Through her eyes: ALS patient passes on her wisdom through art and letters

By Malea Hargett
Editor

Leigh Green's eyes are a window into her soul.

Each Friday it is Girls' Day and several women gather at Green's home to have a cup of coffee and make scrapbooks. Green, a wife and mother of three young girls, laughs and she cries. In her eyes visitors can see her joy and her sadness.

Green is living with amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease. She is 43.

The disease has attacked nerve cells in Green's brain and spinal cord, preventing voluntary muscle movement. She can no longer walk, talk, eat, write or paint.

Own Leigh's artwork Click here

In her own words Click here

But through a speech-generating communication device, she can let her family and friends into her world with her eyes. With a sensor, Green can simply blink or look at a desired area of a computer screen and type out words, phrases or sentences. Her family or friends can read what she has typed on the screen or Green can have the computerized voice read it aloud. Through the system she can e-mail or send text messages and continue the friendships she formed while attending Mount St. Mary Academy, working as an environmental geologist and volunteering at Immaculate Conception Church in North Little Rock where she is a parishioner.

Before the diagnosis

Green loved painting and considered studying for a career as an artist, but she decided to go the practical route and majored in geology with a minor in art.

With her mother's death in 1998, she wrote, "I re-evaluated my priorities in life to become more about family and helping others."

After the birth of her second child, Sarah, 11 years ago, she decided to work part time from home and devote her time to volunteering in the parish and school.

Also during this time, she became Catholic like her husband, Chuck.

In 2003 she gave birth to her third daughter, Rachel.

"I knew something was not right, so I spent an hour a day lifting weights, running, hiking, biking or swimming," she wrote. "After three years of this I lost 85 pounds. I felt great, but I noticed that occasionally I slurred my words."

She continued to slur her words and even started to choke enough that she had to have her husband and oldest daughter, Rebecca, give her the Heimlich maneuver.

God is the artist

In 2006 she decided to get out her watercolors and pastels to create several religious pieces of artwork.

"It was like God was drawing through me," she wrote.

That same year Green decided to make a career change and applied to become the art teacher at Immaculate Conception School. When she didn't get the job, she became depressed, but she didn't let it stop her from painting and sketching crosses and religious scenes like the Nativity and the Assumption of Mary.

"Knowing what I now, I needed to finish as many paintings as possible before I lost the use of hands," she wrote.

The diagnosis

In August 2008 she got her diagnosis. She was told she would probably live three to five years.

"The news hit hard and I broke down," she wrote. "The doctor left and came back later with two prescriptions, one for Rilutek, which should add a whopping three months to my life expectancy, and Prozac, something to help me from sinking into a deep, dark depression. I took the next few months to come to terms with the diagnosis and find my inner peace."

The past two years have taken a toll on Chuck Green, who works as a co-manager of a Kroger store.

"I am tired all the time," he said. "I work either at work or here. It's rough. My life is not fun."

Leigh Green wrote, "Right now, I am consumed by the guilt of leaving my soul mate early to rear the children without me ... I had no intention for him to become husband, dad, mom, bread winner and caretaker."

Relatives and parishioners have rallied around the family, providing meals and caring for Leigh during the day until a paid caregiver, Valerie, arrives at 4 p.m.

"There are a good 10 volunteers all the time to help care for her and stay with her," friend Carole Sparks said. "There are about 50 families who have provided meals."

Chuck Green said it is friends like Sparks and others who have provided some glimmer of hope.

"The families through the church, they have been here for us," he said. "It's made me see and realize the value of volunteer work."

The future

Leigh Green said she is struggling with one aspect of her life.

"Losing motherhood," she wrote.

She is confined to a wheelchair and watches as her husband or mother-in-law, Marcia Lukas, care for the children, now ages 7, 11 and 12, and take them to their school and sporting events.

"It is the ultimate goal for Chuck, Rachel, Sarah and Rebecca to need me less and less," she wrote. "It is hard to watch Grandma Cookie (Lukas) and Valerie be mom, especially when I don't agree."

One way she is preparing is by creating scrapbooks. Leigh chooses all of the colors, papers, stickers and photos for the pages and her friends place them on the page. She has also written letters to her daughters, detailing her life and what she wishes for their lives as they grow up without a mother.

"We have been fortunate to go through life with Leigh in the course of putting these scrapbooks together. She has written some very poignant letters," friend Julia Stefanov said.

A bright spot for Leigh was when Sparks and another friend took her to the Cathedral of St. Andrew July 28 to view the relics of Blessed Teresa of Calcutta. The Missionaries of Charity brought the reliquaries over to Green and touched them to her face.

"Comfort and awe. Said a rosary," she wrote. Tears came down her face as she typed the words.

"Leigh said she has stopped praying for herself and she prays for those around her," Stefanov said. "She's a powerful prayer."

"God has blessed me with this ALS," she wrote with tears in her eyes. "I don't want to fumble the ball. I want to do his will."

Own Leigh's artwork

Prints from 26 pieces of art created by Leigh Green, mainly in 2006 and 2007, are available through the family's foundation website, http://www.berringtongreenfoundation.com. Themes include Madonna and child, stained-glass cross, the Holy Family, agony in the garden and adoration of the shepherds. Notecards and 5-by-7 and 8-by-10 prints are sold to raise money for the education of Green's children and for local charities, including Catholic Charities.

---

Please read our Comments Policy before posting.

Article comments powered by Disqus