Ben Behind His Voices - further out of the shadows

Claire Gerus, my wonderful literary agent can be contacted at cgerus@comcast.net. The original titles of this memoir represent some of the changes we've gone through as a family since its original draft as To Hell and Half way Back, and first revision as No Casseroles for Schizophrenia: Family Lessons on the Journey to Acceptance. Present title: Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal .

And, indeed, the "new normal" remains in progress - but there is happy news.  One of the reasons I wrote this book is to provide a vision of hope for families devastated by mental illness.  Many of the chapters spell out, all too realistically, the years of confusion and chaos, with sidebars of information I wish I'd had before Ben's diagnosis.  And we all know that recovery is hardly a straight, predictable road. But - recovery is possible, with a combination of realistic expectations and persistent watchfulness and hope.

Before the symptoms emerged in  mid-adolescence, one of Ben's most endearing qualities was his way with children - warm, insightful, loving. He was a sought-after babysitter and remarkable tutor.

We lost all that under the illness for many years.  If you have gone through this in your family, I don't have to explain this any further.  But - Ben is still there, indeed, behind his voices, and he is emerging from the shadows more and more, with each day he stays on his meds.  This week I got to observe him teaching an art project to pre-schoolers (a homework assignment for a college class he's taking). I saw, for the first time in years, reminders of the patience, creativity and understanding he used to have with kids.

It is possible.  It's not perfect, but it's possible.

Beyond Trauma

I had the pleasure of presenting with Linda Appleman Shapiro, author of Four Rooms, Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness, last week at the library in Ridgefield, CT. Each time I tell Ben's (and our family's) story, I see at least one face in the audience that seems to open with relief: Can we really talk about these secrets? Is mental illness really not the source of shame I've been assuming it is?

Yes, let's talk. A mental illness is just that: an illness. It is no one's fault. It just is.

Great books for practical advice:
When Someone You Love Has a Mental Illness by Rebecca Woolis
I'm Not Sick, I Don't Need Help - Xavier Amador - great info, "system" doesn't always work, but helps understanding greatly
and - believe it or not, for basics - there are "dummies" books for schizophrenia, bipolar, etc.

What familes need:
Support
Education
Acceptance (Letting Go)
Reality check, Respect, Resilience
Communication
Hope - and, yes, Humor

It spells SEARCH.
My son Ben is living a very worthwhile life, filled with love, even with paranoid schizophrenia. Even so, my expectations have changed. It is a new normal. R for reality...

The letter from Ben, my holiday gift in many ways

This month marks over three years since Ben was last hospitalized. I remain grateful for every day that he is with us, enjoying his family's love. It wasn't always like this. There were times he looked at us with such suspicion that I was afraid to be near him; yet, underneath the chest-tightening discomfort there was always my love for this boy/man, my beautiful child. My mantra has become, "It is what it is" - yes, Ben has changed but he is still here, still worth loving, still with potential to keep recovering.

He has no money, except what may remain from his meager social security payments after group home deductions for room and board. The holidays of 2008 are over, and I have in my possession Ben's amazing gift: he wrote me a letter, handwritten in red ink on a piece of loose-leaf paper. Not fancy, but I know how much care went into it - I know this because I can read his handwriting!

This is what Ben wrote: 1/1/09
A list of my favorite things about you
10. You are always interested in a good conversation.
9. You are fun to be with
8. You have an excellent sense of humor.
7. You unconditionally care for me.
6. You respect my privacy.
5. You can guide me towards being a good person without pushing.
4. You have faith in me; that I can do what I set my mind to.
3. You raised me AWESOMELY - I like how, since I didn't grow up with a father, you made sure there were men in my life.
2. Whenever I need help, you're always there.
1. You love me.

I just want you to know that I think you're great, and not only that, but a great Mom too. You do a lot of things for me that you don't have to, and I really appreciate and respect that. I like that we hang out so much (you are a fun movie buddy), and back when I was using (pot) we wouldn't have been. You taught me a sense of family (not just you), which is something I lost when I was using. Thanks for being a good teacher and a great mother.
Happy Hanukah, Ben

Ben is 26 years old. In 2003, he was hospitalized for psychosis five times, in 2005, twice more. His family's love is a huge part of his recovery - and, of course, so is his medication compliance. The story of Ben's breakdown and recovery, and the family's journey to acceptance, is in my memoir Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal. E-mail Claire Gerus, at cgerus@comcast.net for more information. Meanwhile, feel free to comment here as I continue to blog Ben's progress.