Marie Lawson Fiala had a good life: a happy marriage with three lovely children, a rewarding career as a high-stakes litigation lawyer, and a beautiful home in Berkeley, California. But her family also had a secret, one buried so deeply it was unknown even to them. In the center of his brain, Fiala’s oldest son, Jeremy, had a rare congenital defect known as an arteriovenous malformation (AVM). Composed of a tangle of blood vessels, half vein, half artery, these thin-walled malformations are almost guaranteed to rupture, causing cerebral hemorrhage. Jeremy’s ruptured on Labor Day weekend of 1998, when he was 13 years old.
“Nothing marks the last normal hours of your life as special,” Fiala writes in her memoir, Letters from a Distant Shore, “nothing that you look back on and say, ‘There, that was the turning point. If only I had paid attention, I would have known, I would have treasured those hours.'”
Normalcy as Fiala and her family knew it disappeared that Labor Day weekend, with all the speed of blood rushing through a ruptured artery. The “normal” of family life and work — swimming pools, birthday parties, weekend brunches served on blue-and-white dishes — vanished into a new reality of round-the-clock shifts in intensive care, eyes glued to monitors, shunts, and drains, wondering if Jeremy would pull through and, if he did, how his life would be forever changed.
Letters from a Distant Shore chronicles a family’s journey through tragedy, and a mother’s unwavering faith, hope, and love. Raised Catholic with a strong belief system she carried into adulthood, Fiala’s writing about faith is refreshing. Neither embarrassed nor apologetic, she writes about her belief as something fully integrated into her life, as innate as breathing — a faith so tangibly present that the first words Fiala remembers speaking when Jeremy collapsed were the opening lines of the Lord’s Prayer. Yet even this life-breath of belief becomes tainted with doubt as Fiala watches her son struggle to survive in the intensive care unit, and she contemplates turning her personal, intensely private prayer into something public:
I was deeply reluctant… to ask friends and strangers to pray for Jeremy. Although I had a lifelong practice of private prayer, there was something…unseemly…about making it a public, participatory event. It felt like a revival show. What would people think, especially our irreligious Berkeley neighbors and the super-rational lawyers with whom I worked? [And] if nothing resulted, as was likely, what would I say to all those people? I would be seen as naive at best, a gullible fool at worst.
Hope for her son’s recovery trumps Fiala’s fears, however, and she agrees to let her father-in-law, an Episcopal priest, organize a worldwide prayer vigil. Aware of the body of scientific research supporting the positive effects of prayer — research that, Fiala notes, often carries a tone of surprise in its reporting — she prepares to unite family, friends and friends-of-friends in prayer for Jeremy. Candles are lit, prayers are said, supplications are made, and…nothing happens.
Later that night, as Fiala’s husband sits by Jeremy’s bedside, one of the doctors on his usual rounds sticks a pin into the nearly-vegetative boy’s foot, looking for a reaction. This procedure had been de rigueur since Jeremy’s collapse, with no indication that Jeremy was aware of the sensation in any way. But the night of the prayer vigil, “Jeremy suddenly said loudly and clearly, ‘Ow — that — hurts!'”
“I will carry those words with me always,” Fiala writes. “Ow, that hurts.”
Fiala’s love for her son is so strong it seems palpable but it isn’t always pretty. The fierce heart of a “tiger mother,” as Fiala says, admits nothing else into the space reserved for constant love of her critically ill child. Even other sick children are not admitted, and Fiala’s reflections on the other patients in the intensive care ward are both honest and painful. She writes of Jamal, barely older than a newborn, who cries constantly in the crib adjacent to Jeremy’s bed and whose cries consistently go unanswered:
I wish it were true that I thought of Jamal only with love and charity during his last weeks, but I was not that good; I was sleep-deprived, unravelling, fighting to hold onto myself and avoid an emotional meltdown. Jamal’s constant crying was a nearly unbearable irritant…I played out mental scenarios in which I marched over and snatched him out of his crib, held him close, rocked my body back and forth cooing, “There, there, baby; there, there,” until he quieted. But I never did.
Unlike Jeremy, with a parent by his side twenty-four hours a day, Jamal has no one; the only time Fiala briefly sees the baby’s mother is following Jamal’s death. She later writes of Imari, Jeremy’s 15-month-old roommate in the rehab unit, who cried for her and called her “Mamma” and whom Fiala also ignored. “Living in extreme circumstances teaches you many things about yourself,” Fiala writes. “Some of those things I would rather not have known.”
At points I wanted to argue with Fiala. Perhaps Jamal’s mother wasn’t “sullen” or uncaring; perhaps she lacked the resources (extended family, understanding employers, a financial safety net) that would have allowed her to be by her baby’s side. I also questioned her interpretation of some medical details. I know from personal experience, for example, that a pulmonary embolism does not always mean “the victim slowly suffocates until his or her heart gives out,” although I can understand Fiala’s fear of this very real possibility.
These quibbles aside, Fiala’s book is captivating and her writing honest to the point of pain. Her story of faith and a mother’s love will likely resonate with all parents, whether they profess a faith or not. Fiala’s true gift is that in her writing — as in her life — there is no separation between what is real and what is believed. They are seamless, one and the same.
Jeremy is ultimately victorious. Eleven years after his AVM ruptured, Fiala writes that her son is a college graduate with a job as a research analyst. He will always bear the marks of the tragedy he endured, but he is a fighter, Fiala says, a survivor. So, too, is she. That is the legacy she leaves to readers in Letters from a Distant Shore: although most readers will not have experienced Fiala’s pain, through her clear and candid writing, they can share in her triumph and joy.