Hope and Learning
Questions and answers with author Linda Snow-Griffin
By Treatment Advocacy Center
As part of our ongoing author series, we interviewed author and family member Linda Snow-Griffin about her book, Hope and Learning: Our Journey with Schizophrenia. Snow-Griffin, who holds a PhD in counseling psychology and practiced psychology in West Chester, Ohio, describes her journey raising her son, Jacob, who was diagnosed with schizophrenia in high school. What follows are highlights from our conversation:
How would you describe your book?
The book is a hybrid book. So, a part of it is a memoir of my son’s journey through schizophrenia, his treatment and his recovery. And it’s also a professional description of recent research about schizophrenia, about the stigmas and stereotypes associated with schizophrenia, the family impact and caregiving. I wrote it as a book that I would like to read; a book I wish I had 20 years ago. And as I began writing it, I realized that I really wanted the general public to understand this illness because it is so misunderstood.
When did you first get the idea of writing a book?
At first, I thought that I wanted to gather stories of other people going through similar journeys. So, I was going to make it a composite, and as I was talking to a friend, she said, “well why don’t you first write down your own story?” So, I decided to write my own story. What is really interesting is recently I was looking through my document history on my computer and I saw that I had started this story over and over again many times since 2008. Each of those stories always began with the same scene, the same one I go with in the book, finding my son’s journal about how he has schizophrenia. Discovering that book really imprinted in my brain and it’s been the theme every time.
You write in the book that you were confused when you first heard the diagnosis of schizophrenia. How did you handle this?
I was confused because it caught me off guard. I just hadn’t expected it. I didn’t know of, at that time, any genetic connection. He was being treated for depression and he had just finished an intro to psych course in high school so I thought, like a lot of other people that take their first psych course, that he identified with a diagnosis. People do that in medical school too. So, I thought it was an exaggeration of what was going on with him, but then when he really talked to me, and went on about all the different voices he was hearing, I realized that he had diagnosed himself. And that was astounding.
How did you deal with the isolation the diagnosis brought you?
I felt really isolated for a lot of reasons. One, I didn’t know many people with schizophrenia. I didn’t know a lot of people with sons and daughters with schizophrenia. And then when I began to tell people that I had known for a long time because I was sad and needed support, they usually backed away. If I had said he had cancer I think I would have gotten a different response, but people didn’t really know how to respond to schizophrenia. I ran into a lot of misconceptions.
There is an entire chapter dedicated to the guilt you specifically felt as a mother. How do you feel now?
Guilt as a mother has many layers. I think sometimes as soon as your first child is born you begin feeling guilty because you are always thinking what am I doing? Am I doing something wrong? Why is he crying? I must be doing something wrong. And then I think about how in the mid to late 20th century, physiatrists often blamed mothers for anything that went wrong with their kids. If you were a distant and cold mother you were bad. If you were over indulgent you were bad. If you didn’t validate your children’s every feeling you were bad. It always weighed in my mind and many other mothers in my age group.
The schizophrenia diagnosis did not make it any better. The early theories about schizophrenia are associated with things that mothers did wrong. But I have gotten over the guilt. The first year I just had to do lots of research to figure out if I was at fault. I went through all the old stuff that I knew and I read all the new research and I realized that schizophrenia is not the mother’s fault. It is a genetic neurological disorder. It’s something that I couldn’t control. That was a huge relief. It let me let go of that guilt and focus on what he really needed.
How valuable was outpatient treatment for Jacob?
It worked out really well. He spent three weeks from 9 to 4 in the program. He got a new physiatrist that helped him tweak his medication, and begin to treat him for anxiety which he had not been. He had individual therapy, group therapy and he participated in classes where he learned how to deal with stress, how to manage his symptoms, his voices in particular and classes on setting personal and professional goals. By the time he finished the program he was ready to find a new job, and he found one at a retail computer store that he really liked.
This quote really stuck out to me: “Schizophrenia is an individual diagnosis, but the illness impacts everyone who loves and cares for someone who suffers from it.” Can you elaborate on this?
Families are like systems or units and there are lots of interdependent parts. So, when one part of that system is hurting or not working as well all the other parts are hurting as well and have to make adjustments. And that’s exactly what happened to my family. My husband and daughter were both very open to learning as much as they could about the illness, but each of us had our own ways of dealing with what was happening with my son.
Best caregiver tip you wish you had?
I wish I had the perspective that I have now, knowing that Jacob was going to get better. The other big tip is that it’s important to begin the journey with a focus on what progress is being made. Whether it’s big or small. Small changes could be like now they’re brushing their teeth every night or it could be a big change like this medication has completely stopped the voices. Focusing on small and big changes helps you get through that recovery process and helps to provide hope during that time.
How is Jacob doing now?
He is doing great—he has made such strides that I never would have thought was possible twenty years ago. APA published four criteria for recovery from severe mental illness: good health, physical and mental, and that’s what he has. A safe and stable home, he lives with his wife and brother-in-law. Meaningful activity and a sense of purpose, he has that with his job and with caretaking his family. And social support and community participation and he keeps in touch with a lot of friends. So, he’s doing well.
What do you hope people take will away from the book?
I’m hoping that people will come away from the book understanding that schizophrenia is complicated, but manageable. It’s manageable. There can be recovery in the process. I hope people will accept and understand schizophrenia more. And not fear it and distance themselves from people experiencing this illness. I think the best way to encourage treatment is to provide acceptance and understanding.
-- Elizabeth Warner