I love to read.
I am not the most cultured student of literature, but I deeply treasure books that take me intriguing places I have never known, or show me the treasured familiar in new light. My current obsession is anything written by Antoine de Saint-Exupery. In considering why I am so taken with his works, beyond the brilliant writing, I came to one conclusion: he navigated by the stars, in places and situations indescribable to those who’d never been there. My life often feels like that.
Monsieur Saint-Exupery gives voice to many of my emotions about this journey with Abbie, in words more beautiful and succint than I ever could have chosen. There are two other books, however, that, in my eyes, give voice to Abbie herself. If you want to understand her life of overcoming, savor the two books I recommend below.
I am blessed to have Maia Rosen, the librarian at Hanahouoli School, as a friend. I am forever asking her for recommendations for both my voracious reader/listener (Abbie), as well as my reticent readers (the twins). One day, she dropped Out of My Mind off at my house, saying that she thought of Abbie the whole time she read it. A quick glance at the book cover had me hooked:
“Eleven-year-old Melody has a photographic memory. Her head is like a video camera that is always recording. Always. And there’s no delete button. She’s the smartest kid in her whole school—but NO ONE knows it.
Most people—her teachers and doctors included—don’t think she’s capable of learning, and up until recently her school days consisted of listening to the same preschool-level alphabet lessons again and again and again. If only she could speak up, if only she could tell people what she thinks and knows. But she can’t. She can’t talk. She can’t walk. She can’t write.
Being stuck inside her head is making Melody go out of her mind—that is, until she discovers something that will allow her to speak for the first time ever. At last Melody has a voice . . . but not everyone around her is ready to hear it.”
“This sounds just like Abbie!” I thought. The accuracy of Ms. Draper’s story could only have come from a mother of a disabled child, which she is. I read it in one sitting. It is the best description I have ever read of Abbie’s life, her hopes, her frustrations, her potential, and what we all risk missing when we see through people who cannot speak.
Each of Abbie’s nurses has read it, and I’ve given copies to school personnel as well. I think sometimes it helps to hear it from a different voice, even if this is “fiction”…I would label this book “composite non-fiction” instead. Melody may not be an actual person, but rather thousands of people with so much treasure locked in their heads and hearts.
Many people over the years have recommended The Diving Bell and the Butterfly, but for some reason I resisted reading it. In fact, I don’t think I mentally processed what they were saying about it, because until I bought it recently, I didn’t realize it was written by a very successful man, felled by a stroke, suffering from Locked-in Syndrome. Although this is not technically what Abbie has — she is blessed with more movement and ability to express herself — M. Bauby’s painstakingly dictated memoir is another window into Abbie’s day-to-day life. I often wonder what her nicknames for people are…although her facial expressions certainly betray whether they are positive or negative! I worry that she suffers irritations, aggravations, and discomfort that we brush past because she cannot vocally complain.
M. Bauby, a former editor of the French edition of Elle magazine, had a voluminous memory to mine in escaping his body through imagination, remembrance, and mental activities. I wonder how Abbie flees her diving bell….what are the imaginings of a ten-year-old who hasn’t run in seven years, who hasn’t eaten, sung, or laughed heartily in that long. What scripts does she use? I hope desperately one day to hear her stories, not only to experience again the divine symphony of her voice, but because the adventures of her mind, her freedom gained on night’s downy wings, her utterly unique perspective on life and love will be unlike anything my ability-bound ingenuity could conceive.
Mrs. Draper’s book is the anthem I would like to sing boldly to everyone who ever meets Abbie. “SEE HER!!”
Monsieur Bauby’s book felt like Abbie whispering in my ear. Quiet, personal, profound. An exquisite gift given at an exceedingly high price. I will treasure his words, strength, and courage forever.
Until Abbie can speak completely for herself, I am grateful to have these books to bring her messages to my heart….and yours, if you choose.
I am writing this on Thanksgiving night. Abundance. That is the word that comes to mind as I close my eyes to reflect on this day, my life, and my blessings. I shared dinner this evening with a woman from California who said, “I still pray for Abbie every day. She is at the top of my prayer list, so she always comes at the beginning of my prayers.”
I was humbled and grateful to hear this, and thanked this faithful woman. at the same time recognizing her as symbolic of you…so many who lift Abbie and our family in prayer. We are profoundly thankful for you, and hope that this Thanksgiving finds you with peace, joy and hope in your heart and home.
God bless our troops who are away from their families this day….may He keep you in safety and health until you return. Your nation is grateful!