A woman explains why she finally agreed to try deep brain stimulation for her depression.
From The Quarterly, Fall 2012
As a Ph.D. who rose to head a university department, and as a wife and mother in a close-knit and loving family, Edi Guyton would certainly seem to have enjoyed a productive and fulfilling life. But in fact, she says, she spent most of her 64 years ’faking it,’ like an actor playing a role, trying to hide from the world the devastating effects of depression. Inevitably, there were times when the mask slipped, and in her despair, feeling she could no longer keep up the act, she more than once attempted suicide. Until the winter morning in 2007 when she walked into a hospital operating room to brave experimental brain surgery in a last-ditch stab at breaking depression’s grip.
The procedure she underwent, called deep brain stimulation (DBS), was developed as a treatment for intractable major depressive disorder by neurologist Helen Mayberg, M.D., an active member of the Brain & Behavior Research Foundation Scientific Council. Dr. Mayberg’s now widely hailed achievement, currently in clinical trial for FDA approval for general clinical use, was initially supported with a series of NARSAD Grants. The result of her explorations into brain mechanisms underlying mood disorders now offers new hope for people like Edi Guyton for whom conventional antidepressant treatments work poorly or not at all.
Edi’s troubles began early. She grew up in South Carolina, one of five children of a physician father and homemaker mother. In a happy home, she remembers from around age 11 her own persistent unhappiness. In her youthful innocence, seeing people smile, she thought that they must be pretending their good mood. She couldn’t understand then that the emotions she was feeling were different from what other people felt. Although usually quiet and withdrawn, there were times, as she vividly recalls, when she would explode in uncontrollable anger and “scream and scream and scream.”
Like many people with depression, she blamed herself, convinced it was something she was doing to herself. When, despite her fiercest efforts to keep it at bay, depression got the upper hand, it was, so she believed, because she “wasn’t trying hard enough.” It was up to her to “outrun this thing and not let it take me down.”
But she couldn’t always outrun it. The first time she tried to kill herself she was 19, in college, and not doing well in her studies. She blamed her depression on her inability to concentrate rather than the other way around. Later, after the cloud had lifted somewhat, she was able to knuckle down and complete her degree, and not long after graduation, she met the man who would become her first husband and the father of her two daughters.
Edi began her career teaching in middle school. After her first daughter was born, she enrolled in graduate school, and started her master's before her first daughter was born and finished it in the 15 months before her second daughter was born. She went on to earn a doctorate in Educational Leadership in Social Studies at Georgia State University, in Atlanta, where she subsequently served on the faculty and in 2003 was named department chair.
One of the factors that helped her manage her professional life despite recurring bouts of depression, Edi explains, was that “in academia it’s okay if sometimes you hole up in your office: you’re doing research or writing. So I could escape if I needed to, and when I felt better I’d just double down. One place where I couldn’t hide was in the classroom. My teaching wasn’t criticized—that went well—but I knew I was sinking when student evaluations said things like ‘she seems removed.’” (The success of her teaching is reflected in the Edi Guyton Faculty Mentoring Award, created by the University’s College of Education.)
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Managing her home life was a different story. If she refused to believe she couldn’t control her depression, her husband doubted that depression was her problem at all. “He called it sulking,” Edi says. “I was ‘temperamental.’” The marriage faltered, and they eventually divorced. Edi later remarried, and she and her second husband, Narl Davidson, a retired Georgia Tech nuclear engineer, recently celebrated their 30th anniversary.
Which is not to say it was thereafter all smooth sailing. For one thing, the new husband came with three sons, and the normal difficulties of step-mothering pre-teens and teens was exacerbated for Edi by her illness. It took a lot of “intense marital counseling” for her to finally acknowledge that she couldn’t conquer her depression on her own. “In retrospect,” she says, “I’m amazed at the strength of my denial all those years.”
In 1999, when she was again suicidal, electroconvulsive therapy (ECT), augmented with medication, worked successfully. She had a period of about four years that were probably, she says, “the best of my life up till then.” But the good times didn’t last, and when the next dark time came, in 2004, neither ECT nor medication helped. Realizing that as department chair she couldn’t “crawl under my desk and hide,” after 22 years on the Georgia State faculty, she took early retirement.
“Each time I fell,” she says, “it was down a deeper hole. I made another suicide attempt in 2005 after which Narl retired from his job in order to take care of me. Our implicit agreement was that he would do what he could to keep me from having to be hospitalized, which I dreaded, and I would stay committed to trying to get better. A part of me was actually furious that he and my daughters had convinced me to not take my life. I thought, ‘this is my life. I’m the one who’s suffering.’ But they had made it clear how important my life was to them. I kept to the bargain. And then came DBS.”
It was Dr. Mayberg’s idea to adapt DBS, originally a treatment for Parkinson’s disease, to treat depression based on her identification of a small brain structure called ‘Area 25’ (the subcallosal cingulate) as a kind of central relay station for depression. It was Edi Guyton’s good fortune that Dr. Mayberg, who began her DBS research in Toronto, had moved to Emory University in Atlanta in 2003, and that she deemed Edi a good candidate for DBS surgery, which, because it is invasive and potentially risky, is considered a treatment of last resort.
When Edi walked into the operating room, her only fear was that it might not work; in the previous small Toronto study, the rate of success had been around 60 percent. Among the critical questions Dr. Mayberg and others are trying to solve is how, exactly, DBS works, and why it doesn’t work for some patients. “I didn’t think I could go on living if it didn’t work,” Edi says. But she also thought that if it didn’t work “at least I’ll be doing something for science.” It did work. Not perfectly, but well enough.
Today, five years later, Edi still has her ups and downs, but, she says, “the downs are never as far down, and never last as long.” Most days she feels good, helped by continued medication in addition to the DBS and a renewed sense of purpose. She devotes much of her time now to volunteer work related to helping others whose troubles she understands so well. She leads support groups for NAMI, the National Alliance on Mental Illness, and participates in the program of an inner city church in Atlanta that provides a variety of recreational and support services for people in the area, a large proportion of whom have mental illnesses and live in specialized housing. Edi has her own little support group within the ranks of the program’s other volunteers. “We’re people with mental illness who work with people with mental illness.”
Based on her own history, Edi stresses the importance of support. “My family has been just amazing, including my children and stepchildren.” As for her husband, Narl, she says, “He’s the reason I’m still alive.”
And not surprisingly, she stresses the primacy of research. She and Narl make donations in honor of Dr. Mayberg to the Brain & Behavior Research Foundation. She says: “Their scientists are dedicated to getting the answers that we so desperately need. I can’t say enough about how important I think the work is. And,” she adds, “I’m obviously a beneficiary.”
Read more about Edi's story and the two Foundation-funded researchers who helped Edi through her DBS Treatment on her path to recovery: Drs. Helen Mayberg and Paul Holtzheimer.