Like most people, Marjorie Spoto, 37, of Key West, Fla., doesn’t have
ALS,
nor do any of her siblings or children.
Not yet, anyway, or at least not as far as they know.
But unlike most people, Spoto has two cases of ALS in her family tree. Her
maternal grandfather passed away in 1973, and her mother died of complications
from ALS in 1993.
Spoto, who works in sales and marketing for Key West Online, began to write
about her family’s experience and her own feelings about ALS.
"It’s on my mind a lot," she explains. "Whenever I fall, or
bump my knee or something, it’s like, ‘Uh-oh, is that the start of ALS?’
So the logical thing for me to do was to write about our story."
The result is Spoto’s first novel,
When It Rains, a romantic
drama that tells the story of how three sisters cope with the death of their
mother from ALS and their fears that they, too, will develop the disease. The
book was self-published in 1996. For more information, see www.whenitrains.com.
Spoto has donated a portion of the book sales to support the Kessenich Family
MDA/ALS Center at the University of Miami and helped with other MDA fund-raising
activities.
And there’s more to come.
Spoto has written a screenplay of her novel and hopes to see it made into a
motion picture.
"I wanted to direct it myself, but was told [by potential investors]
that I needed a director with film experience," she explains. "When a
friend of a friend happened to tell me that he went to film school with Charlie
Matthau, I called him right away."
Charles Matthau, whose directing credits include "Mrs. Lambert Remembers
Love," "The Marriage Fool" and "The Grass Harp" — the
latter two films starring his father, the late Walter Matthau — read the
screenplay and agreed to meet with Spoto to discuss the project.
"I told him I was going to be in L.A. anyway," she laughs.
"But the truth is that I made a special trip just to see him. That’s how
he became one of the first people to sign on with me."
Spoto is currently working to line up investors (she needs to raise $600,000
to begin production), and hopes pre-production of the film can begin soon. It
hasn’t been easy: At one point she was close to her goal, only to see the
Sept. 11 terrorist attacks cause key investors to back out.
"I’ve been working on this project for seven years now," Spoto
says defiantly. "I’m not giving up — I’m a fighter."
To Test or Not to Test
When doctors learned that Spoto’s mother wasn’t the first in her family
to be affected by ALS, they recommended that Spoto and her four siblings seek genetic
testing for the disease.
But for Spoto and her family, the real question was what to make of the test
results.
"We just wondered what difference the test would really make,"
Spoto explains. "We talked about it and decided there are no guarantees.
And really, who does get a guarantee in this world, anyway?"
So they’ve decided against testing for now.
Meanwhile, this mother of two continues to write and to line up investors for
the film. And while she continues her personal fight against ALS, she refuses to
let its shadow slow her down.
"That’s the moral of my book," Spoto asserts. "You have to
learn to live life every day, as if it were your last."
When It Rains... was inspired from Marjorie Spoto's true-life experiences.
