What I’m Learning, Part Six


Someone asked on Twitter last week for their followers to share something good. It was as open and unspecific as that, and the first thing that came to mind for me was libraries.

I’ve always loved libraries, ever since I was old enough to bike the three-and-a-half miles to my public library in Mequon, Wisconsin. Situated next to the municipal swimming pool, it was a beautiful two story, circular room, with children’s books below and adults’ above. It made me feel calm and hopeful, as does my beloved main branch library here in Evanston, Illinois today. The thought that passes through my head as I step inside is always thank goodness. There are so many stories here.

In the end, the happiest I ever feel is when I am sucked deep into a book, fascinated and immersed. All avid readers feel this way, I think – we all talk about it with the same vocabulary of being surrounded, transported, brought inside. It’s such a gift to have both the reading aptitude and interest in books. I’m grateful for it in every season and in every environment.

This year, I spent a lot of time reading books about health and medicine as part of research for my book. You can read the previous posts: about Gavin Francis and Jill Bolte Taylor, Seth Mnookin and Henry Jay Przybylo, Susannah CahalanAtul Gawande and Heather Armstrong, and finally, most usefully, Heather Harpham. As I finished my book proposal, I had to find a few more that closely mirrored the structure or voice or topics of my memoir, and I’ll share some of the ones I liked best below.

image courtesy of GoodReads


These seventeen essays, each describing one of the author’s brushes with death, were beautifully written as only a novelist can. She builds a small universe in each essay, the world of each near-death as tangible as the one where I sat in bed each night, spellbound. Of course, the most potent essays for me were the ones about her daughter, born with a terrifying and extensive set of allergies that set her on fire with unimaginable eczema and threatened to kill her with anaphylaxis.

O’Farrell writes:

“What, I wanted to howl to the walls, to the carpets, to the chairs, the hell do I do? I wanted to lodge a complaint, raise an objection, with somebody somewhere. I was frequently seized with an urge to run with her into the streets, to stop passersby, to offer up my daughter to their gaze and say, look, do you see that? Have you ever known anything like it? Do you know what to do? Can you help her? Can you help me?” (p 273)

I so identified with that impulse to raise an objection with someone about the hand my child had been dealt. How could this be ok? How could this be acceptable?

Too, O’Farrell writes about the unending task of keeping track of the needs of a child with this level of health risk.

“You become ferociously, uncharacteristically organized: there are prescription lists to update, expiry dates to note down, letters to write, governmental departments to phone, internet searches to conduct, medication to be filed and bagged, symptoms and triggers to be recorded, forms to fill, receptionists to call, medical papers, reports and trials to keep abreast with, appointments to make…” (p 277)

And, in a paragraph that made me want to reach back and re-hug my dear friends for all the times they helped me and my daughter:

“You will become so grateful towards people who show kindness and compassion to her that it will be hard for you to hold yourself in check. You have to tell yourself to be sensible, unemotional, when you encounter these terrestrial angels, not to embrace them with alarming intensity, not to thank them repeatedly.” (p283)

It’s a gorgeous book, painful and visceral. I recommend it for anyone, not just parents caring for children with complex medical issues. The other essays touch on life in a human body like few things I’ve ever read.

image courtesy of GoodReads


I was initially prepared to write this book off as caricature. It seems such a mundane story: a woman has a child and is overwhelmed. There is no great drama here: she has mild baby-blues, she is unsure about many things, she struggles to leave and to come back from her time away from her son. I wasn’t certain I’d find enough to hold on until the end, but then I was very pleasantly surprised.

The chapter she writes about the birth itself (an unplanned c-section) takes a common experience and wrings out some truths that few women can express:

“The task was to endure the most bizarre experience of my life, the feeling, painless, of someone yanking all of your organs out. I am a vessel only. I am something to be pillaged. A cabinet, a pantry door. I am lying naked on a table in a cold room under bright lights, my arms splayed out to form a T, and a team of people are gathered around my body, peering into it, excavating it.” (p 110)

This feeling of becoming a thing in labor is one I also experienced, and one which continued for years as, in my case, my child needed continued medical attention and I had no visible place in the room, a coat rack and holder-of-dolls, a cook and launderer and driver-to-doctor-appointments. “I am something to be pillaged” was a feeling I’d not been able to describe until I read it in O’Connell’s book.

In addition, the feeling of responsibility for a baby’s life is intense in a way that I hadn’t seen represented in a general way in all of my reading on parenting children with health issues. Though I’d seen it in specifics — the carrying of epipens, the dosing of medicines — I had not seen it explained by the parent of a healthy child in a  way that resonated with me, too.

“If the baby died, I’d have to answer to everyone, answer to myself as a mother. It was knowing that I would feel culpable forever, no matter what, that took my breath away.” (p 170)


What if my gut feelings – Something bad has happened! – were simply anxiety, simply hormones, simply the result of too many tragic stories I had tried to hold in my brain and live through, as if an act of radical empathy could spare me, render me immortal? What if I couldn’t be trusted? What’s neurosis and what’s maternal instinct?” (p 172)

The question of “What’s neurosis and what’s maternal instinct?” is one I have had to ask myself over and over and over for the last 17 plus years as a parent. We are all asking it. We are all looking everywhere for that answer. I’ve spent the better part of the last few years looking for it in my own story and in books like these two, books that excavate the minds of two mothers desperate to keep their children alive, just like me.

Thank you, libraries, repositories of stories and lessons, surprising and expected.

twitterby feather
Facebooktwitterredditpinteresttumblrmailby feather

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.