Caregiving vs. capitalism

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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.

Help prevent suicide by checking in

Trigger warning: this post discusses suicide. If you are feeling suicidal, please contact a suicide hotline: http://www.suicidepreventionlifeline.org/ It really can help!

When I was in college, an acquaintance of mine shot himself. No one saw it coming. His family was floored. I didn’t know him all that well, but from what I did know of him, I never would have expected him to commit suicide. Before he went, he withdrew socially for months and made various plans and arrangements for after his death. He mailed notes to his relatives. Having been borderline suicidal myself as a teenager and sought help, I wondered how and why he had kept it so well hidden.

I’m not suicidal right now or anywhere close, so please don’t worry about me. But I finally understand how it happens that people get to that point without others knowing. Depression and social isolation tend to be a cycle – the more depressed you are, the harder it is to reach out to other people, and the more isolated you are, the more you get stuck in your depression. The single most helpful thing for breaking this cycle is for a non-depressed (or at least less-depressed) person to reach out by asking “How are you doing?” and then actually listen to the answer.

The problem is, almost nobody does that.

There are different ways to ask “How are you?” People who struggle with depression become sensitized to the difference. We can tell when someone’s “How are you?” really just means, “Hi” or “I’m being polite right now”. (Or my favorite, “Is everything OK?” Since it pretty much never happens that everything is OK, what this usually means is “If I don’t talk to you right now, will you immediately go and kill yourself, or can I go back to what I was doing?”) A person who’s feeling vulnerable isn’t going to spill their vulnerability all over the place where it’s not welcome. On the other hand, when someone asks “How are you?” and actually wants to hear the answer, that’s a gift.

When someone blames themselves for not knowing that a relative or friend was suicidal, the socially acceptable answer is to say, “Oh, don’t blame yourself, you couldn’t have known, there’s nothing you could have done.” I’m sure there are cases where that’s absolutely true; I’m just as sure that there are cases where it’s absolutely not. I am sure of this, because there have been times when I was severely depressed and thinking about death for a fairly extended period of time and no one checked in on me. No one asked how I was doing. No one called just because. And they could have! I’m talking about people who knew that I was socially isolated and that I had a history of severe depression with self-harm.

I try to periodically check in on friends and family who I know are going through a tough time or have a psychiatric history. Unfortunately – and I don’t say this to be snotty or make myself look good, it’s just the truth – people don’t reciprocate. I’m always the one reaching out, and when I can’t, when I need someone else to take the initiative and reach out to me, usually no one does. The main reason I still go to therapy twice a month is so that someone will be monitoring my mental state. I have to pay someone to check in on me.

Right now a new medication is keeping my mood fairly stable, but I’ve still been struggling with stress and grief related to Monkey’s ongoing medical issues, to a recent death of someone I knew, and to simple loneliness. And, except for my therapist and my psychiatrist, and my husband because he lives with me, nobody knows that I’m struggling right now. Because no one else has asked, or made it easy for me to talk about it, or even called or even texted to say “How are you? What’s going on in your life?” And when I tried to say something anyway, I was shut down.

“But that’s because you’re married,” you say. Nope. It was the same when I was single and lived alone.

This is going to sound harsh, but I’ll say it anyway. If a person commits suicide, and if relatives and close friends knew that person had a psychiatric history, all of those people who never called to ask how that person was doing are a little bit responsible for their death. Not wholly responsible, but a little bit.

Now, there’s no point in blaming yourself for something that’s over and done, but there’s something to be said for a kind of proactive blame: that is, taking responsibility for preventing something that hasn’t happened yet.

Is there someone in your life you know is at risk for suicide? Take responsibility now. Make it a habit to check in on that person, monthly or weekly depending on how close you are to them. Again, I’m talking about a good friend, a close relative. Don’t make it intrusive or weird; you’re not a doctor keeping tabs on them, you’re just calling because you care and you genuinely want to know how they’re doing, good or bad. Chances are you’ll find them in a good mood much of the time, but if you catch them when they’re struggling, they will appreciate that you thought of them, that you gave them the opportunity to talk, and that you listened. Just sending a text message (if they text) asking how they are can mean a lot.

I think often people are afraid to have conversations with people who are suffering – whether it’s from a mental illness or difficult life events or both – because they think that if they ask, then they need to solve the problem and they don’t know how to solve it. Good news: you are not supposed to solve it. The most helpful thing you can do is be there and listen. Just ask, and then just listen.

Yeah, the person might eventually commit suicide anyway. But at least when someone says to you “Don’t blame yourself, you did what you could,” it will be true.

To everyone out there who is depressed or grieving and who feels alone with their struggle, I want to say I’m sorry. I’m sorry that no one has called you. I’m sorry that no one is listening. You are not alone. There are lots of us right this minute who are struggling, too. There are lots of us who wish that someone would listen.

Let’s all try to be the person we wish others would be for us.

NOTE: If you are currently feeling suicidal or thinking about suicide, please contact a suicide hotline! I have used a hotline and it helped. If you’re phone phobic like me, you can use an online chat hotline. Go here: http://www.suicidepreventionlifeline.org/

How (not) to train your dragon, I mean toddler

I had a parenting realization the other day: Monkey is the perfect child for an anarchist. I say this because I am finding, again and again, that all of my authoritarian impulses completely – completely – backfire with him. Which is just as well, because I don’t want to be an authoritarian parent or person. I’m more than happy for those impulses to fail and die.

Monkey is what I would call “a strong-willed child.” (I use the term “strong-willed” rather than the supposedly more positive term “spirited” because it gives a sense of his solidity. He’s less like a cheerleader and more like a goalie, standing in one place, defending his autonomy from all directions.) Everything must be on his terms. He hates any sense that he is being coerced or asked to perform. The more he senses you want him to do something, the more determined he is not to do it – and if you get into a power struggle with him, you will lose.

This can be quite amusing at times. For instance, he has one therapist through early intervention who likes to tell him to do things. (His other therapists have figured out that this backfires.) “Draw a line. Stomp with your foot like this. Bring me the octopus.” Monkey’s response to such commands is to give the therapist a blank look that says, “I’m soooo developmentally delayed that I have no idea what you’re asking me to do.”*** Yesterday the therapist looked at me and said, “I can’t tell if he understands what I’m asking,” and I burst out laughing. He totally understands, and he can do it, he just won’t do it if you tell him to.

Of course, it’s less funny when he breaks away from my hand and runs giggling into the parking lot, giddy with freedom. Or when he won’t eat or take a nap. Or when he runs away every single time (Every. Single. Time.) that I tell him we need to change his diaper or go somewhere. Or when he insists on getting up at 4:30 AM every morning.

I first discovered the strength of his persistence when I tried “crying it out” as a method of sleep training. Doctors assured me it would work. It didn’t. He had an amazing ability to get increasingly hysterical over the course of hours. I gave up, tried a much gentler form of sleep training, and had better success. My attempt to coerce him into sleeping just made him determined not to sleep at any cost.

Because of his feeding delays, he still drinks from baby bottles. I’ve lost count of the number of doctors and nutritionists and others who have told me in the past year to “just take away the bottles.” Now, I understand that this does work with many children, and that’s cool. But for Monkey, I have always instinctively known that it’s a really bad idea, for three reasons:

1) He has a history of breathing and swallowing problems. There are real medical concerns about his ability to drink from certain types of cups, including most sippy cups.

2) He has repeatedly demonstrated that he does not do well with big changes. Incremental change works better.

3) He is strong-willed.

The combination of these three factors led me to believe that if I simply “took away the bottles,” I would find myself in a power struggle which I would inevitably lose as my two-year-old decided to starve/dehydrate himself rather than be coerced into uncomfortable drinking methods. Last week, though, the professional pressure finally got to me, and I tried taking away the bottles for a day.

Guess what happened?

Yep. Cranky, dehydrated toddler. Shamefaced mother trying to figure out a way to get out of what I started without losing all semblance of authority. I finally made the giant mistake of telling him he could watch Daniel Tiger only if he took one sip – just one freaking sip! – of milk through a straw. (Which is, of course, a completely arbitrary setup.) He didn’t even throw a tantrum; he just set his jaw and sat there determinedly staring at the frozen screen. At that point I really really wanted to get out of the stupid power struggle I’d started and just let him have a bottle. I also wanted just a little bit to smack him. Instead, I took him to the library to play. He drank his milk through a straw in the car on the way there. All it took was a change of scene and me not pressuring him.

We are now trying a different method, which is working much better. The method goes like this: Monkey gets one bottle of milk when he wakes up and one bottle of milk before he goes to bed. In between that, he gets a choice between milk in his special straw cup (made by Ark Therapeutics, who are awesome) or water in a transitional soft-spout sippy cup which is very similar to a bottle. Why is this working? It’s an incremental change – he still gets the comfort of his bottles twice a day – and he is empowered with choices. He can choose between his favorite drink (milk) in his less-favorite cup (straw) or his less-favorite drink (water) in his favorite cup (similar to a bottle). From his point of view it’s a somewhat frustrating choice, but it’s still way better than choosing between Hillary and Trump and his resistance is minimal. When that resistance is gone and he’s used to the new routine, I will switch out the morning bottle, and finally the bedtime bottle.

Some people will think this is permissive parenting. But it’s not permissive, because there is structure and consistency.

But I get it. I grew up with a permissive mother and a father whose methods tended to be authoritarian. He’s also a highly conscientious person, and I drew a sense of security from the boundaries he set even as I fought them, so there’s a part of me that says, “My dad held my head under running water for disobedience, so that must be good parenting!” But the other part of me – the part of me that remembers being a four year old sobbing with rage and hatred and humiliation after a spanking, the part that remembers being a teenager refusing to get in the car with my dad after a public fight, trying instead to walk home (it was miles) and watching him drive away just so he could win the power struggle – that part knows that it’s not how I want to parent my child. Because it doesn’t work.

See, I was a strong-willed child, too. I was never able to submit to authority. I challenged my parents. I embarrassed my teachers by pointing out their mistakes. I picked essay theses that I knew would upset the person grading them. Sometimes I’d argue the opposite of what I believed, just to make it more interesting. I thrived on contradiction and debate. I still do. Ultimately, despite some authoritarian tactics, my parents always encouraged me to think for myself and to take responsibility for my choices. I still have a relationship with them because those attempts from my dad to “win,” to make me obedient, were the smallest part of how I was parented and were ultimately unsuccessful.

The last thing I want to do is to make parenting about me and some need I have to appear dominant. What I do want is to give Monkey structure and predictability. He needs to know that if I say I will do something, he can depend on me to do it – whether that’s putting him in time-out or picking him up from the church nursery. He needs to know that bedtime happens at the same time every day. He needs to know that if I tell him not to do something, it’s because it’s dangerous or harmful, not because I’m trying to prove something about myself. And he needs to know that I’m on his side, always, not on the other side of a power struggle in which we are competing for authority.

I love that Monkey is strong-willed. My goal as a parent is not to break his will but to guide it and give it healthy boundaries. I expect him to test those boundaries, and indeed he should, because some of the boundaries I set are probably arbitrary and misguided. Hopefully, if I do things mostly right, he’ll grow up to be a person of integrity and free thinking, challenging the boundaries of unjust authority in the grownup world.

 

 

***For those who haven’t read earlier posts, Monkey has motor delays, sensory issues, a feeding disorder and a speech disorder requiring therapy, and possibly does have some problems with inconsistent comprehension. He’s also very bright.