Why can’t electrodes be cute? Thoughts on “This Lovely Life”

I just finished reading the book This Lovely Life by Vicki Forman, subtitled “A memoir of premature motherhood.” I’ve wanted to read it for a while, but kept putting it off because, honestly, I was afraid. I decided to read it now because a friend’s new baby and some newly emerging medical problems of Monkey’s, along with a recent procedure and a bunch of repeat tests, have triggered some things for me. I wanted some company and some catharsis.

I guess it worked in that respect, because I cried on and off (mostly on) through the first 84 pages. There was a lot I could recognize from my own experience and relate to in the book. The helplessness of the NICU, where parents are given little information and have little say in their child’s care, jarringly followed by the enormous demands on parents in the PICU/GPU when the same child is re-hospitalized. The sudden parade of therapists, nurses and social workers through your home after discharge. Amazingly insensitive nurses, doctors who don’t know what’s going on, contrasted with the unbelievable wonderfulness of finding a specialist who’s both compassionate and competent. Waking up all night to false alarms from a monitor. Developing strong preferences for medical tape. The desire to thoroughly understand the details of what the doctors are discussing. The anger. The isolation.

My son was not as premature as Vicki’s, stayed in the NICU for weeks rather than months, was not a twin whose sibling died, and is not blind. He was also my first child, and I’m not sure if that makes it easier or harder or simply different. I didn’t have an older “perfect” child (Forman’s word, not mine) to compare him to. Unlike Vicki Forman, I never had the luxury of a “normal” life to lose. She was traumatized by Evan’s and Ellie’s births. I was traumatized in early childhood and retraumatized when my son was born. She lost her sense of belonging in regular social circles. I’ve never had that sense of belonging, ever.

I make these comparisons, not because I want to suggest that one of us suffered more, but because Vicki herself makes such comparisons throughout the book. She is constantly looking at other children and their parents, including children in the NICU, and saying, “That person has it so much easier than me. My son is the most disabled child here.” And I get it. I do it too. When I read about a preemie born earlier than Monkey who was only on oxygen for a few weeks, or a child with Monkey’s type of malformation who didn’t need treatments, or whose treatments were uncomplicated or made it disappear, I feel an angry twinge of “Why?” followed by a sense of pride: “We’ve been through more than you have and survived.” These reactions are human, if not admirable.

But I was struck by the juxtaposition of Vicki’s twins’ dire situation and the privilege that had characterized her life up to that point. Although she mentions that privilege early on (“Like many privileged members of the middle class, I grew up in a family where normal was nothing short of perfect”), I wonder if she truly grasps that there are other people whose lives are marked, from childhood, by the kind of trauma and grief she never experienced until her thirties. People who can’t imagine a life free from poverty, discrimination, illness, or abuse. People for whom her “imperfect abnormal” is simply life.

Throughout the book various people, mostly doctors, keep suggesting to Vicki that she seek psychological counseling, but there is never any indication that she even takes the suggestion seriously – despite stating that she experienced posttraumatic stress and took an antidepressant (a real pet peeve of mine – it’s just wrong to prescribe an antidepressant with no therapy follow-up to someone like Vicki whose depression is entirely situational; happens all the time though). As someone with a non-situational psychiatric condition who relies on drugs and therapy, I found her dismissive attitude towards mental health care troubling.

I was also troubled and surprised by how little there was of her son Evan in the book. Yes, she mentions his smile and his laugh a couple of times, and one funny moment where he stuck his finger in his ear because another baby was crying; other than that, almost every mention of him is of how sick he is, how disabled he is, all the things he isn’t and the things he can’t do. There’s never really anything that normalizes his life and her experience of parenting him. In fact, she explicitly resists this (more on that later).

Vicki Forman is able to describe a night where she left Evan to sleep in another room, aware and perhaps willing that he might die of seizures: “I left my son’s side knowing I also left him to his fate. […] Whatever might come along to relieve me of this burden I would accept.” (195) And yet, she is unable to describe a moment of peaceful normality, to give us glimpses of Evan integrated into the family’s life, of the family adjusted to Evan. I’m not at all suggesting that she shouldn’t have written about the ugly, the socially unacceptable feelings. But what’s missing is the moments that balance those feelings out. And those moments do exist.

My son’s problems are not as severe as Evan’s, but I was a caregiver for a young woman (let’s call her Maya) who was similarly disabled – in some ways more so. While of course my experience was not and could never be the same as a parent’s, I spent 12 and 14 hour days with her, often alone with her. I tried to advocate for her. I took her to the appointment that found cancer, I performed hospice care for her, and I witnessed her death. She remains a presence in my dreams and an important person in my life.

If I were writing a memoir, I would try to describe the mornings I spent with Maya, sitting at the table in the early light, me with a cup of tea, her with a straw-sippy cup of Miralax-laced juice. Maya was freshly showered and dressed in purple. I’d carefully brushed and French-braided her hair even though I knew it would be a halo of escaping wisps by noon. The mess of breakfast was cleaned up, her roommates had gone to their dayhab center, and we were alone; the house was quiet. I read her Disney sound book and she pushed one button over and over to make the noise. She banged her cup on the table. When we’d finished our drinks, I wheeled her over to the living room carpet, spread a blanket on the floor, and laid her down on it to do her leg exercises. In the background would be music or PBS or an animated film. Maya usually looked at the floor or at her hands, but sometimes she would stare at me with her huge brown eyes. Her gaze was profound. I loved those quiet mornings with her, the rainy afternoons.

With Monkey, I can’t say much positive about the early days, I was in such a haze of shock and depression. But I could write about the later days. I could write about how he chewed on his cannula when he started teething; how at his baptism, my husband held the baby and I held the oxygen tank and the priest nearly tripped over the cord when he tried to walk between us. I could write about how his hair stuck straight up for a while, or how he used to sleep with his butt in the air, or how he used to grab our feet and try to lick them. I could write about hiking with him asleep in a carrier, the oxygen tank slung over the carrier’s straps; we’d had to check the altitude with his doctors, and I’d made sure I knew where the closest ER was, but some time after his first birthday we made it to the mountains. He crawled happily around our cabin, the pulse-ox cable trailing from his sock.

I could write about the big, fluffy dog that visited him in the pediatric unit, or the man playing show tunes on the piano in the hospital cafeteria, or the Child Life specialists who brought him toys when he was quarantined. Or the time he ran around the Child Life room pulling everything out of bins and off shelves, and I was mortified because I knew they’d have to disinfect everything he touched. I could write about rain on the hospital windows, sunrises over the city seen from my cot in his sixth floor room as I lay awake worrying.

I could write about his sleep studies, how they sent him home before dawn looking like a porcupine at a punk rock club, his hair stiff with paste, stubs of wires stuck all over his face and chest. After the hour drive home, it was all I could do to wash off the leads and the paste and give him his medicines before passing out with him in bed; somewhere in there, though, I managed to get a photo of him with wires all over his face.

“I held my son’s hand and thought about how off the definition of cute had become in our world. Cute was a smile, a laugh, a funny burp. Cute was not a bandaged head with EEG probes emerging from it.” (180)

Why the hell not? Why can’t a baby with electrodes all over his head be cute? Does she think that if she accepts the “new normal,” that if she takes a picture of her baby before his EEG because she thinks he’s cute, that she will have officially departed from respectable humanity? Why does she cling with such ferocity to her old conceptions of reality?

Why can’t there be beauty – loveliness – even in the midst of trauma? I think Forman wanted to say, in her book, that there is. She tries to say it, but she doesn’t show it. In all her eight years with Evan, was there no scene of family life or mother and son interaction she could give us that would show us beauty, humor, love, acceptance? She says that she knows now that lives like Evan’s are worthwhile; she doesn’t illustrate, for the disbelieving, that they are.

This is of course a criticism of the book, not of Vicki Forman as a person or as a mother. Sometimes the things we most want to say never actually make it onto the page.

I suppose I would recommend this book to others, with a caveat. It’s beautifully written, unflinchingly honest, powerful. The depiction of hospitals, medical bureaucracies, and the limits and contradictions of modern medicine are masterful and will be recognizable to anyone who’s spent significant time in that world. Forman has impressive retrospective insights into her own fear and denial which I didn’t really relate to, but I’m sure that many other people out there would.

The caveat is that this is not a complete depiction of mothering a disabled child, and it is not in any way a depiction of a life lived with profound disabilities. It’s really a depiction of one person’s attempt to accept that she has a disabled child. There’s a difference between grieving and struggling to accept something. Everyone who sees their child suffer and is unable to fix it experiences grief, often ongoing grief. Not everyone will have the same preconceptions and difficulty accepting a disabled child into their lives that this author had.

I actually thought, before reading this book, that the title referred to the life – or lives – of the twins. Lives both brief and marked by suffering, seemingly pointless perhaps, and yet lovely. Actually, Forman and her friend, who has a disabled daughter, interpret the phrase (which is from a poem) as referring to their own lives, their own suffering as mothers. The clearest meaning Forman is able to articulate for Evan’s life is that it taught her something, that it made her a better person.

But people like Evan, or Maya, do not exist to teach other people lessons. They just exist. They live, they laugh, they suffer, they die all in their own right. And that, to me, is what the book fails to convey.

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