Mental illness is a sucker punch. It sneaks up and hits you hard when you’re least expecting, knocks the wind out of you, beats you to the ground and leaves you wondering what happened.
In the summer of 2001, my son Matthew graduated high school and was thinking about his future when he was sucker punched, struck by a serious psychotic episode, an almost complete break with reality. In Matthew’s mind, voices and distorted images haunted him. He became convinced that people were after him; shadow people followed him. He talked with the dead who lived under the basement stairs. My beautiful son was disappearing into that dark, terrifying nightmare called schizophrenia, and I was in a panic. My son was so very sick, and I didn’t know how to help him. There were people around us—family, friends, professionals—but I felt all alone.
“NAMI understood that mental illness affects more than the person with the diagnosis. It grips entire families.
I had just turned eighteen when I started hearing voices. I remember hearing the voices of old rock and rollers like Hendrix, Joplin and Morrison. They were telling me about smoking pot, telling me about dead people. They told me that my mom was dead, and I believed them. She looked like her skin was rotting, and she smelled dead. I remember when the police came and put handcuffs on me. They drove me to a hospital and left me in a room with a mattress on the floor. I thought I was dead and this was the morgue. I was going to hell.
The morning after Matthew was taken to the psychiatric ward a commitment hearing was held, and a judge decided that because of the seriousness of Matthew’s illness, he would be involuntarily committed in the state psychiatric hospital. Mental illness had stripped my son of his personhood with all the rights, privileges and dignity it conveys, and I had no control of his care. I was broken hearted and terrified as he was taken to the state hospital.
At the hospital, the first line of treatment was medication, lots of medication. Small cups of pills and injections were dispensed to patients who lined up morning, noon and evening. Compliance was coerced with threats of losing cigarette breaks; mouth checks were required. What’s in those psychotropic cocktails? I felt frightened about the medication and potential side effects, but terrified by the possibility that they wouldn’t work. Medication seemed the lesser of two evils.
Matthew had become part of the industrial mental health care system at its lowest level and my life was like a train wreck. Desperate, I asked about programs for the family members of patients and was abruptly told that they had nothing to offer. Family seemed like an afterthought. One doctor did mention that a support group sponsored by an outside organization did meet at the hospital. This was my introduction to NAMI and a turning point in our lives.
While I was a patient the doctors tried a lot of different meds. Sometimes they helped, but mostly they made my brain numb and groggy. My mom would visit me and bring food since I was afraid to eat in the cafeteria. It was a letdown to understand that I had a mental illness. I’ll have to deal with it the rest of my life.
NAMI understood that mental illness affects more than the person with the diagnosis. It grips entire families—damaging relationships, depleting resources and crushing hopes and dreams. The NAMI Family Support Group met at the hospital once a week; I became a regular. For the first time, I wasn’t alone. I was around people who cared and understood. With their support, practical advice and guidance I was able to have an active, positive impact on my son’s care and future. I’ve become the mother my son who is living with schizophrenia needs.
Since my introduction to NAMI, the NAMI Family-to-Family education program, family support groups and the NAMI HelpLine have supported me in ways that make it possible for me to support my son. NAMI and its volunteers have given me so much that now I’m in a position to give back to others through NAMI, so I donate, I speak out—I am involved.
I was in the hospital a long time. When I was discharged, I went to live in a group home for guys with schizophrenia. I’m doing really well now with the support of my mom, the staff at my house and day program. I need to take 16 pills a day, 12 different types of medication to stay well. The side effects make me fat and I don’t like that, but I’m able to work part-time. I barely hear voices at all anymore. In the future I would like to live more independently, work in an office and find a girlfriend.
There is no cure for mental illness, so today Matthew and I talk about recovery. Not recovering the life that mental illness stole from him; that’s lost. Instead, recovery involves building a new life with a valued sense of self and purpose with hope for the future. Matthew will always be working towards recovery. Sometimes it’s a battle—fighting for community support services, fighting against ignorance and stigma, fighting for access to affordable mental health care, fighting against discrimination—but I am there battling for him, with him. People living with mental illness most often achieve sustained recovery when they have an involved family.
NAMI partners with the families of people living with mental illness, giving them the ability to fight alongside their loved one. So speak out, get involved and give support. If mental illness has impacted your life, NAMI is in your corner. And that means the fight isn’t over.
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