There are lots of stories waiting to be told in this world. Some of them are interesting, good to read, mildly educational, even helpful. Others are lightweight, distracting, bring a wry smile or a loud laugh. There is room for stories like those — I read them a lot and I share about them here, from time to time.
Then there are the stories that are startling, stunning, that move you out of your complacent satisfaction with the status quo. Stories that send you to your knees in thanksgiving for your own particular patch of suffering and struggle, simply because what those stories tell is so overwhelmingly difficult.
I know a few people who live such stories, some of them quite close to me. Most of those people would never attempt to write their stories down — out of fear or exhaustion or lack of skill.
Then there is Claire Crisp.
She knows all about exhaustion, and she knows all about fear, but she is also a skilled narrator who is not afraid to tell it like it is, without flinching, without apology. And tell it she does in this beautiful book, “Waking Mathilda.”
This story was birthed in one parental decision that changed the trajectory of a family’s life forever. It was a decision made in good faith, for all the right reasons, and it was a decision that should never have had the outcome it did.
When Claire’s lovely young daughter, Mathilda, was three years old, she and her husband — on the advice of their doctor — made the decision to give her the H1N1 vaccine. She had had a bit of a rough start in life and the flu that year was predicted to be harsh and deadly. So they took the time and care to take her to the clinic near their home in England and make sure she got her shot.
And then, everything started sliding downhill.
This is a story that must be read to be believed and I strongly recommend that you order yourself a copy TODAY. It is beautifully, hauntingly written. It is rich with information that never feels in the slightest like ‘facts.’ It is a story that is hard to read at points, a story it is almost impossible to imagine living.
Yet, live it, they did.
Mathilda is the youngest person ever to be diagnosed with narcolepsy, a difficult and debilitating neurological disorder that essentially causes the sleep center of the brain to go haywire. Reading about the long, painful process of discovering what went wrong with this active, intelligent, interesting little girl is heartbreaking to read.
It is also inspiring.
Why? Because it is a story of persistence, of courage, of commitment and of love. Claire never gives up. Never. She does research, she insists that something is wrong, very, very wrong, even when medical personnel ignore what is right in front of their eyes. She and her husband exhaust themselves trying to care for a child who cannot sleep at night and cannot be sensible for much of the daytime. Their older two children struggle to understand what has happened to life as they knew it. Every one of them is remarkable.
This book reads like a terrifying mystery novel, except there is nothing fictional about it. Pieces of the puzzle begin to come clear, a visiting doctor really looks, really listens, and makes the correct diagnosis, a clinic in Stanford CA does research on an expensive medicine. That medicine is not available in England and a life-changing decision for everyone involves an international move, and a huge gamble. No one as young as their daughter has ever been treated with this medicine. Will it work?
This is a story I could not put down, and neither could my husband. This particular journey will never be over for Mathilda — she will live with the effects of this disorder for the rest of her life. But she, and her parents, have found some answers. They have begun to see the light at the end of the tunnel. They’ve built a new community, in a new country. Claire has become an outspoken advocate for narcolepsy sufferers and those who care for them, and Mathilda is blossoming into a charming, hardworking, committed student who happens to deal with a dreadfully messed up brain.
A remarkable read. Do yourself a favor and read it ASAP. Then get a copy for a friend, too.