ALS paralyzed her body, but not her mind
Courage is a pair of brown eyes.
They belong to Michelle Melland, a 50-year-old wife and mom 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. It was 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 it 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 that can still arch, and her lips that strain to smile — are the only voluntary muscles in her body that are not frozen.
She cannot walk. She cannot talk. A 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, she cannot move a toe or a finger. She cannot move her head from side to side.
Instead, 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’d be unable to breathe without it.
But Michelle Melland can read. The disease has no effect on her sharp mind.
Using computerized eye-gaze technology that allows her to type on a tablet-like keyboard by just staring at letters, Melland also can write. And she’s been writing a lot — having read 44 books in the last 44 weeks. For each, she has written a review, typed out over hours using only her eyes and posted to a blog, bookthoughtsfrombed.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, reviewing books both old and new, with her only caveat being that she won’t review anything too “heavy or depressing” because of her illness.
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.
During a recent visit to their home, Michelle Melland pulled up her latest read on her computer screen, Rachel Joyce’s “The Unlikely Pilgrimage of Harold Fry.” Just days before, she 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, the director of the communications for the Mid-America Chapter of the ALS Association, said that Melland embodies the kind of fortitude and resilience that often will arise 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.”
By the time Michelle and Paul met in graduate school at the University of Kansas, each earning a master’s degree in business administration, she had already lived a dynamic life, growing up as an Army brat with her father stationed at Fort Leavenworth.
At 6 feet tall, she became a triple-threat high school athlete in volleyball, basketball and track and won offers of college scholarships. Instead, she entered the ROTC program at Notre Dame, and rose to the rank of captain in the Army. She would later use her talent in logistics to excel at a trucking company, at H&R Block and later at the USA800 call center company. She became the prime breadwinner while Paul Melland stayed home to care for their girls.
Sydney and Hayley are 14 now, set to enter high school next year, but they were 8 when Michelle Melland was diagnosed in August 2011. The symptoms seemed like nothing at first. Melland had been playing volleyball. Her foot turned numb.
“When I was first diagnosed, I was angry and stunned,” she wrote in response to questions sent by email. “I was angry that I was going to be robbed of the experience of raising my then 8-year-old daughters and equally angry that they were being robbed of their mother. I was worried about what this would do to my family financially because I was the breadwinner. I was stunned because I was an otherwise healthy and active 45-year-old woman.
“And now I had been handed a death sentence, and on the slow journey to that death I would progressively lose the ability to move, eat, speak and breathe. For someone who was always very capable and independent, an ALS diagnosis holds its own special horror.”
For Melland, who was raised Catholic and keeps a crucifix hanging on the wall behind her right shoulder, the illness has continuously tested her faith. Yet soon after being diagnosed, “I noticed how often the phrase ‘be not afraid’ appears in Scripture,” she said. “I’ve really taken that phrase to heart.”
Although she said she never ascribed to a single or overarching “intentional life philosophy,” she said she has always, even now, tended to be positive about life and does have a guiding belief.
“I always believed,” she typed, “in controlling what you can — your education, your job performance, the quality of your relationships, your attitude, etc. — and coming to terms with things you can’t control, like a totally random terminal illness.
“I couldn’t change the fact that I had ALS,” she continued, “but I could control how I reacted to that reality.”
Anger, she surmised, would be no help. The disease progressed quickly. She could have applied for disability, but didn’t.
“She continued to work for another two years,” Paul Melland recalled. “She was not able to move her arms. She could barely breathe. At USA800, she would work when she couldn’t move her arms or legs.”
Because she could still talk, speech-to-text software allowed her to do her job for a while.
“It was partly a pride thing and partly an ego thing — ‘I’m not going to let ALS kick my ass,’ ” her husband said.
Two and a half years after her diagnosis, Michelle Melland was given a tracheotomy and a ventilator. She needed 24-hour care. Her husband got a job outside the house, hired daily and nightly caretakers, and cobbled together ways to pay for it, including continuing financial help from relatives.
A curious and still little understood fact about ALS is that military veterans, whether they served at home or abroad, tend to suffer the disease at twice the rate of the civilian population.
With Melland at home, the Department of Veterans Affairs ponied up funds for her hospital bed, wheelchair, a specialized van and the computer with eye-gaze software that allows her to read, write and communicate.
Friends from St. Peter’s Parish, where Hayley and Sydney go to school, pitched in and transformed the family’s attached garage into a bright and comfortable room for Melland on the first floor.
The family, Paul Melland said, never talks about the future with sadness or foreboding.
“I go on with my life,” he said, “as if Michelle is going to be here another 10 years. There is no doom and gloom.”
In beginning her weekly books blog last spring, Michelle Melland said her goal certainly wasn’t to set some kind of example. She was reading a lot of books. Why not write about them?
“I set it up myself because I could,” she said by email. “I still like to do things for myself when I can.”
Besides writing about books, she has also started writing freelance pieces on USA800’s website.
If there is a lesson for others, even her own family, in the way she’s dealing with ALS, that’s all for the better.
“She has shown me how strong she is,” said Sydney, whom her dad described as their paintball-playing, costume-designing introvert.
Hayley, an extroverted athlete, said: “I think that watching my mom go through ALS has taught me you can’t sweat the small things in life. I catch myself complaining about little things when my mom is basically paralyzed.”
Melland’s eyes moved across her screen.
“I hope,” the synthesized voice said, “others can see that there are ways to still lead a fulfilling life even when experiencing great adversity.”
As for her future goals:
“In terms of writing, I’d like to find a few more freelance clients,” Melland said in an email. “Additionally, Paul and I occasionally toss around the idea of collaborating on a mystery novel. In my personal life, my daughters will be starting high school in the fall, so that will be a priority. I also want to help Paul find more joy in his own life.
“This has been really hard on him.”