From Mental Health Institutionalization to Advocacy
by Karl Shallowhorn
Like many others who live with bipolar disorder, my journey began early in life. It was 1980. I was a college freshman; five hundred miles away from home and in a very high stress environment. I had a history of alcohol use from high school but, when I entered college, I was introduced to marijuana. Initially it was fun, but as time went on, it served to help me cope with the many stressors I experienced. Weed simply served to accelerate the problems I was experiencing.
As a result of the academic rigor, lack of a viable support system, and chemical abuse, I experienced a perfect storm of circumstances that led to my first psychotic break which included persecutory delusions, auditory hallucinations, and a suicide attempt which led to me to being in a catatonic state. I was discovered by the college Residence Hall Director and taken to the local hospital’s psychiatric emergency room.
I spent the next seven years bouncing in and out of several inpatient and outpatient psychiatric programs in my hometown of Buffalo, New York. These experiences were both confusing and terrifying and entailed multiple psychiatrists and medication changes. I would have episodes of intense mania with delusional symptoms of being a Messianic-type along with magical thinking. I experienced paranoia and ideas of reference. My belief was that certain songs were about me. One of these songs was Somebody’s Watching You by the reggae group Black Uhuru. My belief about this song was consistent with the paranoia I experienced. Another was the rock trio Rush’s Afterimage. This tune begins with the lyrics, “Suddenly you were gone from all those you left your mark upon.” I associated this song with my sudden departure from my first college in Michigan.
These issues were very disruptive and affected my ability to continue in school and work. Twice I was hospitalized at the Buffalo Psychiatric Center, which is where those with more longstanding mental health disorders are treated and often spend years of their lives. I even received Electro-Convulsive Therapy (ECT). I had a series of six treatments, and while this procedure was forced, I did experience relief from my severe depression. I had some short-term memory loss however I didn’t have any long-lasting effects. In 1983, after a summer in which I had experienced a major depressive episode, I was hospitalized and given a formal diagnosis of Bipolar Disorder I.
I was fortunate, however, to have strong family support, including my mother, who happened to be a Credentialed Rehabilitation Counselor (CRC), which enabled me to continue my education. CRC’s specialize in working with those who live with mental and emotional disabilities and substance use disorders.Despite my continued mental health concerns and substance use I graduated from Buffalo State College with a degree in Broadcasting in 1987.
The Turning Point
The critical moment of my life came on January 13, 1988 during a counseling session. My counselor knew my pattern of substance use and subsequent manic episodes. He gave me the following ultimatum, “Either you go to rehab, a (substance use recovery) meeting, or you go back into the hospital.”
I thought about it and knew that I didn’t want to go to rehab and I definitely didn’t want to go back into the hospital so I decided to take the path of least resistance and attend the recovery meeting.
Two days later I did just that. It was January 15, 1988. It was at this meeting that I heard a woman state that she had not used drugs in thirty days. I was inspired by this and I felt a sense of hope that I had never had before. The last time I used a substance was the following day and I have not used since.
This change was so critical to my recovery from bipolar disorder. Slowly but surely my life began to stabilize. I did experience one episode in April of 1989, however my recovery was much quicker than I thought it would be and I was able to get back on track.
One result of being in recovery I experienced was the extreme sense of gratitude I had for those who had helped me. I began to embrace the idea of giving in order to receive. As a result, I decided to go back to school to become an addictions counselor.
I enrolled in a program at an Erie Community College and completed the necessary coursework to qualify for a position in the field. I was fortunate to get the first job I applied for in 1992. It was also at this time that I met my Suzy, the woman who would become my wife. At first, when I disclosed my having bipolar disorder, she struggled with the idea of being with someone who had this condition. Fortunately, she was able to see beyond that and we got married two years later.
Another Turning Point
Shortly after we married, Suzy became pregnant with our first daughter. Unknown to her (and me) I was experiencing hypomania during this period. I began to sleep less and have other mild bipolar symptoms like needing less sleep, having grandiose ideas, and increased energy. The fateful moment came when I met with my psychiatrist and requested to discontinue one of the medications I had been taking. Not picking up on my hypomania, the doctor complied and I stopped the med. Within two weeks I was in a full-blown manic episode, believing that I was a Messiah, that God was speaking directly to me, and that I had the ability to mentally control people.
It was a terrifying experience, especially for Suzy. Our future was now uncertain as I struggled to regain some sense of stability. My employer was especially gracious and allowed me to take a three-month leave of absence and return to work to a less stressful position.
Realizing that I needed to make a change from the work I was doing I decided to enter a graduate program at my alma mater, Buffalo State, in Student Personnel Administration. After completing this program in 1998 I accepted a position working in college admissions at the same school and embarked on a twelve year career in higher education. Looking back, this decision was based on my belief that I needed a fresh start. While I still liked helping people, I saw this as a different way to do so.
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A Call to Action
During my tenure working at three local colleges I did well as far as taking care of my mental health was concerned. So well, in fact, that none of my colleagues were even aware that I lived with bipolar. My wife and I had our second daughter in 1998 and I was living the American dream.
But as time went on I became disillusioned with the work I was doing. It wasn’t feeding my soul. I was still actively attending support groups and loved recovery as much as ever.
I tell the story of a summer day when I was cutting my lawn and thinking about how the media was handling the news surrounding Britney Spears and her alleged struggles with mental illness. “Why don’t we hear more positive stories about people living with mental health disorders in the media?” I asked myself.
Having this thought, I decided to write an op-ed piece for the Buffalo News focusing on the fact that many people are successfully living with mental health challenges in our society. In retrospect, I now realize that this was a huge risk. Having been stable for so long I did not endure the stigma that so many others had experienced and now I had invited it to my doorstep.
The article was published and to my surprise, I received a lot of favorable feedback. This emboldened me to take the next steps to become more active in the mental health advocacy movement.
My first step was to reach out to the local chapter of the National Alliance on Mental Illness (NAMI) and I was invited to share my story. I then used my connections in the higher education disabled student services community to network with others.
One of the first contacts I made was with the Western New York Children’s Psychiatric Center where I told my story to the youth and their families. From there I developed a ten-week college preparation program for high school students in the Center’s Day Treatment Program.
After more intentional action and outreach I was asked to join the Board of Directors of the Mental Health Association of Erie County. I also had an idea for a wellness group for a local outpatient mental health agency where I had received treatment years before. I began to facilitate this group, “Working on Wellness” (WoW) and used this concept to write a book of the same name which was eventually published. I led the group in a program for individuals living with severe mental illness.
In 2010, while still working at a local college I had a fateful meeting with my Vice-President. In looking back it’s quite evident to me that she knew that my heart was not in the college admissions field. I will never forget her words, “Karl, if this isn’t your passion, you need to find out what is.”
And, with that, I went to the agency where I was leading the WoW group and inquired about any full-time openings. In my amazement, I was immediately hired.
I ended up working there for 3 ½ years and found it to be an immensely valuable experience. For one, I learned so much about the field of mental health from a professional experience. But more importantly, it reinforced in me the value of empathy. In every client I met with and in every group session I led I saw myself. I,too, had walked in their shoes and I tried to give a measure of hope to all of them. I felt extremely fortunate, realizing that I, too lived with a serious mental illness but was able to live a life beyond my wildest dreams.
Finding My Voice
During my time working at the clinic I began to do more writing, first blogging on my own and then for one mental health website as well as for a bipolar publication where I wrote on a wide variety of topics such as the importance of family support, the value of exercise for people with mood disorders, and how the practice of meditation can help manage symptoms of bipolar disorder. I began to discover how much I enjoyed sharing my experience, strength and hope to others.
In the time since, I have been able to successfully manage my mental health through the use of medication, exercise, meditation and, just as importantly, communication. I’ve found that being able to talk about how I’m feeling with my wife, my therapist and my close friends. By doing these things I’m able to cope with the ups and downs of life.
While working at the clinic I continued to do more advocacy work and joined the Board of Directors for the Mental Health Association in New York State and later the United Church of Christ Mental Health Network. My involvement with these organizations has enabled me to take my personal and professional experience and work to change perceptions about mental health on a wider level.
From Avocation to Vocation
It was almost exactly three years ago to the day that I accepted a position as Director of Community Advocacy for the Mental Health Association of Erie County and Compeer Buffalo. The MHA has a number of core services centered around mental health support and education and Compeer is an international agency that is based around the idea of fostering friendships for those with mental health challenges.
In the time since I began working at the MHA of Erie County and Compeer Buffalo, I have been provided with a wealth of personal and professional opportunities, including the ability to share my story in public forums and in the media. I have become certified in Mental Health First Aid, an international program that teaches how to respond to a mental health crisis and reduces stigma.
While what I do get paid for what I do, I get so much more than just a paycheck. This has become my life work. I feel that it is my duty and obligation to help others, whether it be speaking to a group or one-on-one with someone who may be in need of support. In many ways, this is a form of ministry for me. For so many years I was truly lost. But now I have gained my sight and I am able to help others find their way.
There is much work still to be done, however I find it reassuring to know that many others like me are finding ways to speak out and share their stories. By coming out of the shadows, we are addressing the myths and stigma surrounding mental illness. No one needs to suffer alone. Recovery is possible.