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.

This week, I taped an interview with the PBS show To the Contrary, which I hope will make it to the air. The show is in its 20th season, and is billed as "A Discussion of Issues from Diverse Perspectives." I am thrilled that this show has selected to discuss Ben Behind His Voices, and allow me to share our story with its viewers, along with the messages of understanding, respect, hope, and the need for better services and more research.  I'm finding, though, as I work the media circuit, that coverage is very much dependent upon what the interviewer wants to bring out,  whether he/she has even read the book, and their personal experiences with mental illness. Right before we taped this one, the producer shared something with me that I found disturbing, and wonder if you do too. 

I write this from Las Vegas.  My son Ben has been living at home with us ever since his discharge from the hospital three weeks ago.  The last time he lived at home was over seven years ago, when his schizophrenia diagnosis was so new and his rebelliousness so out of control.  This time, he is a delight to live with, and wants to be fully cooperative with the "program" we have set up for him - routine, structure, rules, meds. But - for how long? And is this good for him?

Yesterday, I had the pleasure of being interviewed by Armand DiMele, for his radio show on WBAI in NYC, which airs Tuesdays and Wednesdays at 1 PM. We talked about many things, using my book Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope as a launching pad for advice for families. What Armand most wanted to cover was the need for early detection (when does "my child is a little bit off" become "this is a possible mental illness"?), the experience of other family members (siblings, spouses, children as well as parents of those with a mental illness), and the need for communication skills and self-care in dealing with our loved ones.  He rightly saw our family story as a platform for introducing others in similar situations to the need for things like education (such as NAMI, and of course HealthyPlace.com), support, advocacy, respect and self-care.

Last week, I blogged about some good news: Ben, my son, was discharged from the hospital and is getting his life back. He went back to his job, is taking his meds, signed up for fall college classes, and will begin his outpatient program soon. So - some pieces are in place and that sudden lack of structure that triggered his schizophrenia relapse two months ago is gone. So far so good. But here's the thing.

I'm a few days late with this post, but with good reason: we've been trying to orchestrate Ben's hospital discharge plans.  Yes - after this six-week relapse, he is finally back with us (as of yesterday), in so many ways. If you've been following this schizophrenia relapse, you know that this had been Ben's first relapse in over six years, and that it was precipitated by a too-quick-and-unguided move from a group home to independent living. Once he went off his meds this time, there was the danger he might not agree to take them again - and that, if he did, they might not work again. Yet, here we are. I could cry from relief and happiness. For today, we have Ben back.

"Ben is so lucky to have you." That's what I've been hearing a lot lately - well, from those whom I am not criticizing for shoddy case management. And, that's a nice compliment for sure - but, in the immortal words of Carrie Bradshaw (Sex in the City): "I couldn't help but wonder...": What about all the people with mental illnesses whose families have given up on them?

"Hold onto the hope and keep moving forward." Those are the closing words I remember from the last speaker this morning at the NAMI National Convention's education session. All of us in the standing-room-only ballroom were there to honor the various education and support programs that NAMI offers. Consumers, providers, family members and NAMI staffers were invited to offer their stories, and tell how programs like Family-to-Family, NAMI Basics (for families with younger children), In Our Own Voice, Peer-to-Peer and more affected our journeys. Wow. How we all need education. How we all need each other.

My son, Ben, lives with schizophrenia and was doing well until his recent sudden relapse. Of course, we are doing everything we can to bring Ben back from his first schizophrenia relapse in over six years. The process reminds me of what I believe have been the four cornerstones of Ben's recovery from Schizophrenia - all of which were removed too quickly. Recovery from a mental illness is possible, but only if attention is paid to the human being behind the illness. Watch and let me know what you think.

Tops in the NY Times this week are reactions to last week's story about Deshawn James Chappell, a man with schizophrenia accused of killing one of his caregivers in Massachusetts.  There are those (like our family this week, with Ben back in the hospital after six years of success) who experience first-hand how a cutback in services (to save a penny in the budget) can result in a much-more-costly hospital stay, and the necessity to  repeat recovery steps that had worked before. This doesn't even address the human cost. Still, how much worse when the outcome is a horrifying tragedy like the one in reported in the Times; one that many agree could, and should, have been prevented by proper care. Among the points made in the reactions: From a letter signed by John Olham, President of the American Psychiatric Association : "only a very small percentage of people who live with schizophrenia ever become violent, and then it is usually when the treatment system fails them and they discontinue their medications. " Marilyn and Edwin Andrews of Massachusetts wrote: "When politicians try to balance serious budget problems on the most vulnerable among us, we all pay the consequences. The mentally ill may not have the influence of the wealthy or the cachet of popular programs, but they most certainly need comprehensive, decent care. " Solutions? Better care, managed well, can prevent so much relapse.