Ten years ago, I was mourning the loss of my adult son, Ben.
No, he had not actually passed away physically; instead, his life, it seemed, had come to a complete stop mentally and emotionally. All his dreams—and ours—for his future had been stolen by a devastating chronic brain disorder called schizophrenia.
Ben was an adult when he was diagnosed and it had an impact on our whole family, as we had to adjust to our new reality. My sweet, smart, kind, popular, energetic son had become someone people saw as the neighborhood weirdo, wandering in his bathrobe, muttering to his voices. And we, as a family, were forever changed.
After his diagnosis, Ben worked with his doctor, trying multiple oral medications and a once-monthly injection, to find a treatment plan that helped him. After years of chaos and confusion, we finally found a treatment that reduced Ben’s symptoms enough to bring him partially back to us.
At the end of my book, Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope, I wrote that I know I must fully accept the fact that my son may never work again. Today, however, thanks to his treatment plan, which includes supportive elements, I can happily eat some of those words. Ben, an adult with severe paranoid schizophrenia who has experienced 8 psychiatric hospitalizations, 2 arrests, and 5 years in a group home away from his family, is now a proud taxpayer. He has a job as a restaurant server and has been praised by name by customers in online reviews. He lives at home with us and participates in family life. He has friends, drives a car, pays his bills on time, and has completed almost 60 college credits.
It feels like it is a limited miracle—the miracle of (almost) ordinary.
Here are 4 major pillars of supportive therapy I have found that support Ben through his journey with schizophrenia:
- Treatment: Treatment plans are unique for each individual, and, therefore, should be developed with a healthcare professional. Finding a treatment plan that works may include medication, therapy, and other elements.
- Structure: It helps us all, but particularly comforts those whose thoughts tend toward the scattered.
- Purpose: Vital for anyone’s mental health, not just for those with a mental illness. For Ben, this has meant that his desire to live and improve has always been heightened when employed. Volunteer work, school, and now his job have made all the difference for him.
- Love: Having relationships to provide love and support like family, friends, and community.
We’ve come a long way together. But are we out of the woods? Hardly.
There is so much more that needs to be done. For instance: enabling treatment choice, streamlining and funding the process for getting help, educating employers about mental illness, and reducing stigma and increasing respect.
There are golden moments that remind us he is—and always has been—“in there,” somewhat obscured by the fog of his illness. It’s the little moments of normalcy like when Ben laughs with us, or buys his sister a perfect birthday present, or gets down on the floor and plays lovingly and hilariously with his nieces and nephew that keep us going.
After each day, we feel we have bought another 24 hours of a sort-of-normal life.
But we’ll take it. Because we are aware of the alternative for Ben—hospitalization, homelessness, jail, or worse. And we don’t want to lose what we have, precarious as it is.
Rebuilding, or what I call supportive therapy, is far from guaranteed. But it is possible. And it begins with that belief, a vision, and more attention paid to the potential of those with mental illness—respect for them and for their families.
Let’s keep working hard, together, to restore that hope and to change schizophrenia expectations, for those with schizophrenia and for their families.
See other #ChangeSchizophreniaExpectations stories from individuals advocating for better understanding and outcomes in schizophrenia on TheMighty.com.
Randye has partnered with Janssen Pharmaceuticals, Inc., to share her story. She has been paid an honorarium for her time.