The Story of Joel through the Eyes of a Mother

by Lorraine Kaplan

Our family consisted of my husband, Eli, myself, my son, Joel, and my daughter, Jane. We lived in Plainview, New York, near our extended family and had many family outings, trips, picnics, and parties. Our children had music lessons, belonged to the Boy and Girl scouts of America, played in Little League, and did very well in school.

I was a stay at home Mom until Joel was thirteen and Jane was ten, when I returned to teaching. When Joel was a senior in high school, he was on the debating team, was the first trombonist in the orchestra, was on the wrestling team, and received many scholarships to ivy league colleges. Everything began to change, however, during that year. Despite intellectual successes (school always proved easy for Joel) there was a huge change in his behavior.

He became intent, to the point of obsession, on "getting even" with a young man he had met at a camp and he thought wronged him. This became his focus day and night, and we could not talk him out of it. I was an educator, and yet I had no training on mental illness...and our world was falling apart.

We finally sought help for Joel, which led to the first of many hospitalizations. The doctor who diagnosed Joel told us to "keep quiet about Joel's diagnosis of schizoprenia because of the stigma surrounding mental illness." So we kept quiet. As a family, we lived in silence, in shame, and in isolation for ten years.

Then, one day we were invited to attend a meeting of NAMI (the National Alliance on Mental Illness). This proved to be a life changing event. We walked into the meeting and saw at least seventy five people--all of whom were suffering our pain. And we thought we were the only ones who lived with a family member with mental illness! Here were people who not only felt our pain, but they were doing something about it.

They were advocating for family members. They were saying that mental illness was comprised of different brain diseases, and, therefore, was no one's fault. We needed better research, better housing, and better understanding. We needed to teach people about about the unfair stigma surrounding mental illness.

After the meeting, I did a three hundred and sixty degree turn and became an advocate for my son and the millions of people who from mental illness. I decided to use my experience as an educator to educate teachers and their students on mental illness. How wonderful it would have been if my son and daughter had been taught about Joel's illness. Their friends would have understood what he was going through, and my daughter wouldn't have had to suffer the emotional difficulties and terrible survivor's guilt that siblings feel.

I, along with another teacher and mother of a son with mental illness, created a series of lesson plans called, "Breaking the Silence: Teaching the Next Generation About Mental Illness." For the past twenty years, we have been working on this project. Our goal is to have mental illness as a mandated subject in the New York State curriculum. Our lessons are used in schools scattered across each state of the United States, in seven other countries, and have been translated into Spanish. Please go to our website: http://www.btslessonplans.org to learn about our project through the videos and television appearances we've done.

Our son Joel passed away six years ago. He lived his last twenty years in an apartment provided by the housing agency ADD in Riverhead, New York. He loved his home and we will always be grateful that he had a warm and loving place to live, which is not the fortune of everyone who lives with mental illness.

Fortunately, progress is being made. I continue to speak to groups in schools and organizations, and try my best to promote my lessons as a tribute to Joel's memory. For he was a true hero in the way he handled his difficulties. He cared for others and tried his very best to befriend those who needed his support.