Tuesday, May 14, 2013

Not a safe book, but so far, a good one

I got up the nerve to look again for the book by the author I heard on the radio. I have a temporary reprieve. I couldn’t find it as an audio book, at least not yet. 

It’s been a problem lately. Several of the books I want to read are not yet available commercially as audio books. I keep meaning to reinstate myself with the Library of Congress program for blind and print impaired people as they might be available there, but somehow it never gets done. 

I’ve taken to not allowing myself to buy a book unless it’s an audio book these past few years. I can see well enough to read print books (with various magnifying devices) but I find the only time of day I can set aside to read is before bed. It’s the time of day when my eyes are most tired and thus reading with a CCTV or a magnifier is not only awkward, but my eyes are just too tired by then. It is one of the reasons I really do wish I had learned braille as a kid, even if I can also read print. 

So today I treated myself to an early birthday present. I bought the audio book My Beloved World by Sonia Sotomayor. Sotomayor is a Supreme Court justice and she is of Puerto Rican heritage. The book is a memoir. 

One of the blessings of learning I have HPS is that it has opened up a whole new part of my history, my family tree. It has made me curious about everything Puerto Rican as I’ve come to have so many Puerto Rican friends and to visit the island. 

Is it possible that DNA can have a memory as if to be a dream? The logical part of me says of course not. What a silly romantic notion. Yet because of HPS, because of that connection to Puerto Rico through my mother, I’ve discovered this whole other part of my heritage. I wonder if my cousins who do not have HPS have any of that sense of attachment to a place no one in our close family has lived since the early 1900s? 

There must have been someone, somewhere, in that family tree from Puerto Rico who had HPS. They wouldn’t have known it most likely. They most likely had bad vision and sensitivity to light. How did they cope? What was their life like in such a hot and sunny place? Did they have the GI issues I’ve had since my late teens? Did they ever have lung disease? How did they cope before some of the comforts (if not cures) of modern medicine? 

It’s the first night and I got as far as chapter seven. Honestly, if I didn’t have to get up in the morning, I’d keep reading. Sotomayor is a good writer. If I was trying to avoid a book that would make me emotional or even cry, I’ve failed miserably. 

I am surprised at how very open she is about her family history. She’s a wonderful story teller and I relate to so much of what she says so well. 

I can’t write about my own family so openly. I’ve shared a lot of personal things on this blog over the years, but for the most part, that is a subject I’ve left untouched. 

It isn’t that I couldn’t tell some good stories, or emotionally moving stories. Instead, it’s this feeling of protectiveness I have for my family. I might choose to put my life and HPS experience out there – to let a documentary film crew follow me around NIH and ask me lots of questions – but my family has never made that choice. 

As for all of those emotions so close to the surface, yet held at bay, perhaps this book is just a smidge safer than the other one. Perhaps it’s a way to ease into some of those emotions I need to tap into for creativity. 

I know it is common wisdom to “get it all out” – but I’m not convinced that in every situation that is true. My HPS life, and all of the other aspects of my life that have been touched by it, are an ever moving and ever evolving thing. Even if it were possible to purge every hint of negativity, every ounce of sadness or mourning or anger or frustration, they would only be replaced again. It is in our case not an event to bee gotten over, but a continuing thing we all learn to manage in different ways. 

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