Rev. Randall Mullins has lost a few pounds in the past week. He’s trying to eat more foods by mouth. An extra pound or two makes such a difference in his energy and emotions, says his wife, Sharon Pavelda.
Randall continues his yoga stretching. He tries to play a few holes of golf every so often with his son, Andrew. He and Sharon walk as much as they can. And they dance.
They dance at home. They dance in exam rooms. Most Wednesday evenings, they join a dance improv group at TheaterWorks in Midtown.
“There is nothing quite like dancing in a group body to remind us of the reality of our oneness with all that is. Makes all that body-of-Christ imagery come home to our bones,” Sharon said.
“The reality of being able to move, much less dance, in the face of a looming diagnosis of paralysis is all the more precious to us these days.”
These days, The Looming Diagnosis has turned their lives upside down.
Just before Christmas, Randall saw a neurologist. He had been losing a lot of weight. He wasn’t eating because he’d been having difficulty swallowing and his tongue had been twitching. The neurologist said the symptoms suggested amyotrophic lateral sclerosis, or ALS, sometimes called Lou Gehrig’s disease.
ALS is a death sentence. It’s a rapidly progressive, invariably fatal neurological disease that attacks nerve cells that control voluntary muscles. There is no known cause. There is no known cure. And there is no single test that can provide a definitive diagnosis of ALS.
Instead, physicians observe symptoms and conduct tests that rule out other treatable diseases. Randall “failed” his first test in January — a barium swallow exam useful for diagnosing cancers, ulcers and other problems that cause narrowing of the esophagus.
Physicians told Randall that he might choke to death if he didn’t stop eating by mouth. That swallowing water could be more dangerous than swallowing food. That he needed a feeding tube and more tests. That he might be dying.
“We felt like we were suddenly plunged into the abyss,” Randall said.
Randall Mullins went to Westwood High and Westwood Baptist Church. “I was a good Southern Baptist boy,” he said. “I know exactly when I accepted Jesus as my Lord and Savior: Jan. 12, 1958.”
After college, Randall taught history and coached football at Booker T. Washington High for a few years before going to seminary, first in Memphis, then in Berkeley, Calif.
Randall spent many years as a United Church of Christ pastor in the Seattle area. He worked for peace and justice. He provided sanctuary for Central American war refugees. Eventually, he and his first wife provided a home for two Honduran orphans. A few years ago, one of those adopted children, Andrew, enrolled at Rhodes College.
Two years ago this month, Randall and Sharon, who were married in 2003, came to Memphis to visit Andrew. “We were overcome with this feeling that we needed to move to Memphis,” Randall said. “I can only describe it as a call. We came back in July to test the call in the heat.”
It passed. They moved to Memphis in the fall of 2010, intending to start some sort of “ministry of land” on a Mullins family farm about 70 miles away in Mississippi. That didn’t work out.
Instead, Randall directed his attention to other local ministries and made plans to become a hospice chaplain and minister to the dying. Sharon and a friend opened a shop in Cooper-Young called The Purple Door, where she offered her services as a drama therapist and death midwife.
Suddenly, death was knocking on their door. They decided to open it — every day.
“I am still surprised when exactly what we need at the moment we need it walks through the front door,” Sharon said.
Some days it’s a gift — a shiny new blender, perfect for making Randall’s fruit smoothies, or a small bag of homemade muffins, or potted yellow pansies.
Other days, it’s a family member who comes to stay for awhile and help.
Still other days, it’s a friend who comes to share a cup of tea and a prayer, a story about living with a feeding tube, or advice on how to navigate insurance claims and medical terms.
“We have such a strong sense now of God’s loving community,” Sharon said, “of falling into God’s arms and being held.”
Randall got his feeding tube in January. A few days later, a friend and physician came by to visit.
She listened to them talk about Randall’s symptoms and difficulties. Their concerns about living through a tube. Their anxieties about The Looming Diagnosis. Their fears about what was happening and what might happen.
“After listening to our experiences,” Randall said, “she looked me in the eye and said, ‘You don’t have to live in fear.’”
Deep in their souls, they knew that.
Randall has been a gospel minister for more than three decades. Sharon, who grew up in Ohio, is a licensed “death midwife,” a counselor who helps family members legally, physically and spiritually manage the death of a loved one.
Both of them have spent years visiting hospitals and nursing homes, offering blessed reassurance to people who were sick and dying. They believed what they said.
Now, as Randall’s body is being tested, so are their beliefs in this Holy Saturday space they inhabit between despair and hope.
“The way they have engaged the physical, emotional, relational and spiritual meaning of the loss of physical ability, complicated by the lack of a clear diagnosis and the stark reality of mortality, has demonstrated to me and so many others that what they thought they believed and what they practiced professionally is, in fact, their true and lived reality,” Dr. Jeanne Jemison said.
Several weeks ago, Randall and Sharon started keeping a journal on caringbridge.org to keep far-flung family and friends informed about The Looming Diagnosis.
“Here are some things we have noticed,” Randall wrote.
“Our gratitude level and awareness of the daily miracles of everyday life have increased dramatically.
“Our medical system is severely broken and often dehumanizing.
“People caught in the system who still manage to be compassionate and kind shine like the sun and warm our hearts.
“God’s grace travels faster than the freight train of a frightening diagnosis.
“The best way to wait over an hour in an exam room is to dance and sing and hug and kiss a little.
“Our well-being is grounded in Love, not fear.”
Randall and Sharon start each day with more faith than fear, more Easter hope than Good Friday despair.
“We have come to believe that being afraid is not the same thing as having no faith,” Sharon said.
Instead of sitting at home worrying, they watch movies that make them laugh and movies that make them cry.
Instead of sitting in waiting rooms, just waiting for the next test, they talk and listen to others who are there, offering words of comfort and compassion.
Instead of chaining their lives to medical technologies, they embrace them.
After Randall got his feeding (PEG) tube, he and Sharon asked family and friends to help them “Name that Tube.” Suggestions included Tubelation, PEG o’ my heart, and UTube.
The winner: Fidel Gastro.
Not long ago, they got a package in the mail from California friends. Inside was a CD marked “for Fidel.” Randall played it. “Yummy, yummy, yummy, I’ve got love in my tummy,” sang the 1910 Fruitgum Company.
“Sharon and I both howled in laughter,” he said.
Randall and Sharon spend more time laughing than crying. Food is not what sustains them.
“They keep courageously counting their blessings,” said Rev. Sonia Walker of First Congregational Church, “exploring the unexplainable with God, letting go and letting God, and the list is longer every day.”
Every day, they engage in small acts of death-defying faith.
A laugh shared with friends or just with each other becomes liturgy.
A bite of muffin and a sip of tea becomes communion.
A dance around the exam room or the living room becomes a prayer.
“The spiritual challenge is to stay in the present, to enjoy all that can be enjoyed in each moment,” Randall said.
“In some ways, all that fear has been a gift. We’ve never felt more alive, and we’ve never been more dependent on God’s grace.”