Loving through mental illness: “It’s like he disappears…”

Sometimes we say things, and they stick.  Ever have someone repeat back to you something you said which touched them, even changed them, and you had no idea you’d said it? That’s how interviews are sometimes.

Two years after Ben Behind His Voices was published, I still get the chance to spread the message of our story, and for that I am grateful. I feel like the book’s journey has just begun, and though I plan an updated version sometime in the next year to include the latest developments, many tell me that the story is timeless to them, as it reflects where their family is right now in the mental illness journey – or where they hope to be. Others simply like its message of resilience, strength, and hope – regardless of the cause of the challenge.

Tomorrow night I look forward to a book-reading and Q/A at Plainville Public Library in CT.

Here is Lisa Capobianco’s story about it in the Plainville Observer, including the quotes I’d forgotten I’d said – to which I added my own italics…

Author to share story of coping with son’s mental illness

November 8, 2013

By LISA CAPOBIANCO
STAFF WRITER
When national voice talent and actress Randye Kaye noticed her 15-year-old son Ben experiencing mood swings, frustration, and isolation, she thought he was going through a phase as a teenager. But as Ben transitioned into early adulthood, his symptoms worsened, and little did Kaye know that he was exhibiting symptoms of gradual on-set schizophrenia.
“This was beyond what I expected,” said Kaye, a former host of a morning radio talk show in Connecticut. “I did not know anything about it—I really had to learn and explore.”
Schizophrenia affects 2.4 million American adults age 18 and older, according to the National Alliance on Mental Illness. NAMI reports that schizophrenia, marked by changes in brain chemistry and structure, may inhibit an individual’s ability to think clearly, to make decisions, and to manage emotions. Individuals with schizophrenia may also exhibit hallucinations as well as delusions, and may have a difficult time performing complex memory tasks.
For Ben, he began experiencing delusions at age 17 when he decided to drop out of high school without a realistic plan, and started smoking marijuana. Struggling to find help for Ben as doctors misdiagnosed her son’s illness, several years passed before finding the right medication. Ben was diagnosed with schizophrenia at the age of 20.
“I learned to have empathy for my son and how I could help him”, said Kaye, who also serves as a teacher and advocate of NAMI. “When you lose a child to mental illness, it is like he disappears.”

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One thought on “Loving through mental illness: “It’s like he disappears…”

  1. Thank you for sharing this…I have a friend with a blog and a FB page called Loving 1 With Mental Illness. Also interesting is that many of my new friends say that it seems their son or daughter disappeared. In Tall Paul, I wrote how I lost the Old Paul, the Tall Paul, I knew and loved as a child, but I learned to love the New Paul.

    I used to tell people that I sometimes thought it would have been better had Paul died when we were 16, when we lost him that first time to severe schizophrenia. Of course I immediately felt guilty for saying it, but I had an open wound of grief over the loss of my “twin-ness” and Paul was living in his own hell. It was an honest emotion. In the end, I wouldn’t trade those few, final, years with the New Paul for the world, after he got on Clozapine, but it was heartbreaking to lose him for a second time to cancer.

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