far outweigh the others in hers and your stories for the time you have left together.
Carmen in the 7th grade… wearing so many bangle bracelets to science class. She explained to me that it was ok… because she wore the gold ones on the right and the silver ones on the left. We had so much fun teasing our teacher and making ?batteries?!? Yup, we made batteries!
Jeff thank you for loving someone I have loved and enjoyed her company when we were in High School .
Carmen was a precious friend. I will pray for you and her
My husband was diagnosed with dementia 6 years ago, he is always wanted to keep me laughing and even with his dementia he keeps saying he will never forget me and keep me laughing is still his primary goal. My primary goal is that he takes his medication.
Tell my sweet friend that I love her and if possible I would love to come visit this spring.
Jeff and Carmen, I don’t know you, other than Jeff my childhood cousin, seeing your posts and reading my brother Kenn’s updates. I am so very sorry you are walking this road. I am praying for you both to have the strength you need to keep on keeping on; to keep trusting the Lord for the next step; to somehow celebrate joy in the midst of the pain and questions. It’s something the Lord has been teaching me the last 3 years, my first three of widowhood. May He give you a quiet peace.
Jeff, I am rocked by your journey. You are correct in that I empathize and know loss, but not yours.
This is our calling and your humility and greatly crafted words portray all that we are called to do when His domain becomes reality. I love you, brother and will keep you in my prayers. Thank you for sharing as the confluence merges our journeys! Stay safe
Jeff
Jeff,
My own path is paralleling yours, though not nearly as steep a climb. I’m now 76. My son Brandon is 33. He first came into my life at the age of 15 as the result of a Google search for a school project. We quickly connected over our love for photography and I soon stepped in where his birth family wouldn’t with college and scholarship applications, campus visits, etc. When they threw him out (not wanting a gay son in the home), I took him in and adopted him.
Brandon arrived with PTSD from what had been 18 years of abuse. Since then he has developed numerous disabilities: diabetes, diabetic polyneuropathy, fibromyalgia, long Covid, myasthenia gravis, hearing loss, and more. On a good day, his pain level is mid-range. As he nears the end of the six weeks between Ketamine infusions, it hovers between nine and ten. Some days, Brandon can care for himself; some days not. Yet most days, those who meet him have no idea of the suffering he is carrying. This was not the journey either of us had anticipated either. We used to joke about me retiring and moving in with him, caretaking for the grandchildren. I haven’t retired, and he still lives with me. Any grandchildren are in the far future.
While your journey with Carmen and mine with Brandon are different in many ways, one of the common threads is unconditional love. I didn’t know that it was possible until Brandon came into my life. For that gift alone I will be forever grateful. You and Carmen are in my prayers.
Jeff, I am so sorry to hear about Carmen. Your words are so beautiful, and clearly they have touched a lot of people. Please know that Adam and I will keep you, Carmen, and your family in our thoughts and prayers. Sending you so much support.
Best,
Ali Atkison