When Silver Linings Don’t Cut It, Honesty Helps

BETWEEN TWO KINGDOMS
A Memoir of a Life Interrupted
By Suleika Jaouad

In March 2020, paper signs were taped onto cafe windows: “We are committed to flattening the curve, see you in two weeks!” Overnight, shelves emptied as humans squirreled away toilet paper rolls like nuts for a long winter. Our calendars were wiped clean, indefinitely blank.

We worried each day that death would reach down its hand and pluck up a loved one. I saw an old man with a maxi pad taped over his mouth and nose. We were confused and terrified, and did not yet understand the rules or the toll of our new world. We insisted on the language of “pause,” lives “put on hold.” In the beginning, we treated the pandemic as a suspended time between two realities, hoping we could hold our breath and wait for things to resume.

“Between Two Kingdoms,” by Suleika Jaouad, has arrived as a guide to another kind of in-between, with haunting similarities. For Jaouad, “it began with an itch.”

At 22, she graduates from college and moves to Paris, where she has a pink clamshell bathtub and a kindhearted, square-jawed boyfriend. She can play the double bass and speak French and Arabic; she is readying herself to be a foreign correspondent. Her life is a potent bud, but just as it starts to bloom she begins scratching her skin until she bleeds crimson. She is gripped by constant fatigue. As her physical symptoms worsen, she is dismissed by doctors again and again, until her eyes are “bleached blank with pain.”

Jaouad at home with her dog, Oscar Wilde.Credit…Anne Francey

[ Read an excerpt from “Between Two Kingdoms.” ]

Finally, Jaouad receives a harrowing diagnosis: acute myeloid leukemia. She sounds out her diagnosis, observing, It sounded like an exotic flower, beautiful and poisonous.” When she learns that, in addition to chemo, she’ll need a bone-marrow transplant, she writes, “Up until this point, the extent of my knowledge about bone marrow came from French cuisine — boeuf à la moelle, the fancy dish occasionally served with a side of toasted baguette.” She is hit by the cold, brutal newness of the world of illness, where handshaking is now forbidden, masks and gloves required of everyone who comes near. But she maintains that this will be temporary: “Initially, I’d clung to the hope of a short sojourn, one in which I wouldn’t have to unpack my bags.”

It is common instinct to insist that we can remain in place, intact, even as the world as we know it dissolves. It is harder to accept that we’re hurtling toward the unknown, changing in unsettling and permanent ways.

Jaouad is forced into isolation, subject to an onslaught of torturous procedures and bodily invasion. “Being poked and palpated and locked in a room for days on end without a release date was maddening,” she writes. “The windows didn’t open.”

For three and a half years, survival will remain her sole focus. She is saturated in fluorescent light, stabbed with needles, sponged, painted with bruises and scars. Death sits quietly as her roommate, as she stews hour after hour, month by month, in that maddening concoction of terror and boredom.

Jaouad in the hospital before her chemotherapy trial.Credit…Shayla Harris/The New York Times

In lockdown, we are still learning how to stay sane in isolation. We stiffen, forgetting to stretch, mentally slipping, losing sleep, our time spent growing green onions in glass jars, thumbs scrolling to numb anxiety. To cope, Jaouad does not seek an escape from her agony; she seeks conversion — to make use of it, turn it into something meaningful. In the quiet she learns to hear herself. She begins to write, and as her body is ravaged, her voice strengthens. She starts a blog, which becomes a New York Times column called “Life, Interrupted.”

Jaouad writes: “What would you write about if you knew you might die soon? Bent over my laptop in bed, I traveled to where the silence was in my life.”

Silence becomes a sought-out destination. No longer turning away from change, she becomes attentive to its every fluctuation. Letters begin to pour in from her readers — strangers who may not have the same stories, but who identify with Jaouad’s ability to pair honesty with suffering. It might be easier to succumb and let other forces take over, yet she descends into pain with her eyes wide open.

Often survivors are praised as superhuman, vessels of strength and optimism. Jaouad insists we hold our applause and bear witness to the true cost of surviving. We rarely hear how survivors are exhausted, sick of it and ready to give up. In our 20s, we are not asking to be inspirational mountaintop sages; we want the freedom to be reckless, to experience uncomplicated growth.

“Tracing my finger along the curving purple lines of interstates, blue squiggles of rivers and green swaths of national parks, my itinerary springs to life,” Jaouad writes.Credit…via Suleika Jaouad

Jaouad serves us scenes of her weary red-eyed father, fights with her partner so vicious they scare the dog, and exposes the aching silence left by those who fail to show up. She works through the shame and disorientation of sexual health; no one informed her that infertility and menopause were side effects of her treatment. As she loses one young, brilliant friend after another to cancer, others rush to cushion their deaths — but Jaouad casts away neat endings, capturing their raging will to live. Even when she is “done” with treatment, she makes it clear that her healing has barely begun.

At the tail end of trauma, most people would prefer to hand the sufferer a bucket of silver paint and a brush, and say go ahead, paint the lining. Jaouad tosses the supplies and hops into a Subaru. On the road, she opts for slowness, finding the courage to marinate in unanswered questions and be alone with her thoughts. She drives a jagged constellation, 15,000 miles across the nation, visiting strangers who wrote to her. In each interaction, we meet someone who has encountered a lightless place — losing a child to suicide, living with chronic illness, a death sentence. There is a deeply comforting element to these conversations. Grief is allowed to come out and sniff around; it’s treated like a gentle companion, never shooed away.

There are times the pacing plateaus, where length dilutes urgency, but I was immersed for the whole ride and would follow Jaouad anywhere. Her sensory snapshots remain in my mind long after reading: “caterpillar-thick lines of cocaine,” mouth sores like “milky full moons.” Losing hair is like “pulling weeds from damp soil”; illness is “some wet, starless savagery unfolding beneath my skin.” Not only can Jaouad tolerate the unbearable feelings, she can reshape them into poetry.

As re-entry to unquarantined life becomes visible on the horizon, as the vaccines are distributed into more arms, the gears of life will slowly begin churning. We may be tempted to move on quickly, to fall into old routines. I am nervous that when everything is in motion, I will not be able to keep up. It is impossible to unlearn how vulnerable we are to disruption, how swiftly and soundlessly life can deliver us into unwanted realities.

Jaouad would encourage us not to mute what we’ve been through, but to take inventory of all we’ve lost, how we’ve changed. To look at where trust has been broken, re-evaluate relationships that have frayed. She writes, “There is no atlas charting that lonely, moonless stretch of highway between where you start and who you become.”

Her writing restores the moon, lights the way as we learn to endure the unknown.

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