| Help for the Suffering
Saving Emilie: A Couple’s Cry for Help
It’s every parent’s worst nightmare: an infant with a mysterious illness. At first it seemed that Emilie, the baby daughter of Janae Rodes Wilson ’01 and her husband, Travis Wilson ’02, was the picture of health. Then, shortly after Emilie’s 4-month birthday, something startling happened.
“One minute she would be fine, and the next minute her head would drop, her arms would go up, and sometimes she’d cry for an hour,” says Janae. Concerned for her daughter, Janae went to the doctor’s office, even the emergency room, but no one seemed too concerned. “It’s probably just congestion,” they told her.
Janae’s instincts told her it was more. “I went on the Internet and read about a condition called infantile spasms,” she says. “It seemed to match what Emilie was experiencing. But I convinced myself I was just freaking out.” When she and Travis took Emilie to see another doctor, he said: “She looks fine to me, but I’ll send you down to neurology — just for peace of mind.”
But that afternoon, after Emilie’s EEG, peace was hard to come by. “I’m so sorry, the results are abnormal,” the neurologist said, explaining that their daughter had a non-genetic neurological disorder that brought on brain-damaging infantile spasms. Devastated, Janae turned to Travis. “I read about this illness,” she cried. “Seventy to 90 percent of the kids that have it end up mentally retarded.”
The prescribed treatment, twice-daily steroid shots, left the infant with a puffy and swollen face, frequent diarrhea, and yeast infections. “She was miserable,” remembers Janae. Though steroids cure such spasms in 80 percent of children, Emilie fell into the 20th percentile, and the Wilsons needed a Plan B — and fast. Doctors said the next option was an aggressive, yet sometimes effective, medication not yet FDA-approved and only available in Canada and other foreign countries. Despite the potential side effects, one of which was partial vision loss, Janae and Travis knew it might be their only option. They drove to Canada and gave Emilie a dose while she was having spasms in her car seat. “We were trying to stop the spasms at whatever cost,” says Janae.
Though the drug seemed to work for a while, the spasms returned after five months, and doctors eventually put Emilie on a very restrictive ketogenic diet — a final attempt to get her spasms under control. “It was heartbreaking to watch our daughter feel so hungry,” says Janae. “She would cry after meals and look at us like she wanted more food. The hardest part was not being able to tell her why she had to go through this.”
While Emilie continued to suffer, so did Janae and Travis. First one car broke down, then another. “Emilie was in and out of the hospital, twice with restricted breathing issues,” remembers Janae. “It was an overwhelmingly hard time.”
One day when Janae was on the phone with a dietician, she broke down in tears. “Emilie is so hungry,” she cried, not knowing who to talk to about her daughter’s pain and her own grief. “She’s biting her fingers and scavenging for food. How can I continue subjecting my daughter to this awful diet?”
The dietician, like Emilie’s doctors, wasn’t prepared to talk to Janae about her worries. “They were there to stop the spasms, not to be our counselors,” says Janae, who says she felt selfish talking about her own fears to Emilie’s care providers, yet she didn’t know how to sort through her own emotional distress. “I thought I was going to lose my mind.”
Though Janae says Emilie’s large team of medical specialists was providing excellent care, sometimes they didn’t communicate with one another, and Janae and Travis felt the strain of overseeing their daughter’s nearly full-time treatment. Still, no one referred the Wilsons to a therapist to help them cope with their intense grief. “Collaborative treatment wasn’t offered to us,” says Janae. “But we could have really used it.”
Finally, Janae confided in her pastor, who referred her to a Christian therapist. “At first I was tentative,” says Janae. “But it was the healthiest thing in the world.”
The Wilsons’ church rallied around the family, too. “They fasted and prayed with us,” says Janae. Before long, an email list of 80 contacts, a total of more than 500 people, was deployed for urgent prayer requests and medical updates. And for the first time in a long while, Janae and Travis didn’t feel they were carrying their burden alone. “We realized that being in a dark place had nothing to do with lack of faith,” explains Janae. “Jesus is there with you.”
Today Emilie, now 3½ years old, is still wracked by spasms. As a result, she has the communication and cognition skills of a 7-month-old infant. But Janae and Travis have faith that Emilie will be healed. “She has a major neurological disorder, but nothing is impossible,” says Janae. “After all, God is a God of the impossible.”
Though collaborative care, in the textbook sense, wasn’t something the Wilsons experienced, their journey has taught them about the importance of mental health care, faith, and the role of families in treatment and healing. It’s the mental, spiritual, and relational elements that Janae feels are the missing links in medicine today.
“Our culture is broadly unspiritual — as opposed to many other cultures around the world, where they recognize the spiritual aspect of a person,” she says. “Here we pretend, and maybe even believe, that a person’s healing is completely physical, without any spiritual or mental connection. We have to recognize the importance of seeking wellness for the person — and their family — as a whole.”
Church In-Reach:
Care for the Congregation
“When a person deals with mental illness, sometimes the Christian community says it’s a spiritual problem — that you don’t have enough faith, and if you just read your Bible more, you’d be cured,” says Claudia Grauf-Grounds, chair of Seattle Pacific University’s Marriage and Family Therapy program.
One Seattle congregation is taking radical steps to change such thinking. Twelve years ago, University Presbyterian Church (UPC) Senior Pastor Earl Palmer invited David Zucker to join the staff. Zucker, neither a clergyman nor a clinician, had long worked for Agape Outreach, a home for adults with severe and persistent mental illness. He was a natural fit for a groundbreaking new position at the church: mental health advocate.
“I’ve learned over the years that the biggest part of healing and recovery is how well you’re welcomed back into the community after you’ve been ill,” says Zucker. “Folks that come the farthest have cheerleaders to root them on. I wanted to explore what the church could do to provide that kind of support.”
Zucker initially envisioned his UPC ministry would center on outreach to people in the city who struggled with mental illness. But something amazing happened. “People — church members — started to come to me in droves,” he says. “Many of them came like Nicodemus in the night, knocking on my window and coming up to me after services.”
Zucker describes families in distress; depression-ravaged, high-functioning adults; and everything in between. “I found that UPC was no different than any other congregation in America; members of the church were suffering and struggling with mental illness, and they were afraid to be identified,” he says. “Yet they desperately needed and wanted support.” That’s when Zucker came to an important conclusion, one that would define his next 12 years at the church: “We needed to be doing in-reach, not out-reach.”
It takes a special sensitivity level to manage such a program. “I’m someone who is a survivor of mental illness,” he says candidly. “That’s where my interest and openness come from. I’ve walked through the dark night of the soul myself. After I became a Christian, I got engaged. When she called it off, I became deeply depressed. Folks very quickly got tired of praying for me. I felt like I was a leper — on the periphery. I’ll never forget the pain and brokenness I felt.” He says he saw the importance of community in recovery from illness and crisis. “I became convinced of the healing value of relational ministry — that’s ultimately what we do here.”
Zucker says his work is rooted in a word: compassion. “In Greek, compassion means to suffer with,” he explains. “When you choose to walk alongside someone who’s suffering, you enter into
their grief. I’d love to see seminarians have more training to do this.”
UPC’s model for mental health ministry is radical by church
standards; it’s also rooted in concepts of collaborative care —
specifically, that healing can be maximized by a network of support.
“Our focus is to provide a first-class welcome and spiritual
discipleship to folks who are hurting,” says Zucker. “No matter
how ill a person is, even if they’re delusional, there is still that
deep spiritual yearning.”
Beyond that, Zucker serves as an advocate, someone who goes
to bat for people who are suffering. He’s there to provide a listening
ear, support, and referrals. “I advocate for people, meet their felt
needs, and help network for them.” Sometimes that means helping
families access social services, dealing head-on with crisis, or making
referrals to psychotherapists. “If someone comes in here needing
support for life, I’m here,” he says. “I can’t do everything for
them, but I can do something.” And Zucker is especially proud of
one thing: “In all of the years I have been here, not one person who
has attended our fellowship groups has ever taken their own life.”
Aside from managing five church-sponsored support groups
attended by nearly 40 people each week, he is in contact with
roughly 200 people in any given Monday-through-Sunday interval — some of whom are psychotherapists working collaboratively
with him to meet the needs of parishioners and their
families. “Twenty-five years ago, churches didn’t know what to do
with divorce; now there are ministries and support groups for
people going through that,” says Zucker. “I think this [mental illness
ministry] is the last frontier in churches — because it
impacts so many people.”
He points to 1 Corinthians, where Paul likens the church to
the body: “Paul says all the parts of the body are essential, but he reminds us that we need to give greater care to the weaker parts
— that’s ultimately what leads to greater unity in the body.”
Living With MS:
A Family’s Healing Journey
“We had a very idyllic family and home life,” says Marcia Hoover,
recalling life before 1991. Then, suddenly, life changed. First,
Marcia’s husband, Rick, was diagnosed with multiple sclerosis
(MS); then Marcia’s dad died the same day Rick lost his job;
and, shortly after, Maggie, one of the couple’s three children, was
injured and had to give up her beloved gymnastics. “We were
trying to go along being the same old family, but we were falling
apart,” recalls Marcia.
As Rick’s health began to deteriorate, Marcia and the children
watched helplessly. “He was always a top athlete,” says Marcia.
“But suddenly he became so fatigued; he had to stop driving
because he had trouble staying awake. He went from a cane, to a
walker, to a wheelchair. It was as though he had the strength of
an 85-year-old.”
Though doctors treated Rick’s physical symptoms, they
weren’t in tune with the grief plaguing his wife and family. “The
doctor who diagnosed Rick didn’t seem to care about how his illness
would affect his family,” says Marcia. “I felt like it was up to
me to keep the family happy. So I decided we all needed to see a
therapist, as a family.”
Maggie, now 29, says these therapy sessions were key to her
family’s healing. “It helped me develop more of a dialogue with my
brothers about our dad’s sickness,” she says. “Until then, we were
all struggling individually.”
Over the next few years, Marcia drew on her “Midwest strength” and her faith — already the foundation for her marriage — to put one foot in front of the other. She describes a cartoon clipping that she keeps in her office. “Why me, God?” the cartoon character asks. God replies, “Why not?”
“God taught us that we wouldn’t be immune to problems,” she says. “To ask God ‘Why?’ is normal. But we also knew that God would give us enough strength to get through it.”
Despite her husband’s declining health, Marcia found the energy to pursue a master’s degree in marriage and family therapy at Seattle Pacific University. “I became interested in collaborative care, and what it could teach me about my husband’s and family’s treatment and healing,” she says. Marcia continued her education, and in 2004, she received a doctorate in clinical psychology from SPU. “I felt there needed to be more people who could collaborate with families, doctors, and patients,” she says. In addition to her private practice, where she treats individuals and families living with chronic illness, she also works with the MS Society to train therapists.
Marcia says she’s learned some important lessons. “In the future, Rick will probably be completely bedridden,” she says. “We have to talk about the next steps, such as caregivers and nursing homes.” Marcia also reminds her patients, and their families, to communicate about such heartbreaking topics, even when it’s difficult: “We have to talk about subjects that are unthinkable. If you don’t say it, everyone else is just going to think about it. When it comes to chronic illnesses, families need to have that kind of communication.”
A New Partnership:
Therapy at the Doctor’s Office
There are a lot of reasons not to be nostalgic about 19th-century medicine. But Kris Thomas, a 2005 graduate of Seattle Pacific University’s Medical Family Therapy certificate program, says there’s something to be said about old-fashioned health care. “The village doctor would go to homes, talk to families, hear their problems, and spend time with them,” he says. “Nowadays we have great specialized care, but the amount of relational support from physicians has declined.”
Research shows that modern-day patients don’t benefit from such impersonal care. “When doctors write referrals for patients to see someone about a mental health issue, patients are unlikely to follow through and get the therapy they need,” notes Thomas. “Yet, if the doctor walks a patient down the hall and introduces them to a psychotherapist, it dramatically increases the likelihood that they will get help.”
This strategy of “co-locating” physical and mental health care under one roof makes sense to Seattle rheumatologist Steven Overman. “Thirty percent of people who come to see their primary care physician may have depression or other mental issues that have frequently been undiagnosed,” says Overman. “In rheumatology, it’s a much, much higher percentage.”
Because of Overman’s bulging practice (he’s now opening a new office, The Seattle Arthritis Clinic, in April), the average patient visit — usually 20 minutes — left little time to provide the extra coaching that he knew his patients needed. “That’s one reason why I became interested in the idea of medical family therapy,” he says. In 2004, Thomas, at the time an SPU medical family therapy student, joined Overman’s practice as an intern.
“When you say fibromyalgia, many people say ‘what’s that?’” says Thomas. “Oftentimes, patients’ families and friends didn’t understand their illnesses, and they’d say unsupportive things like, ‘You can’t feel that bad; you don’t look sick.’” Still, Thomas says one of his biggest challenges was breaking down patients’ own stereotypes about therapy. “When Dr. Overman would bring patients over to see me, some were very cautious at first,” says Thomas. “They’d say, ‘I don’t need therapy; I’m just dealing with a physical problem.’ So many patients came in with this mind-body dichotomy already in place. My challenge was to help them understand that illness doesn’t just affect the body; it affects all the pieces of you.”
Overman, who has provided space and supervision for three Seattle Pacific interns, including Thomas, says having an in-house therapist doesn’t excuse him from talking about emotional issues with his patients. “Doctors should be prepared to provide the relational support patients need,” he says. “But we can’t always get the job done in 15-minute sound bites.” He likens the doctorpsychotherapist collaboration to the difference between a oneor two-parent household. “When I know that a therapist will be there on the other end to listen, confirm, and support after I see a patient, I’m able to be a little more direct,” he says.
“There were times when Dr. Overman had to give patients tough love and tell them things they didn’t want to hear,” says Thomas. “Afterward, he would find me and say, ‘I need you to meet with this person. Do you have some time to help them through this process?’” In many cases, Thomas remembers, therapy sessions provided the patient with new coping skills.
According to Overman and Thomas, that’s the beauty of collaborative care. Says the doctor, “I can do everything right — make the right diagnosis, prescribe the right medicine, etc. — but if I don’t make sure my patient is adequately engaged, they may walk out the door, ignore the treatment plan, and never get well.”
—By Sarah Jio
— PHOTOS BY Mike Siegel
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