The other day I was at a business conference. During a break, I found myself listening to a conversation two people at my table were having. Each had a child with schizophrenia. Both children had their first psychotic break after 18 years. Both were struggling with finding the right treatment and support. Both were agonizing over the lack of treatment and stress of having an adult child with mental health issues living at home.
I sat back in my chair, closed my eyes and thought of my brother. John is my older brother and he is schizophrenic. I know intimately what it is like to have schizophrenia in your life and what it does to a family. I could actually feel the agony of these two parents. I understood the frustration of not knowing how to help or who to ask. I know the silence that permeates the house because no one knows how to talk about it. I remember the child’s fear of, is this contagious?
I also know the hell that the person with schizophrenia lives with. As a child, I realized my brother had odd quirks. I never let anyone say anything nasty or bad about him. I was his lone and ardent defender even to my parents. But a schizophrenic has no control when the illness is raging and over the years he wore me out.
There were no successful medications when he was first diagnosed. But my brother had something in him and kept looking for help. He was able to get on one of the only medications, Clozaril, that provides a person relief from symptoms like voice and visual hallucinations. He has also been lucky to not have the side effects that cut many people off from this drug.
I finally broke my thoughts and leaned over and asked my neighbors, “Have your children tried Clozaril?” I was shocked to learn that the standard of care in mental illness these days is to try all other medications before Clozaril. How absurd, when the literature shows the success of Clozaril, if tolerated. Why wait for success? Why wait for a person to be able to function? Why wait for relief?
Schizophrenia is a cruel disease. There isn’t an upside. The Clozaril doesn’t cure but contains the symptoms. My brother still has bad days but he doesn’t have psychotic breaks anymore because of the medication and counseling. It still wears me out.