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Saving Seth – A Family’s Struggle with Schizophrenia and BiPolar Disorder
Seth in black tee shirt with his family.
By now the infamous mug shot of Jared Loughner—head shaved, eyes crazed, smile crooked and unreadable—is embedded in Americans’ minds. He was once a good-looking, well-toned teenager with blue eyes. Today, he’s better known as a mass murderer who in Tucson on Jan. 8, 2011, shot 19 people, including U.S. Rep. Gabrielle Giffords. Six of them, one a 9-year- old girl, died. Loughner’s inappropriate smile, which so hauntingly captured his manic thoughts at the time, chilled many viewers who watched it flash on screens for days and weeks. More mass shootings have erupted across the nation over the following two years—at a Colorado movie theater, a Connecticut elementary school, and the Washington Navy Yard. They all trace back to untreated mental illnesses, as do 63 percent of mass shootings since 1982, according to a list compiled by Mother Jones, a liberal investigative magazine. Still, fewer than one out of 100,000 mentally ill individuals become mass murderers. The everyday tragedies are those within individual lives and families: About 7.7 million American adults, or 3.3 percent of the U.S. population, suffer from a serious mental illness, primarily schizophrenia and bipolar disorder with psychosis. Schizophrenia, according to the National Institute of Mental Health (NIMH) may cause people to “hear voices other people don’t hear” and “believe other people are reading their minds, controlling their thoughts, or plotting to harm them.” Bipolar disorder causes unusual and severe “shifts in mood, energy, activity levels, and the ability to carry out day-to-day tasks.” A 2010 study by NIMH estimates that 40 percent of adults with schizophrenia and 51 percent of individuals with severe bipolar disorder receive no treatment within any one-year period. How should Christians respond? We can start by listening to the stories that mothers of the mentally ill tell. In Phoenix, Deborah Geesling tries to be a good mother to her son Seth Geesling, 21, who stands a hulking 6-foot-1-inch. He speaks soft and low, and his eyes are brown and doe- like, curtained by lashes that could make a teenage girl jealous. He is the third of four brothers—all over 6 feet tall, dwarfing their blond, bespectacled mother. The three others do not have mental illnesses. Before I met Seth, Deborah told me her son is a perceptive, kind sweetheart, her “pico de gallo.” Although she worried how he would respond to me, when we met he showed himself a gentleman: warm, polite, and considerate. But observe him for some time, and certain things seem a little off. Seth is restless, unable to focus or sit still. At times his speech wanders and slurs. He can be slow in responding to questions, and sometimes he smiles or chuckles at odd times. His official diagnosis is schizoaffective disorder, which means he shows symptoms for both schizophrenia and bipolar disorder. Seth was 14 when he started showing bipolar symptoms. His reckless behaviors jumped far out of his usual sweet character. He secretly overdosed on Benadryl and awoke vomiting. He would run away from home, once disappearing for three days. “At the time, it just seemed like he was being a rebellious teenager,” said Deborah. She found his behaviors extreme and perplexing, but “we didn’t know what we were really dealing with at all.” The behaviors turned increasingly irrational, violent, manic. He ran away from home so often that the Geeslings had an on-call search team of church pastors. The Geeslings’ fingers were poised to dial 911 at any given moment. One night, Seth hit his father. By that point, the Geeslings knew Seth shouldn’t be at home. Deborah was hysterical from fear and exhaustion. Too frequently, they were sending his younger brother to the safety of a friend’s house. They had tried everything: a Christian ranch in Montana, juvenile deterrence programs, counseling, discipline—nothing was working. It was a bizarre situation that night: A parent begging a cop to arrest a son. But as Deborah watched her son being led away in handcuffs, she felt it might save him: “This goes against the norm of a parent’s heart, but we were very grateful he was in jail. At least we knew he was safe for that time.” After jail and staying in an interim house, Seth was put on probation—but he stopped taking his medication, started hanging out with the wrong crowd, and rapidly fell into a worse mental state. By then he was 18—a legal adult. Soon after, he had his first psychotic break: He went around his neighborhood ringing his neighbors’ doorbells and singing the same song over and over. His brothers chased him while disturbed neighbors looked on. By the time he ran into a busy street, five police officers were after him. He pushed an officer down and ran out into the middle of the road. Cars honked, tires screeched, people howled. Finally, an officer tasered him. The Geeslings were able to petition the courts to commit Seth involuntarily. Per Arizona’s law, the judge put him on court-ordered treatment for one year; but once the order expired, Seth stopped taking his medication. And so began the carousel: Hospital. Court. Home. Hospital again. Transfer to another hospital, then another. Home. A shortage of public psychiatric beds in the state meant hospital staff could only keep Seth long enough to stabilize him. At home he would stop taking his medication; symptoms would return, and he would be back at the hospital to start the cycle all over again. Deborah calls it a “revolving door system.” The bed shortage is a nationwide problem. The Treatment Advocacy Center, a national advocacy organization, estimates that the nation is short 95,000 psychiatric beds. In 1955, 300 public psychiatric beds were available for every 100,000 people. America has lost 95 percent of those beds since then: Half a century ago states started deinstitutionalizing the mentally ill, releasing about 830,000 people into their communities. Deinstitutionalization back then appealed to both civil-rights liberals seeking to “free” the mentally ill from lockdown institutions, and to fiscal conservatives looking for ways to cut budgets. In an era devoted to liberation, activists and novelists (such as Ken Kesey, author of One Flew Over the Cuckoo’s Nest, which became a much-lauded movie) argued that the mentally ill might be the sanest among us, and in any case treatment should be voluntary. This massive social experiment worked for some higher-functioning patients, especially with the introduction of effective antipsychotic drugs such as chlorpromazine, which helped certain patients with schizophrenia to improve significantly. The introduction of Medicaid in 1965 and the expansion of other federal programs led state governments to ask, “What can we get Washington to pay?” Before such federal programs, state governments paid 98 percent of mental health costs. But state cost-cutters realized that by closing down psychiatric beds and forcing out patients, they could shift the financial burden onto the federal government. Medicaid did not pay for state psychiatric hospital patients between the ages of 22 to 64, but it covered community-based services and also paid for inpatient psychiatric care in general medical hospitals. Those rules gave states incentives to push patients into outpatient programs and general medical hospitals (usually ill-equipped for long-term psychiatric care). By 1986, 42 percent of mental health expenditure was on inpatient care, and by 2005 that had dropped to 20 percent. Medicaid brought some benefits, including adoption of safer and more effective antidepressants and antipsychotic drugs. But some researchers believe it also tilted public mental healthcare toward Medicaid- covered people and services, as states aggressively pursued policies and programs that met Medicaid match requirements. State agency roles dwindled to financing and adopting reimbursable Medicaid practices that often did not fit individual patient needs. One problem quickly emerged: Once the patients were liberated, who would make them take their medicine? Homelessness spiked. Prison populations swelled. Public resources, spent on law enforcement and emergency services, surged. D.J. Jaffe, executive director of Mental Illness Policy Org., told me, “Under the guise of protecting civil liberties, we have more people incarcerated for mental illness than ever before. Civil liberties? Freeing people from their psychosis, from their hallucinations, is the greatest liberty you can provide them.” When Seth was first hospitalized in an adolescent psychiatric hospital, the clinic discharged him after one week, saying, “We think he may be bipolar.” His parents stood confused, helpless, and scared. “So ... what do we do? What now?” they asked. “Go find him a counselor,” the psychiatrist and a caseworker advised. The Geeslings drove back home feeling as though they were “groping in the dark,” Deborah recalled. Meanwhile, Seth steamed with bitter resentment in the backseat, certain his parents were the enemies. They had lost his trust. Jaffe says the top-recurring question from parents is, “My son doesn’t realize he has a mental illness. What do I do?” Nor do adult children with psychotic parents know what to do. Yet individuals without insight into their mental illness—a clinical condition called “anosognosia”—are the greatest danger to themselves and society. Many national organizations talk a lot about getting rid of stigma regarding the mentally ill, but the most seriously mentally ill are too sick to care about stigmas, or even to realize they’re sick. They need immediate, direct treatment—medications, hospital beds, and assisted transition to court-ordered outpatient care—but often don’t get it. It took Deborah years of experience to gain adequate treatment for Seth. She attended a National Alliance on Mental Illness (NAMI) “Family to Family” class, a 12-week course taught by trained family members. Other mothers and advocates taught her options and strategies never introduced by doctors or caseworkers. “I always feel like it’s almost a game,” she said. “You need to learn how to game the system, and I’m constantly fighting to get my son the support he needs.” Deborah was eventually able to get Seth into a 24/7-care group home in Mesa, Ariz., with four other men also with serious mental illnesses. In addition to the group home, Seth has an ACT (Assertive Community Treatment) team, an interdisciplinary program for severely mentally ill outpatients. The ACT program emerged during the deinstitutionalization era and is available in six states and various local regions. Theoretically, the teams help outpatients transition into community through a long- term, proactive, highly individualized approach. But it still takes a mother or father to step in frequently and be an advocate, as Deborah did to put Seth under 24-hour care in a group home. The group home sits in a quiet, suburban residential area with manicured lawns. It’s a clean, airy, five-bedroom house that offers patients board games, a TV, and a ping-pong table. The residents are assigned various household responsibilities: Each takes a turn cooking dinner or wiping the windows. They share a common love for hot sauce—they keep a Costco-sized bottle of Tapatio on their dining table, and squirt it on everything from fries to popcorn. Staff members monitor Seth and other patients, teach them basic skills, and resolve conflicts. The group home manager when I visited was Ian Jacoba, a 6-foot- 4-inch ex-football player with thick arms, a thick neck, and a thick voice. He had two years of experience working as a detention officer for a jail, where his interactions with the mentally ill were limited to insuring they take their medication and maintaining a safe, structured environment. Now he works in a setting where the goal is to keep residents out of jail. He and Seth share a casual interaction of easy banters and occasional admonishments, like a big-brother mentorship. “The concept of helping develop them into a member of society where they can have a job, a wife, children, a family ... I didn’t connect it,” Jacoba said. The biggest thing he’s learned while working in this group home, he said, is that people with mental illnesses are not that different from “normal” people. “If you don’t pay attention, if you think they can’t talk about anything beyond the weather, then you’re missing out. You’re really missing out on some truly interesting individuals.” Seth has improved significantly with the acute care provided at the group home. Still, Deborah has to keep fighting to keep Seth there for as long as he needs to be. Although Seth has fared much better and is gradually slipping out of anosognosia, he still struggles physically and psychologically. For one, Seth hasn’t had a proper holiday dinner with his family for years. He has counted the exact number of days that he’s been away from home since he was age 17: 367 spent in hospitals, institutions, and jail, not counting the almost two years he’s spent in a group home. “Holidays are hard for Seth,” Deborah said. “I can’t remember the last good holiday dinner. Seth has a hard time, I think, because it reminds him of what he’s lost.” Deborah’s voice started quivering: “He so much wants to be with his family. But his brothers are moving on with life, and it’s hard emotionally for him.” Sometimes, as Deborah drives back home after visiting Seth, she breaks down in the car. It breaks her heart as a parent to leave a son in another home. Mental illness is a lifelong issue. Although much improved because of better medications, Seth’s mental state destabilizes whenever things fall out of routine. Right after Jacoba got promoted from group home manager, Seth snuck out the window and ran away. His father had to go find him. “Such is our life!” Deborah wrote in an email to me. But she also tells me, “From the beginning, my son is the hero here. He’s the one who’s suffering, and we’re the ones watching him suffer … but as much as God has allowed the suffering, every step of the way, He’s provided.” I thought about what Deborah meant by hero” on the long drive back home, and I realized she meant Seth is a living sacrifice. His family has shed many tears, but they also have witnessed God’s providence in every trial. Seth has brought blessings of grace and insight to those who wept and rejoiced with him. Whatever Seth’s mental condition, Deborah said, “He responds to Christ. … We know the Holy Spirit is in him.” In Deborah’s Sovereign Grace Church, her pastor Trey Richardson and his wife lead a small group for caregivers once a month. About four families meet at a local Applebee’s to share Scriptures and struggles, check up on each other’s progress, and pray for one another. “It’s very encouraging,” Deborah said. “We’re very open with each other, and we laugh about things we probably wouldn’t on a regular day.” It took some time and guidance, but Deborah said members of her church have learned more about her son Seth’s illness. They seek ways to interact with him and take him out regularly. She said that members are learning that her son and others are “not unreachable—but they’ve been neglected for so long.” A doctor often only treats the brain as an organ with symptoms. The church, however, can treat the whole person by lifting the hopelessness, unhappiness, and self-worthlessness that obstruct a person’s ability to worship and glorify God. Once a week, Seth meets with his pastor, Trey Richardson, for biblical counseling. Seth’s love for his church hasn’t wavered, and even if sometimes he walks out in the middle of a sermon, Richardson uses that incident to teach him about the fruit of the Spirit. Recently he asked Seth, “What was your happiest moment this week?” Seth replied: “When I’m in church.” One afternoon at church after his biblical counseling session, Seth prayed, “Dear Father, I pray that you enlighten us today in our walk with you. … Thank you for our church and family. May we come to love you more and more. … Amen.” “Well said, well said,” replied Richardson. Later, Richardson told me that Seth and his family have blessed both him and the church, as members have watched God’s promises transform into real fruits through the Geeslings’ trial: “It’s amazing to see someone not just talking about it, but living it out. You can read a book or an article about it, but it’s not the same as when you see a life actually living it.” —This was part one of Sophia Lee’s investigation. In part two she writes about a young woman dealing with bipolar disorder, a young man whose condition tortures his mother and himself, and what government and churches are doing—and not doing. The sources for the information in the graphic are the National Institute of Mental Health, National Alliance on Mental Illnesses, National Alliance to End Homelessness, and Treatment Advocacy Center.