What I’m Learning: Part One

what-ive-learned

“To the right mind, no time exists other than the present moment, and each moment is vibrant with sensation. Life or death occurs in the present moment. The experience of joy happens in the present moment. Our perception and experience of connection with something that is greater than ourselves occurs in the present moment. To our right mind, the moment of now is timeless and abundant.”
Jill Bolte Taylor, My Stroke of Insight

How does a person write about a highly-medical experience — full of trauma and technical language and crucial background information — without overwhelming the reader or, conversely, over-simplifying? This is a question I’ve been asking myself as I write the book-length story of my daughter’s misdiagnosis and path to full health. In a story that contains a fair amount of medical terminology and more than a little of my own hand-wringing, I don’t want to lose my readers to confusion or sappiness.

To that end, I’ve been trying to read other books with similar angles. These range from the stories of doctors to the stories of patients to the all-too-few stories of other parents. Some of these books haven’t been quite right, but several have given me flashes of what I need. All have taught me things about myself or, in retrospect, things about what my daughter might have experienced. I’d like to cover some of these books in blog posts here on my site, both for my own reference and for my readers who also write about medical conditions and want to see how others do it. I’ll start with two and include others in future posts. Please feel free to comment with suggestions of your own; I’m always interested in reading more.

Image courtesy of Goodreads.com

Adventures in Human Being: A Grand Tour from the Cranium to the Calcineum by Gavin Francis

This book caught my attention in a bookstore as medical writing for non medical people. It covers major organs and parts of the body in general terms but with specific examples of the ways in which doctors interact with them. Dr. Francis has been a generalist and, as such, has had the opportunity to treat an astounding array of diseases and syndromes. In his chapter on the heart — the subject of my daughter’s challenges and frustrations — he describes the way that our souls and sense of consciousness is tightly connected to the health of our hearts.

The Latin phrase angor animi — literally, “anguish of the soul” — is, writes Francis, the feeling of panic many people have when they are experiencing a heart attack. Many say that they think they are dying. The sense they have may not be connected to pain but to a real consciousness that their own heart is failing — an inner sense, not necessarily a physical one. Similarly, patients who have been connected to the heart-lung machine — as we thought my daughter might be during her last surgery — describe a waking sensation that they are not quite themselves. They feel disconnected from their sense of self, somehow “wrong,” sometimes behaving differently from their pre-surgical personality for the first day or two after surgery. This phenomenon, which Francis tells us is called “pump head,” may very well be due to the change in rhythm from a person’s natural heartbeat to the unnatural one of the heart-lung machine. These patients have, quite literally, had their life’s rhythm altered.

Francis’ book was very easy to digest. His ability to break down complex medical issues into both the practical and the spiritual/humane was a great example for me.

Image courtesy of Goodreads.com

My Stroke of Insight by Jill Bolte Taylor

Jill Bolte Taylor was an accomplished neuroscientist in her late 30s when a brain aneurysm burst in her head. The ensuing stroke rendered mostly helpless the left side of her brain: the side responsible for language, spacial awareness, vision, and math. Because of her training and expertise in neuroanatomy, she had a unique ability to process what was happening and force herself to remember as much as possible as she recovered. Her experience of reliance on her right brain — referred to in the quote at the top of this post as her “right mind” — allowed her to feel a deep sense of tranquility, connection to humanity, and what she refers to as “fluidity,” a sense that her consciousness is liquid and can go where it wants. The knowledge that this sensation stems from the sudden dominance of her amygdala does nothing to change its inherent magic, even as a reader.

Rather than learn anything about what my child must have experienced (after all, my daughter’s medical issues had nothing to do with her brain), I learned a tremendous amount about my own ability to segment my own mind — to focus on what I want to focus on, to access the beautiful tranquility of my own amygdala, and to become aware that, as I write, I am putting myself into my timeless right mind, reliving the moments as I write them. My nervous system responses to this writing are profound — I sweat, my heart races, my eyes well up with tears — because, as she writes above, “to my right mind, the moment of now is timeless.”

It’s an unusual and fascinating book. I highly recommend it.

***

Part of the reason that I want to write a book instead of only a blog or a collection of essays online is that there is something uniquely satisfying in holding the work of a singular human experience in my hands. This is an old art, the collecting of a story or a consciousness on paper. I respect it. I want to do it, too. I’m grateful for the authors who have already paved the way.

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3 thoughts on “What I’m Learning: Part One

  1. Dear Debi, thank you for posting that. You seem to be concerned abo ut how to intervine “serious” medical language into a non-scientific book. Do it just like you have been doing in your posts: with explanations for unaware readers where necessary, and with respect to what people might have already know (general knowledge), no need to explain everything and to over-simplify, as there will be no little kids reading your book. I love the tone in which your blog goes, sometimes it just goes about emotions where you just read and relax and relate to the writer, and sometimes you write (simplified) medical passages with medical detail, and I like that you do not oversimplify that, that way I feel your respect to me as a reader… Thank you and good luck on the book. And my favourite post was on that fatfree diet after surgery where you explained why fat free, beautifully. I even commented that tme though i am a silent follower.

  2. I LOVED My Stroke of Insight. Highly recommend it. A few years ago, I decided to make an effort to read my mom’s favorite book, and this is what she recommended. One of the things I took away from reading it was that I could control my brain. Like, I was in charge. If I started thinking negatively, I had the power to say, no, thank you, that’ll be enough of that. I know not everyone could do that, but I found it really helpful. Especially when I had my first child, because a lot of dark thoughts come with a baby, a lot of “what ifs?” But when I started in on those what ifs, I would just say, no, we’re not doing that, and decide to think about something else. And most of the time, it works.

    I can’t wait to read your book, Debi, whenever it is ready. As for suggestions about medical books that aren’t too medical-y … I recommend Mary Roach, Incognito by David Eagleman … and … this is odd, but I would also recommend Blood, Bones and Butter by Gabrielle Hamilton. That’s actually a book by a chef about cooking and her restaurant, but it was really compelling even though that’s not a genre of books I’m generally interested in. I think that she does a good job of weaving in details about her life that are relateable to those who aren’t chefs.

    You posted awhile back about not being sure if you belonged with other parents of children with special needs – I say yes! Your struggle was real, and it hasn’t just disappeared. I think that makes you a legit parent of a child with special needs, and part of that blogging community.

  3. […] As I wrote last month, I’ve been trying to read more book-length writing about medicine as I work on my own memoir of my daughter’s years of misdiagnosis and medical intervention. I’ll continue writing about the books I read on the subject, both for my own records and for the benefit of anyone looking to find inspiration for their own story, encouragement from those who understand, and knowledge to help themselves and the people they love. In some cases, these books have educated me to the brink of tears; I didn’t know, I thought more than once, learning the reasons why my daughter behaved the way she did in a range of hospital environments and states of illness and recovery. […]

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