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Thread: Mother, daughter live through message of hope

  1. #1
    Senior Member Max's Avatar
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    Jul 2001
    Montreal,Province of Quebec, CANADA

    Mother, daughter live through message of hope

    Mother, daughter live through message of hope

    By Kim Painter, Special for USA TODAY

    Excerpts in 'Miracles Happen'

    Jean Ellison describes what it was like for Brooke to go through Harvard. And Brooke describes what it was like for Jean.


    "Try to imagine being in a chair with your feet bound and your hands tied behind your back. Then imagine being on a machine that gives you thirteen breaths per minute and doesn't allow you to sigh or take a deep breath when you feel you need one. Then imagine never being able to use the bathroom or the shower when you want to, to brush your teeth, feed yourself, scratch an itch, or wipe your eyes if you need to cry. Imagine never having any privacy, not being able to be physically intimate, or never being able to hug someone when you really want to. Compound that with sleepless nights when you are unable to breathe, equipment failures that threaten your life, and wheelchair malfunctions that leave you stranded in bed. Then put yourself in one of the most rigorous academic settings in the world "


    "Imagine working at something twenty-four hours a day, seven days a week, often without sleep. Then imagine taking care of yourself and then all of the personal needs of someone else - bathing them, feeding them, brushing their teeth, combing their hair, scratching an itch if they have one, and wiping their eyes and nose if they need it. Then imagine doing all that when you're sick and when you feel that you can't even lift yourself out of a chair. Imagine not having any privacy, not being able to take a break or walk away when you feel you need to, and not seeing your family and the man you love for long periods of time. Imagine dealing with the heartbreak of watching someone you love struggle and cope with the indignities of life. Then imagine doing it with a smile..."

    STONY BROOK, N.Y. - After Brooke Ellison became paralyzed at age 11, her parents remodeled their home. Along with widened doorways and wheelchair ramps, they put in broad windows, skylights and a huge deck. They wanted their daughter always to see the sun, even if she couldn't see much of the world.

    Today, Brooke is 23 and lives at home. But she is far from homebound. She gets out to Mets games. She goes to the mall. And, every chance she gets, she wheels herself in front of an audience - of second-graders or troubled teens or politicians, whoever will listen - and tells her story.

    "I offer the message of hope," says Brooke, who lost the ability to move or feel from the neck down when she was hit by a car on the first day of seventh grade. "Life brings challenges and adversity, but we have the ability to overcome them. ... Each day brings an opportunity, and there is something to live for each day."

    That's also the message of Miracles Happen: One Mother, One Daughter, One Journey (Hyperion, $22.95), the new book Brooke has written with her mother, Jean. It tells how young Brooke emerged from six weeks in intensive care and eight months in a rehabilitation hospital determined to get on with life. With considerable help from Jean - who attended junior high, then high school and, finally, Harvard University as Brooke's caretaker - she has lived a remarkable 11 years since her injury.

    She hasn't seen the whole world. But she's working on it. And her mother is with her, almost every step of the way.

    "The job of being with Brooke is the most important I could have, and it's a privilege," says Jean, 50, who abandoned a brand-new teaching career when her daughter was injured. USA TODAY has followed the Ellisons since 1996, when Brooke was named to the paper's All-USA academic team. She went on to earn an honors degree from Harvard. She has worked hard for every accomplishment. But she says she could not have made it without a few miracles - especially the miraculous support of her parents, two siblings, friends and teachers.

    The first miracle for Brooke was her very survival.

    The young ballet dancer and cellist who went off to school on Sept. 4, 1990, ended that day with a fractured skull, a damaged spinal cord and so little apparent brain activity that doctors predicted her death. Even if she did awaken from her coma, they warned, "there was very little likelihood that she would have any cognitive function," Jean writes in the book.

    Then, after 36 hours, Jean writes: "Brooke opened her eyes. She couldn't speak, but her expression told me what I needed to know. ... Her eyes weren't blank or vacant; they were full of questions."

    Still, Brooke's spinal cord injury was severe. Despite early hopes, she was not able to breathe on her own again. To this day, her every breath is supplied by a portable respirator attached to a tube surgically implanted in her throat. She carries the respirator on the back of her motorized wheelchair and drives the chair with a device on the roof of her mouth. She is able to speak normally, thanks to another device that directs air from the respirator over her vocal cords. And she is able to write with a voice-activated computer.

    Brooke's injury is very similar to that of actor Christopher Reeve. She has met him several times and developed a friendship. "He's great," she says. "We have a lot in common."

    One of the things they share is a desire to help others in their situation. Like Reeve, Brooke sits on the board of the National Organization on Disability, based in Washington, D.C. The group works to increase access and opportunity for disabled people.

    Brooke's personal crusade right now is for increased access to airplanes. Planes do not have wheelchair sections, so chair users must somehow get into regular airline seats.

    "It's like asking someone to check their arms and legs," Brooke says.

    Once, when Brooke was invited to accept an award in Chicago, the Ellisons took her out to LaGuardia Airport and tested the procedure for getting her into a seat - a series of steps that required several people to lift her out of her customized chair and into a bucket-like cart and then into an airplane seat. During the transfer, she had to be taken off her respirator and given breaths through a hand-pumped bellows. Finally she was propped in a seat - and began to slide miserably to the floor.

    "In the 10 years I'd been in this situation, I had never felt so disabled," Brooke says.

    "It was a fiasco," Jean says.

    And so Brooke had to accept her award by satellite hookup. More recently, she missed the wedding of two dear friends in Hawaii.

    Her inability to fly also has limited how freely she can pursue her new passion - public speaking.

    Since college graduation in June 2000, Brooke has appeared before more than 20 groups, telling her story and spreading a message of hope, not only for people with disabilities but for people who face all sorts of challenges.

    "I don't want to celebrate myself overly but I think people can relate to me because of the challenges I've faced."

    She remembers a speech at a school for teenage girls with emotional problems. "A lot of them were depressed or suicidal, and I felt that hearing my story helped them," she says. Knowing what she had survived, she says, "may have made it easier for them to get through the day."

    Brooke's college friend Jonathan Lim says Brooke "wants to touch people. She's not just saying the words." Says his wife, Jill: "Brooke has lost the ability to move her body, but she has the ability to move people." It was the Lims' Hawaiian wedding that Brooke missed.

    Jean says Brooke spends almost every night on the phone with friends, many of whom have moved on to jobs and graduate school. Now that the book is finished, Brooke has applied to graduate programs, including some at Harvard, that would build on her undergraduate work in psychology and biology. Her mom has agreed to go away to school with her again, if need be, and her father, Edward, is supportive, too. But Brooke says the thought of separating her parents again "is weighing very heavily on my mind."

    Jean shrugs when asked how she can face leaving her comfortable home and husband again for up to seven years - depending on how far Brooke pursues her studies. "It's like having another baby," she says with a laugh. "After a while you forget the pain."

    Eventually, Brooke says, she might like to counsel troubled teens. Or she may concentrate on writing. She and her dad fantasize about writing a novel together.

    And, of course, Brooke fantasizes about living independently, like most people her age. But, for the foreseeable future, that can only be a fantasy. Despite all of her accomplishments, she cannot turn the pages of her books, much less take a bite of food unassisted or attend to her own medical needs. She must be within constant earshot of someone who knows how to care for her - which for all practical purposes usually means her mother. The family's insurer pays for very little nursing care.

    Brooke acknowledges that "there are days when I get down." A particular source of sadness, she says, is a lack of romance in her life. But, she says, "I always remain hopeful that it will happen."

    Brooke also remains hopeful that a scientific miracle will allow her to move and feel her body again someday. "I believe that it probably won't be next year or the year after, but it will happen."

    In the meantime, she says, "I'm going to live my life. ... I'm going to give it as much as I can for as long as I can. As long as the situation goes on, I'm going to face it."

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    © Copyright 2002 USA TODAY, a division of Gannett Co. Inc.

  2. #2

    Great post Max

    People like Brooke and her family inspire me to keep fighting as well as to keep helping.

    We've got to beat this!

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