When Edna Foa first heard about the AMHI, she recalls, “My first reaction was, ‘Wowthis would be of great help to a lot of people.’”
“The goal of bringing together a broad range of real expertise in the most important mental-health topics relating to adolescence was unprecedented,” says Dr. B. Timothy Walsh, the professor of pediatric psychopharmacology in psychiatry at Columbia University Medical Center and a former president of the Academy for Eating Disorders who headed the AMHI’s commission on eating disorders. “It really served a very important goal of summarizing both the information available and, as importantly, of underlining the need for new information.”
Kathleen had agreed to direct the programming, and while she freely admits to having no expertise in the area beyond being Patrick’s concerned and plugged-in mother, once she had Seligman and Evans on board, they were quickly able to recruit the other commission chairs. Three were from Penn: Raquel Gur, Edna Foa, and Charles O’Brien. When Jamieson approached Dr. Thomas Wadden, professor of psychology at Penn and director of its Weight and Eating Disorders Program, to head the commission on eating disorders, he recommended Timothy Walsh, who quickly signed on. Chairing the commission on adolescent suicide prevention was Dr. Herbert Hendin, professor of psychiatry at New York Medical College and director of the American Foundation for Suicide Prevention.
Walsh, a Princeton alumnus who was “very impressed by the Penn folks” involved, says that the “leadership of Kathleen Hall Jamieson, along with the excellence of Penn’s mental-health departments, makes Penn a very logical place” for the initiative to be based.
For Jamieson, the “unsung genius of the process” was Joan Bossert. “She is just a superb editor, and she really cares about this,” Jamieson adds. “By the time we had these commissions created, we had a partnership with Seligman, Evans, and Bossert.”
“I was instantly taken with the project,” says Bossert. “I thought it was brilliant. People were applying adult and child [mental-illness] literature to adolescents and thought it would work. It doesn’t.”
Using another Oxford reference work as a templateA Guide to Treatments That Work, by Peter Nathan and Jack Gormanmost of the AMHI commissions divided their work into four chapters: Defining, Treatment, Prevention, and a Research Agenda. One was significantly different: Seligman’s commission on positive youth development, whose section is titled “Beyond Disorder” (see sidebar on p. 41).
In January 2004, after the seven commissions (each composed of roughly 15 scholars) had their organizational meetings to determine how to approach their sections, they attended a three-day conference at the Annenbergs’ Sunnylands estate in Rancho Mirage, California. “It was a pretty free-wheeling set of debates, an attempt to give everybody a chance to challenge everything in the book,” says Jamieson. “I thought the process was fantastic. If you’ve got that level of expertise locked in one hotel, you’re not going to give up the possibility of saying, ‘Are there other things?’”
Some 32,000 copies of Treating and Preventing, along with the parents’ and teen books, were sent to mental-health professionals, librarians, and others. More than a few of those professionals wrote back.
A social worker in upstate New York called Treating and Preventing a “great overview of the field,” adding that the parents’ books about the disorders were most helpful in “updating current research and treatment modalities.” A school psychologist who had read Mind Race and was now reading If Your Adolescent Has Schizophrenia wrote: “I cannot tell you how helpful these books are. I just recently had to evaluate a 17-year-old male who is an emerging schizophrenic. I think I did a MUCH better job and was able to be far more understanding thanks to your books.”
“Please, please, please forward my heartfelt thanks on to the person who decided to write a book about adolescent schizophrenia,” wrote a librarian in Missouri whose son had been diagnosed with the disorder two years before at age 20. “When he came home and told me the diagnosis, we were both terrified. Being a librarian, the only thing I could think of to do was to read up on the disease. I’ve always felt that knowledge is the best defense against fear … I was appalled at how little print information is available to the general public about schizophrenia.”
Several people wrote in praising Mind Race, including a school psychologist who said it was “instrumental in placing a young girl in therapy,” and another who said it helped her understand bipolar disorder “better than anything I’ve read before on the subject.”
There is a “hope and a possibility” that by 2010 the online version of Treating and Preventing will be updated regularly, says Kathleen Jamieson. In the meantime, the printed version is still the definitive word.
“My personal hope is that parents who come to a doctor someplace that doesn’t have the advantage of being tied to a research hospital, with a child who is frighteningly troubled, [that doctor] may now increasingly have the chance to say, ‘This may be what it is. If I don’t know how to deal with it, I know how to get you a referral to get help for your child.’”
It wasn’t smooth sailing for the Jamiesons, even when Patrick was in the relatively good hands of Penn’s Health System. Though he had been taking his lithium with “almost religious fervor,” he suffered a serious manic episode that led him, late one night, to the hospital emergency room, then to the “unlock unit” of the psychiatric wardwhere, after being observed by the staff “talking back to the overhead pager” and “somewhat violently” throwing his clothing on the floor, he was “transferred to the locked unit ‘upstairs’ for potentially dangerous behavior as well as possible elopement risk.” (Elope, in psych-ward jargon, means “escape,” another example of why, in Jamieson’s wry view, a lot of mental-health providers suffer from an ailment he terms compulsive euphemization.)
“My mother found out that I had been transferred when she showed up for visiting hours the next afternoon and instead of locating me on the open ward was directed to the locked ward,” he writes. “Drugged into a deep sleep, I didn’t know she was there.”
A parent can only wince in empathy on reading the hospital’s notes on the Jamiesons’ reaction, which appear in the book: Mother and father [express] discomfort with son being on a locked ward with “bizarre people” … Parents express anger, frustration and feelings of abandonment by medical staff/system.
Ultimately, Patrick was hospitalized six times, but he has learned how to control his disorder with lithium and other medication, and doesn’t expect to be hospitalized again. Though writing about that time in Mind Race can’t have been easy, his sense of humor emerges even when he’s explaining why he was hospitalizedand why patients aren’t always the best judges of their own condition.
“Once when hospitalized, I informed a doctor that I thought I was ready to go home. Deadpan, she responded, ‘Perhaps we should wait for a day in which you did not take a shower with your clothes on.’”
Despite his frustration with life in the locked ward, Jamieson did come to appreciate how lucky he really was.
“I had the ‘choice’ of getting even sicker or checking into the hospital and getting better,” he writes. “I was very fortunate to have this option, and like many other patients my condition improved during each hospitalization. Though I am thankful for the opportunity to heal, after being discharged six times, I vowed that I would do everything I could to ensure that I would not need to be readmitted. Ever.”
Patrick Jamieson’s significant role in the AMHI will almost certainly ensure that a lot of people get helped. It is also one from which heand everybody else involvedcan derive a good deal of satisfaction.
“I’m very proud of this project,” says Kathleen Hall Jamieson, “and proud in a way that I’m not proud of other projects, because this is in some ways for me a Penn project. A lot of what we do in the policy center makes no use whatsoever of the rest of the Penn community, and as a result, I could have done it anywhere. I couldn’t have produced thiseven if I had the money from the foundation and the support of Mrs. Annenbergif I’d been in Texas [the site of her previous academic home]. I couldn’t have done it at the University of Maryland [her first academic appointment]. I look at this book and think, ‘I’m lucky to be at Penn.’”
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©2007 The Pennsylvania Gazette
Last modified 8/30/07