Kathy Brandt's Blog, page 2

This is My Brave!

It takes a lot of courage to talk about your mental illness because there’s so much judgment and stigma.  But when we come out of the shadows and put a face on mental illness, misperceptions dissolve and the barriers of stigma begin to crumble. I’m asking people, who are ready, to tell their stories here on my blog.  It’s so fitting that my first guest is Jennifer Marshall, who is doing more than telling her own story, she’s producing “This is My Brave” and inviting others to step into the spotlight with her.   Jennifer is one brave and determined woman!  Welcome Jennifer Marshall.

I started blogging anonymously about living with bipolar disorder in 2011 when it was still considered fairly taboo to write (or talk) openly about mental illness. About the only mental illness you’d hear discussed was postpartum depression, and even then it was somewhat of a hush-hush topic

 Times are definitely changing although the stigma surrounding mental illness still lingers. I was nervous beyond belief earlier this year when I decided to reveal my true identity online after accepting my first paid writing job. I was being recognized for my writing – specifically – the experiences and feelings I was sharing regarding my life as a wife and mom with bipolar disorder parenting two small kids.

I braced myself for backlash, but instead received nothing but praise and positive feedback from friends, family and people I had never met but who had read my story on the cover of the AOL homepage that April morning. It was obvious I had made the right decision to open up about my story.

 Eight years ago this December, I experienced a manic break and was hospitalized. After returning to work for two weeks, I relapsed and again had to spend time in the psych ward. A few months later I was diagnosed with Bipolar Disorder – type 1. I spent the next year and a half in a deep depression, mad at the world for having to face life with a mental illness. With a great deal of hard work and unwavering support from my husband and close family and friends, I was able to pick myself up and make a new start. I learned how to live with what I was dealt. But I still only shared details of what I had been through with those in my inner circle. The stigma was too scary.

 In 2008, after a medication-free pregnancy with my first child, I experienced postpartum psychosis and had to be hospitalized for a week and missed out on an entire week of my newborn son’s life. After coming home and stabilizing with the meds my doctors prescribed, about a year and a half later I had my most recent manic episode and hospital stay when I was just 5 weeks pregnant with our daughter who is about to turn 3 years old next month. All four times I was unmedicated – twice because it was too early to tell what was going on and twice because I was protecting my babies.

 These days things are a lot more stable in terms of my mental health. I’ve committed to my treatment plan of medication, regular psychiatrist and therapist appointments, healthy eating, exercise and protecting my sleep. I’ve found an outlet in my writing and my passion for advocating for mental health awareness. It’s my dream to live in a world where those of us who live with a mental illness are no longer afraid to talk about our struggles.

To help people realize the power of sharing personal stories, I’ve created a show called This Is My Brave which will debut in the Washington, DC area during Mental Health Awareness month next year. May 18th, 2014 will be a day to remember. The stage will be filled with brave individuals who have chosen to be vulnerable and share their stories of hope and inspiration to help others. This Is My Brave will be a 90-minute theater production showcasing personal essays, original music performances and slam poetry by individuals living with {or affected by a close friend or family member living with} mental illness.

 My Associate Producer, Anne Marie Ames, and I just wrapped up our Kickstarter campaign through which our supporters came together and raised over $10,000 for This Is My Brave and our mission to silence stigma by shining a spotlight on mental illness. Our show is based on the simple belief that one person can make a difference. One voice speaking openly about mental illness begins to chip away at the stigma. Visit thisismybrave.com to find out how you can join the conversation.

 

 

 

 

Memoir by Mother & Son Featured in National Mental Health Magazine

Max and I are pleased that SZ Magazine has featured our book, Walks on the Margins: A Story of Bipolar Illness, as the cover story this month.

Book Review of “American Psychosis” by E. Fuller Torrey, M.D.

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.

Why was the plan such a failure?  The legislation, says Torrey was fatally flawed.  “It encouraged the closing of state mental hospitals without any realistic plan regarding what would happen to the discharged patients, especially those who refused to take medication they needed to remain well. It included no plan for the future funding of mental health centers.  It focused resources on prevention when nobody understood enough about mental illnesses to know how to prevent them. And by bypassing the states, it guaranteed that future services would not be coordinated.”

The failure of the community mental health care program was due to more than just poor planning and lack of funding.  For me, the most troubling was the changing philosophy of those who were charged with leading the program.  As plans were being formulated, their focus shifted from the care for those with severe mental illness to one of prevention, which in turn became a movement to address our social and cultural ills in order to promote mental health.  Admirable perhaps, but such grandiose notions were far beyond the scope of community mental health centers that were supposed to serve those with mental illness. The change in thinking, Torrey says, altered the essential function of community treatment.

Many of those who were released from hospitals were severely ill, didn’t have family support, had chronic long-term needs, and had no place to go.  Says Torrey, “Our failure to protect such mentally ill people by insuring they receive treatment is a major miscarriage of our mental health care system and a blot on our claims to be civilized.”  So many ended up homeless and in jail and the travesty continues to this day.  The result?  The largest mental health providers in the nation are our prisons and jails: Cook County in Illinois, Los Angeles County, and Rikers Island in New York among them.  The complete failure of mental health care in this country is a sad commentary on how personal biases and ambitions, wrong headedness, and political aspirations can shape policy and impact people in such devastating ways.

In the last chapter Torrey acknowledges that change does not come easily. Progress is impeded by the lack of understanding of serious mental illness, failure to understand the magnitude of the problem, economic and political interests, and the lack of leadership.   However, “the fact that we know what to do to correct the existing mental illness diaster is the good news,” he says.  He explains how we can incorporate what we’ve learned into successful programs.  When we know how and why the system fails and when we look at what successful treatment looks like, as Torrey does, then we can begin to work to achieve it.

Torrey concludes his book with a 1947 quote from Out of Sight, Out of Mind by Frank Wright:

“Throughout history the problem of the mentally ill has been dodged. We have continually avoided mentally ill patients—we have segregated them, ostracized them, turned our back on them, tried to forget about them.  We have allowed intolerable conditions to exist for the mentally ill through our ignorance and indifference.  We can no longer afford to ignore their needs, to turn a deaf ear to their calls for help.  We must come face to face with the facts.”

“Isn’t it time to finally do so?”  Torrey asks.

I urge anyone who is concerned about the current state of mental health care to read this book.  And I thank Dr. Torrey for writing it.

E. Fuller Torrey, M.D., is the Executive Director of the Stanley Medical Research Institute in Chevy Chase, MD, founder of the Treatment Advocacy Center, and Professor of Psychiatry at the Uniformed Services University of the Health Sciences.

 

 

 

NAMI Campaign Asks Us to Listen to Those With Mental Illness

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 listen with an open heart to anyone struggling with mental illness.  The objective of the campaign is not to reach the one out of four who experiences a mental health disorder each year, but rather to reach everyone else who can and should support them.

A public service video for the campaign features Michael Thompson, a former president of the New York City Metro chapter, who says, “It was my older brother, Tom.  When I would visit him occasionally, he would talk about things that didn’t make sense to me. I got a call.  And — and my brother killed himself.” He feels he could have done more. At the end of the segment he says, “I’m Mike Thompson, and I will listen.”

The “I Will Listen” campaign challenges negative stereotypes by encouraging the public to make videos pledging to listen to those affected by mental illness without judgment. Says Wendy Brennan, Executive Director, NAMI-NYC Metro. “What is extraordinary about the I Will Listen Campaign is that everyone, no matter where they are or their experience with mental health issues, can participate in a dynamic dialogue surrounding mental health by committing to listen to those who suffer. By promising to listen, we can really change society’s perceptions about mental illness.”

You can promise to listen at: IWillListen.org

 

 

 

Stephen Colbert Had it Right

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.

Aaron Alexis’s story is so sadly familiar—a man with mental illness, untreated and ignored when all the warning signs were there.  Why didn’t the police take him to a crisis center or hospital after he called for help when he heard voices and threats emanating from a microwave.  Could it have been any more obvious that he needed treatment?  And what about at the VA hospital where he went asking for help?  Again, the severity of his condition went either unrecognized, minimized, or ignored by professionals who should have known better.

We’ve heard Alexis’s story before – James Holmes in Aurora, Adam Lanza in Newtown, Jared Loughner in Tucson and so many others. When are we going to do something about it?  When will we have the courage to pass strict gun control legislation in spite of powerful lobbies and misguided ideas about the Second Amendment—too often an excuse rather than a reason to own a gun?  When will we have the wisdom to fund mental health care instead of continuing to cut it and when will we have the compassion to treat those with mental illness instead of leaving them to flounder?  When will we find the courage and wisdom to do what’s not only right, but smart?  How many more tragedies will it take?

 

 

I Love Stephen Colbert

I love Stephen Colbert.  Last night he talked about all the discussion surrounding the failures of security procedures that allowed Aaron Alexis to get into the Navy Yard with a gun and kill 13 people.  If only that security had been tighter, he mused, that shooter would have gone somewhere else to unload his weapon on different innocent people.  So lets beef up security, lock our kids in schools with cops guarding the door, and hope that tragedy finds someone else.

Clearly the focus is in the wrong place.  This shooting occurred because America loves her guns even though they injure and kill her citizens – in military installations and movie theaters, at colleges and universities, in high schools and elementary schools, and yesterday on a basketball court in Chicago where a three year old child was shot in the head.

Mix the access to guns with an inaccessible and broken mental health care system and we have the perfect formula for tragedy.   Aaron Alexis’ story is so familiar—a man with mental illness, untreated and ignored when all the warning signs were there.  Left to figure it out himself after he’d called police about voices and being harassed through a microwave.  Why didn’t they take him to a crisis center or hospital? Could it have been any more obvious that he needed treatment?  He’d also been to the VA hospital asking for help.  Again, the severity of his condition went either unrecognized, minimized, or ignored by professionals who should know better.

When will we have the courage to pass strict gun control legislation in spite of powerful lobbies and misguided ideas about the Second Amendment—too often an excuse to carry a gun than a reason?  When will we have the wisdom to fund mental health care instead of continuing to cut it and to treat those with mental illness instead of leaving them to flounder?  When will we find the courage and wisdom to do what’s not only right, but smart?

 

 

 

Is Our Mental Health Care System Getting Better or Worse?

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 institutions.  It costs us plenty—certainly it costs the taxpayers for the exorbitant and rising costs of housing prisoners — worse is the cost for those the mentally ill who languish in jails, untreated and isolated.   Others who live with untreated mental illness end up homeless (an estimated 25%).  It’s a tragedy that so many with mental illness are never able to reach their full potential and join their rightful place in our communities.

When we ask for questions, someone in the audience always asks, “Do think the mental health care system is improving?”

I hate that my answer is “No.” That funding for mental health care continues to be cut instead of increased.  That the past ten years have seen some of the biggest cuts in history.  That sequester has only made it worse. (I wrote a blog about the effects of sequester on those with mental illness a few months ago.)  I don’t like answering with such pessimism so I go on to say that I find hope in grassroots movements and non-profits like NAMI (National Alliance on Mental Illness), Mental Health America, and DBSA (Depression and Bipolar Support Alliance) who lobby in Washington and who provide support for those with mental illness and their families.  And I find hope in the fact that many of those with mental illness and their families are speaking out.  I think that’s huge.

But my answers never feel adequate or encouraging enough.  I wish that I could be more hopeful.  Which brings me to the heart of this blog post:

I’d like to hear from others who have been involved with the mental health care system.  What would you say if someone asked you whether things in mental health care are improving?

I hope you’ll comment here or contact me at my website: www.kathybrandtauthor.com

 

Is Our Mental Health Care System Improving?

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 institutions.  It costs us plenty—certainly it costs the taxpayers for the exorbitant and rising costs of housing prisoners — worse is the cost for those the mentally ill who languish in jails, untreated and isolated.   Others who live with untreated mental illness end up homeless (an estimated 25%).  It’s a tragedy that so many with mental illness are never able to reach their full potential and join their rightful place in our communities.

When we ask for questions, someone in the audience always asks, “Do think the mental health care system is improving?”

I hate that my answer is “No.” That funding for mental health care continues to be cut instead of increased.  That the past ten years have seen some of the biggest cuts in history.  That sequester has only made it worse. (I wrote a blog about the effects of sequester on those with mental illness a few months ago.)  I don’t like answering with such pessimism so I go on to say that I find hope in grassroots movements and non-profits like NAMI (National Alliance on Mental Illness), Mental Health America, and DBSA (Depression and Bipolar Support Alliance) who lobby in Washington and who provide support for those with mental illness and their families.  And I find hope in the fact that many of those with mental illness and their families are speaking out.  I think that’s huge.

But my answers never feel adequate or encouraging enough.  I wish that I could be more hopeful.  Which brings me to the heart of this blog post:

I’d like to hear from others who have been involved with the mental health care system.  What would you say if someone asked you whether things in mental health care are improving?

I hope you’ll comment here or contact me at my website: www.kathybrandtauthor.com

 

Taking Care of Yourself When Your Son Has Bipolar Disorder

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.

Pretty soon fifty some people sat around me as Yogi Amrit Desai otherwise known as Guredev appeared. He wore a white silk tunic and flowing pants, a red sash with gold embroidery draped across his shoulder, salted black hair brushed back in waves over his shoulders. He bowed, a smile lighting his face and began speaking about Kirpala Yoga—meditation in motion. He told us that painful transition periods, relationships, and crises can become opportunities and openings for personal transformation. Personal transformation sounded like a good step toward taking care of myself, so I did the yoga poses and listened to his advice. “This is not a fight with your body or your mind,” he said. “Let your muscles gently release. Just let go.”

It was a good weekend and I felt better than I had in months—calmer and more centered. So I made an appointment with one of the rolfers who attended the conference, thinking maybe he could dig deeper into my muscles and bones and push on my pain so hard that it would dissolve. It was painful, extremely painful. “Relax into it,” he told me. After each session, I sat out in my car and took stock. My muscles felt like tenderized beef except for the ones that held my teeth locked together. After ten treatments, I wasn’t the new person I had hoped and I’d spent far too much money.

The next logical step was the more conventional appointment with a psychotherapist. She was patient and sympathetic. We spent hours talking. It felt good to unload on her. I’d never trusted anyone enough to tell the full story. But talking didn’t relieve the deep-seated fear that I could lose my son. She opened a book of healing strategies and we tried a few that were supposed to break me out of this “fixed behavior.” After each session, she asked me if I noticed any changes at all.

“Maybe I feel less tension.” I lied because I felt like a failure, and I didn’t want her to feel the same way.

Looking back, I realized that I was simply not capable at the time of letting go. Maybe it felt too much like not caring, not being a good mother, not trying to make things right for my son. Maybe taking care of those you love is a way to take care of yourself I rationalized. And I was convinced that if I looked hard enough and long enough, I would find the right doctor, the exact treatment program that would save Max. But of course, it was never that straightforward.

Now, thirteen years later, I better understand what I can and can’t do. I see that accepting the things you can’t change does bring serenity. So much was in Max’s hands and it has taken us both years to accept and understand his illness. Understanding came for Max through the experiences of his episodes and with the help of a couple of good doctors and therapists, and with family support.

For me coming to terms with bipolar disorder involved getting educated. I took classes through NAMI (National Alliance on Mental Illness) and found support from other families who were struggling with the same issues I was. And I learned how to be an effective advocate for Max and eventually for others who live with mental illness and for the people who love them. There’s nothing like action, like doing something about your pain, fear and frustration to help you heal.

Max and I have written and published “Walks on the Margins” about the years of trauma. Telling our story helped us understand the illness in ways we never had and it helped us make sense of the chaos and confusion inevitable in mental illness. Now we speak openly and honestly about our struggles. It’s surprised us both at how liberating and healing speaking and writing about our experiences has been especially when we can see how it helps others.

If you live with mental illness like Max and our family does, you know that healing and recovery can be fleeting. You know that things can fall apart because though recovery is possible, cures aren’t. We’ve learned to live with and accept uncertainty.

By the way, I’m still doing yoga too!

Dr Phil & Brian Williams Stigmatize Those with Mental Illness

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?

Thank you to Michael Fitzpatrick, Executive Director of NAMI, who has responded for NAMI:

“It has been a bad two weeks for Americans with concerns about the stigma that surrounds mental illness. For all the progress that has been made in recent years, Dr. Phil of the CBS Distribution Network and Brian Williams of the NBC Nightly News, through televised comments, perpetuated cruel and inaccurate stereotypes about people living with mental illness.

Dr. Phil said that people who are insane ‘suck on rocks and bark at the moon.’ Mr. Williams called Ariel Castro, the Cleveland kidnapper and rapist, ‘arguably the face of mental illness,’ violating journalism guidelines against speculative diagnoses and ignoring the fact that the vast majority of people living with mental illness are not violent.

NAMI shares the outrage of many people over these remarks. More importantly, we are surprised and disappointed over their source. Both Dr. Phil and Mr. Williams have been sensitive to some mental health concerns in the past. We expect better of them and they should know better. We hope to pursue dialogues with them to renew their concern.

It is especially ironic that the statements have come just one month after President Obama’s White House Conference on Mental Health launched the current National Dialogue on mental illness. The U.S. Surgeon long ago reported that stigma is a major barrier to people seeking help when they need it—and impedes recovery when it is internalized. As the President noted, our country must remove the ‘embarrassment’ associated with mental illness.

‘We’ve got to get rid of that stigma,’ the President declared.

NAMI calls on both Dr. Phil, Mr. Williams and their television networks to join in that effort and participate constructively in the National Dialogue.”