19 October 2009
Gwen's story
Gwen's story began on a mid-May day when she was 22. She'd stopped by her parents’ house on her way home from work to pick up her daughter, Al-Lexis, who was about 18 months old. Gwen’s parents watched their granddaughter during the day when Gwen was working. While she was at her folks’ house, her father asked her to leave Lexis (as her daughter was called) and pick her up later. Her father, a quiet, stoic man, had never done that before, but after he insisted two more times that the baby should stay, Gwen consented, thinking that maybe he just wanted to spend a little more time with Lexis and this was his way of asking.
With the sun heading into the western sky, the temperature was dropping quickly. Gwen hadn’t worn a coat that day, so she borrowed a neighbor’s jacket to wear for the bus ride home. The men’s jacket, made of heavy wool, was too big for Gwen’s small frame, but she took it and left, leaving her daughter behind. The ride home seemed long without her daughter sitting next to her, chattering away, although the only intelligible words she knew then were “mama” and “dada.” Later Gwen would thank God Lexis hadn’t been with her.
When Gwen arrived home, she could smell the gas as she was walking up the driveway. There’s a gas leak, she thought. Her husband, Al, was probably upstairs sleeping. After working all day, he’d often come home and take a nap. Once he was asleep, he wasn’t easy to wake up and if he’d been sleeping in a houseful of leaking gas, it would be even harder to rouse him. She yanked open the side door and inhaled against her will – the stench! The air was so thick with gas, a sudden idea could have ignited it.
Knowing that she had to get to him right away, she sprang up the stairs and headed for the bedroom. “Al! Get up!” she cried. The moment he opened his eyes, Gwen started for the door. But Al was still foggy from sleep and didn’t notice the smell of gas in the house, the smell that Gwen was gagging on. He reached over to the bedside table and grabbed a cigarette. Putting it to his lips, he struck the lighter, and his right arm went up in flames. In less than an instant, the bedroom was engulfed in a blue ball. Al lost sight of Gwen, just as he was knocked to the floor.
“Every time I tried to get up, it was like someone was holding me there,” he says.
The flames were as nimble as a gymnast, leaping and flipping from wall to wall. The air was on fire.
Gwen managed to make it to the upstairs hallway, which was a blue flame. All she could think about was something she’d learned in junior high school chemistry class: A blue flame is the hottest point on a Bunsen burner. “It’s funny what you remember,” she says. At the top of the stairs, she, too, was knocked to the floor. She just needed to get down the stairs and through the front door.
Gwen scrambled to get up, but three more times she was knocked back to the floor. Finally, she gave up. Oh my God, I’m going to die, she thought. And then her daughter’s face flashed in front of her, and she cried, “God, I can’t go!” Then, as though she were being lifted, she was able to stand and get down the stairs. She grabbed the door handle and pushed, but the door wouldn’t open. She pushed harder. Nothing. Angrily, she kicked the door with all her strength, but it still didn’t budge. She stood quietly and prayed, “God, please help me.” And then she remembered that the door pulled open. She turned the handle and stumbled out.
The crowd that had gathered around the burning house watched in horror as a woman, who was still smoking from being on fire, staggered down the driveway.
With the sun heading into the western sky, the temperature was dropping quickly. Gwen hadn’t worn a coat that day, so she borrowed a neighbor’s jacket to wear for the bus ride home. The men’s jacket, made of heavy wool, was too big for Gwen’s small frame, but she took it and left, leaving her daughter behind. The ride home seemed long without her daughter sitting next to her, chattering away, although the only intelligible words she knew then were “mama” and “dada.” Later Gwen would thank God Lexis hadn’t been with her.
When Gwen arrived home, she could smell the gas as she was walking up the driveway. There’s a gas leak, she thought. Her husband, Al, was probably upstairs sleeping. After working all day, he’d often come home and take a nap. Once he was asleep, he wasn’t easy to wake up and if he’d been sleeping in a houseful of leaking gas, it would be even harder to rouse him. She yanked open the side door and inhaled against her will – the stench! The air was so thick with gas, a sudden idea could have ignited it.
Knowing that she had to get to him right away, she sprang up the stairs and headed for the bedroom. “Al! Get up!” she cried. The moment he opened his eyes, Gwen started for the door. But Al was still foggy from sleep and didn’t notice the smell of gas in the house, the smell that Gwen was gagging on. He reached over to the bedside table and grabbed a cigarette. Putting it to his lips, he struck the lighter, and his right arm went up in flames. In less than an instant, the bedroom was engulfed in a blue ball. Al lost sight of Gwen, just as he was knocked to the floor.
“Every time I tried to get up, it was like someone was holding me there,” he says.
The flames were as nimble as a gymnast, leaping and flipping from wall to wall. The air was on fire.
Gwen managed to make it to the upstairs hallway, which was a blue flame. All she could think about was something she’d learned in junior high school chemistry class: A blue flame is the hottest point on a Bunsen burner. “It’s funny what you remember,” she says. At the top of the stairs, she, too, was knocked to the floor. She just needed to get down the stairs and through the front door.
Gwen scrambled to get up, but three more times she was knocked back to the floor. Finally, she gave up. Oh my God, I’m going to die, she thought. And then her daughter’s face flashed in front of her, and she cried, “God, I can’t go!” Then, as though she were being lifted, she was able to stand and get down the stairs. She grabbed the door handle and pushed, but the door wouldn’t open. She pushed harder. Nothing. Angrily, she kicked the door with all her strength, but it still didn’t budge. She stood quietly and prayed, “God, please help me.” And then she remembered that the door pulled open. She turned the handle and stumbled out.
The crowd that had gathered around the burning house watched in horror as a woman, who was still smoking from being on fire, staggered down the driveway.
01 January 2009
Are face transplants ethical?
There's some debate as to the ethics of face transplant. Most people who object to face transplant stand by the argument that having a severely disfigured face is not life-threatening. But this is only somewhat correct. Some people who are severely disfigured don’t even leave their homes. They are despondent, suicidal. Some have even killed themselves. One woman I featured in my book wanted so badly to kill herself. What stopped her? Not only was her face terribly disfigured from an accident, but her hands were too. She physically couldn't use them to take her own life. (She, by the way, contacted Cleveland Clinic in 2005 to inquire about face transplant.)
To my mind, the real questions are these: Is quality of life just as important as life? Is any loss less than loss of life frivolous?
When I interviewed Christine Piff, founder of Let’s Face It, an England-based international organization for people with facial differences, she said she wasn’t an advocate for face transplants at first. After she learned more about the procedure, she became an advocate. In Christine's 22 years of working with thousands of people with facial differences, she's seen the devastation and despair that result from being shunned by society. Face transplants could mean a chance at a normal life.
Christine understands this firsthand. When she was 36, she lost her left eye, half her palate and her upper jaw to cancer.
If nothing else, the sensationalism around face transplant has elevated awareness of facial differences and given those who are badly disfigured a measure of hope.
The other problem I have with this debate is that choosing to undergo a procedure as serious as face transplant must be a very personal decision. As Christine says in my book, "Unless you've been involved with someone with facial disfigurement, it's easy to be judgmental." Who are we to say what's good for someone else? We (meaning ordinary citizens) should not pass judgment. Not when we haven't experienced the world from behind their eyes and seen the expressions of the faces looking back at them.
To my mind, the real questions are these: Is quality of life just as important as life? Is any loss less than loss of life frivolous?
When I interviewed Christine Piff, founder of Let’s Face It, an England-based international organization for people with facial differences, she said she wasn’t an advocate for face transplants at first. After she learned more about the procedure, she became an advocate. In Christine's 22 years of working with thousands of people with facial differences, she's seen the devastation and despair that result from being shunned by society. Face transplants could mean a chance at a normal life.
Christine understands this firsthand. When she was 36, she lost her left eye, half her palate and her upper jaw to cancer.
If nothing else, the sensationalism around face transplant has elevated awareness of facial differences and given those who are badly disfigured a measure of hope.
The other problem I have with this debate is that choosing to undergo a procedure as serious as face transplant must be a very personal decision. As Christine says in my book, "Unless you've been involved with someone with facial disfigurement, it's easy to be judgmental." Who are we to say what's good for someone else? We (meaning ordinary citizens) should not pass judgment. Not when we haven't experienced the world from behind their eyes and seen the expressions of the faces looking back at them.
17 December 2008
Cleveland Clinic performs nation's first near-total face transplant
A multidisciplinary team of doctors and surgeons at Cleveland Clinic recently performed the first near-total face transplant in the United States.
In a 22-hour procedure performed within the past two weeks, surgeons transplanted 80 percent of a woman’s face who suffered severe facial trauma – essentially replacing her entire face, except for her upper eyelids, forehead, lower lip and chin. For the privacy and protection of those involved, no information will be released on the patient, the donor or their families.
Read more at http://www.clevelandclinic.org/face.
In a 22-hour procedure performed within the past two weeks, surgeons transplanted 80 percent of a woman’s face who suffered severe facial trauma – essentially replacing her entire face, except for her upper eyelids, forehead, lower lip and chin. For the privacy and protection of those involved, no information will be released on the patient, the donor or their families.
Read more at http://www.clevelandclinic.org/face.
07 December 2008
About the Book
Imagine if we had to wear our imperfections like labels on our faces every day -- in photos, at formal events, job interviews, meeting someone for the first time. What if there were no hiding our imperfections? No doubt we would struggle with feeling self-conscious, and we would wonder how we were being judged by others.
In my book, Eye of the Beholder, I profile people who were born with facial differences, or deformities, or whose faces were changed forever as a result of injury or disease. Most chapters are devoted to a single person's story. Their stories are amazing, and they teach us the definitions of patience and perseverance.
Melissa, who is a senior in college, has undergone forty-two surgeries in nineteen years to try to correct issues affecting her face since birth. After her surgeries, she refused to look at herself in the mirror, because she was unsure who she'd meet.
Matthew was born with Moebius syndrome. Here's how his story begins:
Sometimes it’s just easier to trudge through the streets of Manhattan than try to hail a cab, even in the darkest days of winter. One time, thirteen taxicabs in a row stopped to pick up Matthew, but they took one look at him and sped away. Several times, he already had a grip on the door handle when the driver hit the accelerator. The sudden lurch of the vehicle stung his hand, stung his sensibilities. So he often walks, making his way up the center of the street, ignoring the honking horns and using his cane to help keep himself steady. Because the street is better lighted than the sidewalks – street lamps are designed, after all, to assist drivers, not pedestrians – he feels safer walking in the street. He doesn’t have night or peripheral vision, so the headlights from oncoming traffic help to light his way. During the winter months, he bundles up in his down overcoat, topped off by his Russian-style fur hat. From behind, negotiating the busy streets of New York City, he looks like Truman Capote. From the front, he is Matthew Joffe.
The book also includes chapters on the history of facial plastic surgery, facial prostheses and future advances such as tissue engineering and face transplant.
When I first began my research for the book, I realized that little awareness exists for people with facial differences. Even after all the attention surrounding Isabelle Dinoire, the world's first recipient of a partial face transplant, the topic of facial differences slipped back into darkness. I'm trying to shed some light.
Eye of the Beholder is published by Kaplan Publishing and is available now from Amazon.com or wherever books are sold. A portion of my proceeds will benefit organizations that help support people with facial differences.
In my book, Eye of the Beholder, I profile people who were born with facial differences, or deformities, or whose faces were changed forever as a result of injury or disease. Most chapters are devoted to a single person's story. Their stories are amazing, and they teach us the definitions of patience and perseverance.
Melissa, who is a senior in college, has undergone forty-two surgeries in nineteen years to try to correct issues affecting her face since birth. After her surgeries, she refused to look at herself in the mirror, because she was unsure who she'd meet.
Matthew was born with Moebius syndrome. Here's how his story begins:
Sometimes it’s just easier to trudge through the streets of Manhattan than try to hail a cab, even in the darkest days of winter. One time, thirteen taxicabs in a row stopped to pick up Matthew, but they took one look at him and sped away. Several times, he already had a grip on the door handle when the driver hit the accelerator. The sudden lurch of the vehicle stung his hand, stung his sensibilities. So he often walks, making his way up the center of the street, ignoring the honking horns and using his cane to help keep himself steady. Because the street is better lighted than the sidewalks – street lamps are designed, after all, to assist drivers, not pedestrians – he feels safer walking in the street. He doesn’t have night or peripheral vision, so the headlights from oncoming traffic help to light his way. During the winter months, he bundles up in his down overcoat, topped off by his Russian-style fur hat. From behind, negotiating the busy streets of New York City, he looks like Truman Capote. From the front, he is Matthew Joffe.
The book also includes chapters on the history of facial plastic surgery, facial prostheses and future advances such as tissue engineering and face transplant.
When I first began my research for the book, I realized that little awareness exists for people with facial differences. Even after all the attention surrounding Isabelle Dinoire, the world's first recipient of a partial face transplant, the topic of facial differences slipped back into darkness. I'm trying to shed some light.
Eye of the Beholder is published by Kaplan Publishing and is available now from Amazon.com or wherever books are sold. A portion of my proceeds will benefit organizations that help support people with facial differences.
13 February 2007
Media
"Communicating clearly...with sensitivity," Custom Publishing Review, vol. 3, no. 4, 2007
"Writing about heroes with facial deformities," Cleveland Jewish News, Apr. 27, 2007
"Seeing heroes in a different light," Notre Dame Today, Spring/Summer 2007
Michael Dresser Radio Show, Apr. 13, 2007
Oprah & Friends Radio Show, XM radio, Dr. Oz interview with Laura Greenwald, Feb. 2007
"Cortlandt man featured in new book on facial restoration," The Journal News (Westchester Cty, NY), Feb. 11, 2007
"Communicating clearly...with sensitivity," Custom Publishing Review, vol. 3, no. 4, 2007
"Writing about heroes with facial deformities," Cleveland Jewish News, Apr. 27, 2007
"Seeing heroes in a different light," Notre Dame Today, Spring/Summer 2007
Michael Dresser Radio Show, Apr. 13, 2007
Oprah & Friends Radio Show, XM radio, Dr. Oz interview with Laura Greenwald, Feb. 2007
"Cortlandt man featured in new book on facial restoration," The Journal News (Westchester Cty, NY), Feb. 11, 2007
"Heroes with a Thousand Faces," Geauga Maple Leaf, Thurs., Feb. 8, 2007
"Facing down deformities," North County News (NY's Northern Suburbs), Jan. 24-30, 2007
"Facing forward; living life," The News-Herald, Jan. 18, 2007
Presentations
Moebius Syndrome Annual Meeting, New Jersey, July 2008
Basal Cell Carcinoma Nevus Syndrome Annual Retreat, Punderson Manor Resort, Newbury, Ohio, July 2007
Book Signings
Mon., Apr. 23, 7-9 p.m., Joseph-Beth Booksellers (Legacy Village), Lyndhurst, Ohio
Thurs., Feb. 22, 7-9 p.m., Barnes & Noble bookstore, Woodmere, Ohio
Sat., Feb. 10, 1-3 p.m., Barnes & Noble bookstore, Mentor, Ohio
Moebius Syndrome Annual Meeting, New Jersey, July 2008
Basal Cell Carcinoma Nevus Syndrome Annual Retreat, Punderson Manor Resort, Newbury, Ohio, July 2007
Book Signings
Mon., Apr. 23, 7-9 p.m., Joseph-Beth Booksellers (Legacy Village), Lyndhurst, Ohio
Thurs., Feb. 22, 7-9 p.m., Barnes & Noble bookstore, Woodmere, Ohio
Sat., Feb. 10, 1-3 p.m., Barnes & Noble bookstore, Mentor, Ohio
29 December 2006
07 December 2006
"Inspirational!! Laura Greenwald's exceptional work motivates readers to explore their own challenges, fears, hopes, and dreams in the face of a life-altering condition. I highly recommend this collection of heroic tales of people overcoming facial and psychological wounds ... it can inspire each of us and is a must-read for the entire network of physicians, counselors, confidants, caregivers, families, and friends of those inovlved in the ongoing journey of living with facial differences." --Kristi Schmitt Burr, Executive Director, BCCNS Life Support Network
"The stories in this book are truly compelling. I believe many people who face similar issues will find comfort in knowing they are not alone." --Jeffrey A. Fearon, M.D., Director, the Craniofacial Center, Dallas
"The stories in this book are truly compelling. I believe many people who face similar issues will find comfort in knowing they are not alone." --Jeffrey A. Fearon, M.D., Director, the Craniofacial Center, Dallas
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