As a child, I often looked at my sister and thought, “Can she understand me?” It wasn’t until I was an adult that I realized she had probably been wondering the same thing.
My sister’s name is Tiffany, and she was born with tuberous sclerosis, a disease that causes tiny benign tumors in her brain. Those tumors impact her big in ways, such as with seizures and the inability to walk or talk.
Tiffany is 41, and I am 28. For the most part, she has remained the same throughout her life. She can smile, laugh, cry, scream, grunt and make other noises, sit with her legs crossed, roll on her side, and push people or food away. But words have escaped her.
My sister has always lived without words, and as a novelist and travel writer, I live for them. But my writing talent wouldn’t have been possible without this woman who cannot speak.
Over four years ago, a question was posed to me: “What makes you a good writer?” When I dug deep, the answer was easy.
I was always a curious child, and perhaps that’s why Tiffany and I bonded so easily. I used to climb all over her as a toddler, and Tiff — though she generally hated anyone messing with her — would let me. It was as if the closer I was to her, the better I might understand her. There are majestic tales of me climbing out of my crib without anyone’s knowledge, only to be discovered snuggled up beside Tiff, her arm around my tiny body.
Our bond grew as we aged, and while I always talked to Tiff, she never spoke back to me — or at least not in the way that most people do.
Tiffany may have lacked the ability to form words with her tongue, but she had the ability to use other languages, and without realizing it, I became fluent in them, too.
See, my sister is expressive with emotions and noises, and she uses body language more eloquently than some people speak. Her head usually rocks in a never-ending movement of “no,” but when it stops, I know she is listening. Biting her hand means she’s in pain or discomfort. The tightness by which she grips my hand when I hold hers tells me how much she misses me. Usually, she never moves in her sleep, but when I’m visiting her in my hometown and we sleep in the same bed, she scoots toward me throughout the night, until there’s no room left on my side of the bed.
She speaks with noises, too. Each grunt, scream, smile, guttural sound that escapes her throat has a different meaning. Some noises tell me she’s hungry, others express that she’s annoyed and wants to be left alone, some convey how happy she is, and some speak of loneliness.
When I began writing books — I just wrote. I didn’t think as to where my ability for writing came from, how I formed words or dialogue, or set a scene so that readers could imagine it in their heads. But over four years ago, while studying in my MFA Creative Writing program, a question was posed to me: “What makes you a good writer?” When I dug deep, the answer was easy — Tiffany.
Since the day I was born, Tiffany has been teaching me how to write.
To a non-writer, writing is just the tap-tap-tap of the keyboard, a mysterious formula only writers know that allows them to put words together in a Microsoft Word document until they form sentences, and then pages, and eventually a book.
But writing starts before that. Writing begins with reading people, observing them in those moments when they’re not speaking with words, but speaking with their body, their movements, their sighs and grunts, the way their laugh falls flat, how they lean into a hug or pull away when you try to touch them, and smile with teeth or don’t.
People speak louder when they don’t use words, and yet, it is a difficult language to learn, and even more difficult to convey in books so that the reader knows what you are saying without having to say it.
Tiffany taught me how to read people, and that gave my writing authenticity. Because of Tiffany I learned languages that people are unaware they’re speaking, and I use that skill in my career every day. She was my first writing teacher and my first audience, and I couldn’t have become a writer without her.
I return to my hometown to visit Tiffany at least once or twice a month, and our conversations are as complex and as loud as ever. To the outside viewer, it may only appear like a one-way discussion, with me speaking words aloud to Tiffany as she sits in her wheelchair moving her head from side to side, pausing to stare at something on the ceiling or to grind her teeth.
What an outside viewer doesn’t catch is the slight upturn of her lips after I speak a sentence. Or how her eyes zoom in on a glass of milk, because she’s waiting for me to pull the chocolate syrup from the fridge. How she grimaces when I prepare her medications or rolls her eyes when I complain about work. How she smiled and laughed when I showed her my book, Secrets of the Casa Rosada, for the first time.
They don’t notice how she softens in my hug or stares at me with her black eyes just a millisecond longer than usual, in her way of saying, “Do you understand me?”
But they’ll hear me reply, “I understand you, sister, and thank you.”
Bustle's "Without This Woman" is a series of essays honoring the women who change — and challenge — us every day.