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Mental Illness in the Family

Silver Linings aren't always visible right away, and sometimes we never find them.  In our family, the silver lining of new friendship emerged this week from an awful event a few weeks ago. On his way to an "anonymous" meeting he has attended for almost eight years without incident, my son Ben became the victim of a crime.  He was thrown to the ground, threatened with what the mugger said was a knife (we'll never know, nor do I want to), and robbed. The kids (two of them, he says) took his keys, his backpack with all his belongings, his cash, and his feeling of safety.  Ben will never go to that meeting again, because the neighborhood now holds these terrifying memories . The silver lining? Well, in finding a new meeting to attend, Ben has finally met some young people his own age who also have had issues with mental health.
My daughter Ali and her new husband Marc were part of the audience at the September book-launch event for Ben Behind His Voices - sitting right next to Ben, I might add. He was a surprise guest that night and nothing could have surprised me more.  I had been concerned about Ben's reactions to the night, especially the excerpts I read out loud. Therefore, we had talked about his feelings the night before and had reached a game plan together regarding his possible emotional reactions. All went well, thank goodness. But, see? Here, once again, I have turned the conversation to Ben's needs. This post is about Ali, his little sister - and for all the siblings whose grief and adjustments too often get the short shrift.
First of all, big congrats to my fellow Healthy Place bloggers Natasha [caption id="attachment_396" align="alignleft" width="170" caption="thanks!"][/caption] Tracy (Breaking Bipolar Blog) and Kendra Sebelius (Debunking Addiction blog) - we all received  Web Health Awards for Summer/Fall 2011, and I'm proud to be here on HealthyPlace with them! Meanwhile, in nearby NYC, the buzz is about this weekend's Marathon. On the way home from dropping Ben off at school this morning, I heard a news story about one runner whose motivation is this: his brother was murdered in a Queens home invasion in September and his mother is battling cervical cancer. Runner Sal Polizzi told WCBS reporter Marla Diamond, “You really can never pick up the pieces, but you do it as best as you can.” This is true, too, for families dealing with mental illness.
Sure, it's not the story you usually get in the media:  Someone with a diagnosis of schizophrenia or schizoaffective actually has a life. This person loves, works, contributes, has useful skills - and is an active participant in his/her own treatment. But in the NY Times this week, Benedict Carey's article is there on the front page: Lives Restored:A High-Profile Executive Job as Defense Against Mental Ills.1 Keris Myrick, 50, the chief executive of a nonprofit organization, has found ways to manage her illness - and thrive. Will this happen for my son, Ben?  I don't know - but I can hope.  I can't expect, but I will dream.  For, right now, there is progress in his life that I hadn't dared to dream about even one year ago.
I write this to you from Disneyland, where over 1,000 dedicated psychiatric nurses are passing up on Mickey and Goofy in order to become inspired, educated, and even better than they already are at their jobs.  Thank you, members of the American Psychiatric Nurses Association, for wanting to help people like my son Ben as he struggles with schizophrenia. [caption id="attachment_384" align="alignleft" width="170" caption="for attendees at APNA Conference"][/caption] Tomorrow morning I will tell our family story at a "Product Theatre" breakfast meeting, along with an amazing nurse who shares this vision: together we will advocate for the value of teamwork between providers, caregivers, and those with the "life experience" of a mental illness diagnosis. I can't wait.
Today is my birthday, always a day of reflection and gratitude for me.  This year, October 11th comes very soon after Mental Illness Awareness Week, The Jewish High Holy Days, and the publication of my book, Ben Behind His Voices. So much to think about, to share with you. First of all, there is Ben, my son, who gave me my first birthday gift this morning (a mixture of teas he carefully selected himself, taking the time to consider my preferences). This year it is also a gift of self-esteem for him, for it marks the first time in almost a decade that he was able to pay for it himself. 
Last night, Ben came home from an "Anonymous" meeting and shared with me that there had been an unexpected discussion about mental illness, and that (in his words) "about 90% of the people in the room admitted that they have one." I wanted to press for more details - you bet I did - but I've learned not to push the learning. The fact that he chose to tell me this much - without, of course, revealing names or details - seems like a good thing. Did he participate? Did he admit he has an illness, too? Did he feel supported in this group of peers? I didn't dare ask. But I did wonder.
Today is the start of the "Jewish New Year", Rosh HaShana. No matter what your community, there always seems to be a period of time set aside to reflect on what has happened in the past year, how you are going to process it, and how you hope/plan to act on what you learned in the future. Next week the journey continues, during Mental Illness Awareness Week. Maybe those of us living with mental illness in our families can inspire awareness and thought in others, as we consider our own situations. Reflection can lead to realization, and to change.  This is not merely a matter of what has happened to you and to those you love;  it is more a reflection on how you eventually choose to deal with it.
Last Thursday, I was invited to read from Ben Behind His Voices to the members and staff at Laurel House in Stamford, CT. Laurel House is based on the  "Clubhouse" Model, offering programs, services, and a community to people diagnosed with a mental illness.  Tonight, Laurel House will sponsor the public Book Launch Event, and we hope to raise awareness and funds for the wonderful work that goes on there. What do they do? from the home page of their website: Recovery... the regaining of or the possibility of regaining something lost or taken away. Laurel House is a “for impact” organization that creates opportunities for people with serious mental illness to work, attend school, have a place to live and experience improved health and an overall better quality of life. It is also a place where recovery begins. Since 1984, Laurel House has operated in Stamford, Connecticut, using a self-help approach known as the “Clubhouse” model. This is a holistic, community-based approach, which focuses on the individual strengths of people with serious mental illness to lead productive, meaningful and rewarding lives in the community. I arrived at 11 am, and was greeted by the public relations team at Laurel House, consisting of both staff and members.  One young woman shook my hand firmly and cheerfully and said, "I'm so glad to finally meet you! I have paranoid schizophrenia and I'm not ashamed to say it. I also want you to know that while I love my therapists and psychiatrists, I would not be here without the love and support of my family."
When my son, Ben, finally began treatment for mental illness,  I kept careful notes on all the symptoms I saw between appointments.  At best, Ben would see his therapist and/or psychiatrist for 1 hour a week and was often able to hold it together for that one hour in a much better way than he'd been able to do all week with us.  So I made an effort to fax these notes to the provider the day before the appointment. Some read it. Most did not, citing "no time" as the reason. Really? What kind of session can you have if you don't have all the facts? Families know. They know a lot.