Oct. 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.
Dale and Jim at the New Jersey seashore,
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
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.
O'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
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 Reiman is the editor-in-chief of Incredible People Magazine. You
can email him at mark@IncrediblePeople.com