How My Schizoaffective Disorder Helps Me Help Others

[Image description: photograph of sunset in a thick forest. The sun is a bright orb amongst the bare, frost-covered branches and twigs.]      Giuseppe Calsamiglia &nbsp;/ Creative Commons



Giuseppe Calsamiglia / Creative Commons

While in graduate school for classical viola performance, I developed schizoaffective disorder, a combination of bipolar disorder and schizophrenia.  I had high hopes for a career as a professional violist in an orchestra, but instead I was forced to drop out of school. 

As the months passed, I was unable to hold down even the most basic of jobs, so I filed for disability.  I felt incredibly frustrated - even though I was compliant with my prescribed treatment plan, my life felt stifled and unfulfilling.  I had gained ninety pounds from a medication, and I was also unable to express myself creatively, experiencing a seemingly perpetual writer’s block.

I cycled in and out of hospitals, and four years ago I experienced the worst breakdown of my life.  I fancied I was the reincarnation of Beethoven and the Antichrist, and so found myself in the emergency room awaiting care. I lost control of my body and started attacking people whilst completely blacked out.  Several people restrained me as I writhed on the floor, and I was injected with a sedative and tied in four-point restraints.  I woke up two days later, and was shipped off to an inpatient unit.

During this three-month hospital stay, I was put on Clozapine, a medication that is considered a “last resort” for people with treatment-resistant schizophrenia.  My life radically changed for the better, and I was able to start thinking about returning to work.  That is when I learned about the career of the mental health peer specialist: a mental health professional who has personal experience of living with mental illness.  Peers can understand and support clients in ways that degreed professionals cannot, and they are employed in a variety of settings, from hospitals to outpatient care clinics and subsidized housing agencies.

I attended a comprehensive peer specialist training program at Howie the Harp Advocacy Center in Harlem, NYC, where I learned about the many facets of peer work.  I took six months of classes, then completed an internship, and after that I was hired for a full-time position. I have remained here for over two years. My once-impossible dream of working is now a reality, and life has never been sweeter.

I have transformed my devastating past experiences into a strength.  I know what it is like to be on disability, waiting in endless lines to apply for and re-certify government benefits.  I know what it is like to feel idle and impaired, and I know what it is like to live in a hospital for weeks on end without going outside.  I have taken a slew of medications and have experienced terrible side effects, just as my clients do.  Perhaps most importantly, am not afraid in the face of psychiatric crisis -  I have no attitude of stigma in my heart, because I too have been affected.  If a person harasses me in a flurry of mental stress, I can forgive that person without having judgments or reservations about their character.  I believe in my clients, and I respect them without expectations for any reciprocation.  Such is the beauty of peer work.

Many of the people I work with come from backgrounds of poverty, and did not have the same opportunities that I had growing up. I run a recreation group on Sundays with an art studio class, and I also run a songwriting group with my guitar; sometimes, I bring my viola and play Bach cello suites.  Where in the past I thought my unique artistic skills were nothing special, I now realize that they have the power to uplift people.

During my training, I also learned about how peers strongly embrace the “Recovery Model,” as opposed to the traditional “Medical Model.” I was already fully familiar with the latter’s perspective:  patients need to accept that they will end up living compromised lives where they cannot enjoy the successes and accomplishments of a “normal” person.  Negative predictions are made regarding a patient’s potential.  Complete recovery is impossible, and a patient will be ruled by mental illness for the rest of their life.

It was so refreshing to hear an alternative to this soul-crushing viewpoint.  The Recovery Model maintains that everyone has the potential to live a fruitful, fulfilling life, and that no one has the right to make negative predictions regarding a person’s potential – that a person’s dreams should be supported, not discouraged.  Full recovery is possible when approached systematically and comprehensively.

Personally, I found it impossible to reach toward wellness for many years, and things only changed when I saw the Recovery Model in action.  Once I saw its power, I became empowered, and finally began to believe in myself - my quest for recovery became not only a personal endeavor, but also a collective one. I connected with many professional peers in the NYC community, which is filled with people who truly understand life’s ups and downs, and they have become dear friends who make me feel consistently supported. I am never alone in my struggles.

Being a peer specialist also allows me to serve as an example for others who want recovery.  When people see me living a fruitful life, exercising and creating freely, they too can become inspired to reach for that.  Over two years ago, I started a Facebook group called “What is Wellness?  A Mental Health Discussion Group,” and membership now totals over 1,850 people.  The group embraces the Recovery Model and the values of peer specialists, which really opens the eyes of members who would not have had access to this type of support in their immediate communities.  Many members are professional peers working across the United States.

Every day, I post a question or two to the group which prompts sharing and philosophical discourse.  Examples range from the deeply profound to more casual topics:

How do we stop beating ourselves up and transform [that] into something more forgiving? Why are we beating ourselves up in the first place?

Have any "miracles" happened in your life? Impossibilities become possible? Is there hope for such in the future?

What’s your favorite board game from your childhood?

As members discuss and digest the questions, friendships and positive bonds form.  People share their memories, fears, and life philosophies, and everyone learns from one another.  While some people post frequently and engage actively in the discussion, others are quieter and simply read without writing anything themselves. Very often, people report that the group is a profound lifeline, offering hope for recovery that would not have been otherwise accessible.  It also creates awareness about the work of peer specialists, and a couple of members have even gone on to complete peer specialist training.

As I help my clients, I realize how far I have come in my own journey. Only four years ago I was licking my wounds after the worst mental breakdown of my life. I had faced years of unemployment, and only expected that this would be my status for the rest of my life. I never dreamt that recovery was possible, and yet it happened for me.  As the famed peer advocate Shery Mead says, a diagnosis is not your destiny. There is life beyond mental illness – there is life with mental illness.  As we share our experiences and offer each other unconditional compassion and regard, the wellness becomes possible and attainable.

Neesa Sunar is a mental health peer specialist at a housing agency in Queens, NYC. She has authored a book of poems, entitled "The Ecru Gorilla," which will be published by September of 2017. She is also a classically trained violist and a singer/songwriter, and has performed in various venues throughout New York City.  Find her on Twitter.