‘Waiting for Superman’ Book Review

Sunday 29 August 2021

Since childhood, I have been an avid reader and lover of books. I loved that I could be taken into other worlds, I could feel and share other people’s stories over and over again. I passed many hours with a book in my hands and never regretted it.

When I was diagnosed it was one of the things that hit me hardest, the fact that reading for long periods was very difficult. I could no longer just cruise from chapter to chapter and be enthralled, I had to now break it up page by page and many times, on bad days or while going through flares, re-read the same lines and paragraphs many times.

I have, thankfully, managed to adapt well and I can now enjoy books at my own pace and have started to love reading again, so when Louise approached me about reviewing a book for M.E. Support, I was more than happy to try.

The book I am referring to is titled, Waiting for Superman: One Family’s Struggle to Survive – and Cure – Chronic Fatigue Syndrome by Tracie White (the US edition is entitled The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness That Stole His Son by Tracie White with Ronald W. Davis, PhD).

The book has a lot of high-praise reviews in the media but for me, I couldn’t help but be a bit worried as I’ve read books relating to M.E. or Fibromyalgia in the past and couldn’t believe they even got the go-ahead for publishing. I am glad to say, though, that I didn’t have to worry about this book destroying my soul.

Let’s start with the basics and give the synopsis:

For the past six years, Whitney Dafoe has been confined to a bedroom in the back of his parents’ home, unable to walk, eat or speak. His diagnosis? The mysterious disease Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (M.E./CFS) which affects 20 million people around the world who largely suffer in silence because the condition is little known and much misunderstood.

 ‘Waiting for Superman’ follows Whitney’s father, groundbreaking geneticist Ron Davis, as he uncovers new possibilities for treatments and potentially a cure. At its heart, this book is about more than just cutting-edge research or a race to find an answer – it’s about the lengths to which a parent will go to save their child’s life.

In starting this book, the author promised that it was a book of hope and I will admit this is where my ambivalence towards the book started. I kept an open mind and started reading to take me on a journey that I hoped the author was right about. It was clear from the synopsis and early on into the book that it was not going to be a straightforward and easy read and for me personally, this was certainly the case. I struggled early on to get a good pace with this book; there were some chapters I could keep reading with a good awareness of what was going on and the journey I was being taken on, but there were a lot of paragraphs and pages that left me feeling disinclined to keep reading and I fear that because of the inconsistency, I may not have got the full effect that the author was hoping to obtain with this book and which other people have said they got. Am I too close to the project, so to speak? I’m not sure; certainly I felt at times the irony that a book about M.E. and the struggle faced by those with it would make it difficult for someone with M.E. to enjoy.

What made me feel this way? There were several things, but two things in particular. Firstly, the in-depth science vocabulary and analogies and the vast amount of them made it difficult at times to keep up with them. It meant that to get a clear understanding, sections would need to be re-read many times, and this was quite frustrating. Secondly, there were many people introduced and talked about at many different times in the book, and again this made it very difficult to remember who exactly that person was and what they had contributed to the research or where they fitted in on the journey. These things added to the lack of pace with the book and I really like books I can easily get into and stay with consistently.

There were moments that hit me in the gut and got me in my deepest feelings. I saw a lot of this book not only from the view of a chronically ill person but also as a parent. I could relate to the frustration many of the people mentioned were going through, the fear of not knowing what was going on with you and having minimal support and belief from medical professionals. The loss of hope every time you saw a doctor, lying in bed day after day watching yourself fade further from who you used to be and no one knowing how to stop it or make it better.

I then also felt the pain of thinking about if the roles were reversed and one of my sons was me or felt like I did. To see everything that was hoped for in their lives turn to nothing but distant memories and see them deteriorate more each day, knowing no matter what you did, you couldn’t fix it for them. In Ron’s case, however, he had the skills, knowledge and team to actually be able to do something for his son Whitney, but I could understand the amount of pressure that would put on him. The book was also exciting and did give little bursts of hope reading how the research was proving more and more that the stigma we patients have faced for more than thirty years was unravelling and showing that it wasn’t ever psychosomatic, it was a very real illness and there were many different results being found to show just how complicated the illness is.

I don’t want to give too much away in case anyone reading this does decide to go ahead and read the book, as I want you to have your own experience with it and I hope that you do give this book a try. Overall, this book is a challenging read, physically, mentally and emotionally but I am glad that I continued with it and never gave up. It is good to know that we aren’t alone, that there are people in the medical world who are starting to take this illness seriously and that they are ashamed of the medical practices that came before them and the treatment given to patients. It made me feel like there is going to be a day where we are no longer going to be ‘the hidden’, ‘the ignored’, ‘the lonely’ or ‘the millions missing’; there will be an M.E. awakening and it is all based on love and hope.

 

waiting_for_superman

‘Waiting for Superman’
Publisher: Atlantic Books
ISBN: 9781911630616