What's it like to be psychotic and unable to distinguish what's real from what's not real? How do people try to restore a family member to their sanity? Or cope with a severely ill person when there seems to be no way out?
A new anthology, HIdden Lives, Coming Out on Mental Illnesses, is richly packed with stories that let readers confront these questions. Editors Lenore Rowntree and Andrew Boden have brought together a compelling collection of essays, mostly from people who are dealing with various psychotic illnesses. Included, however, are other eye-opening accounts.
Joel Yanofsky, the father of a son with autism, offers wrenching descriptions of parental grief. As he writes in the book:
"The future is what you are given when you have your first child. When you are a new parent you have a sense of something coming.... When you learn your child has autism, it's the future that is taken away."
Editor Lenore Rowntree, meanwhile, provides a harrowing account of the life of her sister, who has struggled with severe mental illness since childhood:
"By the mid-1980's, Beth is in her thirties and still living at home where she's left alone to rant most days because no-one can take being with her for long....When I look into her face I can see that even she can't stand to be with herself anymore."
In late middle age, Rowntree brings Beth to live in a group home in Vancouver. She describes the daunting challenges in finding ways to relate to a sibling with severe schizophrenia. Rowntree has discovered that, "To love someone who is complicated requires you not to think too deeply sometimes, to simply put on your party makeup and dance."
Beth herself has created a vivid contribution to this diverse anthology. Some of her thoughts have the power to evoke terror in any parent who knows they will eventually be leaving someone who isn't capable of independent living. Beth wonders, "I don't know where I'll live, eat, and work once my family and all my friends pass away."
The contribution by editor Andrew Boden offers superb descriptions of the bizarre interactions he has with both an irresponsible psychiatrist treating his psychotic brother and the dysfunctional procedures at New Westminster's Royal Columbian Hospital.
However, Boden's account also creates unnecessary confusion about treatment for schizophrenia. Visiting his brother in hospital, he is suspicious of the calm that his previously delusional brother is experiencing because it has been "achieved with powerful drugs, the heavy tranquilizers the pharmaceutical industry rebranded as antipsychotics."
When antipsychotics gradually restore his brother to lucidity, Boden writes that, "I believed in the system. I believed in a straight, unswerving path to mental health." This unrealistic belief is shattered when, as very often occurs, his brother is released too soon, stops taking his medications, and ends up hospitalized again. Neither the brother nor Boden seem to be getting the necessary education and support that can lead to stability for people with schizophrenia.
Boden's lack of understanding of the complicated path to recovery for most people with schizophrenia can be attributed to many causes. I kept wishing that I could rush over and give him a copy of Dr. Fuller Torrey's international bestseller, Surviving Schizophrenia, A Manual for Families, Patients, and Providers. This is the book that offered me and many others the knowledge we needed to help our family members learn to successfully manage their illnesses.
The choice of physician Dr. Gabor Mate to write the foreword is also concerning. It's understandable to want a medical perspective on the illnesses described in the book, since these are illnesses for the most part that contemporary neuroscience now understands as brain disorders. But Mate's foreword offers little besides the respect we already have for the writers.
The introduction could have been worse, though. Mate's popular book on addiction, In the Realm of Hungry Ghosts, too easily links addiction with negligent parental behaviour. Since many people with untreated or undertreated mental illnesses develop addictions, and since psychiatry no longer blames parents for psychotic disorders, it's disturbing that Mate's theories have so much influence.
I know many very responsible parents, like retired Vancouver teacher/librarian Dell Catherall, whose mentally ill children have developed addictions. Catherall's gritty story reveals the kind of torment these families experience as they try to help their very ill sons and daughters.
Andrew Boden suggests a way to understand mental illnesses that is problematic. He writes of being influenced by a professor who believes that the "difference between a psychotic state and a normal one is in degree and not in kind." I hope Boden will look at an article by Richard O'Reilly, a Canadian psychiatrist and researcher. His classic piece, "The Seven Deadly Sins of Mental Health Reform," lists the wish to normalize and thus demedicalize psychosis as one of these misguided 'sins.'
O'Reilly's observations about the current problems plaguing mental health care in Canada provide the kind of bigger picture that I wish a foreward to the book had offered. It would have been useful to help both the readers and writers of this book understand how, even given the limits of current knowledge, we can do a better job of limiting the destructive impact of severe mental illnesses.