Michael - NAMI-NYC

What brought you to NAMI-NYC?

I came to NAMI-NYC in 2006, 10 years after I had been diagnosed with bipolar disorder.

In 2006, I had heard that NAMI was organizing a legislative trip to Albany to speak out against the cruelty of the S.H.U.’s (Solitary Housing Units) for prisoners in New York State living with mental illnesses.

Having spent time in seclusion at psychiatric facilities, the cause resonated with me.

It was a powerful visit to the legislators’ offices.  It made me feel proud to have gone and to have spoken up. When the “Boot the S.H.U.” initiative had success, I felt that I had been a part of it.

How did your family respond when you were first diagnosed?

My family was supportive.  My parents consoled me and said that they could only imagine how frightening a bipolar episode like the one I experienced would be like.  They helped me by taking me to psychiatrist appointments and shuttling me around wherever I needed to go.

Most of my extended family did not treat me any differently, which was very helpful.  We had one relative who was living with bipolar disorder who I reached out to and felt a new and special bond.  When I reached out to family about sponsoring me for NAMIWalks NYC in 2007, the response was tremendous!  I have raised $30,000 in one decade thanks mostly to them.

NAMI gave me footing. It offered me a seat. It calmed things down. It brought me together with others who were experiencing the same thing

Tell me a little bit about the culture you were brought up in, and how that culture views mental illness? Was shame a part of that view?

I come from an Italian and Swedish American heritage.  My mother’s family were immigrants from Southern Italy.  My father, a Swedish citizen, moved to America when he was in his twenties.  I grew up in an upper-middle class town in Fairfield County Connecticut.  My parents are very spiritual and religious.  I would say they are liberal as well.  I am gay, and my two brothers are gay as well.  With such an eclectic family, it is not surprising to me that I was not ashamed to add mental illness to the mix.  That being said, I only knew a little about manic-depression from talk shows, my second cousin, and college friends growing up.  It was not talked about much in my town, my church, or even health education at school.

What was your first experience with NAMI like?

The legislative day I spent watching NAMI-NYC in action and seeing advocacy in action was thrilling!

Why did you keep coming back to NAMI?

That legislative visit led to my volunteering as an In Our Own Voice presenter.  The training for that In Our Own Voice (which is still the most meaningful and special of NAMI’s programs for me) took place at the same psychiatric hospital where I had been diagnosed with bipolar disorder.  However, the training was ten years later and I was, by then, well into recovery.

In addition to In Our Own Voice, I began facilitating the Peer-to-Peer course. I was trained to be a NAMI Connections facilitator as well. I also attended a NAMI Convention in San Diego and I have participated in NAMIWalks NYC since its inception in 2007. All of these opportunities (in education, advocacy, and support) are the reason why I have kept coming back to NAMI.

What did you gain from NAMI?

When my illness moved away from its crisis stage, NAMI-NYC was there to help me find meaning in what I had gone through. I met people (staff and mental health consumers) with whom I could discuss diagnoses (such as mine, which is bipolar with psychotic features) but more importantly, with whom I could go beyond labels and medications and discuss recovery.

The six psychiatric hospitals I endured were confusing, demoralizing, humiliating, lonely, and painful.  When I began to volunteer at NAMI, I was treated with dignity, respect, and empowerment. I found a sense of self-determination that was essential to moving up to the advanced stages of recovery. I discovered the feeling of what I was doing right on this journey versus being punished for what I had done “wrong.”

What specific services did you actually use?

I refer people to the Helpline constantly. I constantly learn from Peer-to-Peer and Family-to-Family.  I have made many friends through In Our Own Voice, NAMI Connection and the Walk.  Friendships from NAMI have led to amazing opportunities separate from NAMI as well.

I have healed profoundly from attending the Hearing Voices Support Group, which meets twice a month at the NAMI-NYC office.

I have gone to writing workshops at the NAMI-NYC office; I have also attended Saturday night activities like movie night and pet therapy.

Did you experience an “Aha!” moment at NAMI? If you did, when did it happen? What was it like?

My most powerful “Aha!” moment was that NAMI is always pointing to the wellness factor. Mental health is so major and NAMI provides so many wonderful possibilities for those of us who struggle to add more wellness into our daily lives. This is not easy to do, I would imagine, for a not-for-profit organization.  I especially loved when they introduced a “Six Weeks to Wellness” class filled with yoga, meditation, and nutrition. NAMI is amazing!

Another “Aha!”  moment was when I realized that disclosing my diagnosis was similar to when I came out as a gay man.  Stigma and discrimination are pervasive in society.  Nevertheless, my strengths as an out gay man help me be strong as someone living with a mental health condition.

I recently had an “Aha!” moment when watching the Peer-to-Peer introductory video.  Someone mentioned that recovery is not just “to recover something that was lost” but also “to change and to transform into something new.”

How are you involved with NAMI now? Why did you choose that program?

I still facilitate In Our Own Voice and Peer-to-Peer.  I still fundraise for the Walk.  I try to be in the office once or twice a week.  It is a foundation for my recovery.

How has NAMI changed your relationship with your family?

My parents’ relationship with me changed after they took the 12-week Family-to-Family course. They admitted to me that they felt that much of my behavior had been due to my “seeking attention.” After taking the class, they apologized, and it did change the nature of our relationship regarding the illness going forward. when my parents took the Family-to-Family course and expressed to me that they understood more about my illness and uncontrollable behaviors during a manic or depressive episode, I felt like a burden had been taken off of me.

Their deepened empathy gave me a chance to exhale and rest.

“They’re finally getting it,” I thought.

And when they talked about my illness with my brothers and extended family, that empathy was widened. People could understand why it wasn’t as easy for me to go to family social gatherings as often as before, for example.

Not having to worry about my family’s vulnerability and wellness allowed me to focus on advancing my own recovery. It was very important for me to realize that my main responsibility was to commit to a plan for my own recovery, not to have to defend my actions caused by a severe mental illness.

How has NAMI changed your life?

For the first ten years of my illness, I was caught in the revolving door of the mental health system of New York. In and out of hospitals, up and down in moods, overly trusting and then paranoid. NAMI gave me footing.  It offered me a seat. It calmed things down. It brought me together with others who were experiencing the same thing. NAMI challenged me to share my story. NAMI gave me an opportunity to find out what a good fundraiser I am. NAMI brings out the best in me!

What does it feel like to walk through the doors of NAMI now?

Whenever I walk through those doors, I see someone at reception, the helpline or staff members, or other mental health consumers that I know and it makes me so happy! To see people who have been there for ten years and others who have just arrived energizes me. And if someone is there inquiring about In Our Own Voice or anything that I can be helpful with, I instantly feel useful. It is such a warm, friendly place. And it is such a great cause!

What does NAMI mean to you?

If you read “NAMI” backwards, it is “IMAN,” which in Spanish means “magnet.”  NAMI is just that: a magnet for people all over the cities, the states, and the country who are in need and who could very likely benefit by meeting others/peers who have shared experience.