Originally posted October 22, 2013.
I love this book. The co-authors seamlessly intertwine a full spectrum of education and complex issues associated with living with and the treatment of bipolar 1 disorder within the story of their true emotional and personal lived experiences.
It’s an important work. It contributes to the conversation about the reality of the existence of mental illness, the deplorable lack of available adequate professional treatment, and the skewed social policies and civil rights laws surrounding the care of those with mental illness in the United States.
I loved it because, like most psychotherapists, I have several people with bipolar illness in my caseload at home in my practice. And this book shares many of their universal truths.
I’m fortunate my long-term BiP1 clients are at a mature stage of education and acceptance about their illness. So, they know their bodies well enough; they know when they are decompensating and need to go to the hospital for a higher level of coordinated care.
It’s always humbling to me when a vibrant, intelligent and well-functioning client (not so) suddenly appears in my office, shaking with anxiety and almost incoherent. They need a higher level of professional, coordinated, compassionate care. Such are the limitations of verbal therapy.
Like most mental illness, bipolar disorder exists on a spectrum. Some people are high-functioning, others are disabled from severe and persistent mental illness. I worked for a few years in a Partial Care setting, where most people were unable to work or function independently as a result of the severity of their mental illness.
My office is in a middle-class suburb in New Jersey. A stay in the hospitals near my office ensure integrated care. Seeing one psychiatrist and/or psychiatric nurse-practitioner consistently for a few months in an inpatient setting with coordinated daily therapy sessions helps support their recovery to healthy functioning in a way that piecemeal visits with an outpatient psychiatrist and sessions with me just cannot do.
Getting to the place where the client and the family accepts that BiP1 is a medically managed condition usually takes years. Years of confusing episodes where exhausted and worried parents, siblings and spouses have bailed out their family member, retrieved them from hospital ER’s and cleaned up their houses from their manic episodes when they decided to “fix” the kitchen with a chainsaw or “paint” the car a new color with house paint.
Tough for the family and the client. Tough for a therapist to provide support to such a situation. It never feels like enough. Never.
So, I looked forward to reading Walks on the Margins: A Story of Bipolar Illness with great interest. This book is co-written by a mother and son, Kathy Brandt and Max Maddox. The son has bipolar 1 disorder. He has his first hyper-manic episode in his first year of college. Kathy and Max take turns writing chapters; they write about the same incident from their own perspective. Their story is about the confusing, painful, and practical impact on the whole family when bipolar 1 disorder surfaces in a family member.
Max speaks first. The book opens up with Max describing his first full-blown episode of mania, his delusions and his ecstatic emotional state. He ends up walking down the middle of a highway and was picked up by local police who are experienced and educated about mental illness. He was taken to a suburban psychiatric hospital where there was coordinated care, with psychiatrists and counseling groups available.
When Max is first diagnosed, the professionals at the hospital tell the family that:
“…if I had to choose the mental illness that my kid might have, this is the one I’d take. With the right medication, bipolar disorder is treatable, Max can do well.”
Well, ok. That’s one loaded statement. Loaded with the half-truths and pain. I know the statement is dichotomously both true and false at the same time. And I know the family has no idea the amount of pain and frustration that will actually be lived through that simple sentence.
It means, well, it’s treatable to the extent that the person can tolerate the drugs and their side effects. It’s treatable to the extent that the person will actually have the capacity on multiple levels to adhere to the medication routine. It’s treatable as long as the insurance company will pay for proper care; I know insurance companies routinely shirk their responsibilities to the consumers they serve. It’s treatable to the extent that proper coordinated mental health care is available in clean and compassionate mental health facilities. It’s treatable to the extent that clean and compassionate mental health facilities actually exist.
For the remainder of the book, through their shared story, Max and Kathy show us the incredible pain, frustration and endurance needed to cope with a serious mental illness. Max & Kathy show us the reality of what is contained in that statement, “bipolar 1 is treatable.”
Max writes about his soaring delusions and ecstatic visions. To me, they are confusing and hard to follow, but I guess that’s the idea in his work. He conveys the essence of what it feels like to be delusional. All at once, ecstatic, empowering, frightening, and disempowering. And usually leading him into very dangerous situations for himself and for those around him. His writing reminds me of Kay Redfield Jamison’s descriptions of her manic delusions.
Kathy writes about her struggles with her son’s mental illness from the perspective of a mother, whose heart is at first, confused and hopeful. She also describes her first-hand encounters with our fragmented mental health system, the frustrating laws, the recalcitrant insurance companies that somehow have the right to simply refuse to cover the consumers who are paying for their services. She conveys how she becomes more and more exhausted and scared as the realization of the gravity of her son’s illness drags on. I felt her maternal love and her heartbreak.
So many of this family’s story reflect the story of those whom I’ve seen professionally. Kathy’s descriptions of the bipolar support groups sound all too familiar. The groups are often dominated by sad tales of failed meds, noncompliance and hospitalization and anger. Kathy prefers structured psych-educational groups with a curriculum, as do I. And Kathy’s encounters with the grim realities of a piecemeal mental health system go on: unmonitored male nurses perfoming rape in the guise of an unauthorized cavity searches. The reality of a “..culture of mistreatment, incompetence and indifference..” entrenched in many of our underfunded mental health units.
The reality of our mental health care system is made up of budget cuts and neglect. With the advent of effective new psychotropic drugs, the psychiatric hospitals were closed and the mentally ill people were turned out onto the streets. As Ms. Brandt says, there was supposed to be a coordinated, nationwide community mental health system created in the United States in place of the old centralized psychiatric hospital system, but that was never funded.
Michael Fitzpatrick of the National Alliance on Mental Illness says poor policy regarding mental health care has left our emergency rooms, the criminal justice system (police, courtrooms and prisons), and the families of the mentally ill to figure out how to manage the burden of mental illness. Ms. Brandt notes that the Sheriff of Colorado Springs says he runs the biggest mental-health care facility in his county.
So, as this book vividly depicts, the insurance company is pressures the hospital to release and Max is discharged without being stabilized. And he is released to his family, still delusional, with a brown paper bag of pychotropic drugs that barely manage his symptoms. As she says, more than once, the insurance companies expected her loved one to got from “..utter psychosis to functioning citizen in a matter of days.”
And the civil liberties laws written for the mentally ill are unrealistic and impractical when it comes to actually understanding and helping the very people whose rights the laws are supposed to be protecting. In order to be legally committed to a psychiatric hospital, the laws in most states state that the person must be a danger to himself or others, or no action can be taken. From my clinical experience, this is not enough. And from Kathy Brandt’s viewpoint, the law isn’t adequate to help the families who are trying desperately to get their loved ones hospitalized and helped as they decompensate into psychosis.
I loved this book as Max and Kathy give us a realistic view of what living with bipolar 1 disorder is like. It’s a world I know of from the professional side of the fence and one that I can empathize with clients and families.
This work is a valuable contribution to the lived experience of a family as the they struggle to cope with bipolar 1 disorder in a loved one. The authors seamlessly advocate for changes in the mental health system as they share their personal struggles.
For a description of the bipolar disorder, go to the NIMH website.