It must be everyone's worst nightmare--to be trapped inside an unresponsive body, experiencing the world outside but unable to communicate with it ("It's an Incredible Life," by Richard E. Meyer, Dec. 17). That Julia Tavalaro survived her hell on earth for many years and triumphed over her profound disabilities is phenomenal and inspiring. Her story should be required reading for all health-care personnel and family members of those similarly afflicted.
How different it would have been had Julia been treated with gentle respect--if her caregivers had spoken to her and explained things, handled her physical needs with dignity, truly listened to her and her family and provided an attractive and stimulating environment. Compassion and empathy might have ameliorated her mental and physical suffering.
Diane K. Mitchell
I am a registered nurse, and I makes it a point to treat all my patients as though they understand everything. That includes talking to them during each visit and explaining what I am doing, even though I may receive no response.
That Julia's caregivers would either not talk to her or speak only in vulgarities is abominable. I wish the offenders could spend at least a few days in Julia's place--much less the six years she spent in her living hell.
Thank you, Julia, for this powerful lesson and for not giving up.
During my more than 18 years as a nurse, I've taken care of many stroke patients, including my own mother, who also was unable to speak. Not all nurses show impatience or lack of concern, as Meyer points out, although there are some who should not be allowed to work with people and should get out of the profession.
It was sad that so many people cared for Julia without taking the time to realize that she was a real person lying there. How she must have suffered all those years, trying to make herself understood, before someone came to her rescue. That her doctors didn't figure out the nature of her situation was shameful.
I wish I could have cared for her.
Julia's triumph over adversity was awesome. Her story reminds me of my father's eight years as a stroke victim.
He was not as profoundly handicapped as Julia but unable to participate in communication as we know it. He would say yes when he meant no, screaming "Yes, yes, yes!" when we couldn't figure out what he wanted and "No" softly with a smile when we guessed correctly. I was always sure that the brilliant man we knew was trapped inside that shell. How badly it felt to have to talk to him in the simplest of terms, instead of the with erudite language we shared previously.
I hope I never suffer a stroke, to be trapped inside my body, unable to communicate. I'm sure many would say that it is worse to suffer unending pain, but I'm not so sure of that.
Why hasn't it occurred to anyone to teach Morse Code to Julia. She could use it by blinking her eyes.
And it must be possible to write a computer program--if one doesn't already exist--to read eye blinks and translate them into words on the screen. How much simpler and quicker that would be than the cumbersome method described in the article.
Mary E. Kimball
All I can say is that the article on Julia Tavalaro's life was the most powerful and frightening story I have ever read.
I began reading Julia's story with dry eyes. I finished it alongside an empty box of pop-up tissues.
Although Julia, in a tremendous test of spirit, lost faith at times in the great creator, she has proven that prayers can be answered for souls strong enough to reach beyond the limitations of materiality.
I salute Julia for her sublime courage. She deserves our admiration. And thanks to Meyer for his rich, insightful piece of simple, yet powerful writing.
As a practicing speech-language pathologist, I've had the privilege of working with thousands of stroke survivors in skilled-nursing-home settings. Many of the people I provide therapy for speak loudly to me in their silent voices.
I often imagine that they see the world through a peephole--a fish-eyed slant of white scurrying by. Invasive hands over which they have no control tug at their skin and raise or lower their center of gravity. Like trained seals, they are often granted warmth and approval when they do as they're told, or at other times scolded like a pup that has messed on the carpet or a child being obstinate at mealtime.
I hear their haunting and futile wailing when I turn on my pillow--I who knows exactly where the toilet is when I need it, who knows how to bring a drink to my lips when I thirst and a blanket to my chest when I chill.
I hope that Julia's story helps those who must deal with such victims gain the understanding that they are still viable people who still belong--that each one is still one of us.
Robin L. Black