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Family Experience with Mental Illness

My son Ben, diagnosed with paranoid schizophrenia at age 20 after five years of confusing onset symptoms, has often seemed "frozen in time" in this phase of recovery; emotionally and cognitively stuck at the age he had been when the symptoms began during high school. Despite three relapses during this near decade of stabilization (all due to instances of refusing meds),  Ben has been in recovery most of those years and has progressed in many ways, as I wrote in an earlier post, Mental Illness Frozen in Time Can Thaw. But, until recently, Ben had few friends and I wondered if he would ever get that particular joy back in his life, or when he might reach the stage of self-acceptance that is crucial to healthy friendships. Would he ever again regain what he had before schizophrenia set in; the simple joy of having people with whom he could share a meal, see a movie, laugh and talk, or just hang out?
to: Governor Dannel P. Malloy, Connecticut Dear Governor Malloy, Thank you for taking a stand this weekend for mental health treatment. According to the Connecticut Post, you received a "rousing ovation" at the U.S. Conference of Mayors for demanding that we remove the stigma from mental health issues, rather than destigmatizing violence as we do in many video games. You said: "If we spent as much time and energy on destigmatizing mental health treatment as we do in the proliferation of these video games that destigmatize violence, we as a society would make great gains." Governor, I couldn't agree with you more. Now it's time to put the money (budget) where your statement is.
A Cause of Sandy Hook School Shooting? The obituaries in my local paper still contain too many heartbreaking attempts to sum up the life of a six-year-old. My friends continue to tearfully share personal connections to the heartbroken families in Newtown, where less than one week ago lives were tragically ended - and countless more changed - forever. As we continue to cry out: Why? how?  And how we prevent this from happening again? The voices of reason speak out: Better Gun Control. Fewer violent video games. A shift in media coverage to stop sensationalizing violence. More enforcement of mandated treatment for those who need it. And - a cause we have felt personally ever since Ben's diagnosis of schizophrenia - more help and services for those with mental health issues, and for their families. Who will listen? Who will act? We must. All of us. Pick a cause and advocate. Fight back. Speak out. Insist upon change. And don't let these issues fade.
I take no credit for the title of this post. It comes from my son Ben, who is many ways wonderful. I hesitate to define him here with the label "diagnosed with schizophrenia" -but of course that's why I write this blog, and why I wrote my book, Ben Behind His Voices. It's the piece of him that makes his current insights so remarkable. Recently Ben and I were talking about how much better his attitude has been - and I asked him why he thinks he is getting so much closer to his goals these days.  He, who used to tell me all rules were stupid and possible "government plots", now cares deeply about punctuality, grades, and doing a good job. Ben's answer astounds me with its depth. He said: "Well, now I'm living my life, not fighting my life."
My son, Ben, who lives with paranoid schizophrenia, is in the process of rebuilding his life. After years of feeling buried under symptoms, distracted by hospitalizations, rejected from opportunities, and feeling left behind by friends whose lives had followed more predictable paths unfettered by mental illness, he is also (dare I say it? Yes!) reclaiming his future. So far, so good. Living with Mental Illness. Steps toward Recovering Life. Reclaiming his future. How delicious. How marvelously hopeful. And it's a phrase I heard echoed this week at a breakfast briefing of the International Center for Clubhouse Development (ICCD) in New York City. I love this phrase, because it's not only full of hope, it is full of truth - for those who manage to find their way to a Clubhouse, embrace its community, and take advantage of its opportunities.
Is living independently the right goal for everyone? Whether or not you live with mental illness, I think the answer is: no. For some? Sure.  For others? Disaster - or at least not the ultimate goal. Dangers of Sudden Independence One year ago my son Ben "graduated" rather suddenly - too suddenly - from his place in a group home with 24-hour supervision to his very own apartment.  Within one month, we needed police intervention to remove him from that same apartment, where he had isolated himself in confusion and fear after missing his meds for a couple of days - and most likely cheeking them whenever he wasn't closely watched before that. Why? Certainly the rug was pulled out from under him way too fast - whoosh! You now are expected to function without structure, community, or purpose. Good luck with that - but also, for Ben (who is a very social person, even with his schizophrenia), he was, well, lonely.
Sometimes you've  just got to say the word: suicide. Suicide is Preventable Monday is World Suicide Prevention Day and if having the conversation saves even one life, it's worth breaking through the fear of "rocking the boat." Rock away. Although dealing with my son Ben's schizophrenia has been no picnic, and at times I have feared for his life via accident or attack, we know we are lucky in that he has only spoken of suicide once, in the early onset phase of his illness 15 years ago.  He tells me now that he was only trying to get my attention. Mission accomplished.
This is Ben's journey, too. That's what I sometimes need to remind myself. Mental Illness and Stigma Sure, I have become the family spokesperson for our experience with mental illness, since writing a book and this blog about our journey "from chaos to hope" with schizophrenia. Still, when people ask me to come and speak, either in person or in the media, about the issues associated with our situation, they sometimes ask if Ben will come and speak too. The answer is: No. Not yet, anyway. And I can only hope that Ben's decision is not only respected, but understood.
When my son, Ben, was in the first stages of recurring psychosis from schizophrenia, we were waiting for him to get "sick enough" to finally earn a bed in a psychiatric unit (don't get me started on this). During that period, we had many encounters with our local police officers while Ben, and the rest of the family, were in crisis. I am so happy that these officers were trained in mental health crisis intervention. I am thankful for their kindness and empathy toward Ben, Ali and me which made our traumatic situation more bearable. Even more importantly, their CIT (Crisis Intervention Training) made it possible to avoid the trauma-upon-trauma pile-up of emotions that could have escalated the crisis instead.
Answer: a lot. At least, given the opportunity, respect and resources, we can learn. So can anyone who loves someone with a mental illness. Last week I had what I thought was a terrific idea: why not get a parent's perspective on the recent tragedy in Aurora, the public perception of schizophrenia, and the value of treatment for mental illness?  After all, family members live the experience of seeing a loved one's decline into mental illness, and (if we are informed, supported, and -let's face it - a little bit lucky) the benefits of proper treatment. Schizophrenia expert? Not just an M.D.