Prologue: Whistle for Me, Kippy

“We know what we are, but we don’t know what we might become.” —William Shakespeare

July 2012

I was walking my dogs down a wooded path in Forest Park when my phone rang. Two months earlier, I’d given blood for a DNA test that would confirm—100 percent, yes or no—whether I had muscular dystrophy, the same disease that had taken my father from standing strong to using a walker to confined to a wheelchair in fifteen years.

The neurologist’s voice was careful, measured.

“The results are back,” he said. “They confirm what we suspected. The deletion on chromosome 4 is similar in size to your father’s.”

They still had his records. Somehow that hit me as hard as the diagnosis—seeing our names paired on the same terrible branch of the family tree.

“What does that mean for me?” I asked.

He explained that based on my dad’s progression, he expected mine to follow a similar path. Then he said the line that lodged in my brain like shrapnel: “You’ll probably be using a walker within five years.”

I sat down on a fallen log, dogs panting beside me, and tried to breathe.

*

The whistle should have been my clue.

When I was a kid, my dad was always trying to teach me to whistle. He’d pucker his lips and blow, producing a clean, sharp sound that cut through backyard noise, through distance, through chaos. Then he’d turn to me with that encouraging grin.

“Your turn, Kippy. Just like this.”

I’d purse my lips as hard as I could and blow. Nothing. Or sometimes just a sad, breathy hiss.

“That’s okay,” he’d say. “Try again.”

We practiced for years. In the car. At the dinner table. Walking to the park. He never seemed frustrated, never gave up on me. Just kept asking: “Can you whistle yet, Kippy?”

I thought it was a game. A dad thing. A quirky challenge he enjoyed.

It wasn’t.

Later I learned why it mattered.

Facioscapulohumeral muscular dystrophy, FSHD, often shows up first in the face, though not always. And one early sign can be difficulty puckering your lips—whistling, blowing up balloons, even drinking through a straw.

My dad could whistle. The question was whether I could.

And he already knew the stakes.

He’d been diagnosed when I was in high school. By the time I graduated college, he needed a walker. By the time I had kids of my own, he was in a wheelchair. I watched the strongest man I knew—the man my siblings and I used to dangle from like a human pull-up bar across the top of the refrigerator—slowly lose the use of his arms, his legs, his ability to move through the world the way he wanted to.

And all those years, he’d been checking on me.

Can you whistle yet, Kippy?

He never told me. Never burdened me with the knowledge of what he suspected. There’s no treatment for FSHD, no cure. What would have been the point of saddling a kid with that fear?

But he’d been listening for it anyway. Hoping, maybe, that I’d escaped. That the genetic coin flip had landed differently for me.

It hadn’t.

*

My dad had grown up in brutal poverty during the Depression. His single mother would sneak her three kids out of cheap hotels in the middle of the night when they couldn’t pay the bill.

Despite everything—poverty, muscular dystrophy, a body that betrayed him year by year—he never carried himself like a man defeated. He was gregarious, strong-willed, funny, fully alive until the day he died in a car accident in 2002.

He never got the chance to see me become a person who tried new things. But he’d planted something in me with that whistle.

Can you do this yet, Kippy? Not “you can’t.” Not “you shouldn’t.” Just: Can you? Let’s find out.

*

In 1997, fifteen years before that phone call with the neurologist, I’d been sitting by a pool watching my kids play when a woman named Karen invited me to try tennis. I’d never played before. I rattled off excuses. She pushed back.

“Come on, Kippy. I don’t know how to play either. It’ll be fun.”

That decision—to try one thing I didn’t know how to do—changed my life.

That year, I learned tennis. The next year, fencing and Rollerblading. The year after that, rock climbing. Then wakeboarding, spelunking, telemark skiing, surfing, aerial silks, stand-up paddleboarding, hiking the Appalachian Trail.

By the time I got the diagnosis in 2012, I’d been learning one new sport every year for fifteen years.

I didn’t know then what I was training for.

*

Sitting on that log in Forest Park, dogs circling back to check on me, I thought about what FSHD does. It tells your body to contract. Muscles weaken. Movement becomes harder. The world gets smaller.

And I thought about what trying new things does. It forces you to expand. To reach. To move in ways your body and brain haven’t moved before. To stay curious. To stay engaged. To choose the unfamiliar over the safe.

For fifteen years, without knowing it, I’d been practicing the opposite of what this disease wanted me to do.

And now, sitting in the woods with the diagnosis confirmed, I had a choice to make.

I could listen to the neurologist’s timeline: walker in five years, wheelchair after that, slow decline.

Or I could keep going.

*

I stood up from the log. The dogs looked at me expectantly, tails wagging, ready for whatever came next.

“Walker in five years,” the neurologist had said.

I was fifty-two years old. I’d been trying new sports for fifteen years. I’d stood on a ledge a thousand feet up a rock wall and learned what it meant to be fully present. I’d gotten stuck in a cave and learned to soften and breathe. I’d faced my fear of surfing because loneliness felt heavier than sharks. I’d hung upside down from aerial silks because a surgeon told me I couldn’t.

I wasn’t about to stop now.

But here’s what I finally understood, sitting on that log: my dad had been training me all along.

Not to whistle. I was never going to whistle—the muscles wouldn’t cooperate when I was six, and they don’t cooperate now.

He was training me to keep trying to whistle.

Every time he asked, “Can you whistle yet, Kippy?” and I couldn’t, and he said, “That’s okay—try again,” he was teaching me something that had nothing to do with making a sound. He was teaching me to show up for the attempt. To pucker my lips and blow, knowing nothing might come out, and to do it again tomorrow anyway.

I’d been a perpetual beginner at whistling my entire life. Decades of trying. Zero mastery. And somehow that was okay. Somehow, I kept at it. That’s the prototype. That’s where it started.

Every new sport I learned was just another version of the same practice: show up, try something I didn’t know how to do, fail, adjust, try again. Not to master it. Not to prove anything. Just to stay in the game of attempting.

Whistling is the thing I’ve been failing at longest.

The sports are just my way of continuing the practice.

*

I called my husband Patrick from the car.

“It’s confirmed,” I said. “I have it.”

He was quiet for a moment. Then: “Okay. What do you need?”

“I need to keep moving,” I said.

“Then that’s what we’ll do,” he said.

My grandmother had FSHD. My father had it. Now I had it. Years later, my son would get it too. Four generations of bodies that wanted to contract. Four generations of people who kept trying anyway.

*

I started this book sitting on a log in the woods, holding a diagnosis that said my body wanted to contract.

I’m finishing it twenty-eight years into a practice of expansion.

Not because I’m brave. Not because I’m special. Not because I don’t get scared or tired or frustrated. But because my dad taught me—without ever saying it out loud—that the question isn’t “Can you whistle?”

The question is: “Will you keep trying?”

*

My name is Kippy.

I can’t whistle. Never could.

But I’ve spent twenty-eight years doing what my father taught me: showing up as a beginner, attempting things I might never master, and trying again anyway.

This is the story of how I kept trying.

It is a memoir. This story reflects my present recollections of experiences over twenty-eight years. Some names and identifying characteristics have been changed to protect privacy. Some events have been compressed, and some dialogue has been recreated from memory.

The sports are real. The falls are real. The diagnoses are real.

And the dream that started it all? That was real too.