State Of Mind Profile: A Vermont Mother
Special focus has been placed on how the state delivers care to mentally ill Vermonters ever since the State Hospital was flooded in Tropical Storm Irene more than two years ago. Politicians, doctors, and activists have debated how many beds are needed for the sickest patients, how much money should be spent on community mental health centers, and what kinds of programs might work best. But sometimes lost in the mix are the stories of those dealing with mental illness.
VPR's series of special reports on mental health care in Vermont, "State of Mind," includes personal stories of Vermonters who have lived with mental health struggles.
This Vermont mother asked us not to use her name. Her adult son has schizophrenia. He’s been hospitalized 17 times, but he doesn’t believe he has a disorder. She advocates statewide for improvements to the system. And she says it’s important for people know what it’s like to love someone with severe mental illness.
Here is her story:
My son suffers from childhood-onset schizophrenia, which is a particularly virulent form of schizophrenia. He started to demonstrate symptoms as early as pre-school, maybe as early as age 1 in retrospect.
Extremely paranoid behaviors, always getting into trouble at school. Fights with peers, especially, but also with teachers. Accusing everyone, including our family members and teachers and other children of being against him and doing things to harm him. He would get in a lot of altercations, verbal and physical. Ultimately, police escorts had to be called. So he missed about 20% of junior high and high school being suspended.
He got diagnosed at age 18 after what I would say was clearly the first psychotic break. Since that, he's been in and out of hospitals about 17 times.
He has a condition called anosognosia, sometimes called lack of insight. Turns out with schizophrenia and other serious mental illnesses, about 50% in schizophrenia, the brain is affected in a way so that they don't understand they've got anything wrong with their brain.
He can hardly talk now, he's so catatonic, so it's very hard to engage in conversation. But back when he could talk more, I think what he thought, based on what he told me, is that he thinks people think he has schizophrenia. he knows they've said that. But he thinks they are wrong, and he doesn't have it, and that the drugs make him feel bad.
For the most part, he lives alone, doesn't have friends, can hardly talk. Personal hygiene, which was one of the last things to go, has gone. He rarely rarely showers and is very disheveled, hair is very long and unkempt. So he only has really contact with me. He's paranoid about his father who loves him and would help him and tries to, but he's afraid of his father.
It's destroyed his life, destroyed. He was brilliant. He was brilliant in math and science.
For our family, the emotional burden has been way way worse than the financial burden. Part of that is because we're not paupers, we're just solid middle class. And part of it is because our son denies all treatment that's not forced on him so the bills aren't as huge as they would be for somebody who accepts treatment.
People like me live with chronic sorrow, interspersed with moments of sheer panic and utter despair. And part of the constant feeling is an intense sense of hopelessness and helplessness.
I keep reining myself in and trying to remind myself: nobody gave my son this disease. He was probably doomed at birth. No court system, no doctor, nobody else gave him this disease. It's clearly not my fault. People try to blame me to this day. Doesn't hardly bother me. I mean, it rips me, it does. But I just know they're the ignorant ones and I know the facts.
And the big problem is that the disease is such a formidable enemy, nobody knows what to do! As a legal system, as a community, as a medical community, we're so helpless in so many ways against the most severe cases of this disease.