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.
Thank you for this, and for sharing Ben and his illness with all of us. I am anxious to obtain a copy of your book; this is exactly the hope and the promise which keeps all of us "intact" when the trials get tough – as they are at present.
ReplyDeleteIn fact, I (the mother of a son a few years younger than Ben) have lost count of the number of hospitalizations of my straight-A, brilliant college student whose studies are continually interrupted by hospitalizations. He is brilliant. Intuitive. Speaks French, Chinese, and is teaching himself German. Got straight A's in every college course that he completed. Completed is the key word here.
He refuses to acknowledge his illness and discontinues anti-psychotic medications the moment he leaves the hospital. If he runs 10 miles a day he can generate a significant amount of endorphins which have apparently helped to stabilize him. Yet discontinued activity and no meds causes him to crash. He tries so hard to stay afloat, and is a master in creating confabulations to explain aberrant behaviors. He is blind to seeing the repeating patterns, and cannot recognize when the downward spiral begins.
The part of the disease that prevents our loved ones from seeing (or acknowledging, or accepting) their illness is not stubbornness or "denial". It is anosognosia -- in my opinion, this is the most insidious part of the illness.
I highly recommend Xavier Amador's book, "I Am Not Sick; I Don't Need Help!" Dr. Amador, a professor of psychology at Columbia University Teacher's College, developed the treatise as he worked to help his schizophrenic brother battle the anosognosia that prevented him from accepting help.
God bless us all, and thank you, Randye. I look forward to hearing your lecture on September 1.
Thanks for sharing your story with me - an all-too-familiar one, unfortunately. And yes, Dr. Amador's book was very helpful to me as well. It helped me to stop placing the blame on Ben. I look forward to seeing you soon at the presentation in Sept.
ReplyDeleteAs for obtaining a copy of the book, I promise to sign one for you - as soon as we find the right publisher! Many say they are so moved by the writing, and the story - and yet are afraid of the market. "Will it sell?" I don't think they realize how many families are affected by mental illness, and need the hope as well as the help. Any forward-thinking publishers out there?
I ran across your site by accident. We first learned that our son, Jonathan, was hearing voices when he drove himself to the hospital on August 23, 2009 at the age of 26. Since then, we have watched Jonathan "recover" and relapse, and continue to deteriorate to where he is now. He's still distracted by voices no matter what medications they give him, although he doesn't seem to be tortured by them any more. I've been fairly stoic about the situation, but my eyes welled up with tears, when I read what you wrote about having lost part of your son's former personality, and that for those of us who have experienced the illness, "no further explanation is necessary." Unfortunately, I know exactly what you mean. Although Jonathan has many strong traits (having attended college on an academic scholarship,graduated with honors and excelled in his career until schizophrenia took its grip on him), by far, his strongest asset was his magnetic personality. I miss him every day, and watching him now just makes it more difficult. I look forward seeing his personality again some day. Thank you for providing hope.
ReplyDeleteI am so thrilled that my words have provided some hope for you; as a fellow "mom" I know we need all the hope we can get, as long as it's not false. I'm so glad you discovered my blog -if you know anyone else who would like to read it, please feel free to spread the word. My memoir,I hope, will comfort and help others as well.
ReplyDeleteWarm wishes and empathy,
Randye