When my son was sixteen he was diagnosed with a form of schizophrenia called schizo-atypical personality disorder. This disorder is usually a precursor to schizo-affective disorder and can lead to full blown schizophrenia. A full schizophrenic break typically happens post-adolescence and in a person’s early twenties, and if treated properly, it can be managed. If not properly managed it is heartbreaking and terrible for the victim of schizophrenia and for his or her family.
Now, in my son’s case, he was diagnosed with a personality disorder and though it was very hard to deal with, it is probably the most treatable form of schizophrenia. If the victim of the disease is motivated and has enough support, it is possible for the patient to recover and never have another episode. Usually, once a person’s brain has finished developing at around twenty-four years of age, and the personality disorder is well-managed, he or she will have a life that is full and mentally well. It is possible for the patient to be free. Freedom. A precious thing.
When my son was sick, it was a harsh and ferocious experience for everyone in this family. Before I was forced to hospitalize him, he refused to bathe or talk civilly to anyone. He rarely slept and he filled his days with the stoic silence of a prisoner of war, which is what he thought he was. He believed he was an alien, held against his will and that soon he would morph into his true state and join the intergalactic battle that raged across the galaxies. I did not want to admit he was so sick, and I would rage at him to snap out of it, and the bogey-man image of being locked in a psych ward was one of my deepest fears for him. It was a deep fear for me as well because I didn’t know how I could manage the fearsome reality of a mentally ill son.
After I finally hospitalized him, and he came out of the treatment facility, medicated and still very ill, the real frustrations began. First off, I discovered that there is a huge difference in psychiatrists and I don’t believe I encountered a single one in my area that really gave a rat’s patootie for the well-being of my son. The doctor in the treatment center never spoke to me even once. I never saw him and I never had any insights from him. The psychiatrist that saw him after his release gave him pills, lots of pills. The same can be said about the therapists that I tried to connect with to help my boy get better. Schizo-atypical adolescents are not east to treat and most had no idea about how to proceed. I was stymied by poor insurance and the lack of information.
I had several things that put hope in me and helped enormously through the process of Ben’s healing, and if I hadn’t had these wonderful things in my life, I don’t know where we would be today. First and foremost is the reality of our faith in God. Let me state clearly something that is very true, and some of you may be shocked to read this. I have had well-meaning people that share my faith that had the gall to tell me that Ben’s illness was a result of sin and that the evidence of that is that reading Scripture and prayer changed the outcome of his illness. Personally, I think practicing our faith is going to help with everything and my son’s improvement is evidence of God’s mercy, not the removal of sin from his life. Mental illness is not the result of a demon’s possession of a person, it is mental illness. I am not going to expound on this, but the depth of misconceptions about mental illness is shocking to me. These poorly informed opinions are not going to shake my faith, but I will shake my head. Thankfully, most of the people in my faith community were understanding and helpful. Without my faith and the faith I share with my children, I doubt we would have made much progress.
Another thing I had going for me in my quest to help my son is that he has an extraordinary, loving sister. She was a psychology major, and she relentlessly researched my son’s condition, and even though we couldn’t find a therapist, we discovered where to look for help. She fed my fiery desire to help my son, and I became relentless in seeking out information and using the things that I thought were the most helpful. I asked questions and my daughter asked questions, and we began to understand my son’s condition. She was a loving support for me, and a sister that insisted that Ben stay the course. She wouldn’t give up on him, no matter what.
I have to give credit to the community of family, friends, and educators that participated in Ben’s life. In particular, Ben had a counselor at the local high school that was truly amazing. When I enrolled Ben in the school at the beginning of his senior year, she arranged a staffing with all of his teachers that made a huge difference in his year. She facilitated him being socialized and guided him through very difficult transitions. She was amazing, and he graduated from high school in good standing, largely due to her efforts. She inspired others to care for my son, and he had a terrific year. He was still a long way form healthy, but he made great strides because of her extraordinary efforts on his behalf.
Finally, I have to give credit to my son. Personality disorders can be overcome if the person with the disorder can muster the courage and will honestly delve into his or her life and thinking, and to do the hard work it requires to heal. At first it was baby steps:
• Go into the store and use this money to buy milk. Don’t run away.
• Shake hands with people at church. When the music is loud, don’t run out to the car and lock yourself in.
• When the squiggle monsters come into your room, come and get me.
• Don’t invent new ways to walk while we are in the store.
• Take a shower.
• Eat dinner with the family.
• Graduate from high school.
• Reduce your medications
Then the steps got bigger:
• Learn to drive.
• Your mother is very ill, help her.
• Your mother is blind, guide her.
• Take care of the house while your mother gets better.
• Stop taking all of your medications because you no longer need them.
And then my son began to take giant steps:
• Go to college.
• Get on the Dean’s List.
• Search for work to help out at home.
Today my son went to work. It is his first day at his first real job. He is twenty-one. It has been quite the journey. The goal is for him to be autonomous, and he is very near that goal. Today he opened his first checking account, he took me to run errands, he helped me make decisions. It seems the only thing that he still struggles with is going to get his hair cut, and for some reason, he still wants me there when he gets that done. I can foresee a day when he won’t want me there for that, but for now, I am happy to go with him.
There was a time when I thought I would have to take care of him for the rest of my life, and that he would spend most of his days in an institution, but God has other plans for my boy it seems. It seems he will work and go to school; he will tend to the details of his life with mastery and clarity. He will love and laugh and sing in his beautiful voice. He is everything I have ever wanted in a son, and if I need to go to the barber shop with him for a while longer, I will.