Living life while dying
By James Fuller
Marlene Humay rose from her seat and slowly walked to the stage. The music cued up. Linda Ronstadt belted out a tale of a mother’s love. Humay embraced her youngest son, Joe, and started to dance.
The wedding party wept. Even the caterers. The tears were flavored with the bliss of a perfect moment and the sorrow of impending pain, like a last hug before a loved one leaves on a long trip.
Soon Humay’s legs would betray her. Her arms would hang limp. Her voice would vanish. Every swallow would carry the threat of choking.
She knew this would be her last dance. She was dying in her son’s arms even in that moment.
More than a year later she’s still dying, but not without hope, not so much for herself, but those who come after her.
Humay, a Wheaton resident and retired teacher, has amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease. It attacks nerve cells in the brain, resulting in a gradual paralysis of the entire body, including the lungs. Most people die in two to five years.
Humay was diagnosed two years ago.
Losing the horserace
The Humays have a long baseball tradition. Marlene Humay’s husband, Jim, played professionally and coached for many years. Their son Joe played at Creighton University.
It was on a trip to watch her son play that the signs of the disease first hinted at the future.
At a postgame dinner, Humay’s speech slurred slightly. She thought it was from dental work.
Humay went back to the dentist. After she left the office, but before she got back home, the dentist called her husband.
“You know, this is not anything related to dental work,” Jim Humay recalled the dentist saying. He recommended a trip to the doctor.
That first visit suggested a small stroke. Tests would be necessary – a lot of tests.
“We went through everything imaginable,” Jim Humay said.
There is no direct test for Marlene Humay’s ailment. Six weeks of eliminating everything else left only ALS. The wife and mother of baseball players now had a disease named after a baseball legend.
“We weren’t sure what this exactly meant,” Jim Humay said. “You hear about multiple sclerosis and Parkinson’s, and somewhere out there was Lou Gehrig’s disease.”
A second opinion confirmed the diagnosis. That’s when the couple got their first glimpse of what was to come.
“Imagine there’s a horserace,” the doctor told them. “The horses all start out, and you get to the first turn. You take a picture, and somewhere in there is you. Your position will never improve in the race. As the race continues, you’ll never stay even or catch up. You’ll continually fall behind.”
Each day Humay slowly lost the ability to do something she’d done all her life.
Her speech went first. Three months after the diagnosis, she was using an electronic device to communicate. She could still write and walk, even exercise.
“I thought, ‘This isn’t so bad,'” her husband said. “It was a big adjustment, but it was something that was OK. We could get by like this.”
By March 2003, Humay was still walking about a mile a day.
“Then one day, all of a sudden, Marlene fell,” Jim Humay said.
By the end of March, she was using a cane. By the end of April, she was using a walker. Her son’s wedding was three months away. Humay was determined to share a mother-son dance at the wedding.
She made it.
“That was probably the most determined I’d seen her in awhile to walk on her own,” Joe Humay said. “It was an amazing moment for us to have that one last dance. It’s still hard for me to watch the DVD.”
By last September, one year after her diagnosis, Marlene needed a chair-lift at home to use the stairs. Two months later, she was in a wheelchair.
“Arms and hands still worked a little,” Humay recalled.
But her legs were useless. She now needed help getting out of bed and getting dressed.
Soon after, the Humays found they could no longer eat out. It was too hard for Marlene Humay to chew and swallow.
“Until you can’t do something, you don’t recognize what you were able to do,” her son said.
Just before Mother’s Day, doctors inserted a feeding tube.
Now all Humay has is limited head movement. She can scribble notes if someone puts a pen between her fingers. And she can laugh. It’s not the belly laugh of many women like her in their 60s. It’s more internal, like laughing with her lungs.
Silent laughter, tears
There’s no shortage of laughter.
Friends and family visit Humay often. A neighbor sends her get well cards twice a week. Others bring tapioca pudding, her favorite.
There’s video night with a group of gal pals known as “Mar’s Angels.” Friends even set up a potted-plant garden for her because it’s harder for her to get outside now.
Those are the things Humay says make each day something she cherishes.
“I’m lucky to have good friends,” she writes.
One of those is Sue Lessing. The two teachers became close as they both prepared to retire from Wiesbrook School in Wheaton.
“I don’t know why this friendship developed, but it did, and it’s a special one,” Lessing said.
That’s played out in some adventures the two have had since Humay’s diagnosis. There was the time the two went out for lunch on Halloween. The waitress wore a vampire costume.
“She didn’t know Marlene had ALS,” Lessing said. “When she asked Marlene what she wanted, Marlene didn’t answer because she couldn’t talk. The waitress said that her costume must have left her speechless. We just laughed and laughed.”
It’s not always like that. Humay doesn’t have much movement, but she can cry. Her bottom lip pokes out. Then the tears come.
“She doesn’t cry often,” Lessing said. “When she does I’ll just say go ahead and cry. We’ll both sit here and cry. I don’t know what else to do.”
Lessing is also the woman who persuaded Humay to go public with her struggle as a way to leave a legacy of hope and awareness to all those affected with ALS in the future. But Lessing’s personal mission has been to retain communication with her friend. She’s tracked down letter boards for Humay to spell with and special pens that are easy to hold. Small things are communicated through blinking.
“My prayer as this was happening was, ‘Please, God, let her be able to communicate,'” Lessing said. “Then when she couldn’t speak it was, ‘God, let her keep her hands.’ Now it’s, ‘God, please find ways for us to communicate each day.'”
Why is that so important to Lessing?
“Because I love her,” she said. “I can’t say this is my lifelong friend, but I sure wish she had been.”
With eyes and smiles
Marlene and Jim’s relationship is mostly unspoken now. They always seem to know implicitly what the other is thinking, without words.
“We communicate … with eyes and smiles,” Jim Humay says.
Silence has strengthened their love, not stripped it away. Humay smiles and scrawls “the queen” on her pad regarding how her husband treats her.
“Yeah,” Jim Humay grins as his eyes glass over. He reaches over and smoothes the hair on her forehead. “I know you are.”
Then he snaps back to being strong and steady. He’s a firm believer that those who love his wife can’t let ALS beat them. The emotions creep out now and then in the trickle of a tear or a yell of anger when he walks their dog, Madison. There’s guilt in those moments of release. It’s an unfair advantage.
“Marlene doesn’t have those outlets,” he said.
Jim Humay is her sole caregiver. He dresses and bathes her, adjusts her in chairs, gets her up and down the stairs, makes sure she’s got all her daily nutrients. He’s with her in all her moods, powerless against the deterioration of the woman he’s loved for decades. Eventually the disease will get to the muscles surrounding Humay’s lungs. When they stop working, she doesn’t want to be on a ventilator.
“There’s a little bit of denial each day,” Jim Humay said. “A little bit of anger each day, some bargaining and some depression. And, every once in awhile, there’s some acceptance. We just get the best out of each day that we can.”
This year, on Sept. 11, while the nation mourned loss, Marlene and Jim Humay celebrated hope. The couple, along with more than 100 of “Mar’s Angel’s,” participated in the ALS Walk4Life in Chicago. Humay completed the walk in her chair with her husband pushing and their dog leading the way. “Mar’s Angels” alone raised more than $10,000 for the cause.
“Not for me,” Marlene Humay writes. “(For) other moms and dads. (So) they can dance with (their) sons and daughters, too.”