ALS patient cranking out book reviews with her eyes
KANSAS CITY, Mo. — Courage is a pair of brown eyes.
They belong to Michelle Melland, a 50-year-old wife and mother of twin teenage girls who, since she began typing away last spring as a book reviewer, is all but certain to rank as special among writers.
Six years ago, Melland’s eyes flashed with anger as she sat, stunned, to hear a Kansas City doctor deliver a diagnosis that typically is a two- to five-year death sentence: amyotrophic lateral sclerosis, the incurable and progressively paralyzing disease known as ALS or Lou Gehrig’s disease.
Its cause is unknown, popping up generally in one’s early 50s. Some 30,000 people in the United States have it. For 90 percent of patients, the disorder seems to come, as it did for Melland, out of nowhere, with no genetic link.
Now her eyes — and, to a lesser degree, her eyebrows (which can still arch) and her lips (which strain to smile) — are the only voluntary muscles in her body that aren’t frozen.
She cannot walk. She cannot talk.
The former U.S. Army captain and lifelong athlete whose high-jump record as the former Michelle Bradley
still stands at Leavenworth’s Immaculata High School can no longer move a toe or a finger. Nor can she move her head from side to side.
Inside her Brookside home, Melland lies on her back, arms straight at her sides, her head propped on a pillow on her hospital bed. The whoosh and sigh of a ventilator feeds oxygen through the tube in her trachea. She would be unable to breathe without it.
The disease that has devastated her body has no effect on her sharp mind. Melland can read — and, using computerized eyegaze technology that allows her to type on a tablet-like keyboard by just staring at letters, she can write, too.
And she has been writing a lot — having read 44 books in 44 weeks. For each, she has written a review, typed out over hours using only her eyes and posted to a blog, (bookthoughts frombed.com) that Melland designed and created herself.
“This blog is what happens when a woman who is productive by nature gets confined to a hospital bed,” she wrote in the About section of her site, which mentions her illness. “I’m basically paralyzed and spend most of my time in bed. ... Thanks to technology, I’m able to access and control online e-readers, and thanks to Amazon and local libraries, I have limitless numbers of books to choose from. I’m optimistically looking at this phase of life as ‘retirement’ and aren’t I lucky that I get to spend my retirement reading in bed?”
She adds, sarcastically, “Yeah, it’s a stretch ...”
Melland’s productivity, though, is no joke. She reviews books both old and new, with her only caveat being that she won’t review anything too “heavy or depressing” because of her illness.
Her husband, Paul, who works in information technology at the University of Kansas Hospital, said she has always been that way, even with movies.
“No dark foreign films,” he said.
At the couple's home recently, Michelle Melland pulled up her latest read on her computer screen, “The Unlikely Pilgrimage of Harold Fry” by Rachel Joyce.
Just days before, she had finished reading and reviewing the novel “The Last Days of Night,” by Graham Moore. Before that: Tim Ferriss’ “Tools of Titans: The Tactics, Routines and Habits of Billionaires, Icons and World-Class Performers,” Anna Quindlen’s “Still Life With Bread Crumbs” and Amor Towles’ “A Gentleman in Moscow.”
Sherrie Hanneman, director of communications for the Mid-America Chapter of the ALS Association, said that Melland embodies the fortitude and resilience that often surfaces in individuals who, at first devastated by an ALS diagnosis, later find themselves determined to live as best they can, in whatever time they have, with a sense of purpose.
“I think Michelle is just such a great example of that,” Hanneman said. “She is not defined by a disease. She is defining herself and using her own words to define herself.”
When typed out and played on her computer, those words can be given a Siri- like synthesized voice.
“It’s not easy,” Melland said recently of her illness, using her gaze to type out words that the computer then reads aloud with a robotic tone. “And I don’t want to downplay that. But it’s important to decide how you’re going to react to this disease and not let it rob you of the joy you can experience during the balance of your life.”
Her husband stood near the entrance of her room, a sign from the football team of her alma mater, the University of Notre Dame, tacked above the door, “Play like a Champion today.”
He would later say that whatever independent grit his wife has shown in the face of her illness has long been part of her marrow.
“This is the way she was before she was ill,” said Paul Melland, 51. “This has not transformed her.”
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