Ben Behind His Voices Blog
One Family’s Journey from the Chaos of Schizophrenia to Hope
NEW!– the Ben Behind His Voices audiobook has been updated with a new intro, epilogue, and bonus material! – available only in audiobook form. (updated 2022)
Hear all of the original award-nominated memoir, and find out what has happened in the decade since. We continue our journey through crisis, help, and into hope.
Jared Lee Loughner,tragedy, and ignoring the signs of illness
Every situation is different, I know. I cannot sit here and write about any magic formula to have prevented the tragic incident that happened in Arizona, where Jared Lee Loughner caused so much heartbreak in mere moments. But the fact that keeps bouncing around in my head is this, from a promo for Diane Rehm's NPR show of 1/11/11 (worth a listen, definitely): "The National Institute of Mental Health reports six percent of Americans over the age of eighteen have a serious psychiatric illness. A look at the challenges of identifying young adults with mental disorders and why so many don’t get treatment."
Maybe, just maybe --- if there had been more understanding, better education, earlier treatment, reduced stigma, more supportive services for Jared, more support for his family --- maybe those people in Arizona would be alive today. I can't say for sure. But I know that, without the treatment that my own son Ben finally is accepting, and without the family love that stayed with us throughout all the chaos of his schizophrenia diagnosis and treatment, he could be off somewhere doing something horribly newsworthy. He might have commited suicide. He could have frozen to death in an Montana cold snap, homeless. He could be locked in a nursing home for the rest of his life. He could have...I can't even think about this anymore.
Right now, Ben is safe, loved, living in a group home, and doing well in school. Maybe someday he'll have a job. For now - it's good. It's very good. We love him. We have him.
Ben's nature, fortunately, is sweet, and he has never been violent, even in psychosis. But that is no guarantee that he would make good choices. Oh. No.
My hope is that Ben Behind His Voices, when published this summer, may open a few more eyes to the needs of consumers, families, and providers and agencies who so desperately need education, support, finances, housing, understanding, respect, and integrated treatment.
Legislators, on state and federal levels: Come on! Don't vote to save a penny in "services" that could lead to the much higher costs - in every way - of another incident like the one that killed so many lives and dreams.
insight?
So yesterday Ben was visiting for the weekend (we went to see two outdoor theatre productions, which he loves - and I think he followed the plot of Much Ado About Nothing better than my fiance and I did...), and he told me that he'd been talking to another person who lives in supported housing with med supervision, etc. He said - and I quote - "He's diagnosed with schizophrenia, too." - WHOA! Milestone. Ben seldom acknowledges his diagnosis, and I"ve learned not to bring it up.
I simply said something like, "Oh- that's interesting", but inside I was heartened. One more baby step. If I don't push, if I let the journey be his journey, if I keep the right combination of letting go and encouraging progress, hope lives.
This morning there is an article in the paper from the AP, "Scientists try to stop schizophrenia in its tracks". Schizophrenia's prodrome - validation for need of early detection. http://news.yahoo.com/s/ap/20090726/ap_on_he_me/us_med_stopping_schizophrenia
college admission, and new research
News came in Google alerts today: "Schizophrenia may blur the boundary between internal and external realities by overactivating and hyper-connecting a brain system that is involved in self-reflection, and thus causing an exaggerated focus on self, a new MIT and Harvard brain imaging study has found." This is a new research finding, and it could explain a lot about Ben and his difficulty in seeing outside of himself. He tries, though - oh, how he tries to act as if he is interested in others. He hugs us, says he loves us, goes through the motions - and, sometimes, I even see the spark in his eyes that used to be there, like a candle struggling to remain lit. I know that he experiences and expresses love as much as his illness will allow. I also know, for sure, that he feels the love from his family and that it is essential to his recovery.
This afternoon we went to the local community college; Ben wants to sign up for classes again. I am both proud and worried about this. He was so sweet - introduced himself to everyone from the advisors and the bursar to the bookstore security guards and shook hands all around. He seems so happy to be going back to school. And yet -there was more than his usual amount of retreating inside of himself. I caught him muttering to himself a few times, or wearing that cagey expression on his face that says he doesn't quite trust the world. When I looked at him, he snapped immediately out of it.He kept saying "Thanks so much Mom. This is great!" What choice is there but to support this, his plan to take six credits and get good grades? I can only hope. I want to threaten him, to make sure that he knows not to blow it. This nagging, I know on a deeper level, will not help. But it's really hard to keep my mouth shut. Ben had initially decided to take only three credits, which seemed much more manageable to me. But it's his life - especially after I fill out the financial aid forms for him, so he can pay the tuition. I've laid out the money, but am going deeper and deeper in credit card debt trying to supplement his meager income from social security. I am more than broke. Where are the caseworkers to help him with these forms? What would happen to Ben if he had no mother around?
Do I do too much for him? I don't think so. He lives in a group home where his benefits cover room and board with $20 a week in spending money left over. I help out by paying for the dentist, supplementing his food with a $100 budget each month (he shops and keeps track), and getting him cartons of cigarettes. Beyond that, Ben has to budget his money. It doesn't go very far. He's working on getting a job, with an employment coach. That's in his lap. His life is in his own lap, and I can't let it break my heart that he has so little in the eyes of the world. Ben is almost 27 years old, and his friends from high school passed him by long ago on the standard paths. This is Ben's journey, not mine.
Ben wants so much to be normal. Will his illness let him have this dream? Will the stress of college be too much for him? Will he wind up overwhelmed, and escape with a psychotic episode like last time? Or will he be uplifted by this chance to rise to the occasion? Will he make some new friends at school? Will he ever get to the point where he accepts what has happened to him, so others he meets can accept and understand it as well?
Classes begin next week. Stay in the moment. I'm proud he has come far enough to try this.
Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal.
contact Claire Gerus, literary representation.