Chris and Kerrin (Chris’ adorable puppy) recently moved to a larger apartment. He went from a studio apartment to a one-bedroom apartment in the same building (making the physical move about as easy as it could get). He and Kerrin had lived in the studio apartment for three years. The small space was beginning to wear on him mentally to the point where he was thinking about moving back to Aurora with Becky and me. As scary as it is for us as parents, living independently is a key to Chris’ continued recovery. So when Chris asked me on a Saturday evening if he could move back home, I wanted to say yes right away but I knew it would not be best for him. I needed to find out why he was asking. Turned out it was simply about space. His studio apartment could no longer accommodate his growing library of books and LPs and after three years it was getting more and more difficult to sleep and live in the same small space. It was becoming a potential psychosis trigger.
With the problem defined, it was easier to identify possible solutions. Yes, moving back home with Becky and me would provide more space but it would be far away from the Capitol Hill neighborhood of Denver he loves so much with its close proximity of friends, record shops, book shops, and coffee shops…all contributing factors to why he is doing as well as he is. Moving back home was quickly relegated to a last resort solution.
How about checking for available one-bedroom apartments in Capitol Hill? But rent in that area of Denver (and Denver in general) has increased dramatically in recent years. Chris’ entire disability check already goes toward rent so that probably won’t work. Or will it? Chris began checking the Internet and found a one-bedroom apartment in a building just one block away owned by his current landlord. And it wasn’t much more than what he was paying now. After checking with the landlord, Chris also learned a one-bedroom apartment was available on the floor above him. As with the other apartment, the rent wasn’t much more than what he was paying now. Yes, Becky and I will help make up the difference. A few weeks later Chris signed the lease and, with help from Becky, me, and some of his wonderful friends, moved in.
Days later Chris sent me an e-mail thanking me for helping him move. He also thanked me for other things I do to help support him. It was one of many similar letters from Chris that invariably leaves me emotionally choked up. In my reply I told Chris I am always happy to help. I went on to explain how helping him gives me a sense of purpose. Then I added “I know I can’t cure your illness but I can try to help remove as many of the rough edges as I can.” Which brings me to the point of this blog.
When I wrote it I was thinking of Becky’s guest blog post from last May when she wrote about Chris’ motivation and purpose as someone with a debilitating mental illness. What is my purpose as Chris’ father?
I had a difficult time shortly after Chris’ diagnosis. Being a proper male, I viewed his illness as a problem I needed to fix. After all, fixing complicated things has always been a big part of my IT career. But I could not fix this problem. No one could fix this problem because no one completely understands mental illness. Not even me. If I don’t understand something, I will try to figure it out. But in this case, the problem was frightening. I did not want to learn about it. I did not want to read about voices, hallucinations, or suicidal thoughts or tendencies. If I didn’t know about them, they couldn’t hurt me or scare me.
Becky began to read voraciously about schizoaffective disorder. She would tell me about what she was learning. I found it somewhat comforting and simultaneously convenient that Becky was taking the lead in trying to figure all of this out because I had chosen to dwell in a cloud of denial. Becky never chastised me and never nagged about my obvious indifference to the situation. I think she knew I would come around in my own time. She is an incredible person. It was pretty convenient for me to occupy my time with going to work and miscellaneous responsibilities around the house. Maybe if I kept busy the problem would resolve itself and all would go back to the way it was. But it didn’t.
My memory is a bit hazy when I think back to those early days. Sometimes I wish I had taken notes or something. But my hazy memory makes sense really. I did not want to participate so I didn’t. I can’t expect to have vivid memories of things I wasn’t a part of. I did not participate partially because I had no purpose…I had no purpose because I didn’t want one. I didn’t want one because I thought the problem was going to go away. But it didn’t.
Chris’ psychologist tried for quite a while to convince me to check out our local NAMI affiliate. Each time I politely thanked her for thinking of me and then dismissed the idea. Joining such a group would be an admission of a reality I did not want to be in. I’m not sure what changed, but one day I agreed to attend a local NAMI support group. I went with Chris’ fiancé at the time. It turned out to be a bad experience. It seemed like an exclusive club and we were intruders. There were few constructive suggestions offered during the meeting…it was mostly a gripe session. I used that experience to my advantage and declared myself vindicated for having avoided such groups. To the psychologist’s credit, she did not give up. Like Becky, she was not a nag. And like Becky, she was quite good at making observations containing hints of suggestions. Just what a stubborn person like me needed.
I can’t say exactly when things started to turn around. It was pretty gradual with no single significant event that I can recall. I didn’t have a sense of purpose yet. For me, I had to have more of an understanding and an acceptance first. For that to happen, I needed more time and more help.
Chris has written about his six-month ordeal with electroconvulsive therapy (ECT) in several blog posts here. Driving him to the hospital in Louisville three times a week (well, almost – Becky and I took turns), sitting in the waiting room for several hours, watching my drugged and barely conscious son being wheeled out to the car, and then driving him back home was gut wrenching. It also served as a catalyst for my acceptance. This was Chris’ reality and it was becoming my reality too. It also had the beginnings of purpose. At the time, my purpose was to get him to the hospital on time, make sure he returned home safely, put him to bed, and then watch him to make sure there were no dangerous reactions to the therapy or anesthetic. I was actively doing something by participating in Chris’ journey to recovery.
Attending the NAMI Family-to-Family class was a significant event for me. Prior to the class I could barely verbalize my thoughts on Chris and his illness. The class gave me a sense of belonging and understanding. We were taught very useful and important concepts on dealing with mental illnesses. But for me, getting to know others who were going through similar experiences was monumental. Throughout the twelve-week class I gained not only a better understanding of Chris’ illness but a greater and more permanent acceptance of it. My fear of his illness was decreasing and my interest in learning more was increasing.
Chris and I are quite close. We do a great deal of talking. I work just three blocks from where he lives so I visit him and Kerrin every day at 12:40. We will go on walks with Kerrin, sit on the steps in front of his apartment building, or just sit in his apartment and chat. As you can tell from Chris’ posts, he has a remarkable insight into his illness. I have learned quite a bit on how to live with Chris’ version of schizoaffective disorder. My participation in those conversations have helped me far more than any book I could have read on schizoaffective disorder. But don’t get me wrong…I read books on the topic…they have value. The conversations have helped me evolve. They have helped me develop my purpose.
Chris and I are also similar in personality. His sense of humor is almost as good as mine, I’m almost as good a writer as he is, and we share a love for technology and music. We also share the same purpose…to help people. While we share the same purpose, we approach it differently…out of necessity. Chris uses his experiences, mistakes, and victories to help others affected directly or indirectly by mental illness. I use a two-pronged approach. First, I use my experiences living with Chris coupled with the advocacy I learned in the Family-to-Family class (thanks to Liz) to co-facilitate a NAMI Aurora Family Support Group with Becky. I try to take every opportunity that presents itself to talk to others about Chris, mental illness, and NAMI. Second, I use the computer knowledge I have honed over the last thirty-some years to support Chris by developing this website and to support NAMI Aurora by developing their current website.
But there is another purpose that may not seem as obvious. It’s understanding as much as I can about what it is like for Chris to live with his illness. It means not lashing out when Chris’ psychosis causes him to be cruel and condescending. It means not getting upset when plans have to be changed at the last minute if Chris isn’t doing well. It includes seemingly little things such as turning off the car’s turn signal at a stop light because the repetitive noise of the turn signal can be a psychosis trigger. It means talking to Chris normally if he is dissociating because he can still hear and understand you. It means not standing in Chris’ line of sight during a psychotic event…he fixates on an object and is not able to ask you to move, increasing the chances of the psychosis escalating out of control. There is a fine line between making legitimate and reasonable accommodations and blindly indulging someone. The more I know about Chris’ illness, the better equipped I am to tell the difference.
I am in a much better place now versus when Chris was first diagnosed. For me, realizing purpose was a slow evolution. As a parent, I knew it meant supporting your children as best you can. It’s easy when things go as planned. But when things do not go as planned, it still means supporting your children as best you can…that’s just how it works. It took me a while to figure out Chris needed not only a different kind of support but also my direct involvement in that support. So that is what I do… help remove as many of the rough edges as I can. It’s my purpose.
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