mindyourmindpro: For families, your book is what a text book is to professionals. It is a must-read. Each and every sentence is replete with expertise that is invaluable to others in the same boat. It is also critically important for helping professionals to read.
Necessarily, your story painfully arouses the fact that our loved ones with mental illnesses are too often neglected in a disjointed, discontinuous system of care and are the most poorly managed. This fact is not recognized until one is well into the storm of the system. I imagine it like being in the middle of an ocean caught in a fierce storm, desperate to find life jackets amidst the insurmountable swelling waves and scrambling to find the lifeboat while your feet are swept out from under you.
Through “hellish truths” of Molly’s mental illness, Molly, you and your family emerge intact, although a reformed version of yourselves. You write, “…support and constant loving attention made an enormous difference in her eventual recovery.” How were you able to remain determined, loyal and loving toward your daughter who at times, made false accusations about your family and raged from angry delusional places?
Susan: Molly was always a child who had been so easy to deeply love - very connecting and responsive. Even though I didn't understand her illnesses well for a long time (and still don't), I could see that she wasn't in her right mind. Her bizarre behaviours really seemed to be about the illness and not some statement about her real self. It was also very clear that her disorders were making her suffer much more than we were and that she desperately needed our help if she was gong to be able to get better.
mindyourmindpro: Somehow you managed to navigate incredible family stress and life transitions, all the while supporting Molly through expected developmental hurdles, for example her experimentation with alcohol, helping her avoid a common in-hospital habit like smoking and guiding her in making choices about friends. How did you find the balance between giving her freedom to make her own choices with the fact that she was battling a major illness affecting her judgment at times?
Susan: I always wanted Molly to make any decisions that were within her ability at the time. At the same time, I could see that she was able to respond to suggestions I offerred. Even though she didn't initially think she could manage the GED program, she was able, with lots of encouragement, to continue to try to attend. She is especially grateful for this help and remembers how much it mattered to her; she's justifably proud of taking on and mastering what was a monumental challenge at the time.
mindyourmindpro: How do you think siblings are affected by serious chronic mental illness? How did your family’s situation affect Naomi, both positively and negatively?
Susan: Siblings have begun to speak publicly in Vancouver and they have a vast range of stories to tell. I don't think anyone believes that these illnesses have benefitted their ill sibling. It's often been difficult for these siblings, especially when they were younger, to have so much of their parents' attention be focused on whatever crisis was occurring. As they age, they are trying to work out what their responsibilities should be both to themselves in having full lives that may involve them living in other cities or countries and the potential needs of their siblings.
mindyourmindpro: “…and seeing her, in a moment of stillness, can still evoke images of what she was before nature betrayed her.” You write about the many changes in Molly during her illness, one being the change in her physical coordination, and the change in her gait. On their own these are seemingly small things, but collectively all the changes add up to a massive reordering of one’s identity. How did you come to terms with this, and how did you explain the changes to people around you?
Susan: I believe that many people with serious mental illnesses could benefit enormously from skillfully delivered programs that promote body awareness, improved fitness and teach deep relaxation techniques.
mindyourmindpro: How did putting your energy into creating a community of understanding people bring healing to you? Where did you find the energy for the theatre, the parent support groups, the conferences? How did this affect Molly?
Susan: Becoming involved with other families in similar situations gave me tremendous energy as did gaining greater knowledge about these illnesses. Both of these involvements helped me feel less helpless. Molly has really benefited from both of these choices I made. I've been able to better support her recovery by learning all I could about the best medication options and opportunities for psychosocial rehab programs. Also, the other mothers I've met relate to Molly with profound understanding and compassion. They understand her much better because of their experiences with their own children. *
mindyourmindpro: You said it was difficult to explain to family friends about your situation and that you surrounded yourself with a network of “people who wanted to learn and to help”. How important was this network in your family’s path to recovery?
Susan: This network has been and continues to be crucial to me. i would feel very isolated and lonely without it even though I have other good friends who do not have children living with catastrophic illnesses.
mindyourmindpro: You were told early on what Molly needed by helping professionals, some of which went against your instincts. How much should families be guided by their own instincts, versus blindly taking the advice of helpers? How do family members determine what is the right course of action for their children, when they may not have yet established trust in the system or the helpers?
Susan: Families need to understand that for most of the 20th century psychiatry and psychology blamed them, especially mothers, for the development of schizophrenia and bipolar disorder. Most mental health professionals have been exposed to these theories in some ways. Even though these theories do not have any genuine research that supports them, they continue to have a huge impact on families. When I speak to family groups, I always ask any parents in the audience to raise their hands if they have, at some point, been blamed for their child's disorder. It's rare to meet parents who haven't had to deal with this issue. Parents need to be vigilant in investigating the belief systems of mental health professionals with whom they may try to work. Families need to become much more proactive in demanding better training of mental health professionals. I describe in the book Molly's first therapist who had graduated with an MA in Counselling Psychology from the University of British Columbia; this program neither required nor offerred any course on serious mental illnesses. Shocking as this is, this inadequate preparation is not unusual in many programs that train a variety of mental health professionals. The organizations that accredit these programs must raise the standards for education about serious mental illnesses. I know of many people who have had experiences like the ones I describe.
mindyourmindpro: How difficult was it to balance the relationships with Molly’s treatment teams, and not alienate them? How challenging was it to find collaboration and how did it feel when collaboration was present? How did this impact Molly?
Susan: Molly fared best when mental health professionals included us as partners in her care. Since she lives with us, it only makes sense that they should try to find out what we are seeing since their interactions with her are much, much more limited. When clinicians practiced in ways that excluded us, decisions were made about Molly's care that damaged her. *
mindyourmindpro: It seems to me, that some of the most challenging times for you were times that professionals did not take time to listen and learn from you. How important is it, in your opinion that professionals seek out a detailed collateral history from family members or loved ones? For the patient, what is the danger in making assumptions about what the client or patient is saying? How important is it that helping professionals suspend their preconceived notions and familiar scripts about their clients? Why is collaborative treatment so important?
Susan: Mental health professionals who trained in non-research based theories need help in understanding the historical context of the education they received. Public agencies that employ mental health clinicians need to do a much better job in addressing the educational deficits in their employees. Funding excellent professional development programs for their employees will, in the long run, save the health care system money. Research demonstrates that family involvement leads to better outcomes yet families continue to report that their efforts to be involved are often undermined. Parents whose children develop serious mental illnesses need quick access to psychoeducation programs. They need to be supported in taking on extraordinary challenges.
mindyourmindpro: You are a courageous and determined individual. In 2005, you modeled true engagement when you co-created an open brainstorming forum for people with mental health issues to determine what they would like and what they would need to achieve school success. This led to the beginning of a special General Educational Diploma program for mental health consumers In Vancouver. Why do you believe it was so important for Molly to complete school?
Susan: The book describes that even though it was (and is) my wish for there to be a special GED program for consumers, Vancouver Community College (VCC) wasn't in a position to develop this kind of program. Nevertheless, the self paced programs they offer provided Molly with years of intense support she needed to try to recover from the severe cognitive losses she'd experienced. Vancouver is only now bringing in (and on a limited basis) a cognitive remediation program for consumers. The right school programs can provide opportunities to people to rebuild their minds in important ways. Douglas College in New Wesminster offers an amazing course that the Fraser Health Authority funds for its mental health clients. This course provides consumers who dropped out of postsecondary school, or who never had a chance to attend, the opportunity to be in a class completely focused on giving them the skills they need to be successful in courses they may decide to take. Schools provide incredible opportunities for social and personal development as well as for intellectual development. Families need help from well informed mental health professionals to learn about all of the supports and accommodations that schools can provide; sometimes it's easier for us to be persistent in asking for these supports than it may be for our family member who may still be feeling extremely vulnerable.
mindyourmindpro: One last question. It was tough to limit the questions! There are so many excellent talking points in your story for professionals working with young people and their families. Why did you write this story? What do want readers to take away from your family’s experience?
Susan: I couldn't find a book written by other parents and promised myself that if I was ever able to provide this kind of resource, I would try. I still very much yearn to hear about the experiences of other families in other parts of Canada and hope that their stories can become more available.
The biggest message I want to send out to families is that their efforts can make a huge difference and they don't deserve the poor response they too often receive from the mental health system when they try to support their ill family member.
mindyourmindpro: Thank you so much for sharing the details of Molly’s Illness and its impact on your family. Molly is a resilient young woman. All the best to you and your family.
Susan's memoir is published by Bridgeross in Hamilton ON and can be found here www.bridgeross.com/brainbroke.html
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