Waiting for Superman: One Family’s Struggle to Survive – and Cure – Chronic Fatigue Syndrome by Tracie White.
Waiting for Superman is a must-read book. It is a gripping account of an acclaimed scientist who has re-directed his prestigious career in genetics into finding a cure for the disease, Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS), which is slowly and cruelly stealing his son’s life.
Tracie White is an award-winning journalist and a science writer for Stanford University and this really comes through in her writing. Waiting for Superman reports on the science, the history, and the family at the heart of this equally tragic and inspiring story. Tracie explains ‘I had gained a reputation as the go-to writer for tragic stories, so it was natural that my editor at Stanford Medicine magazine had assigned me to this story about a father trying to save his severely ill son.’
The book opens with a simple dedication: ‘For Whitney’; yet the emotional power behind those two words is immense. Whitney Dafoe is a 37 year old American who suffers with severe ME/CFS and has been bedbound for six years. ME/CFS is an illness which is not yet understood by scientists and the medical world. There is no official test to diagnose the illness, treatments are incredibly limited, and there is no cure. The condition affects over twenty million people worldwide and symptoms range from mild to severe.
Before he fell ill, Whitney was a keen traveller and photographer; ’an adventurer and an artist’. Tracie explains in her Introduction: ‘Once he was healthy and strong, but an illness crept up on him slowly, incrementally taking away bits of his life. First it took away his energy, then his ability to walk… Eventually he could no longer talk or eat. He couldn’t leave his room or even bear to have others join him there.’ Tracie’s book follows Whitney’s story as she spends time with his family, and sometimes Whitney himself, and becomes captivated by their mission to save Whitney’s life by finding treatments, and potentially a cure, for ME/CFS.
Whitney Dafoe’s father is Ron Davis, who Tracie introduces as ‘a legendary Stanford University Scientist’. Ron is the Superman that Whitney (and the ME/CFS community worldwide!) is waiting for. Ron has made it his mission to research into ME/CFS; primarily to save his son and also to find answers for the millions of other people worldwide who suffer with this illness.
Tracie has written the book in a very honest and compassionate way. As a reader you feel as though Tracie has taken you gently by the hand and is bringing you along on her journey as she gets to know Ron, his wife Janet, their daughter Ashley and, eventually (thanks to a quirky side effect of the drug Ativan, a medication used to treat anxiety), Whitney himself.
I would recommend this book for people who have ME/CFS as it is an important and poignant read, but is also accessible and informative for people who are unfamiliar with the illness. There is much concern within the ME/CFS community at present, as patients diagnosed with Long Covid, who have been unwell for six months or more, have the potential to be given a diagnosis of ME/CFS. Patient numbers are growing. Now, more than ever, research into this illness is vital and awareness and funding need to be raised. Tracie’s narrative adds another voice to the story of ME/CFS and, as Tracie says in her Introduction, ‘It’s a story that needs to be told.’
As well as being an incredibly well-written narrative, I also felt the font, paper colour and layout of this book helped to make it accessible. I have always been an avid reader but, since becoming unwell with M.E. myself, I do find I now struggle to read certain books. I can be easily put off by a small font, or lots of text with infrequent breaks. However, I was pleasantly surprised when I opened Tracie White’s book as the pages were nice and bright and the font is a good size and well-spaced. Tracie’s writing style is also very easy to read and I found I’d devoured the first five chapters in my first sitting! This book is definitely a page-turner.
To end on a more personal note, I read a large part of Waiting for Superman whilst waiting patiently at the Transient Ischaemic Attack Clinic to see the Consultant. My ME/CFS is only mild but, a couple of nights before, I’d temporarily lost the ability to speak for a couple of hours (which was quite an unexpected and scary experience). The doctors wanted to check whether I’d had a stroke. I had blood tests and an electrocardiogram (ECG) – a test that checks the rhythm and electrical activity of your heart. I also had an MRI scan of my brain. Thankfully, the results came back clear. But the speech loss I experienced is most likely just another new and unexplained symptom of my ME/CFS (and similar to a migraine, which can also cause temporary speech loss). So, I, like Whitney and the millions of other people who suffer with this illness, am Waiting (patiently) for Superman to find the answers to the mystery illness that is ME/CFS.