Even today, Randye Kaye can’t really say when the sensitive and affectionate boy who was her son began to slip away from her. But in the middle of his teenage years, something began to change in him.
At first, she chalked it up to adolescence.
“I heard a psychiatrist say, ‘Every teenager is a little bit mentally ill,’” Kayes says. “I think one of the turning points for me was my friends had adolescents, and we could commiserate. Other people were going trhough these things too. But … a couple of years into his midteens, my friends’ kids were getting better and my son was getting worse.”
It was in his 16th year that Ben, once a popular honor student, truly began to unravel. And Kaye, casting about for an explanation, found herself descending into a deepening hell. As he dropped out of school and became increasingly irrational, Kaye sought help from half a dozen pscyhiatrists.
Their diagnoses ran the gamut from ADD to anxiety, depression, OCD and bipolar disorder and each came with a regimen of medications, none of which touched Ben’s symptoms.
And those symptoms were becoming increasingly terrifying. Ben communed with a bush in the yard, spent a day walking along the highway screaming, told her there were psychic vampires out to devour your spirit and talked to his car in the garage.
Finally, Kaye found a pamphlet from the Connecticut Chapter of National Alliance on Mental Illness titled “When nobody understands….NAMI-CT does.” And three years into Ben’s illness, Kaye went to a family-to-family meeting in Trumbull, where she confirmed at last, from families who were going through the same hell, what it was that had taken over her son: schizophrenia.
“I went, ‘Omigod, my son is not stubborn and poorly raised; my son is ill,” she says. “That moment is both devastating and a release. I could stop blaming him and blaming myself … Family-to-family is what turned it around for me.
“NAMI saved my life,” she says. “Without the education I got at NAMI, without the opportunity to meet other famillies, I might have given up on my son. It saved my life by teaching me what I could realistically do …
“It saved my life by teaching me how to be real about getting my son back into our family, and he is back in our family. He goes to work; he goes to school. I don’t think any of that would have happened if I hadn’t learned about his illlness, and I learned that because of NAMI.”
And Kaye came to understand why so many psychiatrists could have been so wrong. It’s extremely difficult to diagnose schizophrenia when it is gradual onset, as it was with Ben.
“The way things stand now we have to wait till psychosis to diagnosis,” she says. “That’s like waiting to stage three in cancer; that’s like waiting till you have a heart attack to diagnose heart disease.”
Today, after seven hospitalizations, Ben is back with his family, and Kaye has received training from NAMI to teach others about mental illness. Also, she has written a riveting memoir, “Ben Behind His Voices,” of her struggle to save her son.
“You need to have education to get empathy,” she says. “And to get beyond the stigma of mental illness.”
And so Kaye urges anyone who has a mental illness, a family member with a mental illness, or simply compassion for those who do, to sign up for the 9th annual NAMIWalk, the organization’s key fundraising event, which will be held at Bushnell Park in Hartford on Saturday, May 19.
The walk is from 9 to 11:30 a.m. and will include face painting and hula hoop contests for the kids, a live band and a breakdancing demonstration. All donations are tax deductible and go to support the free programs NAMI offers across the state.
Persons wishing to participate or donate should sign up in advance by visiting http://tinyurl.com/namictwalk or calling Janice Shilosky at 860-882-0236.
Kenton Robinson is the deputy director of the Eastern Regional Mental Health Board.