I want to prove to myself that I can live a life the way I imagine other people do, relying on myself to get things done, handling the simple chores and the difficult tasks. Inevitably, I forget one key point: I have schizophrenia. It’s a game changer. Not just for me, but for everyone involved. It becomes obvious when I reach out for help and can’t find it. It’s worse when I need help and no one volunteers. It gives one pause for thought.
When my stepmother was battling cancer, friends and family filled the house daily. Every chore got done, every bed got made. Groceries were bought, meals were prepared. Life made as much sense as it possibly could in a house where illness was a roommate.
I saw, firsthand, people coming together to help a sick person deal with the minutia of day-to-day life. It instilled in me a clear understanding of a creed both parents exemplified: reach out to those in need, and do so in a selfless manner.
It is human to offer support. It teaches us to recognize our strengths and weaknesses, to let go of ego and give meaning to life. We learn about borders and boundaries, as opposed to fences and defenses. Caring for one another is our collective responsibility. It is a defining component of wellness.
Others have taught me that my version of helpfulness is sometimes a little bit strange. For example, I might help by arranging the drinking straws. Or stacking the napkins, or microwaving the kitchen sponge. I learn too late that the level playing field isn’t. Because schizophrenia is a thought disorder, misunderstandings are going to occur. In a society where being in control is seen as the backbone of success, a guileless mind is considered a dangerous thing.
Agencies can certainly be helpful, but often it’s the personal touch that keeps a mentally ill individual grounded. Knowing that we’re accepted one-on-one for who we are can make a huge difference in how we relate to ourselves and the world around us.
When I need help, I resist asking the person snowed under by information. Processing can be overwhelming for them. I understand this. There’s a lot to learn, and that can be discouraging, especially when media misinformation has such a strong influence. They are afraid of what they’ve been told, and stigma keeps them attached to their fears.
I can’t ask the person who lives in denial, who tells me that my experiences aren’t real. Their viewpoint is totally subjective, but I won’t make them wrong for it. Driven by a fear of the unknown, they become uncomfortable with new information. Discrimination keeps them anchored in the safety of the status quo.
So I ask the people I’ve relied on before. They approach helping others much the same way I learned to: wholeheartedly and without judgement. These are the relationships I cherish the most – with them I am an open book. I answer as best I can when they ask me questions about paranoia.
They try to comprehend how fear controls my life. They come to understand the delusions, hallucinations, and childlike frame of mind typical of disorganized schizophrenia.
I’ve learned in therapy that it can wear a person out, the unpredictability of my symptoms, the anxious calls and odd ideas. Believe me, I get it – it wears me out, too. If it becomes evident that they’re tired of me, I make myself scarce. I don’t always know if that’s truth or confusion. Either way, I understand that they have real lives. Helping me buy groceries or clean the bathroom has no appeal. I “should” be able to do it all on my own. The disconnect is frustrating, and I lose perspective. I lose friends.
We are taught to believe that everyone thinks the same way, that everyone is in control of their own mind, and that Free Will operates under their command. This is the paradox of living with a chronic and disabling thought disorder. We know differently. Everyone knows differently.
Schizophrenia does not follow the simple commands of social dictation and, as such, is not tolerated in our culture. Society appears to want not to believe in a diagnosis they will only accept as a metaphor for the id unchained. What they fantasize about doing, were the moral shackles off, they superimpose as fact on the uncontrolled mind. Thus prejudice is born and trained into the culture. It’s embedded in our everyday language. It’s ingrained in our society. It goes beyond any friendship or variation of hospice. Discrimination is insidious.
One percent of the world’s population is the target of this heedless intolerance. It may take generations to turn such inequity around. It can be done. We just need to ask.
Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.