This essay in our Peculiar Minds series is written by Judy Hall.
Although it was a relief to have a name for what was happening to our son, Ben, it was still devastating when he was diagnosed with schizophrenia six years ago. Of course, having a diagnosis didn’t mean things were better. Symptoms continued, but now he also had to deal with side effects of the medication he was taking, some of them dangerous. We felt like we were in a never ending cycle, moving from one crisis to another. It was and still can be exhausting and overwhelming. On top of that we had real life with four other children (ages 10-24 at the time), including jobs and church callings.
Schizophrenia is never in anyone’s game plan. Historically thought first as a mental or moral defect and then a mental illness, current science recognizes it as a biological neurological brain disorder which affects and distorts thoughts and perceptions of reality. It is a very severe, usually persistent illness that manifests itself in a variety of symptoms. These symptoms are varied between individuals with the same diagnosis. The causes are not known, although it appears that there are both genetic and environmental events involved.
Ben struggles with constant thoughts in his head which don’t feel like his own. Noises and other perceptions of the environment compete with people’s voices which cause him difficulty in focusing or processing information. He deals with a lot of anxiety in social situations. He suffers from paranoia which means he feels danger from things or people who aren’t a danger to him. He may feel people can read his thoughts or that they are thinking bad thoughts about him. He can become agitated for unclear reasons or if he feels stressed by us or something in the environment. He is currently unable to work and spends most of his days on the computer except for doctor’s appointments or attending groups and completing small errands. Medications create their own problems, one being that he doesn’t feel the Spirit.
Ben once described one aspect of his schizophrenia this way:
When my mom goes to our local grocery store, she knows what she wants to get and where it is at. She likes it when she runs into people she knows because she likes talking to her friends. When I go in, I see someone looking at me and my schizophrenia brain says “He thinks you are too tall.” Then I think, “that isn’t right,” until I see someone else looking at me. One part of my brain says, “that person wants to hurt you.” And that is how I go through the whole store, worrying about what others are thinking, but the other part of my brain is saying that it isn’t true. By the time I get home, I am so tired I often want to sleep or I am agitated. It is easier to stay at home.
For us there is the loss of the Ben we remember and the Ben we hoped to know as an adult. In his place is a different Ben. He looks like the old Ben in some ways but without the hopes, dreams, and ambitions of the past. Even his smile and laugh are different; only rarely do we see a glimpse of that old Ben. It is a hard adjustment and it is a continuing one.
We are fortunate in that Ben has allowed us to be very open about his diagnosis from the beginning, but it is hard to explain schizophrenia. People expected he would get better if he took medication (so did we at first). Family members wondered why he could be at some events and not others, especially “because we all understand” (not really—even as his parents we don’t understand how Ben feels). And though people would ask at first how they could help, we didn’t even know what we needed. Over the past six years, we have learned things which do help us:
- We do appreciate people asking how Ben is doing and also how we are doing. One time early on someone asked us how we were doing and I replied, “I haven’t killed him today.” They laughed, we all did, but when they stepped away, my husband leaned over and said, “They don’t know how real of a goal that is for us.” Not that we were close to killing our son, but some days we felt so frustrated and incapable as parents that we chose a target we could achieve. That became our tagline for really hard days with Ben. It helps to laugh.
- Random acts of kindness matter. When Ben is in the hospital we don’t need meals daily. However, a loaf of bread or a note is appreciated. In addition to showing love to us as friends, it often reminds us that our Heavenly Father is mindful of us.
- Although Ben is anxious around people and social situations, he appreciates when people greet him briefly when they see him at our house or on a walk in the neighborhood.
- And sometimes, we (mainly me) need a place to complain about this medication or that agency or about the illness in general. I know that people don’t understand and can’t fix it, but listening does matter. Mostly, I am just sad and angry that Ben and all of us have to live with schizophrenia.
Ben once commented to me that if we get to heaven and discover that he had to have schizophrenia so that I would make it to the Celestial Kingdom that it would be okay, because he loves us that much. But he would probably be mad about it for awhile. I certainly hope that is not the case. I would be heartbroken that my son had to pay such a price for me.
There are moments when I am reminded that our Elder Brother and our Heavenly Father actually paid that heavy price for me. They stand ready and able to render the aid that we each need to make this journey successfully. One day when I was praying about Ben and his illness, I expressed my feelings that it seemed so wrong that Ben or anyone would have an illness like schizophrenia. The answer was immediate and clear:
Don’t worry about Ben; he will be fine. You make right choices.
So for now, it seems like the journey is about me: my actions and reactions, my caring, my submission, and my asking and receiving from our Heavenly Father. As for Ben, he clings, “to a memory of a hope that I once felt a testimony of [the Church], and it will be worth it in the end.” That is what we cling to as well.
Judy Hall does all the typical things LDS wives and mothers do, although cooking and sewing aren’t her favorite. She was raised in Washington and Texas. She graduated from BYU with a BS in psychology and a MS in school psychology, and in the middle of that she met and married Gary Hall. They are the parents of five children. They have lived in Missouri, Utah, Hong Kong, and Texas, and now in Utah again. Judy enjoys reading, traveling, BYU, the ocean, giving parties, lunch with friends, and serving in the community.
The Entire Series
- Forum – Is Mental Illness a Latter Day Plague?
- Resources (research)
- Resources for Help with Mental Illness by Paul
- Understanding PTSD by Robin Grosland
- Anxiety Disorders, Including PTSD (research)
- The Diagnosis by anonymous
- Understanding Asperger’s by Kathy Ward
- Understanding Dementia by Cassandra Jones
- Different Issues for Children (research)
- Asperger’s and Autism (research)
- Simply Depression by Jendoop
- How to Help Someone Who is Depressed: an LDS perspective by Sarah Hancock
- Forum – Does Committing Suicide Consign Someone to Hell?
- The Well of Depression by Cheryl
- Panic, OCD, Grandma and Me by NotMolly
- Understanding Panic Disorder, Agoraphobia, and OCD by Robison Wells
- Free at Last by anonymous
- Forum – No One Wants to Hear They’re Wrong
- Understanding P0rnography Addiction by Dr. Kevin Skinner
- What is Real? Living Without Diagnosis by anonymous
- A Reader’s Story of Hope by anonymous
- Understanding Bipolar II Disorder by Tresa Edmunds (Reese Dixon)
- What is Bipolar Disorder? (research)
- Choosing Treatment through Revelation by Bonnie
- Overcoming Anxiety and Depression Without Medication by Aaron Anderson
- How Do We Embrace Those with Mental Illness by Jendoop
- What is Schizophrenia? (research)
- Understanding Schizophrenia by Judy Hall
- Understanding a Roommate with Schizophrenia by anonymous
- Understanding Borderline Personality Disorder by Melissa Horsley
- My Path Down the Rabbit Hole by anonymous
- Mental Illness FHE Lesson by Jendoop
- Healing by Michelle