Understanding Schizophrenia

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by RI Editors

This essay in our Peculiar Minds series is written by Judy Hall.

SchizophreniaAlthough 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.

JudyandBen 027Judy 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.

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photo by: Caste.

4 Responses to Understanding Schizophrenia

  1. Janet Clawson says:

    Judy, as a mother of a child with a number of physical and cognitive disabilities, I so understand the “I haven’t killed him today” tagline! There are days when I am sure that I do not have the patience, persistence or perception to deal with my life as it is currently presenting itself.

    Sometimes, like you, I would also give anything for someone in our extended family or in the world at large to “understand” our situation and my kid. But then, I know that I don’t really understand it or him either — and if I can’t, how can I expect someone else to do it?

    I will tell you though, one of the greatest strengths that has come to me in facing what I know will be an entire lifetime of responsibility for a child who cannot take full responsibility for himself. It is learning that part of the trial and the blessing of his life has is wrapped up in what I am to learn and become by being his parent. I too had an experience like yours during prayer, where basically the Lord told me that there was not a thing wrong with my son — that there was nothing to fix, and that he would be absolutely fine. I was given to understand that the burden of fixing something rested on me — on my attitudes and my heart.

    That is an experience I had years and years ago now, but it still drives all my work as a mother — and especially, as HIS mother. I hope and pray every day that I will get to a point someday in a celestial world, where I will be able to carry on a normal conversation with this child of mine — and I hope like anything that I will not be the one who deprives myself of that experience by not being the kind of mother I should have been to him in this life. Some days, it looks like a very long road to walk. Some days, honestly, I wish I could have a vacation from the plan for his life and mine! But — that’s not the plan. I’ve got to go with the plan — because like it or not, it’s going to get us both back to Father in Heaven, if we can both just do what we need to do.

    • jendoop says:

      Because I know you and your son Janet, your response brought tears to my eyes. I hope that one day I will be able to have an experience like the ones you and Judy have had in relation to your children’s issues. Deep breaths, I’m taking it one day at a time.

  2. jj2day says:

    I agree with the idea of random acts of kindness. I suffer from different mental health issues than the author’s son but her suggestions are fitting for many other situations. I don’t need constant attention or concern from those who are trying to help. but random acts of kindness remind me of how much people do care and it helps bring me out of my own mind and focus on being grateful for awhile.

  3. Paul says:

    Ben’s self awareness is remarkable; what a blessing you both can share that.

    Janet, I so identify with this sentence from your comment: “But then, I know that I don’t really understand it or him either — and if I can’t, how can I expect someone else to do it?”

    In my co-dependence I have such a desire / need to fix things, to make them better, to make others happy. The inability to cure my children (or at least facilitate a cure) is a never-ending struggle for me.

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