What I’m Learning: Part Two

what-im-learning-two

 

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.

Knowing is a huge source of security for me. Even as I’ve been recovering myself from a moderate concussion, learning more about how the brain does its healing and rebuilding is soothing. I always wanted to understand the mechanics of the diseases with which my daughter was diagnosed — how they responded to different stimuli, how they could progress, how they moved or grew. It has never been enough for me to be told “here, take this and it will help your headache;” I want to know why it will help. I want to know what the effect on my body might be and how long it might take and the reasons for this medication over another.

It is in this vein that I read the books below. How and why are my favorite questions.


The Panic Virus: A True Story of Medicine, Science, and Fear by Seth Mnookin

Image courtesy of Goodreads

In 2017, I contracted whooping cough, also known as pertussis. Interestingly, I had written about my fear of whooping cough two years earlier in an article which was published on TheMighty. I’d been vaccinated, my children and husband had been vaccinated, and I’d even had the pertussis booster at the request of my doctor because of how badly pertussis might affect me, given my asthma. Despite all of that, I got it anyway. The coughing permanently damaged my vocal cords and cost me months of productivity. Still, at least I didn’t get it until my daughter, born with a congenital heart condition that narrowed her airway, had undergone a second surgery to repair it and free her trachea. If she’d contracted it as a baby or toddler, it could have killed her.

Why did I get pertussis, though? In The Panic Virus, Seth Mnookin traces the journey from false accusation and falsified science to widespread misinformation about the safety of vaccines, particularly when it comes to the connection between vaccines and autism. Though I had strong opinions going into this book, I was struck throughout by the way that Mnookin refuses to demonize anti-vaccination activists and families. His sense of compassion, respect, and curiosity are palpable. Despite his even-handed approach, the conclusion he reaches is clear: vaccines today are not dangerous, and lowered rates of vaccination are causing real problems for people like me; for babies; for the elderly; and for families all over the country.

He eschews the idea, in the end, that the media should cover this topic as though it were a debate. It is science versus “gut feeling,” which is not a debate at all. “The type of journalism that relies on the reporter’s notion of what does or doesn’t “seem” correct or controversial is self-indulgent and irresponsible,” he writes. “It gives credence to the belief that we can intuit our way through all the various decisions we need to make in our lives and it validates the notion that our feelings are a more reliable barometer of reality than the facts.

While this book is heavier on research than what I’m writing, I appreciated the thorough nature of his deep-dives. Too, he weaves through the stories of families who believed their children were damaged by vaccines, described with a pathos I admit I could not have achieved. It is a book written with emotional balance. I found it admirable and very educational.

***

Counting Backwards: A Doctor’s Notes on Anesthesia by Henry Jay Przybylo, MD

Image courtesy of Goodreads.com

Dr. Przybylo — or “Dr. P,” as he introduced himself to us — was my daughter’s anesthesiologist on more than one occasion, but most importantly, he was by her side for her final surgery. He was friendly, matter-of-fact, and knew exactly what to do to keep her and me calm. I remember his thick black glasses and his comfortable presence. He struck me as a man at ease with his work.

In his book on anesthesia, however, he admits to an altogether more alert, vigilant outlook in the operating room. He describes his work with reverence and a sense of deep awe for how little science understands about why anesthesia works. At the same time, his mastery of the tools he has to bring patients through the “Five A’s of Anesthesia” (anxiolysis, amnesia, analgesia, akinesia, areflexia) is remarkable. These “Five A’s” make his patients calm, prevent memory formation, relieve pain, restrict movement, and stop adrenaline surges. I was struck by his descriptions of the work itself, which effectively makes him the only “generalist” in the room, responsible for a patient’s breathing, circulation, heart beat, and all five A’s. Still, he’s focused and present, evident in these quotes from his book:

“I know, as sure as the sun rises in the morning, that when I add a gas to the inhaled breaths, loss of consciousness follows; and when I remove the gas, awareness returns. This is a harrowing responsibility, and one I never take for granted.”

“Entering the procedure room is like entering a place of worship. The space is instantly recognizable, and its intended use clear. The procedure table sits in the room proper like an altar.”

As important to me as Dr. Przybylo’s detailed and fascinating explanations of how anesthesia works and what happened in the moments after I left my daughter’s side in the operating room, I think the real value for me in reading this book was to see my daughter’s medical team at the children’s hospital as human. Of course, to people who want to know why we haven’t sued, I often exclaim with resignation that everyone makes mistakes, and suing won’t change any of my daughter’s childhood — but reading Dr. P’s accounts of the affection he felt for his patients and the deep connections he made to their families was good for my soul. I’d always liked him — and of course, he was not a diagnostician responsible for the issues we faced — but this book loosened something that was caught in me, before. OK, I thought and finally accepted, for good, they’re all just people.

 

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