After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Book Corner

I recently did something quite out of character: I read several books about others going through life changing illness. I tend to avoid these books like the plague, partly because I tend to read books to escape, not compare, and in the past have found little comfort reading those types of stories.

Well, two of the books I read were so excellent, I wanted to share them here. I initially selected them because they were both told by people who were “locked in”; ie their minds were there and working but they had no physical movement or connection.

While I have been so humbly blessed as to have been in this condition for only a relative brief time; it is a period I will never forget.

Surprisingly, then, I felt liberated in these book.

The first: The Diving Bell and the Butterfly: A Memoir of Life in Death by Jean-Dominique Bauby. This book is pose-perfection. Seriously, the writing and narrative are superb. Told so simply, if you do not find it haunting, please let me know. Otherwise, word of warning, it is not a happy book. (I should note that I really am a classic (old) movie fan, so am thus accustomed to unhappy, heart-breaking yet satisfying endings, which this book qualifies for.) Interestingly, my first nurse who was with me through the first year as I regained tiny movements, told me I had to read it.

I am so grateful that fate only brought it to my attention now. It is not for the faint of heart. It’s tragedy is not so much about his illness, which left him forever with the ability to only control the blinking of one eye—which is how he wrote (and edited) his book, letter by letter. Born and raised in France, Bauby was at the height of his career as the editor-in-chief of French Elle before his sudden illness. For me, I found the heartbreak of his tale in his life pre-illness; all the turns he didn’t make, and all the times he showed up a minute too late. The beauty is in how he told his story, allowing us to know him, his kids to know to him, and all of us appreciate the sweetness of life.

Oh! His conclusion and thoughts about Sundays were completely accurate, judging from my own experience. 

The second book: Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body by Martin Pistorius. This narrative should be made into a movie. It’s a Hollywood story. The beginning is not for the faint of heart. Yet, it’s the physical arch, the gaining of life and the better- than-Hollywood ending which makes it feel like you conquered Everest with him. Like me, Martin has no idea what took from being a healthy, super intelligent (that part not like me), child to being bed ridden then into a coma at 9 years old. When he woke up from the coma years later, no one noticed.

And for the following 12 years, he could not get them to realize he was awake.

If your first instinct is incredulous or judgemental at how his family or doctors could have missed this, don’t. His family is, well, real, and loving, and in my opinion, wonderful. For those who believe it’s only the mother who is capable of being a super-human parent, this book proves your theory wrong. The story covers more than 20 years, a beyond-expectations recovery, and an evolution that makes you not only cry but stand up and cheer. It is a story I can relate to. Though like so many things in life, I have only the tiniest glimmer into what his life must have been like, yet can’t even begin to imagine the courage, strength, love and capacity of forgiveness that he has needed to not just survive but make a full life.

Yes, do read it.

It was funny, but when I finished Ghost Boy, the one desire I had was to hug his parents and say, “Congratulations. You did it; you survived it; you gave Martin a life; now let go of all that you didn’t know and therefore couldn’t control.”

And, with that thought, and in writing this blog, I realized I have given myself a therapy session. Because if there is one gift I could ever give myself, it would be that. To say to myself, and accept, “Congratulations. You did it; you survived and that’s enough. Now, let go of all that you didn’t know and therefore couldn’t control.”

Perhaps, one day, this will come.

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Play Date