Led by dreams (part 3)

Believe recklessly in whatever bright future you can imagine

This is the final part in a three-part series. Read part one and part two before continuing.

There’s a version of the word “dream” so rich in meaning that it can occupy an entire sentence by itself. You don’t stumble on it often. When you do it’s almost always paired with punctuation we reserve for our greatest expressions of emotion.

“Dream!”

This is “dream” the imperative. It’s a command. It carries urgency. It implies that dreams are not merely objects or activities but, at times, necessities.

“Are you sure this is the right place?”

Becca was confused. We stood at the top of a mountain road overlooking Salt Lake City. Supposedly this eerily quiet slope was the starting line of a half marathon happening that very moment, one of a couple we’d spontaneously chosen that summer to run bandit-style (race directors forgive us).

“Well, we’re a bit late,” I told her. “I think we’ll just have to catch up to everyone.”

Becca shrugged and, harboring just a touch of hesitation in her stride, set off with me down a winding mountain road wet with morning dew. Greying clouds swirled above us, casting doubt on the weatherman’s guess at a rainless run. We zipped our wind breakers up to the neck and settled into our familiar pace.

After a quarter mile jogging without another racer in sight, things began to feel awkward. I put on a confident face against Becca’s side-eye and reasoned through my plan step by step. Did I give Chris and Margaret the right map? Or maybe I turned us left too early?

Thankfully, just then I spotted it. The fog ahead gently traced the edges of a rectangle floating a foot off the ground. As we approached, the past came into focus. A Freshman ice cream social. It was Becca’s and my very first picture together, slid into a plastic sleeve and nailed to a wooden stake. In the photo Becca is talking with a group of girls. My shirt sleeve just barely grabs the corner of the frame, daring for the first time to make an impression in her life.

It didn’t take long for Becca to realize what was happening. Every third of a mile a piece of our past waited for us, anchored in the dirt. We paused for a quick look at each and, on the way to the next, reminisced on that point in our shared history.

Soon, friends and family popped up along the course. They shook cow bells, handed us water and, as soon as we passed by, sped down the mountain hooting and hollering out of passenger windows. The clouds gave out at mile ten. Deciding to save a show of heroic athleticism for another day, we braved the drizzle in style from the backseat of my brother’s Honda CRV. He ferried us down three miles to the final 100 yard stretch of course.

In the heart of a tiny urban park there was only one image left to see, this one a hope for our future: a temple in Provo where we dreamed of getting married.

I got down on one knee at our chalked-up finish line, pulled out the ring I’d been anxiously clutching the entire morning and, surrounded by family, popped the question.

“I love you. I want to keep running with you forever. Will you marry me?”

Becca slipped on her new ring. “Yes!”

Marriage is a waypoint for dreamers. In the ideal, it’s the fulfillment of every person’s hope for love and acceptance. It’s also fuel for the dreams that follow. Through marriage we turn our dreams of love into promises and through those promises don new strength. Two dreamers can shelter a candle in the coming storms better than one.

Becca and I got married just two months after our race. That wedding night we danced in a beautifully-lit banquet hall overlooking a rolling golf course. Our song, Perfect by Ed Sheeran, played over the speakers. Looking at Becca in that moment I couldn’t help but laugh. It was so strange to experience a cliche and confirm once and for all that its propagators were, in fact, telling the truth. A hundred eyes followed us in circles around the dance floor and yet I felt there wasn’t a single soul in the room besides Becca.

I whispered the thought in her ear. She smiled.

Ed explained to the crowd:

I found a love for me
Oh, darling, just dive right in and follow my lead
Well, I found a girl, beautiful and sweet
Oh, I never knew you were the someone waiting for me

Our little family was the only dream of Becca’s that didn’t die.

We passed every other aspiration on to the crematorium. Our engagement half marathon was the last Becca ever ran and soon even long walks became too much. The physicality of her dream-jobs — personal trainer at first blush, physical therapist after a reckoning with salary ranges — was unthinkable, so she settled into a desk. But the mental strain of that caught up to her too. Migraines, heart palpitations, and fatigue overshadowed every normal activity.

When COVID struck we moved in with Becca’s parents to regroup. Twice we tried moving out, and twice we fell from the nest. Never one to go easy on her body, Becca marshaled her remaining strength into our dream of children. On February 23rd, 2021 she brought our daughter into the world. We kept a couple names on hand for when the little one drew her first breath and, independent of each other, decided that “Faith” suited her best.

“I want another as soon as possible,” Becca proclaimed that very day to a Stephen somehow more exhausted than she. On February 16th, 2023 our son Levi was born. That was the last day Becca’s feet ever touched the floor.

Becca found new purpose in motherhood, but there was heartache too. Faith and Levi were full of life. They tousled and clambered and squirmed. How could she be what she wanted to be for them from her cage on the living room couch?

Hopes were high when Becca was finally up to see an autonomic nervous system specialist at the University of Utah. We’d been waiting 8 months for the state’s premier POTS experts to have a look. In a cruel twist of fate, it was the fallout of their grueling stress tests that sealed Becca away into the half-buried coffin of a room where she’s struggled for light ever since.

“I’ve been day dreaming,” Becca said during her first month bedbound. “Us at parks and picnics. Me with a baby I can hold and love.”

The warmth of the image carried us both through the initial shocks of syringe-fed meals and toileting in bed. As her ability to communicate deteriorated, she let go even of these prospective outdoor outings. Her remaining vision of the future was about as humble as could be.

“Couch, family. Content,” Becca told me.
”Possible,” I affirmed.
”Need bare minimum.”
”Progress slow. Then fast.”

I was always sure we were just one new drug away from turning a corner. If not that, then surely in time the natural guardians of Becca’s body would awake, win the war and restore equilibrium all on their own. I often tapped her wrist and whispered a crisp “T.”

We just need more time. Please hold on.

Becca trusted me. Great, unexpected swells of symptoms could pull us out into an ocean of fear for weeks — muscle spasms, muteness, bedsores, hypersensitivity, sleep deprivation and more — but the tide reliably brought us back in. After a particularly dark streak of days, Becca was excited to ground us again with a hopeful vision from her sleep.

“Dream drowning,” She said. “Then change. Shallow.”

Becca didn’t have enough energy to give me all the details at once, so she brought me back over the next couple days for more.

“Long shallow journey,” She said one day.

“Man guiding boat,” Came the next.

Becca’s final hopes rested on this tiny ledge, the possibility that one day she could be anything other than drowning. I let my thoughts trickle into that place. I began to believe in the shallows too. When Becca ran low on hope and asked me to say a word, I conjured up the image of feet warm in the sand and thigh-level waves of foamy seawater brushing past. I’d spend a few seconds in the moment myself, letting each sensation unfold in my mind before painting it back to her.

“Shallows,” I’d start. Then I’d affirm it over and over using a sound that carried my enthusiasm without overtaxing her brain: “Uh huh. Uh huh.”

Except the water never receded.

My remaining resolve was just enough to tread water.

I’d always pegged time as a friend of ours, but soon found its passage wearing us thin. The shore and its shallows left my sight completely. And without a destination in mind, there was no longer a reason to move in any direction. When Becca asked whether she would die, my mind was broken and full of maybes.

I could pretend to see good things ahead. But had any of my positivity actually brought us closer to our dreams?

I came every time Becca called and continued my research into drugs, diet, and healing environments. The routine, however, was vestigial and faithless. We weren’t the only ones suffering. A cursory tour through severe ME/CFS communities confirmed our fear that very few people had sunk as low as Becca and made it back to the surface. Worse yet, we’d exhausted most of the common treatments others pinned all their progress to.

To cope with our new “happily ever after” I pursued a daily cycle of distraction. I read books. Watched movies. Played video games. Ordered DoorDash. On some days even the basest diversions felt too effortful. All I could do was lay in bed, right ear alert and attuned to Becca’s stirrings, left ear taking in a lonely AirPod’s sad songs.

“What was I made for?” asked Billie Eilish.

I used to float, now I just fall down
I used to know, but I'm not sure now

Then, Amelia Warner would offer her prayer: “Please, please, please, let me get what I want.”

Haven't had a dream in a long time
See, the life I've had
Can make a good man turn bad

Maybe, maybe, maybe. Hopelessness bred indecision. Indecision bred inaction. And, after going to bed helpless often enough, I woke up one morning to see that, in a vain attempt at self-defense, I’d put on a mask of indifference. I offered our future up to the wind.

The lighthouse of a dream 28 years old swept across the sea.

“Mom’s dream.” Becca stated one afternoon. “Purpose.”
There’s a reason I was born. And it wasn’t so I’d die like this.

It was the best thing I’d heard in months. Becca wasn’t waiting for me to give her hope, she’d found sparks all on her own. There was enough there to reignite both of us. I quickly agreed: “Purpose.”

Why would Michelle be hounded so relentlessly to bring Becca to life if her fate was to be this, a tortuous death? Surely the same power that weaved her into Michelle’s dreams had a plan for who she could be.

It took a reframing of everything, a radical revision of our dreams to accommodate the thought that this horror could be part of a plan. What others saw as a deviation from life we had to embrace as a core reason for our existence.

The dreams of others buoyed us up as well.

One rare night around 7:00pm I was able to step away from Becca to have a few precious minutes putting our 3-year-old daughter Faith to bed. Following a princess book, a couple Billy Joel songs and a brutal inspection of my blanket tucking skills, I was about to leave. Faith stopped me as I got up.

“Sometimes I dream about Mommy and Daddy.” She said out of the blue.
”Yeah? What about?”
”Daddy and Mommy are driving me to see Donald Duck.”
”Oh.”
”Mommy went to see Donald Duck when she was little.”
”We’ll take you to see Donald Duck one day.”
“With Mommy too? When she’s better?”
”Yes!”

Faith took on a serious expression, one she’d almost certainly picked up from observing the woes of adulthood worn into the faces of those taking care of her. After a moment of reflection, she looked at the ceiling and sighed.

”It takes a long time…”

I was equally impressed and amused at her mature insight. When I crossed back into Becca’s dark room I brought Faith’s dream with me and adopted it as my own. At the next opportunity, I passed it on to Becca.

“Ffff.” I said, and put a hand on her stomach to indicate I was referring to a person. Then, a single fully audible word: “Dreamed.”

Next, I lightly touched Becca’s sternum with my index finger to say “You.” She was curious what Faith had dreamed about her, and indicated with a click that she wanted me to say another word.

“Disneyland.”

Becca chuckled at the idea of making so much progress. But it was already more than a hope for me. I’d made a promise to Faith.

My sister Amy lended us her dreams as well. She conceived of a time when Becca might be well enough to move houses. She dreamed of a cottage on their property built to meet Becca’s unique condition. When she asked other sufferers in a Facebook group what features they’d most appreciate in a tailor-made home, dozens and dozens flocked to dream with her.

My parents made the first investment. They bought a plot of land just up the street and showed their faith in the future by including in the blueprints of their retirement home a soundproof bedroom, gurney-accessible shower and therapy pool. For a week we went back and forth to design a space that could meet Becca’s needs at all levels of ability.

With construction underway, I found my most compelling image yet.

It came to me in a flash one morning and the sweetness is one I hung on to. Each night as I lay in bed, I played it back, carving out in my mind a new pocket of the future and priming my ambition to chisel the road to it. It goes something like this:

I finish dressing Becca in a black bathing suit and gently lift her emaciated frame off of crisp, white sheets. Her arms, still too weak to be around my neck, fall in her lap as I carry her out of the room. We pass through a common area, dancing around the toys that litter the floor and arrive at sliding glass. Just beyond, a small pool waits for us.

I move very carefully now across the slick patio tile and step into the water. My shudder turns into Becca’s as the cold first licks my feet and then overtakes both our bodies on the final steps. I pull her closer. For a few minutes I stand waist deep, buoying Becca up as she completes her therapy for the day. After a few bursts of kicking, her breathing become too much. I feel her heart beating wildly.

That’s when I hold her. I hold her the way that earned us a warning from a blushing lifeguard at a public pool as newlyweds. Becca’s body calms and she leans in, lifting her arms now in the weightlessness of water to surround me. We wordlessly share a secret, that our little trip here was never about the therapy at all, but entirely for this sacred moment of togetherness in the shallows.

I was never allowed enough words to paint the peace I saw ahead, but for weeks, I told Becca about our future home. I spoke one word a day, naming each and every feature, exhausting the list of bells and whistles until I was soon mentioning the height of ceilings and the color of bathrooms. Becca leaned on every word.

On a day when hope flowed easier, I touched Becca’s chest with my index finger to indicate the word “You” and then completed my thought: “R. RJ paradise. K?”

You recover. Then we’ll have a paradise in our new home. Ok?

”K.” Becca replied, and became emotional.
”K?” I asked again. I asked her to truly believe.
”K.” She did.

I kissed her forehead, wiped her tears, and sat for a long while at her bedside.

Late one night my phone buzzed and I pulled a thick blanket over my head.

It was a warm fur with a cold backstory, a gift given to us to celebrate the Payson home Becca had beautifully decorated just months before we’d been forced to abandon it. Now it gave me a few extra degrees in the frigidity Becca required to constrict blood vessels during her flares, and (critical in that moment) a way to shield Becca from the light of my phone.

The text was from her brother and best friend Michael, wondering how I’d decided to respond to Becca’s doubts about the future.

“I actually do believe it’s possible (maybe even likely) to make significant progress.” I wrote from under the blanket. “Ultimately I think fanning that flame is the most productive... It’s the mindset most likely to lead to progress, and it’s part of a larger story of future joy (vs the unknowns of death).”

I believe in the value of all dreams. Some come naturally (or supernaturally). Some we craft on our own. Whatever their origin, all deserve attention — and to the very best, I believe, we owe our entire wills.

Dreaming isn’t about predicting the future. In fact, it’s safe to say that no one is more wrong more often than the optimist. After stumbling through 10,000 words of my dreaming, you now know how far I am still from the ideal. Lives like ours give nihilists a source they can drop in the footnotes of their scribbles on the failures of hope.

The title of “dreamer” has been degraded in modernity, hurled at times with the quality of slur, and shouldered by believers too often with shrinking embarrassment. Unfortunately, there’s a truth to the insult that hurts in deep places: most of your best dreams will end up in the trash.

But you can’t give up. To dream the distance requires humility. You can never know which of your dreams will be fulfilled and which will fail and fade. Or when. The pursuit of a dream is incompatible with pride and only slowed by our demands. Our task is to nurture instead a constant readiness for any outcome.

While the dreamer may know failure best, no one achieves their dreams at a higher rate. I’m convinced that life is entertained by optimists. They produce the most interesting plot lines. The half court shots. The hole-in-ones. The last-lap passes. Realists follow closely behind life. Life watches the hopeful closely, and if sufficiently won over, dares to conspire with them.

After all I’ve experienced (in the past 18 months especially) I have to believe that the exact destination of dreaming doesn’t matter and maybe never did. The victory of dreaming isn’t in the moment where the car is perfectly parked between the prophesied lines and your seat reclined just right over an enviable view. The hallmark of a true dreamer is not relaxation, but fixation. And what the dreamer buys with their finger glued to a point on a map is a priceless thing. They’ve secured a guarantee of movement. All dreams — failed and otherwise — pull us forward, closer to the places we yearn to be.

Brief intermissions and frantic set changes may be unavoidable, but give your dreams a sold-out theater. Shut off the exit signs, bar the doors, and never ever let the light leave the stage.

I’m lucky now to find Becca often in my dreams

One night I attended New Year’s parties with her and cursed myself when I realized I’d wandered into a room without her. After everything we’d been through, how stupid could I be to leave her side? I quickly retraced my steps to a where she was chatting with family at a dinning room table.

Another time I parked our car and hurried around to open the passenger door to help Becca out. She was still learning how to walk, but I gladly carried her inside.

Most recently, I watched her rise from bed and, after declaring “I think it’s leaving…” nonchalantly go about an everyday bathroom routine. At first I was speechless. Then I mustered a little playful indignation to decry her for ever doubting my assurances: “I told you so!”

Following in this flagrant attitude, this new belligerent habit of refuting her illness night after night, I dared to cast an anchor as far out into the future as possible. I imagined the very end:

I am standing in a place that is difficult to describe. It is bright and warm. Comforting. I have the vague sense that I have died. Becca stands opposite me. We hold each others’ hands and celebrate that we’d lived our lives and experienced all the things we’d hoped to. She learned how to overcome great pain, and I was taught what it means to love.

I start to believe these things not because I know they are true, but because I want them to be. On many days I rely on them to do the work Becca’s body demands of me. I need them to somehow be even realer than what is in front of me now. And so, I carefully arrange and maintain our ladders out of hell.

Becca’s questions change and so do my answers.

“R?” She asked not so long ago.
Am I going to recover?

I replied with unnatural conviction: “Confident.”

Weeks ago Becca called me to her bedside.

“Saw girl,” She said. At first I didn’t understand what she meant, only that a certain solemnity kept me by her side for a long time after she spoke.

The next day Becca called me back and I prepared myself to execute one of a dozen tasks commonly asked of me. After hovering near her mouth for a minute or so it became clear that she wanted to communicate something outside our routine. I heard the struggle for words play out in her breathing. Suddenly I understood her. I placed my hand just below her stomach.

“Girl… mini Amy.” Becca finally managed. Just like her mother so many years before, she’d seen a little girl, a precious bundle that wanted to be part of our family. The idea of her one day giving birth again was inconceivably absurd. It was also a beautiful dream and a compelling reason to live.

”Mmmm…” I sighed hopefully, and kissed her womb through the paper-thin blanket that covered her body.

At night I heard Becca whispering in her sleep, momentarily unshackled from earth. “Sweet girl…” She murmured, and showered our dream daughter with kisses.

From our parents to Becca and me, and now from us to our children, the cycle of dreaming continues, inspiring a faster pace, greater power and more perseverance in each successive generation. There are still many days that Becca thinks of death. The thought never truly leaves. But the dreams always return and, with them, the fight for life.

In our dark room we still run together. Led by dreams, we chase all the good that certainly awaits.

We are still kids, but we're so in love, fighting against all odds
I know we'll be alright this time
Darling, just hold my hand, Be my girl, I'll be your man
I see my future in your eyes