Tuesday, January 14, 2014
Robbed of the ability to walk and talk, writer blinks her stories
Zehra Madenli has written thousands of words; each painstakingly slow, her eyes carefully scrolling across the screen, blinking out each letter, space, and punctuation mark.
It is a labour of love. It is one of the few things she has left.
Since 2009, amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, has robbed Zehra of the ability to walk, talk, eat and bathe herself.
She retains control only over her eyes and bladder. Eventually the neurodegenerative disease will kill her.
She is one of between 2,500 and 3,000 Canadians living with ALS. There is no cure and no treatment. Most patients diagnosed die within two to five years.
Zehra, 48, has now lived four years, but at cost.
“It’s been hell,” said her husband Sinan. “It’s a death sentence.”
Every year Zehra lost another ability — to walk, to talk, to swallow — and Sinan fell into a deep depression and developed his own health issues.
“In two years time she was totally wiped out,” he said and so was he.
Sinan uses a walker to get around, his diabetes is particularly bad now and he is on disability; money is tight.
“Most of our friends abandoned us. They just wouldn’t show up and I would say why don’t you come visit? She misses you, she’s a normal person and they’d say, ‘Oh we couldn’t stand seeing her like this,’ ” he said. “That really sort of pissed her off.”
It also triggered Zehra’s writing, which she posts routinely on her website.
“It is relaxing,” she said.
She speaks the same way she writes, using a DynaVox EyeMax System.
The device, which looks like a computer monitor and is attached to a table, tracks her eye movements. Once she’s looking at it, a blink will select the letter, serving as a click of the keyboard. A computerized voice then vocalizes Zehra’s words.
Writing a single short story can take hours.
She writes in Turkish, her native language, and has won a few short story awards for her work in Turkey. The couple hopes to turn the short stories and poems into a book.
New friends and supporters translate the stories into English, French and German. Zehra doesn’t edit and doesn’t erase; Sinan goes through and corrects any errors.
She isn’t the first person to blink-write. Jean-Dominique Bauby used blinking to write his memoir, , which was later turned into a movieThe Diving Bell and the Butterfly, which was later turned into a movie.
Some of Zehra’s stories are also very personal, some functioning as love letters now that she can no longer hug or kiss her husband.
“The treasure for my eyes, the light for my darkness, companion of my hardships,” wrote Zehra of him in one piece. “My doctor, my nurse, my arms and hands, my legs and feet, my voice.”
“I’m honoured,” he said, wiping away a tear. “It’s tough, it’s quite difficult to talk about, things are not normal. I thought it was tough before but it’s tougher now.”
The couple is now trying to raise $10,000 for ALS Canada, money that will go to improving quality of life for those with the disease as well as research for a much hoped for cure, at minimum treatment.
Zehra is nothing short of inspirational, said Dav Cvitkovic, vice-president of fund development and marketing for ALS Canada.
“What this story says is that despite having such a devastating disease (people) persevere no matter what,” she said.