John and Sophie are longtime Westporters. In the late 1990s their son Justin was a Staples athlete — and Block “S” winner. Today he lives in a group home. His life has been shattered by mental illness — a horrible disease that has affected his entire family.
John and Sophie have been upfront with friends and neighbors about Justin’s illness. However, to protect their son’s privacy, all names are aliases. Here is their story.
“I feel like I lost my child some time ago,” Sophie says. “He is physically alive, but he’s not the Justin he was, or would have developed into. He was such a different person in high school.”
Loss and grief are always with Sophie. But certain events — like the Newtown killings — brings those emotions closer to the surface.
Sophie believes there is more to Adam Lanza than the label “autistic.” “Was there ever a professional assessment?” she wonders. “Autistic people don’t typically react violently.” She thinks there was much more going on in his life.
When she hears that Adam Lanza spent 2 years in his mother’s basement, spiraling downward, Sophie can relate. “People can’t control things that are in their head,” she says.
“Adolescence is a time of change. You experiment with new friends, and doing things in different ways,” Sophie notes.
“Justin had been a good kid. But every kid needs to separate from his parents, rebel, be assertive. It was hard to tell what was mental illness, and what was age-appropriate behavior.”
Sophie’s sister developed schizophrenia at 20, so she worried about Justin. When she asked directly if he heard voices, he denied it. Eventually, he told her he was having “conversations” with people in his head.
The voices grew stronger. Justin felt “spirits” inhabited his body. He was afraid they would “jump” to his parents and siblings.
Justin decided to commit suicide. That way, he thought, the spirits would die with him. But he believed in reincarnation, so he would be okay. One winter day, he was talked down from the George Washington Bridge. He later said he was glad to be saved.
By that point, he’d already been hospitalized. He’d also run away.
“It’s hard for anyone to accept that they have a chronic major illness,” Sophie says. “It’s especially tough with something that affects your mind.
“The mind is the last bastion. It controls everything. You can lose your limb, and get along. But if you lose your brain, what do you do?”
It took Justin years to accept that he cannot work, or live on his own. He’s been in a couple of different group homes.
“He has problems in large groups of people,” Sophie says. “He thinks they’re saying bad things about him. He’s afraid for his life every day. It’s a constant battle.”
“He was social, he had great friends,” John adds. “And now it’s very hard for him to be with people. He doesn’t remember being well-liked, or a good athlete. The past he remembers is not the one we know he had.”
He has not been back to Westport for 5 years. Too many places hold “psychotic memories of bad things he thinks happened here,” his father says. “This is a hostile place for him.”
The more he stays in one place, the more fearful he becomes. That’s why he’s lived in several different residential facilities.
Justin, he says, is very lucky. “He is very loved, and he is provided for. He has supervisors, and professionals who can provide activities and discuss his fears. He has some quality of life.”
Justin’s days follow a pattern. He gets up, and goes downtown for coffee and cigarettes. He returns to his facility for group meetings and chores. He’s usually in bed by 9.
Justin’s care is very expensive. His family has spent hundreds of thousands of dollars on his care. Eventually, the funds will run out.
Sophie knows that Justin is one of the “lucky” ones, because he is loved and cared for. Her family is “extraordinarily lucky,” because they can take care of him. She worries about all those suffering from mental illness who do not have the resources and opportunities her son does.
“It’s easy to put people in a box, categorize them,” Sophie says. “It makes you feel safe. But mental illness is complicated. The more people talk about it, and see the complexity of it, the more they may ‘get it.’”
Living with a mentally ill family member is, she says, “a long slog.” By telling their story, she hopes, people will understand her son and his disease — and all others suffering from and affected by it — just a little bit better.
(Sophie recommends a novel — Wally Lamb’s I Know This Much is True — as an excellent portrayal of mental illness’ impact on a family. She also offers these resources: http://www.swrmhb.org; http://www.mindsontheedge.org; http://www.nami.org; http://www.ct.gov/dmhas/cwp/view.asp?a=2902&q=335208&dmhasNav=|.)