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Seattle Washington USA

 

DALE O'REILLEY: SHE HAS A WAY WITH WORDS
by MARKREIMAN

 

picture2Oct. 1991, Dale's first outing in a wheelchair and the first time daughter Heather (3rd from L) sees her mother in a wheelchair.

Somewhere on my twisting journeys through the internet in the last year I crossed paths with a fascinating woman by the name of Dale O'Reilley, a former business writer from Medford, N.J. who now contributes articles to the San Francisco Examiner daily newspaper. She is insightful, articulate, and very inspiring.

O'Reilley grew up in New England where her family has lived since the 1600's. She majored in journalism and graduated Phi Beta Kappa from the University of New Hampshire in 1968, marrying her husband, Jim, the same year. In 1989 Dale became the first female editor-in-chief of Focus, Philadelphia's weekly business magazine, and a year later began her own consulting firm. Then in 1991 came the diagnosis of ALS, or Lou Gehrig's Disease. By 1993, less than two years later, she was dependent on a ventilator to breathe.

picture2Dale and Jim at the New Jersey seashore, July 1996

Recently Dale sent me a note saying that best-selling author, Scott Turow, was about to release a new book, Personal Injuries, in which one of the main characters was a woman who has ALS.She briefly explained that she had been asked Turow to be his "consultant", giving him a first-hand perspective for his book about what it was like to be a woman living with ALS.

I asked Dale if she would not only tell Incredible People about her work with Turow but also answer some questions about her life and her remarkable outlook. All the more remarkable when you begin to understand the labor intensive process of her writing. You see, O'Reilley not only relies on a ventilator to breath, she communicates and writes by sending signals to her laptop through an infrared beam.

Some years ago she directed the light beam by using her most reliable physical movement, one toe. As the disease progressed, she activated the device with a finger movement. When that was no longer possible, she typed with her right eyebrow - until that muscle stopped working. Now she wears a headset not unlike a phone operator which is equipped with a thin, bendable wand pointing the beam of light and activated by twitching a muscle at the right corner of her mouth.

A twitch activates an onscreen scanner and a window appears which she can change from an alphabet, to numbers, to computer functions. To type a letter, she first selects the alphabet window, then the line which contains the letter she wants. By moving the cursor across the screen to the individual letter and then selecting it, the text as she writes, appears on the screen.

picture2O'Reilley clowning with the Philly Phanatic at a Christmas Party, Dec. '98. I emailed Dale ten interview questions and she quickly replied that she was under a deadline for two other articles she was currently working on. Still, twelve days later I received her answers. Here is our interview, a personal look at a remarkable human being beginning with her account of her collaboration with Scott Turow.

 

IP Mag: You were a consultant to the best-selling author, Scott Turow, in the writing of his latest book, Personal Injuries. Would you tell us about that? O'Reilley: His daughter posted a note in the on-line ALS Digest saying that her father was writing a novel with a female character with ALS and had some questions. I had to respond. I was a relatively young (for ALS) woman, married, attractive and successful professional woman. I had been where his character was going. In return, he had exactly what I was looking for - a voice that would reach millions and let them know the devastation of this disease, even for someone who has all the advantages. Plus, the character was a woman.

The public has been made increasingly aware of ALS but virtually everyone we hear about in the news are men. If Turow was going to show the world, finally, that women get this disease too, maybe he also would show that it is possible, with mechanical ventilation, to live with ALS, at least for awhile, as I do.

In early October my touchingly autographed copy of Personal Injuries arrived. I raced through the book to the chagrin of my nurses, who had to turn the pages. Did I see myself in the character of Rainey Feaver? No, we're very different people. But I see my ALS in her - the anger, pain, isolation from others, the loss of privacy and control, feelings of helplessness coupled with a determination to retain the right to decide the time and manner of my death. I also see my husband's love.

IP Mag: ALS is a disease that progressively weakens and destroys muscles but the order in which muscles are affected and the how fast the illness progresses can be very different from person to person. When were you diagnosed, what initial symptoms did you notice, and in what manner has ALS progressed in your case?

O'Reilley: I noticed symptoms in 89, ignored til 90, took a year, seven specialists, major neck surgery before diagnosis. Started in fingers, then feet, voice and finally, swallowing and breathing.

IP Mag: As ALS progresses in a person they begin to lose the ability to do many of their favorite interests. What skills, interests, or activities did you especially enjoy before your diagnosis that you can't do now?

O'Reilley: Swimming. I loved the water. Traveling, walking, dancing and making love with my husband. Talking, eating, cooking...gardening, singing, laughing out loud.

IP Mag: What brings you joy and fulfillment now that your physical abilities have changed significantly?

O'Reilley: I've become more computer savvy, a much better listener, a more personal writer. I watch more movies. I have wonderful memories. I really feel fulfilled when I touch people with my writings, give needed information or advice based on my experience, or choose the perfect gift. I'm famous for my gifts.

IP Mag: Did you have a "hero", a memorable role model, or inspiring person in your life that has made a special impact on your life?

O'Reilley: Eleanor Roosevelt and Mr. Towne, my fifth grade teacher who was going blind. Mrs. Roosevelt overcame terrible shyness and emotional problems to become a great force for peace and civil rights. My teacher challenged me with great gentleness.

IP Mag: What gets you out of bed in the morning? What do you live for now?

O'Reilley: I always have things to do, so many friend to write and encourage, articles to write, people to inform, chains to yank. Each day has its own beauty to appreciate. I have a beautiful view from my room. Sometimes I'm angry, frustrated or depressed but there's always something to do. My husband is wonderful and I don't want to leave him alone. And I want to watch my granddaughters grow.

IP Mag: In your opinion, why are some people are crushed by adversity while others find ways to adapt and in some ways even thrive? How or why have you been able to stay this focused and positive in the face of such obvious challenge?

O'Reilley: The intellect is key. To be able to live via just the brain and heart, not the outer shell, the body. I think it's easier if you weren't an intensely physical person before being disabled. I want to make the process of this disease easier for the next person by sharing what I've learned. That way my trials become a learning process.

IP Mag: How do you personally respond to yourself or to others regarding the "It's not fair!" and "Why me?" issues of life?

O'Reilley: A waste of time. Worse things have happened to better people than me.

IP Mag: How would you like to be remembered 100 years from now? O'Reilley: As someone who told the truth, without prejudice. Someone who loved and was loved.

IP Mag: Do you have any pointers or advice that, based on your life journey to this point, you would like others to be able to benefit from? O'Reilley: Don't take it all too seriously. Tell a joke. Laugh. And my favorite Dutch proverb: "I cannot," said the Fool. And, therefore, he could not.

 

Editor's Note: Dale sent me a short email on Sunday after Thanksgiving. She wrote, "Our last company left this afternoon. That's the big thing I try to get people with ALS to understand: life on a vent is not some terrible ending of all joy. We still give and go to parties, I write, buy all the Christmas presents, love and am loved back. Can you believe it's almost December? Life flies when you live it."

 

**ALS is a progressive degenerative disease of the motor neurons, the nerves that provide all voluntary muscle movements and muscle power. With all voluntary muscle action affected, patients in the later stages of the disease become totally paralyzed. The senses are not impaired and, for the vast majority of people with ALS (pALS), their mind and thoughts are not impaired.

There is no known cure.

 

For more information about ALS or how you can help, contact the ALS Association click here: www.alsa.org/

mark.gif (4144 bytes)Mark Reiman is the editor-in-chief of Incredible People Magazine. You can email him at mark@IncrediblePeople.com

 

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