Listening as a Sacred Art

By Alice A. Holstein, Ed.D.

aholstein@centurytel.net  www.aliceholstein.net

The fact that I was asked  to say a few brief words in April about my experience with mental illness to hospital clinicians where I am on an advisory board to the Behavioral Health unit, prompts me to share several of my experiences where the fact that someone listened to me was life-giving if not life-saving.  Listening is such a simple thing, you say?  My experience is otherwise. Instead, we are full of advice, argument and judgment. When we are truly listened to, however, from the heart and sometimes with the specific skills of “active listening,” profound healing is possible. Newfound strength and empowerment can occur.

My experiences suffering with bipolar mood disorder include some dramatic examples, partly because I lived sometimes on the streets when I was really sick (not because I was truly homeless but because I was either separated from my assets or too paranoid to tap them).  One of those times was after I had been released from the hospital after a manic episode. Upon discharge, they did not ask me where I would be staying, and I was still somewhat delusional, so I did not have the capacity to think clearly for myself.  I was on foot, without such things as credit cards or money.

The night (in La Crosse, WI) was chilly and rainy.  I knew I needed help, but newly arrived in my hometown after 40 years absence, did not know how to meet that need. After stopping at one place where there was “no room at the inn,” I was referred down the street to St. Rose convent late in the evening. Fortunately, they let me in through their locked door and then they called one of the Franciscan sisters to the receiving room.  Immediately I told her that I thought I was going to die and needed some help to arrange for some of my possessions, such as valuable jewelry, to be sent back to my Tucson home and the executor of my estate. I think the sense that I was going to die came from two sources; one was that I had been off my thyroid meds for some 5 months, which is life-threatening, and the other was that being back in my hometown signaled the fact that I was dying to an old, sick self that had finally found some safety in this place that had been the last one I had ever wanted to live.

The nun just listened to me.  She did not try to talk me out of that story, nor to give advice.  She merely listened with careful attention, holding my hand at one point and praying with me. She had no solution to my dilemma of a place to stay, but I was somehow strengthened enough to go back out into the rainy night and make my way to a Catholic Worker house nearby.  It was closed, but there was a small children’s playhouse in the backyard where I curled up and fell asleep. The next morning, when they opened, I proceeded to use their phone to begin making arrangements for temporary housing.  I was restored enough to health to begin making rational decisions about how to help myself.

Another time a nurse who knew how to listen silently, with great compassion, made a huge difference to my well-being.  I was in the hospital on a Chapter 51 commitment (where you are judged a danger to yourself or others), dealing with an authoritarian doctor who would NOT listen to me about how sensitive I am to medications, which he was prescribing in heavy doses. He proceeded to threaten me with sentencing to the state mental institution for several months, which would have been a disaster since I lived alone without anyone I could ask to run my life while I would be gone.  Besides that, I felt as though I did not need his solution. I asked for a change in doctors, but he denied the request.

 I ended up sobbing in utter despair at the nurse’s station. The nurse did not speak one word to me. She too just held my hand and merely, but hugely just listened. There was no advice nor direction given, but I could feel and almost taste her compassion. Eventually I was able to return to my room where I had the strength to call for the patient advocate.

With the advocate’s help I was then able to document my situation and the course of these patient-doctor conversations strongly enough that the lawyer who was to assist with the Chapter 51 hearing put me on the stand in my own defense. The judge subsequently ruled that the doctor-patient relationship was broken; I was awarded the opportunity for a new psychiatrist. That nurse saved me from a traumatic, costly, demeaning and unmanageable situation.  I can remember us sitting in the nursing station as if it was yesterday.

Both of these situations speak for themselves.  Listening, without judgement, with compassion and love, is a sacred art. I think it is rare in this world, but whenever I was just listened to in such a way, I was validated and able to “return to my normal self” more quickly. I think we have hundreds of opportunities to listen effectively in a day or a week, but seldom do we realize how healing and life-giving that can be.  Such listening with full presence is somewhat of an invisible thing, and we seldom get thanked for it, yet we usually feel enlivened and understood at new levels when deep listening happens. That requires suspending your own opinions while you are fully “with” another.  It takes discipline, skill, practice and loving intention. When have you been the recipient of such a gift?  How well do you give it to others?

The Unitarian Effort in Helping to Reform Minnesota’s Mental Institutions 1946-1954

by Rev. Barbara F. Meyers

I have recently read a fabulous book that shows what committed religious people can do to reform mental health practices.  It is The Crusade for Forgotten Souls – Reforming Minnesota’s Mental Institutions 1946-1954, by Susan Bartlett Foote, university of Minnesota Press, 2018. 

It tells the fabulous story of how Unitarians in Minnesota helped to reform mental institutions in the mid-1900’s.  After pioneering work for documenting what was happening in Minnesota’s mental hospitals by members of his congregation who were horrified by snake-pit like conditions, the Rev. Arthur Foote minister of the Unity Unitarian Church in St. Paul, Minnesota was able to get the ear and the trust of the governor of Minnesota, Luther Youngdahl, and mental health reform became Youngdahl’s most important political policies.  

The reforms dealt with more funding, lower case loads, better training for workers in the hospitals, getting rid of restraints, better food and more social programs.  The reforms also involved people from the public visiting patients at the hospitals and bringing the true stories of what was happening into the public view – speaking truth to power.  Rev. Foote was very involved in all of the presentations to the governor and legislature to get these reforms identified and passed.

However, many of these reforms were later overturned by tightfisted conservative politicians and bureaucrats after Youngdahl left office.  But, as Susan Bartlett Foote points out, many important lessons emerged and live on:

  • it gave voice to the voiceless;
  • it helped define a modern mental health system to deliver care;
  • it showed what principled advocates could accomplish. 

Important considerations for success were:

  • effective political leadership is essential;
  • realize that the policy process is fickle;
  • trusted voices of citizen advocates are important;
  • the press can play an important and constructive role in shaping public discourse. 

The book’s most important conclusion is a quote from Luther Youngdahl: “The protection of the patient depends on our eternal vigilance.” 

This book should be required reading for all who are interested in mental health reform, and especially for Unitarian Universalists.

I have written to the author and hope to talk with her about the importance of this book to our future.   As a side note, Arthur Foote was the former father-in-law of Susan Bartlett Foote and she came by most of the information in the book from notes that she found in a closet of her house that he had left there.  She also did masterful research on the issue in many archives.  A first class book! 

I wish to thank Janet Holden for pointing me at this book.  I notice that there is a review of the book in the March 2019 issue of The UU World.

A Tragedy in the Family – My journey as a mental health advocate

by Steve Boczenowski

Early last year, my wife of 40 years, Deb, & I, who have lived our entire lives in the Commonwealth of Massachusetts, moved to New Hampshire.  After taking some time to set up our new home and get acclimated to the neighborhood, I started to venture out to make connections into my new state’s mental health community.  Last month, I found myself testifying to the state Senate Health and Human Services Committee in support of legislation which would increase access to mobile response and stabilization services.  Here is how I began my testimony: “My name is Steve Boczenowski and I’m a regular guy.  I love the Patriots and the Red Sox.  I love my wife and children and grandchildren.  I go to church most Sundays, exercise regularly, and love to work in my yard.  I’m just a regular guy.  But this regular guy’s life changed very dramatically on December 1st, 2009.  On that day, my 21-year-old son, Jeffrey, took his own life.”

This is just the latest step on my journey as a mental health advocate.  I was reminded recently of the first step that I took on that journey.  It was an evening in May, just six months after Jeffrey had died, when Deb & I and a group of friends organized a forum as a community response to the tragedy that had befallen us.  Jeffrey’s death was still very fresh to us that night and this is how Deb & I chose to describe our beloved son in that moment:

As a child, Jeffrey was full of life.  He had a mind of his own and a jolly laugh that just made you smile.  He could be intense, or he could be pensive, but he could also seize moments with a sense of joy and wonder.  He was always an independent thinker and exhibited true bravado, but he also always deferred to the wishes of his older sister.  Jeff was a sensitive soul, a bit quirky, but was a very charming young lad.

As Jeff grew older, he kept these same traits, but his sensitivity proved to make his life painful at times.  In the 3rd and 4th grades, despite being a good student he would ask repeatedly if he were going to pass or be kept back.  As a ten-year-old on his first real baseball team, his coaches thought he showed promise so they batted him lead-off in the first game; but after striking out four times, he was devastated and didn’t swing the bat again for many games thereafter.  He hated family disagreements, and worked hard to please his parents.

As he entered puberty, his moods turned darker.  He dressed in black and brown, grew his hair long, and his moodiness increased.  Always a shy boy, Jeff turned even more inward; he lost his love of sports and would frequently question the motives of his teachers.

Throughout all this, we, his parents, stayed involved in his life: Deb led a Camp Fire group and taught Sunday School classes; Steve coached him year after year in basketball and soccer.  We had dinner together most nights, helped Jeff with his homework, and always stayed in touch with Jeff and his friends.  We participated in many family activities including church, visits to grandparents, and family vacations.

Despite our best effort, Jeffrey took his own life late last year.  And we are left to ask ourselves why.

We mourn the loss of our son.  We have many unanswered questions.  But in the final analysis, the answers to those questions will not bring Jeff back to us.  And while we miss him terribly, it is our hope that Jeff’s death will not be in vain.  We hope to use his story to help to educate parents and their children so that they might pursue appropriate treatment if they experience mental illness.  That’s what tonight is all about.

The goal of that well-attended forum was to provide useful, practical guidance for parents.  We spent a lot of time figuring out how to best meet that goal and we decided that Deb & I would share anecdotes from our experiences with Jeffrey to identify obstacles that we encountered in getting Jeff the treatment he needed.  We also recruited two local treatment providers who discussed the obstacles we described and then proposed solutions that parents could employ.

Our group of organizers got together a few days after the forum to debrief and we were all quite enthused at what we were able to accomplish.  We decided to keep working together and we named ourselves Teenage Anxiety and Depression Solutions (TADS).  All of our group had some connection to mental health: some as parents, some as school guidance counselors, first responders, an emergency room mental health triage, and a clinician in private practice.

Meanwhile, Deb & I were doing the work of managing our grief.  We attended suicide loss support groups and did some reading.  We also reached out to the Massachusetts suicide prevention community, the Massachusetts Suicide Prevention Coalition (MCSP), which provided us with a good deal of education and support.  Through our participation with MCSP, we were able to make very good connections, which informed our work with TADS.  Nine years later, I realize that my work with TADS was an important part of working through the grief of losing my son.

But in those early days, we needed to figure out how to shape our work with TADS.  (We also took the necessary steps of becoming a 501(c)3 non-profit organization so that we could raise funds.)  We knew we wanted to leverage our story to help people, but I felt strongly that just telling my story was not enough.  Sharing a story raises awareness, which is helpful, but there is more to addressing the problem than just raising awareness.  From my perspective, parents are largely ignorant about mental health issues.  What does depression and anxiety look like?  What are symptoms that we can observe?  What’s important and what’s not?  So, beyond raising awareness, from the beginning I felt that it was important to help educate parents.  For several years, I would insist on sharing my story only when accompanied by a mental health professional.  (After listening to experts for a few years and attending several seminars on mental health, a widely-respected clinician assured me that I had developed sufficient background to provide the education piece myself.)

Also, from the beginning, Deb, an 8th grade math teacher, felt strongly that we needed to help middle schools and high schools educate their students about the perils of mental illness, including (but not limited to) suicide.  In those first few months of participation within MCSP, we encountered an organization called Screening for Mental Health which had developed an evidence-based suicide prevention curriculum for middle schools and high schools known as Signs of Suicide (SOS).  (Screening for Mental Health has recently been renamed to MindWise Innovations.)  Beginning in September, 2010, TADS annually hosted free one-day suicide prevention training for educators by hiring trainers from Screening from Mental Health.  More recently, Deb & I have received training to become certified trainers for the SOS curriculum and provide the training ourselves.  Over the past nine years, we have trained over 500 educators.

But awareness and education were still not enough.  The message that I would provide parents went something like this: Here’s what happened to our family; if you see these signs in your child go and get help!  But go and get help is a really difficult task for parents.  Because of the stigma associated with mental illness, it is not part of our public discourse.  I would tell people, if my son had a knee injury from soccer, I could go to the school bus stop and ask for recommendations for a good orthopedist; but when your son has depression, you don’t feel comfortable asking other parents for a recommendation for a good therapist.  Consequently, we struggle.  I remember accessing my insurance company’s list of therapists – names and contact info for local therapists, but with no other information or details.  As I stared at the computer screen, I wondered if I could trust any of these individuals, unknown-to-me, with the health of my child.  Recognizing this shortcoming, the newly formed TADS board started to discuss the best way to compile our own list of local therapists.  We were aware that compiling such a list would be difficult and it would soon fall out of date.  And we wondered if such a list would be sufficient – would it aid parents in finding a good match for their child, which is critically important in providing quality mental health care.

Then one afternoon, Deb & I were helping out at a local mental health fair and we encountered an organization that had already performed much of this difficult work and provided a telephone service to make quality mental health care referrals.  This service, INTERFACE, was provided by William James College, a graduate school for psychology majors and used graduate students to staff the telephones.  (INTERFACE is available only in Massachusetts.)  In a nutshell, the INTERFACE Referral Service provides personalized counseling referrals matched for location, specialty and insurance.  No fee is charged to the individual making the call, but the community licenses with William James College to provide this service for their residents.  Over the next few years, TADS raised funds to pay for this service for several area towns, and then convinced the local municipalities to pay the annual service fee with public funds.  We also advocated on behalf of INTERFACE to other cities and towns in Massachusetts.

Thus, our mission was complete: TADS addresses mental health issues, especially among young people, by raising awareness, providing education, and enabling access to care.

In subsequent blog posts I will describe some of the highlights of our work with TADS and where our journey has led us.

 

Getting Serious About Mental Health in California

By Rev. Barbara F. Meyers 

California’s new governor Gavin Newsom has pledged to get serious about addressing mental health needs in the state.  You can read his full statement at: https://medium.com/@GavinNewsom/getting-serious-about-mental-health-8c09ad95a5ae

Here are some highlights:

  • We know how to deliver wraparound services on the back end of care that can transform lives. And — more importantly — we know how to deliver intensive services on the front-end, treatment that can stem the course of serious brain illness, including schizophrenia, before it becomes disabling. 
  • My administration will prioritize prevention and early intervention, and pursue a system of care in which the goal is to identify and intervene in brain illness at Stage 1, just as we do for cancer or heart disease.
  • We will scale up alternative sentencing options, including successful models of mental health and drug courts. And we will increase resources for specialized mental health units in our prisons and jails, as well as transitional housing that provides support and treatment upon release.

He has appointed a consumer-friendly adviser to help implement this vision.  It is probably going to be harder than it looks right now, but I applaud the effort and the tenacity it will take to make it happen. 

I especially like the fact that this initiative was one of the ones announced in his first speech on what he will do as governor. 

I view this all as positive and I hope that as it succeeds, it catches on elsewhere. 

New Effort in Suicide Prevention Announced

By Rev. Barbara F. Meyers 

I have learned of a new effort in suicide prevention that needs to become well-known.  It is called Project 2025 and is a nationwide initiative to reduce the annual rate of suicide in the U.S. 20 percent by 2025.  The organization sponsoring it is the American Foundation for Suicide Prevention. 

This is the most comprehensive, multi-organizational approach to suicide prevention I have seen.  And, I applaud their efforts.

Here is some of their material explaining Project 2025:

Despite the fact that more is being done today to prevent suicide than at any other time in history, the rate of suicide continues to rise in the United States. Led by the largest suicide prevention organization in the United States, with guidance from the top minds in the field and dynamic data modeling, the American Foundation for Suicide Prevention has determined the programs, policies and interventions that will prevent as many suicides as possible. Project 2025 is the collaborative effort to implement and scale these strategies nationwide.  

Four critical areas have been identified to save the most lives in the shortest amount of time:

  1. Firearms: More than half of all gun deaths in the United States are by firearm.  By working with key partners, we can educate the range, retail, and broader firearms-owning communities on how to spot suicide risk, and know what steps they can take to save lives.  If half the people who purchase firearms are exposed to suicide prevention education, we can expect an estimated 9,500 lives saved through 2025.
  2. Healthcare Systems: Project 2025 is collaborating with the country’s largest healthcare systems and accrediting organizations to accelerate the acceptance and adoption of risk identification and suicide prevention strategies we know work.  By identifying one out of every five at-risk people in large healthcare systems – such as during primary care and behavioral health visits – and providing them with short-term intervention and better follow-up care, we can expect an estimated 9,200 lives saved through 2025.
  3. Emergency Departments: Basic screening and interventions can provide a safety net for at-risk patients seen in emergency departments.  Project 2025 is educating emergency medicine providers, and collaborating with key accrediting and professional organizations to improve the acceptance and adoption of suicide screening and preventative intervention as the standard in emergency care.  By screening one out of five people seen in ERs, and providing short-term interventions such as Safety Planning and follow-up care, we can expect an estimated 1,100 lives saved through 2025.
  4. Corrections Systems: We need to change the culture of suicide prevention in our country’s jails and prisons.  By screening for and identifying 50% of at-risk individuals at key points within the corrections system, such as at times of entry and exit, and delivering comprehensive care that addresses both physical and mental health, we can expect an estimated 1,100 lives saved through 2025.

 By partnering with organizations in these four areas, we CAN achieve our goal of reducing the annual suicide rate 20 percent by 2025 making it the lowest it’s been in 30 years.

Unitarian Universalist Mental Health Network

By Rev. Barbara F. Meyers

The time has come to start a Unitarian Universalist Mental Health Network.  In the past several months I have been independently contacted by a number of people interested in doing some form of mental health ministry in a UU context.  After having conversations with these interested folks, we have collectively decided that we should band together and start an organization that will promote the inclusion of people affected by mental health issues in the life and work of our congregations, and by extension in society at large.

We have created a mission statement for our endeavor:

The UU Mental Health Network promotes inclusion of people affected by mental health issues in the life and work of our congregations and in the society at large.

We seek to do this by creating a network that is:

  • a supportive community of people affected by mental health issues
  • recognized as an identity group whose opinion is sought out when issues about mental health in congregations come up
  • a repository of information and resources about mental health
  • an advocacy organization when the rights of people with mental health issues are under attack or when discrimination and prejudice is occurring
  • an organization that will advocate to improve access in the United States to adequate, appropriate and compassionate treatment.
  • an advocate for needed resources that are NOT available, and to the appropriate resources intact during budget cuts
  • an advocate which seeks to remove the profit motive from the healthcare industry
  • an advocate for mental health consumers being fully informed and full participants in their own treatment
  • a vehicle for publishing views on mental health issues from different points of view
  • a way to purposefully address unique mental health issues in marginalized populations: ex: people of color, LGBTQIA, prisoners, co-occurring disorders…
  • a source for providing and encouraging education about congregational mental health issues to UU congregations
  • a resource for congregations when a mental health-related issue arises
  • a partner with mental health networks of other faith traditions, to share ideas and work together on our common goals

We are still in formation and have not yet decided on organizational and governance issues.  We welcome participation by others who are interested in helping us create this organization and get it off the ground.  If you are interested, you can send an email to admin at uumentalhealth.org.

Mental Health First Aid

By Michelle Wagner

Most people are familiar with CPR, the lifesaving technique that is taught throughout the world and learned by medical professionals as well as lay people. Working as a nurse for nearly two decades, I have recertified in CPR, cardiopulmonary resuscitation, time and time again. While I have always been grateful that we pay such close attention to helping in this emergency situation, it was only after my two older sons were diagnosed with bipolar disorder that I recognized how crucial it is to be able to support individuals experiencing a mental health crisis. I have realized how unfair and damaging it is that have we overlooked this equally critical aspect of health.

In this picture, I am standing at a busy intersection in Concord, New Hampshire. It is the same intersection where my oldest son was in 2010 when he was having a manic crisis. Just before ending up in that street, he had emptied my medicine cabinet of over the counter medication and supplements, downing as many of the pills as he could take. He was in crisis, as real and critical as someone having a heart attack. He knew he needed help, but because of symptoms, he was unable to effectively let people know that. Instead, he went to Main Street and started throwing CDs at cars and yelling. Most motorists swerved around him, and some yelled back. He could have been hit. An accident might have occurred. There was only one woman who stopped and offered help. She sat and talked with him until the police arrived. She was exactly what my son needed that day. He was in crisis, and he needed someone who cared and knew what to do. What I learned from that incident is we need more people like that good woman, those who are willing and able to offer help. There is a way to get people trained to provide assistance in just such a situation, and it is available through Mental Health First Aid.

Similar to CPR, Mental Health First Aid is an 8-hour training people can attend to learn how to assist those who are experiencing mental health and substance use crises. Through a campaign I posted on our Unitarian Universality crowdfunding website, Faithify, I was able to raise the $3000 I needed to attend a Mental Health First Aid instructor training in Savannah last month. The reason I wanted to become an instructor is so I can teach the 8-hour class in our churches and community groups. Statistics show that ministers are often sought out first when someone is experiencing a mental health issue, yet the training ministers have received is sometimes inadequate. Our churches are the perfect place to start shifting the view of psychological health. By welcoming conversation about mental health and intentionally including the topic throughout our church platforms, we can help make a real difference in dissipating stigma.

It is easy to talk about a person’s physical health. Sympathies run high when someone divulges that they have any one of a myriad of diseases: a heart attack, stroke, insulin dependent diabetes, cancer. These are respectable illnesses, talked about in polite company and even with strangers. There is no stigma attached to these diseases. The same is not true of mental health conditions. I found this out sharply and soundly eight years ago when my oldest son developed symptoms of psychosis. Nobody showed up at my door with a casserole. And there were only a few brave souls who would cross the threshold of the locked unit he was in. Hospitality, like that shown when my father developed cancer, did not abound, and I learned that I would be met with judgment and awkwardness if I brought up the topic with any but a few safe and trusted friends.

This is not ok. Judgment, skepticism, and criticism have no place when a person is experiencing any type of illness, and that includes mental health conditions. We need to bring mental health out of the shadows and into the light, recognizing that illnesses “below the neck” are no different, no less important, than illnesses that affect our brain chemistry. Through supporting Mental Health First Aid either by taking a class or becoming a trainer, we can help increase education and ensure that those who need our care receive it. Nobody should be ignored when they are suffering, and that includes psychologically. When Mental Health First Aid becomes a nationwide standard, just like CPR, we will know we are well on our way to overcoming stigma by finally supporting those who have been marginalized for far too long.

HERO

Post written by Harry

I had some trauma in my childhood which came back to haunt me in my adulthood. I have been having on-and-off depression, especially during the night time when it’s dark and I was so afraid. I have been searching for the hero who can help me to get out of the mental dark hole I have been in. But nobody, not even my parents and wife, can understand the true feelings and grieve I have gone through. I often felt like I am all alone in this world fighting against everything which I lost so many times.

In the Spring of 1993, I was in the last few months of my college years, once again felt completely lost when I couldn’t find a job, couldn’t get the girl I so admired for, and started smoking. One day, I heard this song called “Hero” by Mariah Carey on the radio. At first, I thought it’s about being a hero to his/her lover. I really liked the tune of the song and almost perfect voice and Mariah Carey. So I kept listening. Then as I listened more closely on the lyrics, I realized it’s about the Hero in one’s Soul. Immediately at that moment, “Hero” became my favorite song and Mariah Carey became my favorite idol and stayed as my favorite song and idol until this day and will most likely for the rest of my life.

When I felt down or sad about anything, I often listen to this song “Hero” many hours till I got tired. I cried as I listened to the song every time. Then I started to search for the Hero that’s inside my heart, my Soul. I never got tired of this song. Yes, there is a Hero in my heart, in everyone’s heart. If we care to look deep down inside our heart, our Soul, we can find the love, the hero we have been searching for. Try it, you will be amazed at the magic power of the Hero in your heart. Here, I thought I write the lyrics of the song, hope it can be inspirational to you. Hope everyone can find love and peace from this song, from your heart, from your Soul.

There’s a hero if you look inside your heart
You don’t have to be afraid of what you are
There’s an answer if you reach into your soul
And the sorrow that you know will melt away

And then a hero comes along with the strength to carry on
And you cast your fears aside and you know you can survive
So when you feel like hope is gone, look inside you and be strong
And you’ll finally see the truth that a hero lies in you

It’s a long road when you face the world alone
No one reaches out a hand for you to hold
You can find love if you search within yourself
And the emptiness you felt will disappear

And then a hero comes along with the strength to carry on
And you cast your fears aside and you know you can survive
So when you feel like hope is gone, look inside you and be strong
And you’ll finally see the truth that a hero lies in you

Lord knows, dreams are hard to follow
But don’t let anyone tear them away
Hold on, there will be tomorrow
In time, you’ll find the way

And then a hero comes along with the strength to carry on
And you cast your fears aside and you know you can survive
So when you feel like hope is gone, look inside you and be strong
And you’ll finally see the truth that a hero lies in you

A Bipolar Story

The following post was written by Bill LaPorte-Bryan.

My name is Bill LaPorte-Bryan.  Because I’m bipolar I’ve had to deal with wide mood swings for much of my life but I’m lucky and they seem to be gone now as I enter my eighties.  But I love to tell my story and often share it in public and in private at my church, the Unitarian Society of Hartford.  Here’s what I said during a recent disabilities service.

“I think it was 10 years ago, in 2008, that I told my story in public, for the first time, from the pulpit in that year’s disabilities service.  A few of you might have been there and some of you might even remember what I said, but with my apologies, I’ve decided to tell you my story again, but today in the context of AIM.  The words still ring true.  This morning at the end of my story, I’m going to try to answer the questions in the Enews blurb describing this morning’s service … What does it mean to have a disability?  How can our church help or hurt?  What can we all do to support our families, friends or fellow church members with disabilities?

“So here’s my story.  In this place and with your support, I feel safe sharing it with you today…

“Until my wife and I got married about 11 years ago and decided to take on the same last name, I was Bill Bryan all of my life except for three days during the week between Christmas and New Year’s Day in 1969 when I was Jesus Christ.  That might take a bit of explaining so let me go back to the beginning.

“I was born on Ground Hog’s Day in 1937 with two significant genetic abnormalities that I inherited from my father.  One defect made me deaf in my left ear and gave me poor hearing in my right ear.  As usual, my hearing got progressively worse as I got older but I use a hearing aid in my good ear and the technology got progressively better so I’ve lived a full and fulfilling life in spite of my disability, capped off when you elected me President of our church a few years ago.  (I can’t tell you how much that meant to me.)  But now that we’ve installed a hearing loop in this Sanctuary and I got a new aid with what’s called a T-switch, I can hear everything that’s said in a service without having to struggle to understand all of the words.  I won’t have to sit up front any more so I can see the minister’s lips to help me figure out what she’s saying.  And then there’s the ultimate … adding real-time captions on a big screen, also only a matter of time and money, so if I doze off for a few seconds, I can catch up.

“The other genetic aberration gave me a propensity for a mental illness which at that time was called manic depression.  Today the condition is more commonly known as bipolar disorder and it’s characterized by extreme mood swings.  The symptoms include alternating periods of exceptionally high mood called mania when you’re up and feeling really good, you’re exhilarated and everything is wonderful.  They’re followed by periods of depression when you go down and become gloomy and lethargic.

“So I was born mentally ill and the chemistry in my brain wasn’t normal but for 32 years nobody knew it.  I led a normal life, my moods were normal and I had no idea that anything was wrong.  But, in a sense, I was a ticking time bomb.

“In 1969, I was well into my career with IBM and living in New York with my first wife and two children, who were 9 and 3 at the time.  During a Christmas visit to my parents in St. Louis something happened that changed the next 30 years of my life.  I was playing football with a group of neighborhood teenagers and dislocated my shoulder.   It hurt like hell.  I needed surgery to repair the damage.

“During that experience of extreme pain something had happened to me.  My family was worried about me.  They knew something wasn’t right.  Even the dog noticed it.

“In the car on the way to the airport to head home, I had a mental breakdown.  I lost consciousness as I was looking at what I thought was an enormous brilliant cross on top of a church.  At that point, they tell me, I blacked out and started screaming at the top of my lungs.  I was told I screamed for hours.

“When I came to the next day, I was in the psychiatric ward of Barnes Hospital but I had no idea where I was.  But I did know I was Jesus Christ.  Mind you, I didn’t wonder or think or believe I was Jesus Christ.  I was Jesus Christ.  There was no Bill Bryan.  There was only Jesus Christ and that was me.

“I can also tell you that I remember vividly how I felt when I was Jesus Christ and it was scary.  They were trying to kill me and I knew they’d succeed.  The medicine was poison.  The food was poison and the only reason I decided to take and eat it was because my life was in God’s hands.  I didn’t want to die and I didn’t know whether He wanted me to die or not but, if He did, that was that.  I was really scared but what are you going to do?

“It took the better part of a month for me to know for sure that I was Bill Bryan.  After another month I was released from the hospital and flew back to re-join my family.

“I started seeing a psychiatrist right away but it wasn’t until the following spring that he told me that I was manic depressive and I began to have some idea of what had happened to me in St. Louis.  Only then did I become aware of my mood swings which, in my case lasted for several months; two months feeling good and two months feeling really depressed.  With the help of a newly approved “miracle drug”, lithium, in spite of missing some work when I was down, my career went on.  I must say IBM was wonderfully supportive.  I couldn’t have worked for a better company.

“For the next 30 years I enjoyed a successful and fulfilling career with IBM until I retired in 2000.  But even the best jobs bring stress with them and during those years, even with lithium, I continued to have manageable but annoying mood swings.

“And then when I retired an amazing thing happened.  My stress level went down and the mood swings which I had been told would be with me as long as I lived started to become less extreme.  In three years, my doctors had gradually weaned me off of lithium and my moods were normal.  So for the last 15 years I haven’t taken any medication and, while I still have the genetic defect and I still think of myself as bipolar, I have no symptoms of mental illness.  They’ve disappeared.

“I’m very lucky and very grateful.  I’m told that the symptoms of bipolar disorder usually don’t go away.  But mine did and in all likelihood they’ll never come back, although you never know for sure.  I just take it one day at a time and I’m grateful for every one of them.

“So that’s my story.  Thank you for giving me the opportunity to share it with you.

“Now let me turn to the questions I mentioned in the beginning.  What does it mean to have a disability?  That’s a great question to start with.  The answer is, it depends.  Usually we mean that someone has a physical disability, a mental illness, a brain malfunction, a learning or intellectual disability or an extreme sensitivity to something.  The condition can be visible or not, it depends on the disability and the person making the observation.  Some people who have a disability consider themselves disabled, but some do not.  There are so many personal judgments here that, in many cases, the label “disabled” can be arbitrary and can carry baggage … so be careful what you say and how you say it, particularly if you’re talking with someone you don’t know very well.

“How can our church help or hurt?  All of us can help by creating a safe place where people with disabilities feel welcomed, supported and treated like the whole person they are.  It’s important for us to realize that we are all some combination of “abled” and “disabled”, all wrapped up in one human being.  With that in mind, let’s just live our UU principles.  Living with a disability is a spiritual practice, as is supporting a family member, a friend, a member of our church or, for that matter, anyone else with a disability.  If you practice healthy relations with everybody, you’re on the right track.  Oh, and by the way, you can help by participating in and supporting AIM.  There will be lots of opportunities over the next few years for you to ask questions, share your thoughts and learn more.

“And finally, what can we do to support our families, friends or fellow church members with disabilities?  Listen to us, realize that each one of us is different … each a unique human being with different needs, different support requirements, different sensitivities, different fears, different passions, different joys and different capabilities.  It’s that simple.  Simple, but often not that easy.

“Amen and so may it be.”

Mental Health and Fire Arms Deaths

by Tim from LA, and Rev. Barbara F. Meyers
 
Again there is a school shooting, and again there are cries from many voices from both parties that the mentally ill are responsible for gun violence in our country.  It seems like this cycle of violence and blaming it on mental illness is never ending, as are ineffectual efforts to address it.  For example, Florida Governor Rick Scott weighed in:
 
Florida Gov. Rick Scott said at a news conference Thursday that he would discuss with the Legislature next week increasing funding for mental-health services and keeping guns out of the hands of the mentally ill.  Scott said, “If somebody is mentally ill, they can’t have access to a gun.”
 
The problem is, this is unconstitutional and denying someone a firearm is a violation of the Second Amendment…and they know that. According to the U.S. Department of Health & Human Services,
 
“It is important to note that the vast majority of Americans with mental health conditions are not violent and that those with mental illness are in fact more likely to be victims than perpetrators.  An individual who seeks help for mental health problems or receives mental health treatment is not automatically legally prohibited from having a firearm; nothing in this final rule changes that.  HHS continues to support efforts by the Administration to dispel negative attitudes and misconceptions relating to mental illness and to encourage individuals to seek voluntary mental health treatment.”
 
Anyone who is not adjudicated by a judge deemed mentally incapable can legally purchase a firearm. So if you place yourself in a mental institution for mental health issues, come out, you can legally buy a pistol, rifle, or a shotgun. It’s your Constitutional right. To say that they will ban mentally ill folks from purchasing a firearm will not stand up in court and again, they know that. So the law they craft will get thrown out.
 
This political act is merely a way for politicians to appear to be concerned about the victims, but at the same time, kowtow to the NRA and other gun-lobbying groups. At the same time, create a stigma for those who are mentally ill.
 
You see, I, Tim, have mental health issues and am going through therapy. I also bought a rifle too. My background checks out, and I shoot at targets.  I am neither a threat to myself nor others, and the rifle was secured in a safe. In a gun store. I sold the firearm, and I can legally purchase another if I choose to do so, which I will not do, because, I hate cleaning after shooting. But then, even with my mental health, I have no problem determining what is right or wrong, as do many who suffer. Less than five percent of folks who do suffer, commit a crime. The two most famous are John Hinckley Jr. and Mark David Chapman. Both are found not guilty because of insanity.  Many who do kill and convicted try an insanity plea but are found lucid enough to stand trial.
 
Most of folks who are mentally ill end up as victims not perpetrators, but our elected officials tend to blame us than find a way to prevent future violence, as it is easier to put off responsibility to the people yet receive the political contributions from the lobbying group. Florida is proof of that. They never expanded Medicaid. Doing so would allow folks to receive the treatment they sorely need, as Governor Scott said that the shooter in Florida, Nikolas Cruz, is mentally disturbed, and should not have been able to purchase a firearm.
 
Just because we seek treatment does not mean we are inherently violent. There is enough stigma, cultural and otherwise compounding our desire to find that cure, but when our leadership does nothing to treat patients or even do anything to prevent gun deaths like having sensible gun laws, then expect more death and more stigma next time around. It’s tough living in Los Angeles and seeking treatment, but suffice it to say that it’s worse in states that have more concern for gun rights than human rights.
 
But there is a larger issue that is unaddressed by the focus on mass shootings.  Putting deaths by guns in context, mass killings are only a tiny portion of such deaths.  Far and away the largest group of people dying by gun fire are suicides.  Some estimates are up to 60% are suicides.  That is HUGE, given the massive number of gun deaths in the United States.  So, if we are going to make a real difference, we need something that works for deterring suicides as well as mass killings.  
 
We see some hopeful signs.  On a recent broadcast of The News Hour on NPR Professor Jeff Swanson of Duke University, a psychiatrist specializing in violence and mental illness, was interviewed.  He correctly stated that the vast majority of people who have diagnosable mental illnesses aren’t violent and never will be.  He stated that five states have laws where family members can ask law enforcement to remove weapons from the home of someone they believe might become violent.  These laws are sometimes called “red-flag” laws. This isn’t just in case of mental illness, but is also when someone is having anger issues, or is engaged in domestic violence, or is suicidal.  Professor Swanson was very positive about this kind of “red-flag” law being enacted and enforced in more states.  California, Connecticut, Indiana, Oregon and Washington all have some version of a red-flag law.  More than a dozen others, including Hawaii, New Jersey and Missouri, are considering them. In California, the weapons can be removed for up to a year, and there is pending legislation to allow school officials and counselors to request a “red-flag” for a student.  Swanson pointed out that there is due process which is important when you are talking about constitutional rights.  The NRA is against it, of course.
 
Earlier this month, ABC reported:
In a study published last year, researchers at Duke, Yale, Connecticut and Virginia estimated that dozens of suicides have been prevented by the Connecticut red-flag law, roughly one for every 10 gun seizures carried out. They said such laws “could significantly mitigate the risk” posed by the small number of legal gun owners who might suddenly pose a significant danger.
 
This gives us hope that some real change may actually happen.
 
We don’t think red-flag laws have yet been seriously contested in court.  We’re hopeful that if they are, the due process used and the successes will prove that it is not undue restriction of constitutional laws.  
 
We are happy to see something like red-flag laws being studied and positive results reported on a national broadcast.  And, we’re especially glad to hear how it might help with suicides, which is the biggest component of gun deaths.  But we can’t be complacent.  We know that there will be more killings and more blaming the mentally ill, and we need to be steadfast in pointing out the facts.