There’s so much to learn, and so much to know.

As I try to grasp why my daughter was so grossly misdiagnosed by doctors and why so many of them failed to see me as a potential partner in her care, the best way I know how to access some clarity is to read and listen. Of all the things I’ve felt about our experiences, I’ve never felt alone. Whether I knew it or not, there were people all over the world joined to us energetically in our fear, our resentment, our minor and major victories. Every time I tell a story about us at a Moth story slam, I’m approached by strangers who say, “wow, you too?”

So, I keep telling, and I keep reading the tales of others. I’ve been reading and reading and reading this last few years. Here are two books I’ve read over the summer and early fall, and what they made me think.

Complications: A Surgeon’s Notes on an Imperfect Science by Atul Gawande

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Reading Atul Gawande’s Being Mortal a few years ago was an awakening; I’d found a doctor whose inner life was laid out for me, proof of humanity. I understood intellectually that all doctors have inner lives and that knowing that in detail from my own doctors or those of my children would be inappropriate, but my anger had allowed me to forget. Oh, I realized, they’re PEOPLE.

This book, Complications, was Gawande’s first. I keep a document on my computer called “OTHER BOOK QUOTES,” compiled of snippets of text from all the books I think should inform my own book or at least my own understanding of my daughter’s journey. Most of the books I’ve read merited a few lines of quotation in my document. This one claimed two pages.

For example:

“It isn’t enough to ask what a clinician could or should have done differently so that he and others may learn for next time. The doctor is often only the final actor in a chain of events that set him or her up to fail. Error experts, therefore, believe that it’s the process, not the individuals in it, that requires closer examination and correction.” (p 64)

Or:

“For many cases, the answers can be obvious. But for many others, we simply don’t know. Expert panels asked to review actual medical decisions have found that in a quarter of hysterectomy cases, a third of operations to put tubes in children’s ears, and a third of pacemaker insertions (to pick just three examples), the science did not exist to say whether the procedures would help those particular patients or not.

In the absence of algorithms and evidence about what to do, you learn in medicine to make decisions by feel. You count on experience and judgement. And it is hard not to be troubled by this.” (p 237)

In this book, I found humility, humanity, and some of the same fears and concerns for his patients that I had (and have, still) for my child. The stories in it are fascinating and well-told, suspense and conjecture both well-wrought. I’ll keep reading what Gawande writes.

The Valedictorian of Being Dead: The True Story of Dying Ten Times to Live by Heather B. Armstrong

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I’ve been reading Armstrong’s blog Dooce.com on and off for many years. She was a pioneer of the “mommy blogger” culture, one of the first women on the internet to share her children’s and her lives in a way that felt honest and real, back when very few women did that. She’s also a published author of two other memoirs, one of which covered her crippling postpartum depression. This one, though, describes her experience of the deepest level of depression yet, a crushing eighteen months of wishing she was dead so badly that she was, eventually, willing to undergo an experimental treatment with the anesthetic drug Propofol.

Her own story is interesting enough, but for my own purposes, I was most curious about her mother’s take on the experiences. I couldn’t help imagine myself in her place, desperate to help my daughter (and granddaughters!) and having to be clear-headed and present for something that might, in actuality, kill her. Armstrong describes her mother’s worry in passing:

“ ‘I don’t think you know this but I don’t sit down or stop feeling anxious or stop holding my own breath until the moment they take that tube out of your mouth and I see your chest moving up and down on its own. When I see you breathing again, it’s almost more than I can take. The relief almost knocks me down.’” (p 157-8)

And:

“ ‘I told you, we were going to get through this together…You are so brave to be doing this, and I am privileged to be in that room. I want to be there.’ Her voice was trembling. ‘I just woke up this morning and realized that watching you go through this has had such an effect on me. It’s a heavy thing; it’s a lot. But I am so happy to be in that room.’” (p 158)

It’s no coincidence that Armstrong’s mother describes her presence in the room where Armstrong is being treated as a privilege. At the end of the play (and movie) Steel Magnolias, the mother of an adult daughter who has died says, “I realize as a woman how lucky I am. I was there when that wonderful creature drifted into my life and I was there when she drifted out. It was the most precious moment of my life.” Without question, I understand that sentiment. Every time my daughter has gone to sleep under general anesthesia, I’ve been there, never knowing whether it will be the last time I see her. Being in the room, even when it’s terrifying, is a privilege.

I appreciated Armstrong’s book for its honesty and its clear explanations of medically complicated issues. The humor that is endemic to her blog is held throughout this book, describing a situation that is not inherently funny at all — a typical scenario for Armstrong. I was rooting for her, of course, but also for her mother, whose quiet panic I can imagine easily.

Next week, I’ll write about a book which I literally read nonstop one night until 3:30 in the morning. Stay tuned!

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