I’ve been talking and writing about our broken mental health care system and the need for change since shortly after our son was diagnosed with mental illness in 1999 and we began battling to find good treatment in that “system.” It’s been well over a decade now, yet nothing has changed. That we dare to call mental health care a “system” is laughable. After all “system” implies organization of services, coordination of care, and oversight. In too many cases, there are no services at all. And instead of care, there is only chaos. I’ve never understood how this could have happened—how we could be failing the mentally ill among us so completely.
E Fuller Torrey, in his recently released book, American Psychosis, has made it painfully clear. With uncompromising and fierce analysis and insight, he has explained how things went so wrong after JFK signed the community mental health act in 1963. The motivation for legislation was laudable, the outcome, however, was a disaster. Fifty years since, the mental health care system is in shambles.
Mental health hospitals had already begun closing in the 50’s and continued to do for many reasons—exposure of the horrible conditions and lack of treatment in some, new medications that brought the worst symptoms under control, changes in Medicare and Medicaid that disallowed coverage for psychiatric hospital care, lawsuits and changes in commitment criteria, and the feeling that there were better ways to treat those who live with mental illness. With the closings and the new law came a hopeful paradigm– community mental health centers would provide care in outpatient settings where those with mental illness could reengage as members of their families and communities. Continue reading
When my son was diagnosed with bipolar illness, he desperately wanted someone who would listen. Someone to acknowledge the validity of his experiences when he was manic, psychotic, depressed, someone to “meet him where he was in his illness.” I regret that I was not that person. I was so scared and confused myself that he didn’t wanted to share what might have scared me even more. And worse, maybe he thought that I just wouldn’t understand, that I would judge him. After all isn’t that what’s happening to most of those with mental illness? Why on earth would you want to talk about your illness if you risk being judged and stigmatized? As it turns out most don’t risk it. As a result, they are isolated and don’t seek treatment because they end up feeling ashamed and guilty.
What makes us resist hearing those who want to explain what’s happening to them? I think many of us are afraid—afraid, for example, that if we talk about the horrible pain of depression and possiblity of suicide, it becomes all too real and possible. If we talk about what one sees, hears, thinks, when manic or psychotic, we might encourage those experiences; if we ignore them we can snuff them out. But whether we acknowledge them or not, they are very real for those who are experiencing them.
This week, in conjunction with Mental Health Awareness Week, the New York City Metro chapter of the National Alliance on Mental Illness (NAMI) has launched a new campaign called “I Will Listen,” which asks us to pledge, in videos and Twitter posts, to Continue reading
How Many More Tragedies Will It Take?
Satirist Stephen Colbert (Comedy Central) had it right last week when he dissed all the talk about the failed security that allowed Aaron Alexis to get into the Navy Yard and kill 13 people. If only security had been tighter, he mused, that shooter would have gone somewhere else to unload his weapon on different innocent people. So let’s beef up security, lock our kids in schools with cops guarding the door, and hope that tragedy finds someone else.
Clearly our focus was in the wrong place. This shooting occurred because America loves her guns more than the lives of the innocent citizens they injure and kill – in military installations and movie theaters, at malls and universities, in high schools and elementary schools. Combine our access to guns with a horribly broken mental health care system and we have the perfect formula for tragedy. Continue reading
Ever since our book about surviving bipolar disorder was published, my son, Max Maddox, and I have been speaking to many, varied audiences about mental illness, telling our personal story about his illness and my role as his mom and advocate. As I speak from my perspective, I always talk about how difficult and sometimes impossible it was to find help and good treatment and how broken our mental health care system is. Max and our family have been lucky in that we’ve stumbled our way through, fought for what we needed, and sometimes succeeded in what always felt like a hit and miss process. Too often we missed. It took years before Max found a good doctor and the treatment that works for him.
I go on to tell those in the audience that too many aren’t as lucky. They never find access to treatment and as a result somewhere between 30-50% of those in our prisons suffer from mental illness and our jails have become our mental health care Continue reading
My son, Max, was diagnosed with Bipolar I when he was twenty. We’ve been on the bipolar rollercoaster for thirteen years now. Friends kept saying “You have to take care of yourself,” but really I just didn’t have the time. Until I finally realized that if I didn’t, I might collapse under the weight of fear for Max and the frustration at the roadblocks to treatment I encountered at every turn. I needed to find something that would ease my clenched jaw and the knot that always lay in the pit of my stomach.
A weekend yoga retreat close to home seemed a good place to start. It was a clear, sun-filled day when I reached the center. People were milling around talking, others were sitting, legs crossed, arms in lap. Some were stretching. A couple of women had gems glued onto their foreheads, reinforcing the feeling that I didn’t belong. But I found a place on the floor, facing a wall of glass that revealed a sweeping expanse of lawn that disappeared into the pines. Continue reading
How dare they? I am appalled by the recent cruel stereotyping of those with mental illness that has occurred in the media by two people who should know better. Last week on his TV show, Dr. Phil said that insane people “suck on rocks and bark at the moon.” And a few days later Brian Williams added insult to injury when he called the Cleveland kidnapper and rapist “the face of mental illness.” I know what the face of mental illness looks like. It looks like Winston Churchill, Isaac Newton, Abraham Lincoln, Van Gogh and Hemmingway. It looks like my son–artist, teacher, and writer. How dare Dr. Phil and Brian Williams insult those who live with mental illness? How could they be so ignorant and in the process harm so many? Continue reading
My son, Max, and I talked about our memoir, Walks on the Margins: A Story of Bipolar illness on Denver 9 News. Click on the video below.
Thank you to Kathyrn Eastburn and KRCC Public Radio for the wonderful review about our Mother/Son Memoir about Surviving Bipolar Disorder.
First published on KRCC Public Radio “The Middle Distance” July 5, 2013
The Contract of Your Birth
by Kathryn Eastburn
For the past few years, I have been part of a monthly lunch group of women who write, read and love books. When we get together, we begin talking about our work, but the conversation quickly shifts to family concerns: How are the kids? The elderly parents? Who’s having a baby? Getting married? Who’s got a new job?
Throughout this time, one of our group has been working on a book with her son who was diagnosed with bipolar disorder while he was a college student at Grinnell College in 1999. Kathy Brandt and Max Maddox’s collaboration is now published, following several years of writing, editing and rewriting, preceded by years of psychiatric crises that strained and stretched and ultimately fortified the bond between this remarkable mother and son.
Their story, Walks on the Margins: A Story of Bipolar Illness, told with brutal honesty, great skill and sweeping passages of lyric beauty, is nothing short of a landmark in the literature of mental illness. Continue reading
Robert Whitaker, author of Mad in America, spoke to a full house at the NAMI Conference in San Antonio on Saturday, making his case against the use of antipsychotics. For many his message was a hard one to hear. I was among them, a parent, whose son, Max, sat beside me. He’s been on and off antipsychotics for more than ten years to treat the psychosis that comes with his bipolar episodes. Whitaker was telling us that might have been a mistake. The key word being might. His review of various research studies seems to indicate that a significant percentage of those with schizophrenia who did not receive antipsychotics or took them for a very limited time had better long- term outcomes than those who took them on an ongoing basis. Continue reading
Why A Mom & Son Tell Their Story
Walks on the Margins: A Story of Bipolar Illness
The day I realized my son, Max, had bipolar disorder, he’d called at 5 a.m. and told me to turn on the television. The truth was in the programming, he said. A new world was emerging. Holding out hope that the world really had shifted and not Max, I turned on the TV. But I knew the idyllic family I discovered on a Leave it to Beaver rerun didn’t reflected the new world of which Max had spoken. Max was diagnosed with Bipolar I that afternoon. He was twenty and a junior at a small liberal arts college in the cornfields of Iowa.
Since that morning, I’ve spent hours on psychiatric units from Colorado to Philadelphia because I’ve never wanted Max to feel alone in his illness. I listened as words tumbled from my son’s manic being. I dug his ruined poems from the trash where he’d tossed them in disgust. For me, Max’s verse was a reminder of his promise and one of many souvenirs through the maze of bipolar disorder. I’ve sat with other patients too, whom I’ve come to treasure like characters in a novel—a patient who asked me to his senior prom and called me Ruthie; a tattoo-covered drug dealer who depended on the cinnamon gum he knew I always carried in my pocket.
And Max? He wandered the streets, always seeking something intangible and unknown. Of his illness he writes, “She was the promise, the one that could never be made good. But a promise so great that its very mirage crippled even the strongest of wills.” He returned to school the next semester, embarrassed by his failed prophesies and discomforted by the suspicious glance of friends. And of depression he writes: “Quick was the rant of suicidal Continue reading