, , , ,

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 Jeff standing together near Multnomah Falls, surrounded by forest and flowing water.

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.

/20 Comments/by
, , ,

Watching the River Run – A Message to My 17-year-old Self

Watching the River - Terry Webster & Jeff Ton playing guitars - 17-year-old self

A few weeks ago, my wife Carmen and I went to see Jim Messina, you know, half of the Loggins & Messina duo from the early 70s. He and his band were playing at a small intimate theater. Our seats were in the second row. I was pumped! Messina of Poco, Buffalo Springfield, and yes, Loggins & Messina was country rock bordering on country. There was a time in my high school days when Loggins & Messina was about all I listened to. I had all their albums (that would be vinyl boys and girls). You could call this my “acoustic phase,” with Loggins & Messina, James Taylor, Bread, and more.

Jim opened with, “Thinking of You”

Something inside of me
is taking it hard each day
Something inside of me
is making me feel this way
Whenever you’re near me, you’ve got me thinking of you*

As we sang along, something started to happen. The cares of 2023 seemed to float away. With barely a pause, he flowed right into “Watching the River Run”

And it goes on and on, watching the river run
Further and further from things that we’ve done
Leaving them one by one
And we have just begun, watching the river run
Listening and learning and yearning to run, river, run**

Run, river, run…the song…1973…years before I fell in love with being on a river in a canoe…years before Carmen and I met and began to canoe together…years before my executive coach, Dan Miller, taught me the river metaphor…

The opening chords of the next song, “House at Pooh Corner,” interrupted the stunned connection I had made…rivers…rivers of life

So help me if you can, I’ve got to get
Back to the house at Pooh Corner by one
You’d be surprised, there’s so much to be done
Count all the bees in the hive
Chase all the clouds from the sky
Back to the days of Christopher Robin and Pooh***

Suddenly, I was no longer in the theater. I was in a place quite familiar yet, long forgotten. In front of me on stage were two teenagers playing guitars…acoustic guitars. The song they were playing was beautiful. The guitars weave the melody together almost as one. “Loggins & Messina Suite #9″…of course! I wrote that song, rather, Terry Webster and I wrote that song in the summer of ‘75. We were 17. We were both into Loggins & Messina, so, of course, when we wrote an instrumental using our acoustic guitars, we had to name it in there honor!

Wait! How did those two kids know that song…I looked closer…the one on the left looked a lot like Terry…maybe his kid? Who am I kidding, could be his grandson. But, the kid on the right…the kid on the right…that was ME! As the final notes faded into the air, he looked right at me. My palms began to sweat. My heart was racing. I gulped as he walked toward me. Holy shit! What would I say? What would I tell my 17-year-old self?

He put down his guitar. He put down MY guitar. He nodded, and I picked it up. Soon, I was playing the bridge to “Loggins & Messina Suite #9”. Then it came to me. This is the little tune I play for my grandson Jordan! How could I have forgotten? I turned to me…well, the 17-year-old who would be me.

“You would love Jordan. He’s such a great kid! Actually, you’d love all your grandkids!”

“Grandkids, what are you talking about out, old man, I’m 17.”

“Jeff, I’m you. We have six grandkids, with another on the way.”

“What? You can’t be me. Grandkids?!!? At least I know what happened to your hair,” he laughed.

“Man, we have a lot to talk about! Let’s go for a walk.”

Son put down that guitar

If I really had the chance to talk to my 17-year-old self, I would have a lot to say.

When I was 17, the only thing I could think about was being a rock star. It consumed almost every waking moment, it had since I was 10 or 11. There I was, a junior in high school, and I had no plan other than playing guitar and writing music. I had no idea where to go to college (not going was not a choice). I opted to go to Indiana State to major in music theory and composition because I had three other friends going there, including Terry.

What I would SCREAM at my younger version is to put down the guitar…you have no talent (I didn’t), you have no drive (I rarely did anything other than jam), and the lyrics you are writing are simplistic. I doubt I would have listened. I certainly didn’t listen to those around me at the time…but, hey, maybe I would listen to my old man-self.

I would tell him to pick up a keyboard. In 1975 computers filled rooms. We had a couple of weeks of Fortran programming in Miss Hobson’s math class. We had to write the programs out longhand, then take turns at the one keypunch machine. Our punch cards were then sent downtown, and maybe, just maybe, they would run.

Sometime during my Junior or Senior year, our school was fortunate enough to be on the rotation for a mid-range computer that was sent to various schools in the area. It was for the “computer club.” I think I got to see it one time because I was not in the club. Only nerds were in the computer club, and I. was. not. a. nerd! (Well, I was, I just didn’t know it yet.). The only thing I ever remember them doing on the computer was running horse race simulations. At any rate, I didn’t touch it.

If I had the chance, I would tell the much-younger-version of me that one day, in the not-so-distant future, he would fall hopelessly and madly in love…with writing software. He would study day and night. He would read countless textbooks. He would learn from those around him. And he would become a rock star…in software development. If only I had the chance to tell him…

Don’t be in such a hurry

At 17, I was in a hurry. In a hurry to finish high school. In a hurry to grow up. I wanted that big break that would allow me to become a star. What the 17-year-old-me could not have known was what I would miss.

I opted to take part in the work-study program during my senior year. You see, despite not really studying, I was a good student. I could have graduated early, but my parents would not allow it. What they did agree to was the work-study program. While other kids were having an incredible senior year, I got out of school at 11 o’clock and went to my job. You see, I wanted things. I wanted a car of my own. I wanted to visit my girlfriend, who lived several hours away. I wanted to impress her, she was two years older than I was and already in college.

So while others were doing all the things seniors did, I went to work. I rarely hung out with my peers. I became a bit of a loner because, well, my girlfriend didn’t live in Evansville. Today, when I look back, I only remember a handful of kids from high school. I lost touch with them in my haste to grow up.

My 17-year-old self would laugh at the thought of getting married at the end of my first semester of college, yet, that is what I did. Married, at 18. I was in love. We were going to make it work. I dropped out of school after one semester and got a job at a sporting goods store, and dreamed of opening a record store (hey, if I couldn’t make records, I would sell them). I would move my wife to Elgin, Illinois, so that I could attend a small liberal arts college and major in creative writing. I would drop out of school again, promising to return when my wife graduated.

And, in 1978, at the age of 20, we would have a son. A beautiful baby boy. A boy, with a boy.

Growing up too fast. I got a full-time job at a bank, working collections on bad credit card debt. I still wrote music, but the life of a rock star seemed so very far away. The marriage would last twenty-three years and give me two incredible sons before it ended in a very painful divorce.

I would tell that version of me to slow down. To enjoy being 17, 18, 19. To stay in school. To study computer science. If it were right, she would still be there. I probably wouldn’t have listened, lord knows my parents had tried to tell me.

Stop following and start to lead

Following was easy. Heck, I chose what college to attend because three kids next to me in the circle, when asked where they were going to college and what their major would be, answered Indiana State and music. It was the first time I ever declared it. I answered because it was the easy choice…to follow.

Growing up, my mom used to joke that, unlike the old cigarette ad, I would rather switch than fight. What she saw as a peacemaker, I saw as following. It was easier.

Even after growing up and becoming a computer programmer (a “dev” as we call them today), I would rather code. I was gifted. I could listen to someone describe a problem they were having, and I could solve the problem with code. The computer keyboard became my instrument, and I could make it ROCK! Be a manager, no! Be a leader, hell NO!

There is a debate about leaders…are they born or made. As I look back, I was always a leader. The other kids always followed me (good or bad). When I was 10 or 11, a minister asked a group of kids to name a great leader; one of the younger kids piped up and said, “Jeff Ton,” much to the laughter of the congregation. In high school, despite becoming a loner in my Junior and Senior years, prior to that, I led at church, in my neighborhood, in Scouts, and at school. Rarely in a position of leadership but naturally leading those around me.

Still, it was easy to follow. Leading was hard. Following meant I could blame the leader. Leading meant “playing politics.” 17-year-old Jeff would be stunned to see 65-year-old Jeff. After getting dragged, kicking, and screaming into leadership, I became quite good at it. I led teams across the globe. I led departments. I led companies. I have led a community of my peers for over a decade. I now teach leadership to executives and emerging leaders alike.

Step up! Find your voice! For god’s sake, lead!

The River

The river runs. Always changing.

If I had the chance, I would say all these things and more to the younger me.

“Talk to your parents and grandparents. You will have questions for them when they are gone.”

“Don’t do it!” (boy, THAT covers a LOT of ground)

“Oh, and go back to history class and study Lewis & Clark. You won’t believe how THAT turns out!”

But, honestly, I hope me wouldn’t listen. I hope me would travel the river exactly the way we traveled it. I would not want to miss all the joy and laughter. I would not want to miss all the pain and tears. I would not want to change anything because, looking back on 65 years, that river made me who I am today. It gave me a wonderful wife and partner, two incredible sons, six (soon to be seven) grandkids, several dear, dear friends, and a community of hundreds of peers.

And it goes on and on, watching the river run
Further and further from things that we’ve done
Leaving them one by one
And we have just begun, watching the river run
Listening and learning and yearning to run, river, run**

 

*Songwriters: Jim Messina - Thinking of You lyrics © Concord Music Publishing LLC
** Songwriters: Jim Messina / Kenny Loggins - 
Watching the River Run lyrics © Concord Music Publishing LLC, 
Gnossos Music / Milk Money Music, Universal Music Publishing Group
*** Songwriters: Kenneth Clark Loggins - 
House at Pooh Corner lyrics © American Broadcasting Music, Inc.

Jim Messina

 

/3 Comments/by

I Saw My Father…

Could This Be Your Father As Well?

I was scrolling through my LinkedIn newsfeed as I tend to do several times a day, when I saw a post.

A post I can’t get out of my mind.

I’m not sure what caught my attention first, probably the image. But with a glance so quick, I didn’t comprehend the context – other than the man.  

Then I saw the opening lines. 

“Pale Stale Male Privilege at its finest!

The sign, not for him.” 

The sign…what sign…oh, that sign, now I see it.

What yellow and black line? Oh, that yellow and black line, now I see it. (note: apologies for the blurring of the sign – whoever posted this was reflected therein.)

I had to click “see more”… 

The Comments

What followed can best be described as a snarky commentary on this man.

The comments that followed the post were 13 – 2 in the same tone. Because…

  1. he was standing on the wrong side of the tape–he must feel he is privileged.
  2. of the words he used–he must be a misogynist.
  3. of his reaction when confronted–he must be angry. 

I looked back at the picture.

It haunted me.

The Man, The Father

The man in the picture. Standing at the counter. Speaking with the staff behind the counter. Probably oblivious to the sign (I missed it at first glance), probably oblivious to the line taped on the floor (I hadn’t noticed it either).

After all, he’d been in this office dozens of times before. He doesn’t see well – doesn’t pay attention to details. He probably never saw the tape on the floor. Same reason he lost his driver’s license a year or two before. 

Suddenly, I didn’t see an unknown figure.

I saw my father.

The Dementia, The Father

I saw my father as he began to struggle with the onset of dementia. No way Dad sees that sign. No way Dad sees the tape. Dad can’t even comprehend what is happening in our world. 

And his comments to the staff behind the counter? Calling them “darlings” and “lovely ladies”?

There are many forms of dementia. Not everyone who has dementia has the memory problems of someone with Alzheimer’s.

My father had frontotemporal dementia (the behavioral variant frontotemporal dementia [bvFTD]). 

This was the Reverend Doctor Ton. The pastor of pastors. The leader of leaders.

This was the man who was a champion of the civil rights movement in the 60’s and 70’s. He was the man who stood up for the rights of the LBGTQ community in our churches.

My father was the man who hired the first female executive minister in the entire denomination, who first put women on equal footing in church leadership, who promoted women in the ministry every chance he had. 

And yes, this was the man, who at the end of his life, flirted inappropriately with waitresses, nurses, friends and acquaintances. 

Why? Because he was a “Pale Stale Male”? Or because he was a “good boy”?

Because bvFTD is a type of dementia that attacks the brain in such a way as to make you lose cognitive ability.

It attacks the brain in such a way as to make you lose your social filters. It attacks the brain in such a way as to make you lose the ability to effectively process language.

The Fear, The Father

At the end, my father had the cognitive ability of a five-year-old.

His social filters were basically gone.

Can you imagine the fear felt as your world closes in around you? As your ability to make sense of things diminishes? You have the memories of an 87-year-old, but can’t comprehend the sign in front of you? 

And then some stranger points out you are doing something wrong – while you have no idea what it is that you are doing wrong?  

Even though I am an “old white guy”, I am a champion for diversity and inclusion.

I am an ally.

I believe in speaking up. 

We Are In This Together

I don’t know the man in the photo, nor do I know the poster, nor was I in the room during the exchange between them.

What I do know is that we are all in this COVID-19 reality together.

We need to show each other grace and not assume we know someone’s motivations, their attitude, their fears, or their confusion.

Let’s help each other – let’s support each other.

That man is probably someone’s father.

In a few years, that man could be me…or you. 

/1 Comment/by
,

Just Gene

Just Gene - Rivers of ThoughtFor some, the title of this post will conjure up images of Sean Hayes’ character on the first iteration of Will and Grace, Jack McFarland, throwing both his hands up, palms forward to face-box himself and exclaiming, “Just Jack”. While that moment became iconic in the annals of television, I’d like to share a different moment…a moment I had recently with my dad, Gene. No, face-box, “Just Gene”.

Many of you know, my dad is suffering from a somewhat rare form of dementia: behavioral-variant Frontotemporal Dementia or bvFTD. This evil disease, although in the same family as Alzheimer’s, doesn’t manifest itself in the same way. Dad still recognizes everyone, can recall the minutest detail of something that happened 30 years ago, or 30 minutes ago, and, other than having an 88 year-old body, is in decent physical health. I sometimes describe him as a person with cognitive abilities of a 5 year-old, with the memories of 88 years.

One of the ways in which this disease manifests itself is in the form of delusions. The formal definition according to Dictionary.com is “an idiosyncratic belief or impression that is firmly maintained despite being contradicted by what is generally accepted as reality or rational argument, typically a symptom of mental disorder.” For dad, this means he experiences things around him that are not real, but he firmly believes they are. For example, my mom comes to visit him quite often. Mom passed away five years ago…and he knows this, yet she visited, or they took a trip, or even played golf together. Like a “real memory” he can describe these events in great detail and these details rarely change as he retells the story time and time again.

When he first started experiencing delusions, I would calmly and matter of factly explain to him that they are not real, that he really didn’t go to Chicago last week, or that his ceiling light did not move three feet across the room. As this delusions grew longer, more involved, and more intertwined with reality, his doctors advised us to just go along with the story. Unless he is frightened, endangering himself or others, just go along.

We have had many visits these past few months where he is in midst of a delusion and incorporates us in. On one such visit, he was clearly leading a church meeting. There were twenty people in his room. When we arrived, he interrupted the meeting to introduce us to the group, told us he would be wrapping the meeting up shortly, and then we could visit. As you probably deduced, the room was empty save for me, my wife Carmen, our grandson Jordan, and, of course, dad.

All of which brings us to my story of “Just Gene”. I stopped in to visit with dad a few days ago. When I entered his room, I found him like we find him quite often. Laying on his bed, fully clothed (including shoes), resting. It was about 5:30 in the evening and he had just returned from dinner down the hall. I pulled up his walker, which has a seat as a part of it, and sat down next to the bed for our visit. We talked about his day, we talked about his meal, we talked about his tv not working (uh, I turned the cable box on and wha-la it worked). I changed his clocks, it being the Monday after the fall time change. I crawled on the floor and picked up his phone, knocked there when he had tried to get up at some point in the last few days. We talked about my upcoming trip to LA, we talked about Carmen not feeling well, we talked about little Jordan and Braxton.

“So, Dad, what else have you been doing? Have you been down to activity time?”

“No, I’ve been way too busy.”

“Busy, doing what?”

“Well, I don’t know how these groups find me, but I keep getting asked by these church groups to help them with this problem or that problem. Groups from Chicago, from St. Louis, from all over. I don’t know how they even know who I am.”

“Well, dad, of course they know you. You lead the baptist churches here in Indiana for years. You were a very well respected expert on congregations and church management. Of course, they want insights from the Reverend Doctor.”

“I suppose you are right. But, this last one did not go well.”

“What do you mean?”, I asked.

“They just weren’t getting it. I could not get them to understand. I finally had to give up. I needed to get back here and they just wouldn’t listen.”

“I suppose that would be frustrating, but you had to run into that many times during your career, right?”

“Not often, but sometimes. One of my congregations was especially difficult. It always hurt deeply when I saw them going in the wrong direction, for the wrong reasons. We had a couple of churches leave the Association. They felt that was what was best for them.”

“I have always been proud of being the son of Reverend Ton. I loved to listen to you preach. I loved it when you got into character and acted like you were one of the Apostles, that always got my attention,” I told him. 

“Yes, sometimes you have do something a bit different to get your point across. You just can’t stand up there behind the pulpit week after week. But, you know, here I am not Reverend Ton. Most don’t even know or care. Here I’m just Gene. And, I kind of like that.”

There you have it. Just Gene. And that feels good to him.

I have to admit, it is something I rarely have thought about…the sacrifices. The sacrifices he, and countless others, had to make to follow their calling. The long hours of running the business of a church during the day, rushing home for dinner, only to have to go back to oversee the various meetings of the church at night. The need to always be “on”. Always “special”.

Just Gene.

Dad spoke of missing so much of our lives as kids, instead, having to rely on mom as the primary parent because she was home…and he was not. It occurred to me, even something as simple as visiting someone’s home for dinner, and always being called upon to say the blessing, because, after all, he WAS the Reverend.

Just Gene.

I remembered the times he and I would go to play golf. Invariably, as a twosome, the course would pair us up with another twosome to complete a foursome and off we would go. Dad always introduced himself as Gene. Just Gene. Not Gene Ton, not Reverend Ton, just Gene. After one such round in which we had been paired with a particularly “rowdy” gent, who liked to swear and tell off-color jokes, I asked him why he didn’t tell him who he was or what he did for a living. “Well, because it would make him uncomfortable and he would change the way he was acting. He was here to relax, play golf and blow off steam.”

I have no doubt, knowing my dad, he would do it for the other person. But, the realization was dawning on me, that maybe, just maybe, he was giving himself a break from being the Reverend Doctor Ton. Maybe in some deep recesses of his brain, he needed to be “Just Gene” occasionally. Maybe that is part of the battle going on within his mind today. As the disease takes over more and more of his brain, it is a tug of war between the calling of his lifetime…to lead, to counsel, to challenge, to comfort…and his desire to be…Just Gene.

/10 Comments/by
, ,

Sounds of Silence

Sounds of SilenceThey were a last minute Christmas gift…tickets to see Art Garfunkel. In fact, they were so last minute our seats were in the very last row, a row with only two seats, tucked way in the back of Orchestra Left. The concert was a month after Christmas. As it turned out, timing could not have been worse…or perhaps timing could not have been better.

In the four plus years since Mom died, we have been on a journey.  Even before she died, Mom knew there was something not quite right with Dad, but didn’t know what. It would be almost three years to the day after her death that we finally had a name for it: Behavioral Variant Frontotemporal Dementia, bvFTD for short. Being on this journey with my father is an honor, but it has been (and will continue to be) the hardest journey of our lives..

The week leading up to the concert was a blur. We knew Dad was growing more frail by the day. His falls were starting to happen much more frequently. We knew his cognitive ability continued to decline, his ability to make basic decisions for his own comfort and safety (decisions like to wear a coat, hat and gloves when the temperature was below zero) was fading away. His need for more and more prompting to perform the most basic of the activities of daily living, such as getting dressed, or even eating, increased at an accelerating pace.

And then, the delusions. Somewhat rare in bvFTD cases, but then bvFTD is a rare form of dementia, and especially rare in someone so elderly. In the course of six weeks, Dad relayed several “stories” as fact: visits from mom (dead over four years); a shopping trip he never took; and, the adoption of three children just a few days prior. It was this story that triggered the nursing staff at his assisted-living facility to alert the administrators and the administrators to call a meeting with me (his Power of Attorney) and my wife, Carmen, his primary caregiver.

Time…time…it was time. Time to move Dad, yet again. This time he would be moving to Hickory Hall, otherwise known as the memory center. We all knew it was time, honestly, it was probably past time, however, this was a step I was hoping to never have to take…why couldn’t his body give out before his mind? I scheduled a call with my siblings to talk over the plan. At the advice of staff, we would tell him Wednesday morning, I would take him out of his apartment, Carmen would pack what things he could take, movers would come, and when the room was ready, he and I would take that dreaded walk to Hickory Hall.

It would be easier on Dad if he didn’t have time to think about it. For us on the other hand, we didn’t sleep for days…second guessing the decision…dreading the conversation…second guessing the decision…honestly, being a little pissed at God…second guessing the decision…

Wednesday. The Day. As the grey Indiana morning light began to dimly light our room, we realized the freezing rain predicted the night before was indeed here. School closings, traffic accidents, and meteorologists filled our morning news. After steeling ourselves for yet one more difficult conversation with Dad, the move was postponed a day. Another day (and night) to dwell on the upcoming conversation and the second guesses.

The move would now be Thursday. The day Carmen and I were to be going to dinner at our favorite restaurant and then enjoying the Art Garfunkel concert. My god, we were going to be exhausted. No way to get refunds at this late date. Wednesday evening we set out clothes for working through the move, and another set to wear to dinner and the concert.

The next morning was not much better, but at least the roads at least were clear. As I tried to get in a couple hours of work before our appointment at the retirement center, I noticed a car stopped in our driveway just outside the gate. Carmen donned her coat, hat and gloves to slip-slide her way down the gravel drive (hey, I said the roads were clear, our driveway, however, was still a sheet of ice). It turns out the woman had hit the ginormous pothole a couple blocks north of our house. Her front right tire was flat and the rim bent beyond recognition. She had called a tow truck.

Well, at least it was a distraction. Some time later, I saw another car pull into the opposite end of our U-shaped drive and navigate around to the gated side. After Carmen donned her coat, hat and gloves and made her way down the drive, we learned it was the woman’s husband. He collected her wheel covers from down the street, talked with her for a bit and then proceeded to back out the full length of the drive, running over one of the driveway markers in the process. Ugh!

Finally, the tow truck arrived…and parked in our yard (ugh!) while the tow driver changed the tire on the car. Two hours after first pulling into our drive, everyone was gone, leaving behind the two wheel covers the husband had retrieved.

The distraction gone, it was time to head across town. The conversation with Dad lasted about 30 minutes. He debated as he had in the past. The bitch about this disease is because the cognitive abilities and executive functioning are so degraded the afflicted person does not have the ability to understand they are sick. In the four or five years Dad has been battling this, only once has he acknowledged he has any sort of problem.

The way I describe the difference in this move and the one 18 months ago is this. 18 months ago I was very frustrated with Dad (me not yet understanding the disease). I was able to use that frustration to be stern with him as I told him he had to move. THIS time however, all I felt was heartbreak. It was all I could do to remain strong, yet compassionate; remain firm, yet empathetic. Hell, it was all I could do to keep from crying.

After the conversation, we helped Dad finish getting dressed and I took him down for his morning meds and to occupy him for the next five or six hours. Carmen had about two hours to get his belongings packed and the furniture marked before the staff would arrive to relocate what things he could take with him. Looking around the apartment, I had no idea how she was going to accomplish it. Who am I kidding? I had no idea how I was going to occupy Dad for six hours. I could take him to a museum, but he was so weak he would last about an hour. I could take him to a movie, but they don’t start for another two hours.

As we walked down the hall, I started talking about our beloved Indians. Dad and I had been going to baseball games together for several years. I have never been too sure if he is going “for me”, or I am going “for him”. At any rate, for four hours seven times a summer we hang out at the ballpark taking in a game. Watching players come and go. Laughing at the way the lines are laid. People watching. And talking of my baseball “career”. In Dad’s mind, I was an all star Little League catcher. Leading our team to the league championship. Orchestrating our big win on the final day of the season. (For you Scrooged fans, insert a joke here about the Courtship of Eddie’s Father). Reality was far different. While I loved the game, I really sucked as a player. My role at the all-star game? Catcher? Outfielder? Pinch Hitter? Benchwarmer? Nope…I gave the Little League Pledge before the game, I hadn’t even made the team. So…maybe a silver lining in this dementia-thing (sorry, I have to joke or I would cry).

As we sat at the nurses station, Dad would tell everyone that would listen (and many that wouldn’t or couldn’t) that he was being put in prison today. He was moving to the memory center. My mind was still on how to pass the time. That was when Larry arrived. Larry is probably Dad’s oldest friend. The two had worked together for many years at a couple of different churches and organizations. Our two families were dear friends. Larry stayed with us throughout the morning. Shared lunch with us at the noon hour. And, sat in the library with us while we all talked, waited, and passed the time.

I kept up with Carmen’s progress via text messaging. After lunch I ran back up to the apartment to disconnect the television, DVD player and computer. I was amazed. I still don’t know how she did it, but everything was ready to go, even with the movers arriving 45 minutes early. The move began. Carmen now shifted from packing to un-packing. I headed back down to Dad (and Larry).

A couple hours later, it was time. The room was ready. We hugged Larry goodbye, and Dad and I made our way to the memory center. I don’t know what was going through Dad’s mind. What was going through mine were the images from 55 years ago of a scared little boy being dropped off at Kindergarten for the first time, not wanting to let go of his father’s hand; the images from 35 and 30 years ago of a young man dropping his own sons off at their first days of school…and, them pleading with me not to go.

Carmen had done a wonderful job of getting Dad’s room ready for him. Many of the things that he holds dear were placed around the room. Here and there I could see touches of my mom. I doubt Dad saw any of it that first day. One of the nurses took him by the hand to show him around the facility, while Carmen and I finished a few things. When Dad returned he wanted to lay down. We hugged him…kissed him…and said goodbye.

We spent the drive home recapping the day to each other. Exhausted, emotionally, physically, exhausted. We plopped down on the couch. We had about an hour before dinner. What we wouldn’t do for a power nap. Nope…brains on overload. Instead, we sent a quick update to the sibs, trying as much as possible to keep them in the loop.

We changed and headed out to dinner. Nothing could push the thoughts of Dad out of our minds. It dominated our dinner conversation. Even the French and Dirty martinis couldn’t take the edge off. We ate, taking a bit longer than planned, then rushed to the concert, arriving just a few minutes before show time. We made our way to our seats…very last row, a row with only two seats, tucked way in the back of Orchestra Left.

Neither of us had seen Garfunkel (nor Simon for that matter). The show was a combination of Art singing and telling stories from his sojourn across the United States years before. We loved the format. Art’s voice betrayed his age when he sang, the stories ranged from humorous, to touching, to downright strange.

As the opening strains of the first song, “The Boxer”, filled the hall, Carmen began to cry.

I am just a poor boy
Though my story’s seldom told…

…When I left my home and my family
I was no more than a boy
In the company of strangers
In the quiet of the railway station…

…In the clearing stands a boxer
And a fighter by his trade
And he carries the reminders
Of ev’ry glove that laid him down
Or cut him till he cried out
In his anger and his shame
“I am leaving, I am leaving”
But the fighter still remains…

*Lyrics: Paul Simon; Copyright Universal Music Publishing Group

As he talked and sang, we were barely holding it together. At one point he relayed a story of talking with his father. I wish now I could remember the quote. I have tried to find it online, but to no avail. Something about telling his father, “You were the author of your life, your story set the stage, so I could be the author of mine.” Something like that…I really wish I could remember. What I do remember, is both Carmen and I inhaled audibly when he said it.

Late in the second set, Garfunkel paused, looked at his notes and said, “Ah, the words that change the course of my life forever…”

Hello darkness, my old friend
I’ve come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence

Using another Scrooged reference, “Niagara Falls, Frankie.” I was now sobbing uncontrollably, my body convulsing….but still singing along….

In restless dreams I walked alone
Narrow streets of cobblestone
‘Neath the halo of a street lamp
I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence

To my right, Carmen was doing the same, tears streaming down our faces…

And in the naked light I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never share
And no one dared
Disturb the sound of silence

All the emotion from the past week came pouring out. I am sure the people in front of us thought we were nuts…

Fools, said I, you do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you
But my words, like silent raindrops fell
And echoed in the wells of silence

Carmen dug tissue from her purse and by the end of the song, we had pulled ourselves together…

And the people bowed and prayed
To the neon god they made
And the sign flashed out its warning
In the words that it was forming
And the sign said, the words of the prophets are written on the subway walls
And tenement halls
And whispered in the sounds of silence

*Lyrics: Paul Simon; Copyright Universal Music Publishing Group

Maybe, perhaps, the very last row, a row with only two seats, tucked way in the back of Orchestra Left was exactly where we were supposed to be that night…sitting among the sounds of silence…  

/12 Comments/by
, ,

The Land of Serendip Revisited

The Land of Serendip

Once upon a time, in a land not so far away, lived a King, his three Princes and his one Princess, and their wonderful spouses and families. When we last visited the Land of Serendip, the Princes received a visit from an Angel, we now return, 18 short months later…

The King of Serendip was about to embark upon another journey. The Prince of Whitetail issued a proclamation on the King’s behalf. “Hear ye, in the name of the King! Let it be known across the land, the time has come for the King to leave the Forest of Hawthorne and reside instead in the Village of Hickory. The Princess of Whitetail and I will see to it he has the necessary comforts for the journey and for the winter ahead.”

As the word spread throughout the kingdom, messages were delivered from the Prince of the Western Lands, the Prince of Raymond, and the Princess the Green Lakes. Each messenger brought words of support and the offer to travel to the Forest of Hawthorne if need be. The Prince of Whitetail sent them on their way with assurances there was no need for them to undertake such journeys.

The day of the King’s journey was soon upon them. The Prince took the King by the hand and led him from the Forest, while the Princess and her porters packed some of the King’s belongings to be sent on ahead to the Village of Hickory. The King was distressed, he did not want to leave the Forest. The Prince and the King halted at the shop of Maidens of Medicine for the King’s treatments and to ensure his room at the Village of Hickory was ready for his arrival.

The wait merely added to the Prince’s feeling of dread for the journey ahead. He tried valiantly to relieve the King’s distress, while the dread mounted within his soul. His mind was racing with thoughts of threads to pull. What was that sound? The sound of someone approaching. The Prince looked momentarily without recognition, but then…the veil fell from his eyes to reveal Sir Larry of Sayre! Why was he here outside the Forest of Hawthorne?  

Familiar with the journey ahead and being a long time friend of the King, and much older (and therefore somewhat wiser) than the Prince, he’d come from afar to provide the magic of listening ear to the King. As the sands in the hour glass slowly moved from top to bottom, he was there to share the burden of the Prince and Princess. Through his laugh, through his stories, through his heart of empathy and compassion, he was able to lessen the King’s distress and cause the Prince’s dread to nearly vanish.

As mid-day faded and the shadows lengthened, it was time. The much older (and somewhat wiser), Sir Larry of Sayre, with a tear in his eye, bid adieu to the King and Prince as they took the road toward the Village of Hickory to meet the Princess.

The King and Prince arrived at the Village of Hickory, where the Princess was just finishing up with the King’s room. She had done a wonderful job preparing the way and ensuring even the smallest detail was tended to for the King.

—

Thank you, Larry. Thank you for not asking, because the answer, as you knew, would have been “Nothing”. Thank you for knowing what was needed even when I did not. Thank you for being you. Thank you for being present. You gave us more than you will ever know…then again, maybe you do.

/2 Comments/by
,

Divine Coincidence – The Window

Divine Coincidence Divine Coincidence, the term an old friend of mine (thanks Melva) uses to describe those moments in life when the unexpected happens in an otherwise routine day. These might be moments of “small world-ness” (like flying to Paris, taking a train, bus, and taxi to an old castle, walking into the grand hall of the castle, and seeing someone you know from back home), or they might be moments of “serendipity” (like a dear friend buying a cabin and needing furniture at the same time you are downsizing your father’s house), and sometimes, on rare occasions when the universe aligns the stars, they are moments that takes your breath away.  This is one such tale.

Blogging is an interesting hobby. You write, you post, you hope your words resonate. I am thrilled when someone “likes” on a post and even more thrilled when they comment on a post. When I meet someone and they mention they read my musings, it touches a chord deep within my soul. (Buck, for someone reason Carly Simon is singing in my head, right now). And then… and then there is this story…

Carmen and I were in the midst of a large remodeling project on our rental house. Her mother and husband were scheduled to move in in a few short weeks. Carmen wanted to give her mom a special surprise…a garden window in the kitchen. She called a couple of local window companies and settled on Faerber’s Bee Windows.

On the day of the appointment, Bee Windows’s representative, a man in his fifties, arrived and introduced himself as Ty Swincher. They walked next to the rental house and now stood in the kitchen (or what used to be the kitchen before it was stripped to the wallboards and subfloor.) Ty re-read his paper work, looked at Carmen and hesitantly asked, “Mrs. Ton, by chance do you know a Jeff Ton?”

Carmen tiring of all the work and the endless stream of contractors, laughed, “You mean the guy that is paying for this? Yes, I know him, he’s my husband. Do you know him?”

Ty put down the paperwork and began to explain.

“A few months ago, we had a horrible mole problem in our yard.”

Carmen is smiling now, still not sure where this is going, but knowing we have been battling those little devils for years. Just the week prior, we had been talking to our friends John and Ruth Vess about “mole eradication techniques”. The maze of tunnels criss-crossing our yard flashed in her mind. She was about to warn him not to get his mole advice from me.

“Well, we seem to have gotten rid of the moles, but then our yard was just a maze of dead grass and humped trails where their tunnels had been. Someone told me the best way to repair the yard was to be sure to evenly water the entire yard. So, I went to Google and began to research sprinklers.”

By now, tears were beginning to form in the corners his eyes. “That was when I came across your husband’s blog about “The Sprinkler Head”. That post changed my life. I made my kids read it. It has changed our relationship. You see, I’ve learned recently that I have skin cancer. I will be going in for another surgery in a few weeks.”

In a flash, memories bombarded Carmen as she remembered the post about that old sprinkler head. Months before, as we packed my dad’s belongings and moved him to an apartment, she had repeatedly told me to be sure and claim some of dad’s tools. I would mumble something about having all the tools I need and then some. I didn’t need anymore tools, I insisted. But, she knew better. Her dad had passed away 22 years ago and she still clings tightly (and occasionally lets me use) the tools of his that she had managed to keep.

She knew my dad would never be able to use them again, and he, himself would be gone from us one day. She knew we would want them. I finally decided she was right. I selected a few things to save, among them was the old sprinkler head. It was the memory of her father and his own battle with cancer that now flooded her mind.

As Ty finished the story of his upcoming cancer surgery, both he and Carmen were now crying.

As they stood in the garage of the rental house, Ty declared,  “You know, I couldn’t figure out why they sent me out on this job. I don’t typically make sales calls. I’m one of their most senior Project Managers.” At that moment, they both knew the answer.

A few days later, I had a chance to meet Ty when he delivered the estimate for the window. He thanked me for the post as he retold the story. He and his wife were leaving in a couple weeks for a trip of a lifetime to Belize. His surgery would follow their trip. As we talked, I learned more of his background. Prior to joining Bee Window, he had been a sports reporter and columnist. His column had been syndicated and appeared in papers across the midwest.

I reached out to Ty this week to see how he was doing. Their trip to Belize was a magical as you might imagine, sunrises on the beach, hiking ancient ruins, swimming with nurse sharks and giant sea turtles. But the surgery has had to be postponed until June for a variety of reasons so he is still facing that with a bit of trepidation. 

Call it a serendipitous moment, call it a small world moment, or call it a Divine Coincidence, it’s a moment I will remember every time I put pen to paper (or fingers to keys, as the case may be), it is a moment I will never forget.  Ty, I am thankful my words touched your life, your story has profoundly impacted mine, thank you for sharing it with Carmen and me!

Connect with Jeff on LinkedIn.
Or Follow Him on Twitter (@jtonindy)

Jeff blogs on a variety of platforms:

/0 Comments/by
,

The Sprinkler Head


dad, family, loveIt came when I least expected. I can’t tell you how many times I have walked through that garage. Dozens? Hundreds? At that moment something caught my eye. I had seen it a million times, but had never given it more than a passing thought. What was that? Today, I had to know. I walked over and picked it up…WHAM! A 2×4 right between my eyes. Holy shit! Dazed, I staggered back,as I did…UMPHFFFFF! Jeeeeeeeezussss! A sucker punch right to the gut. It would be cliche to say, “life passed before my eyes”, nay,  lifefroze before my eyes! As the moments passed, life did indeed pass before my eyes…but it wasn’t my life.

I could see them, mom supervising the planting of the spring flowers, no longer able to help, much less do any of the work. I could hear them discussing which flowers to put where, how best to plant them, and my mom’s reminder to dad to keep them watered.

Life rewound…to happier times. They would shop together at Wild Birds or Altums, picking out the perfect feeder or plant for the small manicured lawn, chattering excitedly as they drove home to place it just the right spot. Later, holding hands as they walked around the yard to examine God’s handiwork.

There they were again, moving into their new home in the retirement community. Doing it for the kids, they’d say. The pride they took in decorating the house just so. The paint colors, the fabrics, the knick-knacks. Out front was a flag pole, shrubs trimmed just so. Welcoming. The prettiest house on the block. At Christmas (a favorite time of year), lights were hung, their twinkle giving the appearance of falling snow.

Now there is a different house. They look younger. This house had something special. Grandkids! Five in all. Oh how they loved to visit Mimi and Popper. Mimi would spend hours with them exploring the scary crawl space. The boys begged for her to take them down there…even though they were a little bit afraid of the dark. Calling out occasionally in shaky voices, “Mimi are you still there?” I’m right here, just shine your flashlight this way,” would come the response.

Popper loved to play in the yard with them. They would play hide and seek for hours on end. The giggles once again giving away the best hiding spot yet!

The house and yard was as you might expect. Immaculate (except after the visit of the grandkids!). The grass mowed and trimmed. The trees bursting with leaves. In the back, were his rose bushes. He would meticulously prune them, fertilize them, and water them. He loved to take her and point to each blossom at is began to unfold.

A new image takes the place of this one. It is a house with four teenagers. Chaotic Sunday mornings getting everyone ready for church. The house was decorated with dozens of banners. Each one made with love and care. Each one with one of her favorite quotes, or scriptures. “Bloom where you are planted”, “Marantha, Our Lord Come”, “Celebrate”, “For God So Loved the World”. The newest one placed in the entry hall, the others hung throughout the “Wreck” Room (hey it WAS a house full of teenagers!).

Together they would explore their faith, their relationship, and their marriage in new light. She was beginning to be her own person. Yes, she was still the minister’s wife, and, very, very proud to be. But she was learning that she had a ministry as well. She could write! At first it was for a Sunday School lesson, then short magazine articles, finally a book. Yes, a book! I could not tell who was more proud…her, or him.

As before, the image fades and a new one takes its place. The kids are younger now, but then so are they. The house is a huge old house next to the church where he served. The house was clean and tidy, despite four young kids (don’t look in their rooms). The garage held the car. THE car! One of the first new cars they had owned. The car was hand washed and waxed…it sparkled. He loved to take her for a ride in the car, letting the wind blow through the open windows (4×4 air conditioning they would call it).

Every Sunday, she would sit in the balcony with the kids (squirming less visible there) and look on with pride as he tended his flock. He was magnificent. His faith and passion exposed with every word. His hair was dark, his eyes flashed. Without anyone being the wiser, he would look to her for affirmation that his words were heard and his message, nay, God’s message, was delivered. After church, they would all sit down for Sunday lunch around an ancient kitchen table.

The images came much faster now, like life as we age, the years moving faster and faster. They were getting younger. The four kids, were three, then two, then one. Then it was the two of them. She dressed in white. Beautiful, simply beautiful. He dressed in black, barely able to breath as he looked at her. Handsome, eyes blazing.

They were teenagers now. He making excuses to go visit his friend Chuck just so he could catch a glimpse of her. Acting totally cool and disinterested, in his rolled-cuffed jeans. She just happening to leave this doll, or that doll out so she would HAVE to go pick it up, her dress clean and bright, like she had just put in on (because, of course, she had). Days, weeks, and months before he would work up nerve to ask her out…to a church youth event (yes, a first date at a church youth event, would you expect anything else from him?).

And then it stopped. I was back in the garage. That same garage, I had been in countless times before. That same garage, where we stacked some of her things when she passed three years prior. That same garage, where I helped him fix his golf cart to make sure he could still get around, even though he could no longer drive. In my hand was a sprinkler head. The shelves before me, organized meticulously, untouched in the three years since mom had died, just as she and dad had left them, now covered with dust and cobwebs. Frozen.  It was frozen. Nothing touched, nothing moved in three years.

We were there to pack dad to move from this house to an apartment. He would be safer there. He would have better care there. We were moving him from this house. The last home they had together. The house where she laid and took her last breath. The house where he had hoped to take his last breath to join her once again. He isfamily, dad, love no longer able to care for the house, I said. He is no longer able to care for himself, I said. He cannot live alone anymore, I said. It is the right thing to do, I said.

I carefully placed the sprinkler head where it had laid, even straightening it, just so. Packing the garage would wait for another day. I took a deep breath, wiped away a tear, and went back in the house to continue packing. Later, as Carmen and I left for the day, I held my hug with dad just a little bit longer, kissed his check a little bit firmer, told him I loved him just a little bit louder. Finally knowing, what I had known in my heart for a long time…he died when she did three years ago this month.

 

Connect with Jeff on LinkedIn.
or Follow Him on Twitter (@jtonindy)

Jeff blogs on a variety of platforms:

 

 

 

/5 Comments/by