Leo, 61, is dying of a rare lung disease that has slowly taken away her control of her life. She needs help to bathe, to read and, sometimes, to get out of bed. Planning her memorial service helps her fill the days at Pleasant View Center, a nursing home on Pleasant Street. It also allows her to steep in her past and create some kind of plan for the future
Nepal RPCV Beverly Leo plans a musical memorial to her life
She plans a musical memorial to her life
Selections on CD reflect her life's challenges, triumphs
By JOELLE FARRELL
Monitor staff
October 14. 2005 8:00AM
Caption: Beverly Leo poses for a portrait during her 1966-1969 Peace Corps service in Nepal.
Nearly every day, Beverly Leo listens to the music she wants played at her memorial service. She puts the CD of six songs on repeat, the volume loud enough so she can hear it over the hiss and rattle of her oxygen tank.
After a while, the songs meld together and fade -another background noise friends and family talk over when they visit. But the music seeps in. The sounds become a part of Leo, a different voice she can speak through when her own voice is gone.
Leo, 61, is dying of a rare lung disease that has slowly taken away her control of her life. She needs help to bathe, to read and, sometimes, to get out of bed. Planning her memorial service helps her fill the days at Pleasant View Center, a nursing home on Pleasant Street. It also allows her to steep in her past and create some kind of plan for the future.
"It's just kind of another thing I can point to and focus on," she said. "It's kind of weird because it's a final thing, and I really won't be there for the execution of it. But it doesn't really matter because, with me, it's always been the planning and the doing."
Leo, formerly the head of Concord's Society for the Prevention of Cruelty to Animals, has allowed the Monitor to chronicle her death in a series of articles. Leo hopes her story will raise awareness about her disease and help others who must deal with end-of-life issues.
Leo began preparing herself for her death 12 years ago, when she was diagnosed with lymphangiomyomatosis, a disease that causes smooth muscle to grow over lung tissue, blocking the passage of oxygen. The disease affects only women; about 8,000 in the United States have the disease, according to the National Institutes of Health.
But it wasn't until July, when she was too short of breath to walk up the five stairs to her Bradford home, that Leo knew her life was ending.
She and her family were used to the idea that she was sick. But dying was something new, something unknown. Leo's sons, Alan, 30, and Ben, 27, had watched Leo ride her horses through most of her illness by wearing an oxygen tank in a backpack; they struggled to understand their mother's weakening condition and vulnerabilities.
When they first visited her at Pleasant View, they took turns pushing her around the grounds in her wheelchair, Leo said. Alan started pushing her quickly, jumping on the back of her chair. Leo hollered for him to stop.
"He goes, 'Mom, you used to gallop horses down hills,'" Leo said. "I said, 'Yeah. And that's when I had control in my life. And I could control the horse.
"I said, 'You don't know what it's like to be out of control. I cannot do anything without depending on somebody. That's a different situation. Don't rush me down this hill.'He said, 'Oh Mom, I'm so sorry.'"
Leo finished writing her will a while ago, but she's still finishing plans for her memorial service. And she always beginning a new project.
She finished a coat and hat she thought might be her last crocheted projects. But now, she's crocheting a small wind horse, a mythical figure prevalent on Tibetan prayer flags. The horse, which carries three jewels representing Buddhist wisdom and enlightenment, combines the strength of a horse and the wind to carry prayers to heaven.
'Bev's spirituals'
Leo first heard singer Norah Jones during an MRI, when medical technicians played music during the procedure. Sometimes, when she wakes up and can't place where she is or why she's not at home, she reaches for her headphones.
If she becomes too ill to talk, Leo wants to listen to a CD of her favorite songs, which she calls "Bev's Spirituals." The disc includes Tibetan chants, classical music by Czech and Russian composers, and popular tunes sung by Ray Charles, Johnny Mathis and Judy Collins.
Leo said she can hear pieces of her whole life in "The Moldau," a popular section of a symphonic tone poem composed by Bedrich Smetana. "The Moldau" depicts a journey down the Moldau River in Smetana's home, the Czech Republic, where musical themes represent scenes from rushing rapids to a peasant wedding dance on shore.
Leo closes her eyes and sees the river, she sees blue flowers with yellow centers, sees her parents and her children. At times, the flutes sound like water trickling off a glacier. A frenzied theme reminds her of the disorienting feelings of her divorce from her first husband, Roger Leo, when her children were 1 and 3 years old. The song's joyful resolution symbolizes her second marriage to Bill Hatt, 63, a retired physics professor.
Another classical piece, Tchaikovsky's "Violin Concerto in D Major, Op. 35," reminds Leo less of emotions and more of her intellectual pursuits.
"I like the brilliance of the playing," she said. "To me, it kind of says brilliance, it says sharpness. And it says to me some of what I consider my strengths, which is thinking and working things out."
The influence of her years in the Peace Corps in Nepal are represented by some short Tibetan chants. Leo chose another song, "Somewhere Over the Rainbow," sung by Ray Charles and Johnny Mathis, simply because it's "a sweet little tune" that reminds her of childhood and a crush she once had.
"Johnny Mathis, heartthrob from the '50s," she said with a sigh. "I was a teenager once."
It's trite to hear "Amazing Grace" sung at a memorial service, Leo said, but she couldn't resist adding a version sung by Judy Collins to the CD. It's just too pretty.
Leo put one song on her CD twice: Judy Collins's rendition of "In My Life." She asked Hatt to play the song at her memorial service. She made the CD for herself, but this last song is to be shared, she said.
"I've been many places, I've known lots of people," she said. "It's all come down to where I am now and who I'm with now."
Work to do
Last week, Leo felt more tired and breathless than usual. She took morphine Tuesday and slept most of the day. She called her ex-husband and urged him to visit soon, "when I'm still chipper."
"Boy, I can't take much more of this," she said.
That evening, Leo tried to decide whether to continue working on her wind horse or go back to sleep.
"I thought, 'Why should I reach for that light? Why should I reach for that crochet bag? I'm just so peaceful.'"
But Leo's not ready to give up the project. She turned on the light and worked on the horse. The next day, she talked excitedly about adding jewels to the figure and stuffing it so it could stand near her remains during her memorial service. One last ride on a horse, she said.
"Let me sit on it," she said. "Or let it sit on me."
Leo has plans for the crocheted coat, too. When Leo's sister, Susan Frindt, comes to visit later this month, Leo wants her to wear the coat out somewhere.
"I'll never wear my coat out anywhere," she said. "I'm going to put that coat on her and send her to a party . . . I want it to be out and about."
Leo doesn't know exactly what will happen to her as her illness progresses. For now, she's hoping to have Thanksgiving dinner with her family in her room. Then she can start planning for Christmas, and her birthday on Jan. 5. "Now if I get through January 5, I'll probably see the spring sunshine," she said.
"It's hard for me to predict the progression," she said. "When I see my doctor today, I doubt that he's going to . . . listen to my lungs and say, 'Two months.' I mean he's not going to be able to do that.
"But I'm going to be able to say: Thanksgiving, and finish the horse, at least," Leo said.
(For more information on lymphangiomyomatosis, visit The LAM foundation at http://lam.uc.edu/html/mission.html.)
