Sorrows into Solace
Instead of wallowing in self-pity, these Kansas Citians find ways to use their losses to help others.
Suffering, that unavoidable ingredient of life, offers choices. Some people might break under the strain; some simply survive the best they can. And then there are those who use their suffering as a creative force to help others.
As late psychiatrist, neurologist and Holocaust survivor Viktor Frankl wrote in his book Man’s Search for Meaning, when facing a fate that can’t be changed, it’s important to “transform a personal tragedy into triumph, to turn one's predicament into a human achievement.”
Meet four Kansas City residents who not only transformed their sorrows into achievements, but whose achievements are also providing solace to others.
Finding the gifts in caring for a loved one with dementia
When Deborah Shouse’s mother, Fran Barnett, started repeatedly losing her purse, forgetting her hearing aids and asking the same questions, Shouse’s father, Paul Barnett, found himself frustrated, impatient and scared. When her mother came from Memphis, Tennessee, to visit her, Shouse, despite her best intentions, developed similar feelings.
Eventually, Fran was diagnosed with dementia, and she and her husband moved to the Kansas City area to be closer to Shouse. As her dementia progressed, Fran was moved into a memory-care unit at a nursing home, where Shouse and her father watched the names of familiar objects and the ability to perform everyday tasks, like sitting down, slip from Fran’s mind.
Shouse, a writer, started journaling to deal with her tangle of feelings. “I was making sense for myself of my confusion and worry,” she says. She was struck by how her mother, despite everything she’d forgotten, would light up when Paul entered her room and say, with a smile, “My husband.”
Shouse made herself a vow: “I was going to find the gifts and blessings in this journey and figure out a way to stay connected with my mom as she changed.”
Shouse turned her journaling into essays. After reading one of her pieces at a literary gathering, people came up to her to share their stories of loved ones with dementia. “I realized that it was hard for people to talk about this,” Shouse says. “Caregivers were isolated.”
By telling her story, Shouse could connect with other caregivers. She and her life partner, Ron Zoglin, whose parents both had dementia, started contacting nonprofit organizations that worked with dementia, offering to share the stories. The first stop was Alzheimers New Zealand.
Connecting to caregivers in New Zealand through her stories was a “grand experience” for Shouse. “It was emotional and heartfelt,” she says. “It was cathartic for me.” And she found that her message was universal.
One woman who was caring for her husband said, “When I left home, I was really sick of my husband. But now, hearing your stories, I can go home and feel love for him again.”
In 2006, Shouse turned her writings into a book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. She self-published to retain control of the process. Using the book as a catalyst for fundraising events, she raised more than $80,000 for dementia programs.
After her parents died — her dad in 2004 and her mother a year later — Shouse continued to write about dementia. She expanded her first book and, this time, found a publisher for it. Still drawn to the subject, she wanted to write about creativity and caregiving.
While screening films for a Kansas City film festival, she and Zoglin were fascinated by Alive Inside: A Story of Music and Memory, which documents how listening to music helps people living with dementia. On the screen, Shouse witnessed listless people coming to life when a headset with their favorite music was placed over their ears. It made her wonder what else was going on in the field.
“As I researched the question,” Shouse writes in Connecting in the Land of Dementia: Creative Activities to Explore Together, “I discovered a whole new world: Across the globe, writers, painters, musicians, gardeners, expressive therapists and other innovators were using the arts, creativity and imagination as connecting points, tapping into the spirit that thrives in those living with dementia.”
After talking to dozens of these experts, Shouse created a guide filled with activities to enrich the lives of people with dementia and their caregivers and strengthen their connection. Published in August 2016, the book has been praised as uplifting and inspiring, a gift to those living with dementia and their caregivers.
Writing about dementia and sharing her stories has been a gift to Shouse, as well. “When you help others, you help yourself,” she says.
According to the World Alzheimer Report, by the year 2030, 74.7 million people will be living with dementia. As yet, there’s no cure.
Bonnie and Mickey Swade
Supporting those whose lives have been breached by suicide
Bonnie and Mickey Swade sit in the kitchen in their condo, amidst Bonnie’s colorful paintings, her collection of porcelain cakes and other sweets, and their two rescued terriers, discussing the worst day of their lives — the day their oldest son was found hanging from the gazebo in the backyard of their home. Dec. 20, 2003. Brett was 31.
“He never could be happy with what he had,” Bonnie says. “He was his own worst enemy. He was good at whatever he tried, and he always sabotaged himself.”
That’s typical of many people who take their lives, the Swades have learned. “They’re highly successful,” Mickey says. “But they don’t see that in themselves. Brett was that way. He was in the military. Everything he did, he got all kinds of honors for.”
The Swades, who are retired, have become experts after working with hundreds of people whose lives have been touched by the suicide of a loved one. “Bonnie wanted to make something positive out of Brett’s death,” Mickey says.
When Brett died, they couldn’t find a support group for survivors of suicide. So they went to a grief support group. In what Mickey calls a fluke, they were teamed with six others who had lost a spouse or child to suicide.
Besides attending the group, the Swades trained to facilitate a support group. They then started their own for people who’d lost someone to suicide. Some evenings they’d have one or two people show up. They distributed brochures to clergy, funeral directors and psychologists and teamed up with the suicide prevention organizations. The word got around. Now they have from 18 to 36 people at their semiweekly group.
The group morphed into Suicide Awareness Survivor Support (SASS). The Swades also started an annual Remembrance Walk for people who have lost a loved one to an unexpected death, whether by suicide, murder, accident or other means. The purpose of SASS, according to its website, is to “unite survivors and let them know they are not alone.”
The walk, going on its 14th year, attracts some 300 people. It raises money for suicide awareness and education and other SASS activities, including an annual remembrance service, held the Sunday before Thanksgiving to help survivors cope through the holiday season, and an annual Day of Healing to help survivors deal with their grief.
The Swades know how lonely it can be dealing with a suicide. Before their son’s funeral, their rabbi asked if they wanted him to mention the cause of death in Brett’s eulogy. They did, but many people are afraid to talk about suicide because of the stigma.
“If you tell people one of your children committed suicide,” Bonnie says, “There’s dead silence. People walk away from you at parties. It must be somebody’s fault.”
“People don’t understand mental illness,” Mickey says. “Mental illness gone bad ends in suicide.”
Although Brett was never diagnosed, the Swades suspect he had bipolar disorder, once known as manic depression. In his youth, he was always getting into trouble, raiding his parents’ liquor cabinet, stealing money from his sister and grandparents, and once handcuffing his brother to a bannister and placing the key just out of reach.
“Our lives were in disarray because of him,” Bonnie says. The Swades have three other children, but because of Brett’s behavior, he got most of the attention.
They gave Brett a choice of seeing a psychologist or going to a military academy. He chose the psychologist, but when it became apparent that he was saying only what he thought the psychologist wanted to hear, off he went to Missouri Military Academy.
Brett excelled at the academy, where he was captain of the soccer team and became battalion commander his senior year. He then joined the army, where he served for six years. It was after he left the army that he took his life.
Unbeknownst to Bonnie and Mickey, Brett had attempted suicide while in the military. He gave the army permission to release his records to them just before his death, and the records arrived after he died.
Their work in suicide prevention, awareness and survivor support has helped the Swades deal with Brett’s death. They continue to facilitate the support group twice a week. They also helped found the Johnson County Suicide Prevention Coalition, and they serve on the board of the Greater Kansas City Mental Health Coalition.
“If you help others, you help yourself,” Bonnie says. “I kind of dragged Mickey into it. But I think it’s been good for us.”
More than 40,000 people kill themselves annually, according to the American Foundation for Suicide Prevention. For every suicide, there are 25 attempts. For more information, go to sass-mokan.com.
Working with addiction to make lives shatterproof
Gary Henson’s son, Garrett, was probably 15 years old when he started experimenting with drugs. Until then, his father saw him as a normal teenager who was “gregarious, wicked smart and with a strong set of friends.”
Then Garrett’s life began to change. He was cut from the golf and basketball teams at Bishop Miege High School, and his divorced parents married other people. Garrett started experimenting with alcohol and drugs.
“He got through Bishop Miege without too many hiccups,” Henson says. “The telltale signs like grade deterioration didn’t happen.” It was after Garrett went to Colorado State University on an academic scholarship that his life began to crack.
When Garrett failed his second semester at Colorado State, Henson made him move home and attend Johnson County Community College. Garrett continued to do poorly in school. “I knew things weren’t good. I didn’t know how bad they were,” Henson says.
Because Garrett was 18, Henson couldn’t force him to go to rehab. So he sent him to a National Outdoor Leadership School program in Colorado. “At 13,000 feet, I figured there was no way he could smoke pot or drink alcohol,” Henson says. “When he came back from school, I had my son back. He was lucid. I felt good about things.”
However, Garrett soon started to party again, and he botched the summer construction job his father helped him get. Henson did the only thing he could do — he threatened to cut Garrett off financially unless he went to rehab.
So Garrett spent 45 days at one of the Second Nature Therapeutic Wilderness Programs in Colorado. While there, he was required to write a letter to what he was addicted to, which was then sent to his dad. Garrett wrote about opioids. Until then, Henson hadn’t known that Garrett was using them.
Opioids are a class of highly addictive prescription pain medications, such as Vicodin, Percocet, Oxycontin and morphine, as well as heroin. They change brain chemistry, providing both pain relief and pleasure. Once someone’s addicted, it takes more than a year, at least, for the brain to change back, Henson says, adding, “I was horrified once I understood how bad it was.”
After the 45 days, Garrett had eight months of step-down programs, where he received therapy, was regularly drug tested and slowly regained more freedom. He shared an apartment with another man who had been through the program. One week after the program ended, the two traveled around Colorado gathering drugs for what’s jokingly called a “relapse party.”
The next day, Garrett didn’t wake up. When his roommate awakened at 2:30 p.m., he first called his own dad, then the paramedics. The paramedics gave Garrett naloxone, which can reverse the effects of opioid overdose if given immediately. It was too late for Garrett.
Despite the stigma of drug addiction, Henson wanted people to know the truth about Garrett’s death. He took six months off from work and studied the problem of addiction. In the meantime, Henson’s company, Tortoise Investments, started a fund through the National Christian Foundation in response to Garrett’s death. It raised more than $100,000.
Henson asked himself how he could use his business background to address prevention. With additional resources from his company and its parent company, Mariner Holdings, Henson used the fund to start a website, run a marketing campaign and develop a business plan.
Then he discovered Shatterproof. A national organization founded by Gary Mendell, whose son Brian killed himself in 2011 after a long battle with addiction, Shatterproof focuses on uniting and empowering people around addiction, ending the stigma, advocating for change in laws that affect people who are addicted and supporting research.
Ultimately, Henson joined Shatterproof to help others avoid the pain he’s suffered as a result of Garrett’s addiction. He advises parents of teenagers to educate themselves and be vigilant. “If you see signs of withdrawal, anxiety or paranoia,” he says, “address it fast and furiously.”
Of his work with Shatterproof, Henson points to his salt-and-pepper hair. Before Garrett’s death, he says, it was black. He describes his efforts as both cathartic and exhausting. “But I don’t know any other way to be. Because you have two choices: You can either be mired in the muck, or you try and do something positive.”
Drug overdose is the leading cause of accidental death in this country, with 47,055 lethal drug overdoses in 2014. Opioid addiction drives the epidemic, with 18,893 overdose deaths related to prescription pain relievers, and 10,574 overdose deaths related to heroin in 2014, according to the American Society of Addiction Medicine. For more information, visit shatterproof.org.