Wow! How? Patient Memoirs

In his book, The Long Haul, Ryan Prior writes about his advocacy on behalf of people with ME/CFS:

Though I had negotiated a fragile truce with the disease, my deeper fear was that it would eventually fully disable me, just as it had done for so many of my friends…At the edge of my every thought was the inescapable notion that the disease could be like a ticking time bomb, conspiring, one way or another, to detonate my dreams as well.

Later he writes that "my own body was nothing if not a single data point in a vast scientific debate, one which lent yet another tantalizing lens through which to examine how we contend with Covid and its long shadow."

It’s this combination of individual experience and collective learning that draws me to read (and re-read) memoirs by patients, survivors, and caregivers. They may be single data points but each one shines as brightly as a star, giving readers hope and, sometimes, a way to navigate out of the darkness.

Today’s Wow! How? edition features a few of the memoirs I have loved and learned from:

Wide Awake and Dreaming: A Memoir of Narcolepsy, by Julie Flygare, JD (2012). Determination thrums like a bass line throughout her story of diagnosis and early treatment. She is now president and CEO of Project Sleep .

I’d been scolding myself for my every misstep since being diagnosed with narcolepsy. Self-criticism had motivated me to work harder in the past, but now, I was only hurting myself. With little-to-no positive reinforcement from others, beating myself up made no sense. If I wasn’t compassionate toward myself, no one else would be either. It had to start from within.

Autobiography of a Face, by Lucy Grealy (1994). A searing memoir by a childhood cancer survivor who became a poet.

I spent five years of my life being treated for cancer, but since then I've spent fifteen years being treated for nothing other than looking different from everyone else. It was the pain from that, from feeling ugly, that I always viewed as the great tragedy of my life. The fact that I had cancer seemed minor in comparison.

Chasing My Cure: A Doctor’s Race to Turn Hope into Action, by David Fajgenbaum, MD, MBA, MSc (2019). A rare-disease story with a twist – the patient is a doctor and not only helps find his own cure, but also founds a research organization to help others do the same: Every Cure .

Most important, I was learning that innovation isn’t an art. Innovation, like hope itself, is a force. Innovations are most effectively made with the following systematic approach: inventorying all possible ideas from a wide range of stakeholders, systematically evaluating and prioritizing them, recruiting the best people in the world, and then working like mad to execute.

AfterShock: What to Do When the Doctor Gives You – or Someone You Love – a Devastating Diagnosis, by Jessie Gruman (2007). This practical guide to navigating illness does not shy away from talking about financial concerns, which is top of mind for most people when interacting with the health care system.

Through the fog of drugs and the moans of the burn patient in the next cubicle, I had overheard a conversation between my parents – something about, ‘I don’t think our insurance covers this.’ And there I was, with each breath of oxygen spending my brothers’ college funds, each radiation treatment diminishing my family’s savings, each bag of saline using up the grocery money…I have since assumed that part of the reason a serious diagnosis is devastating is that it forces you to weigh the consequences of your life and death and deeply practical terms as well as existential ones.

Your turn! Is there a memoir that changed your thinking about health and health care? Please share in the comments.