Writing about not being able to write—it seems like a paradox. And it often is. But I am a writer with a language disorder. When I was 27, an aneurysm ruptured in my brain. At the time I was an actor/director/PhD student in New York City. But after my emergency brain surgery in 2007, I wasn’t any of those things. I had acquired “aphasia.” I’d largely lost my abilities to speak, read, and write. My internal and external voices were mainly mute. My world was Quiet.
I’d characterize my early stages of aphasia as lacking several types of awareness. There was a lot I didn’t know about my disorder, but it was a very generous brain injury, because often I didn’t know what my issues were until I had recovered from them. However, I had to leave my independent life in NY, to return to my parents’ home in LA, where I embarked on speech and language therapy three times a week. Slowly, my inner and outer language started to re-engage. And now 7 ½ years after the experience, I have nearly finished a memoir, which is slated to be released in Spring 2016, by Simon & Schuster.
Why would I write about my aphasia? Moreover, how would I write about it? Aphasia deals with wordlessness, so it eludes description. It is like nothing. Everything. Down to its very essence, aphasia is ineffable. Inserting language into that state of being, in many ways, undoes it.
My path to publication was not straightforward. Most people with aphasia develop compensatory strategies to help with their language lack. And my first experiences with writing, post-injury, was when a hospital speech therapist suggested I keep a journal. It was a linguistic prop, because in my acute stages, I could only say 40 or 50 words. Writing was easier than speaking.
Around the time of my second brain surgery, I looked back into the journals I’d been keeping since the rupture 6 months earlier. I was still writing in them, with this general assumption that my aphasia wasn’t that serious, had never been that serious. But when I encountered my earliest attempts at language, the fractured words and phrases, it was clear the text would’ve been unintelligible to anyone but me. Even I had difficulties. My sense of self was called into question: If I was like that then, what was I like now, and what would I be in the future. It was a terrifying and motivating curiosity, and the journals started to become something more.
Years later, I became a volunteer at an organization that serves people with aphasia, where my main role is to support meaningful conversations, at all levels of disfluency. There is a wide spectrum in the aphasic experience. Some people can speak, but can’t write. Some people write, but can’t speak. Reading is a mixed bag. Often when I interact with this group, it feels like I am seeing myself reflected, but other times, our enterprises couldn’t be any more dissimilar. For instance, I used to believe that everyone with aphasia had dealt with that dual inner/outer silence I woke up with. But several people have told me that they retained their internal language throughout, and their desperate struggle was to just say those words aloud. They had a very different Quiet.
With this book, I’ve been writing my way back to fluency, and although my aphasic symptoms have diminished significantly, the condition didn’t disappear. My most consistent compensatory strategy now is having my computer enabled for “text-to-speech.” I listen, and re-listen, to most of the words I read, and almost every word I write. I’ve come to deeply identify with the male, computerized voice that emits from the speakers of my Mac laptop. God forbid Apple ever retires “Alex” (Please don’t! Not ever!)—because that would produce some profound disorientation. And I suspect if a stranger observed the actual effort that “writing” entails for me, they’d probably advise me to do anything else but write.
However, aphasia doesn’t directly affect intelligence, and some of the most sophisticated thinkers I know have aphasia. Even people with 10 words in their vocabulary still tell stories. Great stories. Evocative stories. They draw, they gesture, they intone. They’re photographers, painters, poets. We are a communicative species, but words are a very limited part of our communication palette. People need stories to give us context, perspective, and bring meaning to the otherwise meaningless experience.
All we ever do is tell our stories.
Lauren Marks is an American author living in London. She has been published in Fresh Yarn, The Huffington Post, Brain World, and Aphasia News. She has spoken at venues ranging from book fairs to university classrooms, from professional conferences to storytelling events. In the UK, she volunteers at Connect: the communication disability network. Some of this article includes excerpts of her upcoming publication, A Stitch of Time: Portrait of a Mind in Construction. More at www.AStitchofTime.com .