Notes on the California State DBSA Conference

Posted on October 25, 2010 in DBSA Support Groups and Conferences

Conferences bring together a variety of speakers and audiences. Numbers at this year’s California State Conference in Ontario, California, had suffered a bit from the economy, but audience involvement with the speakers was more intense than in past years or maybe I felt it more because I had recruited some of the speakers.

The strongest and most original clarion call was issued by the therapist Dr. Mary Madrigal. I recruited her to speak to remind us of those in their last days and their possibilities for comfort or abandonment. Death comes to us all. The question is what will be the quality of the time on the death bed? Will we be surrounded by caring staff or will we be left alone in a room because that same staff shrinks from us because we suffer from mental illness?

The hockey mask of Jason affects the opinions of medical professionals who supposedly have been educated in the realities of our illnesses. “Caregivers often express fear of those with mental disorders,” says Dr. Madrigal, “while dealing routinely with victims of dementia.” Statistics show that most of us are harmless, yet we may find ourselves shoved to the further reaches of the hospice where our cries of fear cannot be heard.

Dr. Madrigal told us that we will fight “not only the nearness of death, but also the judgments made against the mentally ill.” This is no way to pass on. Doctors, nurses, chaplains, and other hospice workers need to be educated on our needs. Peer specialists could make a specialty of caring for the dying and their families. The time is now to reach out for better final care for people like us,

She left us with a question to ask about our peers living their last days: “How are we going to honor their lives?”

During Friday night’s entertainment, we witnessed former DBSA director’s Peter Ashenden’s tirade against Dr. David Miklowitz due to the fact that the latter had referred to “bipolar persons” rather than “people living with bipolar disorder”. This kind of controversy reminds me of the “big enders” versus “small enders” opposition in the parliament of Lilliput. Ashenden’s focusing on terminology helped obfuscate the many positive elements of Miklowitz’s speech including the doctor’s insistence that we avoid the temptation to just take a pill and be done with it as far as healing goes. Mikowitz also emphasized the importance of personalizing information given to patients about their disorder, to allow patients to design mood charts that worked for them, and to encourage family members to get therapy themselves. All these points and more (see Lynn’s article) were lost by Ashenden when he dissed Dr. Miklowitz for the use of the term “bipolar patient”. “Don’t put a label on me!” cried Ashenden. And so he brought back a memory….

Twenty five years ago, a woman I was hanging around with at what time exploded with words like this: “I hate judgmental people. They make the world so much worse. It would be so much better if we didn’t have so many judgmental people around.” I had to restrain my laughter. Did she not see the degree to which she was the judgmental one? When faulty, judgment reduces and ejects everything except the pretense of one defining quality. Did Ashenden stop to think about his extreme judgmental evaluation of Miklowitz, one that reduced a compassionate talk to one phrase that the former head of DBSA thought was going to get us all locked up by an evil establishment?

Abuse precipitates many bipolar episodes, Dr. Miklowitz noted. Mood swings make it impossible to treat Post Traumatic Stress Disorder. There is a need to medicate and to offer therapy. I have to say that I agree with this assessment. I had considerable trouble facing my PTSD before I was put on lithium. Even now, I have problems.

There is a more extreme view that gained some voice at the conference. That was that our symptoms are entirely the result of trauma and that the medical establishment would rather sedate our symptoms into nonexistence than admit to their origins.

Dr. Rosenfeld was besieged during his talk by people who were eager for non-drug solutions such as Trans-Cranial Magnetic Stimulation. Rosenfeld reported an 80% success rate with the procedure, a fact that gave many in his audience hope for the future. Among them were people who had been through multiple ECT treatments with poor results. TMS could reverse those failures. While many will be helped by this, drug therapy will remain part of the equation for depression.

Meds have clearly helped me, but I have my nights when I am haunted by demons of my past or my disappointment in my lack of achievements. Therapists will often avoid talking about these things lest they precipitate an episode. The people who see it only as trauma-related suggest that I haven’t been put through enough pain. I see this as an alternative stigma, one that suggests that I am going through what I am going through because of character flaws. Both mainstream psychiatry and alternative approaches have driven me to a place where I feel to blame for my history. But they both have something to offer me, as well.