On the day of my greatest professional achievement, I had a 20-minute timer running on repeat.
From the edge of a high-backed wooden chair I watched with excitement as 2,500 HR professionals filtered in and out of the digital conference my team and I had somehow pulled together in four months. Attendees built their agendas for the day, and in addition to committing myself to the “Red Track” of sessions, I layered on 12 personal appointments: Visits to my wife Becca.
My in-laws’ formal dining room was not the command center I imagined leading the day from. Becca and I had moved in with her parents months before on account of her mysteriously declining health and over time my workspace drifted closer and closer to wherever she was resting
My alarm went off just as things started rolling. I stood up, tearing my eyes away from the fast-scrolling chat on the sidebar of our opening keynote, and hurried around the corner to the master bedroom. I opened the door and stood just inside. The blinds were shut and the lights dim. Becca lay motionless, obscured by shadows in a recliner near the center.
The room, appropriated from her parents for its ground-floor convenience, was most of Becca’s world. On occasion, I carried her to an identical recliner in the living room. It was a special treat when she could watch our 2-year-old eat, tolerate some reckless banging on the piano, or roll out to fresh air on the patio. But on most days her hyper-sensory state demanded seclusion.
I paused for a moment just inside the room, one hand on the knob of the cracked door. Was she sleeping? Becca would have noticed me by now, tipped off by the clinking of the door handle and a subtle increase in brightness. After thirty seconds of silence, I reset my timer and left. Then it was back to the rush of the conference. A couple of Slack messages and a small fire were waiting for me.
The following 28 hours passed in a blur. By afternoon the next day it was clear our team had accomplished something special. I was amped up on one of life’s most addictive feelings: Momentum.
Two days later I quit.
I exported lists of leads for event sponsors, wrote up my strategy for the next stage of our community’s growth, and — after a few virtual goodbyes to coworkers — shut my laptop for good.
In a LinkedIn post I explained that life had led me to a fork in the road. I could either clock in at work or clock in for my wife. For years I had tried giving my best to everyone, but if that balancing act had done anything to contribute to my wife’s current state, it couldn’t continue. We had to start pulling her in the other direction.
From the outside it seemed abrupt, but I’d been planning my exit from the workforce almost as long as I’d been planning the conference. First Becca and I discussed it. Then I told Becca’s mom. Then her dad. Then my CEO. Then my team. I slowly closed conversations with companies who were actively recruiting me for life-changing roles.
The truth is my natural ability as a marketer is 10x what I have in me as a caregiver. Doctors know everything, drugs cure all, and there isn’t a deadly fate modern medicine can’t outwit… That was the optimistic attitude I blasted Becca with early on. And boy was I wrong. A recurring thought devastated me: She would certainly be better off in the hands of someone more curious and present.
There was a lot of daylight between the mortal me and a master caregiver, but on that day I was proud of myself. Proud to have chosen her over everything. In reality, becoming Becca’s full-time caregiver was so obviously the next phase of my life that it didn’t feel like a choice at all. Her quality of life was unacceptable and she needed me. That was it.
It was a logical conclusion, not an agonizing decision. A simple equation, not an ethical dilemma. Unavoidable, really. An inevitability.
Inescapable.
As a boy, I heard stories from the New Testament that frustrated me.
For most of the gospel story, Jesus escapes danger in miraculous ways.
When Herod sent soldiers to kill him as a baby, his parents were warned in a dream to flee. When an enraged crowd pushed him to the edge of a cliff, he slipped away. On multiple occasions, Jesus disappeared right at the moment his listeners bent to pick up rocks.
So on a solemn Passover night when Judas kissed Jesus’s cheek, signaling to soldiers whom they should arrest, I didn’t understand why he let himself be bound. Then in trial before the Sanhedrin he stayed silent, and he held his peace before Pilate too. Jesus’s final days lacked not only a miraculous escape but also even a half-hearted self-defense. Surely the Son of God could win them over as he had other multitudes in his ministry.
The apostle Peter was likewise bewildered. When Jesus began to speak plainly to his followers of his impending death Peter couldn’t believe it: “Be it far from thee, Lord: this shall not be unto thee.”
“Get thee behind me, Satan.” Jesus rebuked. The startling chastisement is followed by one of the gospel’s gems: “Whosoever will save his life shall lose it: and whosoever will lose his life for my sake shall find it.”
Later in agony, Jesus secretly hoped that Peter might be right. In the Garden of Gethsemane he prayed that God would “take away this cup from me” but bemoaned his fate only in passing. “Nevertheless not what I will” the prayer continued, “but what thou wilt.”
My boyhood understanding of the crucifixion turned out to be wrong. Christ’s death wasn’t the result of incompetence, conspirators, or bad luck. It was never something to run from and he didn’t need defending.
“No man taketh it from me, but I lay it down of myself.” Jesus explained of his life, “I have power to lay it down, and I have power to take it again. This commandment have I received of my Father.”
An all-powerful being who’d prefer a different path, and yet… when commanded, submits to the will of another. There’s a lot to be said about the death of Jesus Christ but at least one lesson sticks with me:
If God orders your execution, embrace it.
You can’t outrun an unstoppable force, or become an immovable object in its path. I’ve learned there’s wisdom in submission, and, in circumstances like these, a deliberate surrender is perhaps the highest expression of free will.
I spent the weeks following my resignation like a doomsday prepper.
It was an alien invasion of one. Becca’s nervous system rebelled in increasingly bizarre ways, as if she were slowly being transformed into a creature evolved to handle the environment of a different planet.
“Write this down, everything I say.” She told me ahead of a virtual doctor appointment she was too sick to attend, “Flares with extreme headache and rash. Ice hot flushing in limbs, and tingling burning all over. Buzzing, zappy nerve pain in hand and knees. Extreme sensitivity to touch, light, and sound. Muscle vacillations and body vibrating, with loud static in ears. Constant sore throat. Shaking uncontrollably when nervous. Sudden jerking in limbs from unexpected sounds. Pain, at worst, 8 or 9 out of 10.”
Becca relayed it all in a shakey whisper over several minutes, pausing often to catch her breath. She lay flat on her back in bed now, always — pillow-less. Her body refused to regulate heart rate or blood pressure correctly at any incline.
Ironically the weightless, dark, quiet of outer space would be a perfect environment for Becca. In the absence of a space station, we sheltered in place. Her parents and I turned the bedroom into a bunker, fortifying it to withstand the relentless, omnidirectional assault of two forces: light and sound.
Light retreated first, pushed back by an improvised mesh of blankets, cardboard, and pillows stuck with thumbtacks around the edges of the room’s five windows. Then, just as we hit a comfortable dimness, the goalposts moved. Becca’s sensitivity increased and so did the thoroughness of our methods.
As the Earth turned on its tilted axis the seasons changed and the Sun found new angles in. One late Summer morning I spent an hour and a half holding an umbrella over Becca’s head while a rogue ray passed. When we finally assembled the right materials for the job, we didn’t take any chances. Black-out curtains guarded the inside of each window, and black, weather-proof plastic kept watch from the outside.
Sound was a more capable enemy. Becca’s parents and our two kids, refugees of the conflict, started new lives in the basement where the noises of living could be contained. I buried my face in a pillow when I needed to cough or sneeze, as if jumping on a grenade and became aware of the sound each surface would make on contact, traversing the room like a scout through a minefield. For several days Becca woke me each time I drifted off to sleep because my breathing was louder than usual.
Lawnmowers and leaf blowers took up positions in neighbors’ backyards to the south, west, and east. Planes provided cover from above. Their low rumbles were a terror that always elicited new gasps of pain.
The Fourth of July arrived suddenly, and with it a fresh offensive. We spent the night rotating through our armory of half a dozen earplugs and headphones — the pressure, fit, or noise-canceling frequency of each disturbing her as much as the loud booms. On and off I tried cupping my hands near her ears, as if it could do anything to stop the onslaught of a hundred fireworks.
During a lull in the battle, Becca and I had a conversation.
Just two sentences. Her ability to speak and tolerate the sound of words was rapidly declining. In this case it didn’t matter. After hearing about the high divorce rates among couples in our situation, there wasn’t much to say.
“I can’t imagine someone leaving.” She said.
“Yeah, I would kill myself before leaving you.” I replied.
And I found it to be totally and absolutely correct. Not that I was capable of suicide, but that whatever version of Stephen abandoned or deprioritized Becca was no Stephen at all. The real me would die on that day and be replaced by a soulless husk of a person.
He was right. I thought to myself, Whosoever will save his life shall lose it.
Laying in bed one night I listened to the soft chirp of crickets just beyond our boarded-up windows and stared up at the final light in our twilight world. The fire alarm on the ceiling emitted a faint green glow from its indicator, just enough to catch the edge of a couple of landmarks in the room I used to navigate from one place to another. My eyes were always drawn to it. I hoped in vain that Becca wouldn’t notice.
At her request that night I climbed a stepladder with a piece of duct tape and sealed off the sky’s last star. The room’s transformation was complete. We now lived in the depths of a cave.
The moment hit me hard. My days consisted of toileting, syringe feeding, eye wiping, nose cleaning, itch scratching, and every other thing Becca couldn’t do for herself. The next day I would repeat all of the things I always did, but with a burlap sack thrown over my head. I would develop bruises on my shins from unexpected collisions, and get familiar with phosphene, the tiny, random, light-colored shapes your brain invents in the absence of visual stimuli.
My eyes often lingered on the dark patch of ceiling that once was green. No man taketh it from me. I decided one day. With those words, I took my first steps out of depression. Yes, she had asked for it. But I was the one who gave it. I gave it freely. Is there any gift more romantic than a star? I wondered, satisfied.
Without visual reference points, the ceiling might be as high as the night’s sky and the distance between your head and your feet feels undefined. You can stand as tall as you imagine.
“Shoot me. Shoot me.”
Becca said on her free fall to rock bottom. She was sick of our syringe blends and becoming emaciated. Her back ached and protested with bedsores. Only once every day or two did she risk removing her earplugs to drain wax. The impossibility of showering meant that everywhere I touched was dead skin, oil, and matted hair.
“If you leave me like this, you don’t love me.”
One day after rolling her off the bedpan, Becca couldn’t handle the pressure of putting her pants back on. Later the friction of sleeves bothered her so much that we cut her shirt off. Gradually we reduced her pile of blankets to a single draping, a thin cloth made to swaddle newborns. The room’s temperature regularly increased to the low 80s to compensate.
In those cold Winter months, she often asked for death. Euthanasia. An act of God. Knives. She asked me to find out from our cardiologist if her mild aortic stenosis might kill her suddenly, and was disappointed to learn it would not. But when I suggested that her life was her own and that if she needed to leave it I ultimately would respect her decision, she replied:
“No choice.”
Becca was suffocating on her own inevitability. Her fate was, apparently, to live in pain. The cruelty of ME/CFS and POTS begins with the fact that they have no known cures, and continuously torments with the realization that neither is shown to meaningfully decrease lifespan. In the darkness each day she had nothing to do but stare down an “endless Silent Night” — a tragic line she shared at Christmastime.
“I believe in God. God lets people suffer. I’m dreading it.”
Despite the hours I spent each day inches from her face, I never knew the smallest part of her suffering. At times I tried to “go there,” to step into my best approximation of her shoes. I lasted less than a few minutes in the worst nightmares I conjured, and even they, I knew, were nothing compared to Becca’s never-ending limbo between life and death.
To be able to continue caring for her, I had to shut everything out at times. I hung a blackout curtain to cut the room in half and let myself disappear into books, muted video games, and text conversations with friends — falling into dazed, half-hour hypnoses until Becca’s “clicks” for help snapped me out of them.
The important thing was to bring new light to Becca every time I crossed back into the dark. But I struggled to insulate her from my emotions. Long sighs. Irregular breathing. Belabored movements. I emanated internal conflict.
“What thinking?” She asked as I sat level with her head on a children’s stool next to her bed.
“Can’t let you…” I paused on the third word, debating whether she needed the pain of a fourth to understand. Finally, “Give…”
“Up?”
“Mmm.”
“Can’t. I’m stuck.”
Among the dormant gardens of her mind, Becca found Gethsemane.
“Want give up.” She said as Spring approached. But she bemoaned her fate only in passing. “Don’t let me.”
I wrote the words on my mirror and thought about them often. They were as close to an advanced directive as she had ever given. There was no question left in my mind that we would do whatever we could to continue.
Becca’s hope waxed and waned from that point on, but a deeper resolve solidified underneath. Her desire for death only came out in the most painful moments, like the swear that follows a stubbed toe. She thought about the future more and dared to imagine that good things were coming.
“Wanna help people.” She said, “Want us mission.”
You never really know someone until you see them under crushing pressure. I wasn’t surprised to find that the woman I married was solid gold. Becca had always wanted a life of service and not even a coma-like state could change that.
She daydreamed through nights of insomnia about our “mission” — both the abstract concept meaning the purpose of an individual’s life and something more concrete, the multi-year trip that some retired couples in our Church go on to provide spiritual and physical relief to communities around the world.
“Us book.” She added later, trying to express the good we could do.
“Movie.” I replied, half joking.
A few days later she revisited the topic.
“Movie.” She said, apparently deciding it was a good idea after all. It took me a moment to pick up the thread of our previous conversation before giving my response.
“Comedy.”
I think I heard her smile, although when I added “Jack Black” — suggesting the actor who would play me — I got a long “Uuuuhhh…”
Another day passed.
“M n c, romance.” Movie not comedy, romance. Becca wanted to make sure we got the genre right.
“Uh-huh.”
“Uh-huh.”
In the dead of a pain-filled night, Becca and I were up like usual, this time trying to get her left arm in a comfortable position. After a few adjustments, including rolling from side to side, she gave up. We had reached the threshold of her tolerance for touch. All that was left to do was eat the pain.
“M horror.” I said.
“Uh-huh.”
Our conversations stayed short and became even more infrequent. We settled into a routine that required nothing more from Becca than a few clicks, a handful of sounds, and three rolls, one at each mealtime.
“You’ve changed.” Becca said out of the blue.
“Better?”
“Sweeter.”
“Sorry.”
In that one word, I tried to say everything. To express my heartache for not confronting her illness head-on many years ago. My shame at the times I was impatient. My yearning for her forgiveness and my willingness to do whatever it took to bring her back.
Also, my agreement. It was true. Somehow giving had put something new in me. He was right, I thought to myself. Whosoever will lose his life for my sake shall find it.
In the Spring, I traded my timer for a stopwatch.
On the day of my greatest professional achievement, I had a 20-minute timer running on repeat. I needed an alarm to remind me to be an attentive husband.
That was 381 days ago. Now, each time I cross the blackout curtain to be with Becca I tap a stopwatch. It counts up every second I spend with her and I start each new day by looking at the sum and recording it.
Time used to disappear. Now it accumulates. I average 15 hours.
When I’m not next to Becca I sit within earshot in a blue saucer chair at a plastic Costco table and run up two other counts. One for reading, and one for writing. I’ve tried taking on other projects but stepped away from each when they pulled me too far from Becca. “Literacy,” however, has stuck around — the only skill I need to share her story.
Work used to separate. Now it brings us closer. I average 3 hours.
Time has made me comfortable in my role. I’m not a hospice worker. I’m also not a healer. I don’t have the power to lead her gently to the next world or take her hand and say “arise” in this one. In the case of Becca’s illness, I’ve had to accept that forces outside my control overwhelm what little power I have.
My responsibility is simple. I must bring a sober presence to each day. It’s my greatest victory. In the struggle for free will, we often forget the first great miracle: Consciousness. What can’t be turned away from, you can at least experience. It might not be pleasant, but awareness is the essential first ingredient to agency. God introduced choice to the world with the forbidden fruit, but only after he gave the breath of life.
While I still let my mind wander to other places, I recognize the idle time for what it is: Brief distractions that allow me to be a more present and protective force in Becca’s nightmares later.
I finally know the answers to Becca’s two most pressing questions.
“Stephen.”
I was surprised. Becca didn’t ever say my name. Addressing each other didn’t communicate much, so it was never worth the effort. I wondered how long it had been since she had heard hers.
“Hmm?”
“Get better?”
“Yeah.”
“Yeah?”
“No choice.”
For the first time in months, we shared a subdued laugh. If we lacked control, why not believe fate bent towards a positive outcome? But she was understandably skeptical.
“If stuck, when caretaker?”
What if I don’t? Becca was preparing herself for the worst and wondering when I would take a step back. Maybe the road was too narrow for two after all.
Usually, I pause for several minutes after Becca speaks. I crack the spine of a mental dictionary and rifle its pages until I find the perfect word. This time I had it on the tip of my tongue.
“Never.”
I wiped tears from her eyes and then grabbed a tissue for my own. A year ago I would’ve thought longer. Maybe I’d have answered more conservatively. I can’t tell you when it happened exactly, but all the barriers between us were broken. Becca could drink from my life freely.
Will Becca get better? We’ll do whatever we can to take the illness from her. Will we turn away if she doesn’t? Never. Not our will, but His, be done.
We choose to walk the only path forward, a path nightmared up and redprinted out by uncivil engineers working at Hell’s in-house construction firm. The road ahead is rocky and unpaved. It meanders well out of sight and there are high walls on either side penning us in. But the footsteps are our own.
He was right, I think to myself. Nothing can take our lives from us.