Because her life has been defined not just by words, but by The Word, Connecticut evangelical pastor Nancy Butler (Pastor Nancy) has a Bible quotation stenciled in script over the french doors in the sunny bedroom she shares with her husband, Greg:
“Let us run with perseverance the race marked out for us.”
Holding pride of place on the walls nearby are at least 40 names, each a famous person Butler finds inspirational: Martin Luther King and Gandhi are two of them. A bookshelf near that wall is filled with their autobiographies and books about them, and it inspires her to loan copies to anyone who comes to visit—friends, physical therapists or nurses.
Matter-of-factly, Butler points out, “This is where I’m going to die, and when I die, I don’t want to look at an empty wall.” Instead, she’ll be reminded of people whose faith sustained them and whose lives have inspired her throughout her own life. “That’s what I want to see before I leave,” she says.
Butler has a neurodegenerative disease known as amyotrophic lateral sclerosis (ALS), which in the United States is commonly called Lou Gehrig’s disease, after the Yankees’ baseball player stricken by it in the 1930s. In other parts of the world, ALS is often called motor neurone disease (MND).
ALS is a fatal disease in which nerve cells (neurons) in the brain and spinal cord are attacked and die, causing a loss of muscle control. Because ALS only affects motor neurons, however, the mind, intelligence, and function of the five senses are usually unimpaired.
At the time this article was written, there were 96 clinical trials listed for ALS in the United States, and most of them are in the recruiting process. If you are interested in learning more, you can find more information at www.clinicaltrials.gov (a website that’s a service of the United States National Institutes of Health).
ALS worsens progressively, and Butler’s condition has advanced more rapidly than anyone expected. But, like those honored on the pastor’s “Wall of Inspiration,” Butler certainly knows how to persevere.
Still, her 100-member congregation who make up the church Butler founded, Riverfront Family Church in Glastonbury, Connecticut prays for her as they helplessly watch the disease take its toll week after week. Children ask her curious but innocent questions about how she eats and gets dressed every day.
In the fall of 2014, Pastor Nancy started “tripping over her toes”, as she puts it. To be diagnosed with ALS, people must have signs and symptoms of both upper and lower motor neuron damage not caused by anything else.
Signs of upper motor neuron problems usually include: spasticity of the muscles (a stiffness and resistance to movement); hypersensitive reflexes; Babinski sign (a reflex that is a sign of damage to the nerve paths connecting the brain to the spinal cord—when the sole of the foot is firmly stroked, the big toe moves upward and the other toes fan out)
Signs of lower motor neuron damage include: weakness; muscle atrophy (wasting); and fasciculations (muscle twitching). These signs can occur in any muscle group, including the arms, legs, torso, and medulla oblongata region of the brainstem.
At first, Butler was told her symptoms were being caused by primary lateral sclerosis (PLS), a motor neuron disease that affects the upper motor neurons, progresses more slowly than ALS, and usually isn’t fatal. But in February, on her grandson’s birthday in fact, she received the ALS diagnosis.
Not everyone with ALS loses their ability to speak, but it is not uncommon. For as long as she could, Butler offered her parishioners a sermon every week. Eventually, Pastor Nancy’s voice weakened, and she had to let associate pastors, including her daughter, step up to her podium to help.
Amy Roman, of the Forbes Norris ALS Clinic in San Francisco, CA, developed a method to preserve a person’s voice for use with a speech generating device. The easy-to-use process can be accessed at www.messagebanking.com.Quickly, Butler went from cane, to walker, to wheelchair. She recently had a feeding tube inserted, and relies on a ventilator at times to help her breathe. The cause of ALS is unknown—nor is it known why ALS strikes some people but not others. In 1993, scientists discovered that mutations in the gene that produces the SOD1 enzyme were associated with some cases of familial ALS.
Butler doesn’t dwell on the the causes of ALS in her life. Instead, she finds comfort in the lives of others who have been tested physically and emotionally. She says that everyone suffers in their own way, and when you suffer, your faith in God grows stronger.
Because her grandchildren’s version of “grandmother” is “Gaga,” Pastor Nancy and Greg named the new home they moved into when she was forced to retire “Camp Gaga.” Physical therapy and special equipment can help people with ALS maintain independence and safety throughout the course of their ALS. Gentle, low-impact aerobic exercise, including swimming can strengthen unaffected muscles, improve cardiovascular health, and help fight fatigue and depression.
So, the couple, who met in the 5th grade, dipped into their retirement funds to make sure the house had special features to help them cope with Butler’s present and future health challenges. She has motorized lift systems that help her move between the bedroom, bathroom and living room. Although she’s been too weak for water therapy in the home’s indoor pool, Butler laughs that her grandkids and dogs are big fans!
Pastor Nancy calls her home the “house that love built.” Flowering shrubs line paths throughout its nine acres, and Butler frequently wanders the property via a motorized wheelchair, enjoying the surrounding beauty of the day.
She credits her beloved family—including her church family—with helping her accept their situation. Her husband explains that the family has “learned to cherish treasured moments. They have come at a high cost, but they are gifts nonetheless.” Pastor Nancy admits that she cries almost every day, but it’s because she is reminded daily of the incredible loving kindness of others. She believes that ALS has many more such reminders to offer her. For years, she’s written her prayer requests on paper shaped like an egg, because a friend once told her “prayers take time to hatch.”
One of Butler’s long-term prayer requests was “God, teach me to understand healing.” She feels like god answered that prayer in a very specific way.
“I do believe there can be meaning and productivity in a time of suffering that you don’t necessarily get any other way.”
Like the inspirational leaders whose names are painted on her walls, the pastor uses difficult times to help her flock accept death as part of life. She encourages her congregation, which she calls “a welcoming, and affirming evangelical church,” to talk about her situation openly. “It’s an opportunity to teach everybody,” says Butler. She reminds her community that, “We do not grieve as the world grieves. We believe life is eternal. This isn’t the whole story.”
One of her favorite “hero stories,” short biographies in the oral tradition that highlight positive personality traits of people she admires—many of them stenciled on her bedroom walls—is about abolitionist and civil rights activist Sojourner Truth. On her deathbed, as visitors mourned around her, Truth said, “Honey, I am not going to die! I’m going home like a shooting star!”
But it’s not a shooting star most people think of when they think of ALS—it’s falling icy water. Many people first heard about ALS when they saw one of the many “ice bucket challenge” videos that went viral in 2014. The campaign resulted in $115 million being donated to the national chapter of the ALS Association (ALSA).
The organization is focusing it’s efforts on finding a cure and progress is being made. Thanks to Ice Bucket Challenge monies, researchers from Johns Hopkins University were able to identify a protein that fails in the cells of most ALS patients and show that if the protein is repaired, the damaged cell can heal. Researchers continue to pursue this and many other avenues to a cure, echoing that bible quote painted on Pastor Nancy’s wall:
“Let us run with perseverance the race marked out for us”