My dad died in 2009 from Creutzfeldt-Jakob disease, an incurable and fatal neurological disorder. I never got to share my diagnosis with him, or the progress that I’m making today. I think he would be proud of me. I believe he’d be a huge supporter and advocate, going on NAMIWalks with me, attending therapy occasionally, and helping with the logistics of financial and medical well-being. I know it would be that way today, but it wasn’t always like that.
My first major episode occurred during college. My girlfriend found me in the corner of my studio, drowning in tears, chattering gibberish, desperately trying to convey the terror of my internal world. I was painting ’round-the-clock. I had stopped eating. I’d crammed my band’s PA system into my tiny studio. There was no space left for Voices or Notions. I’d secured the perimeter with frenetic art at nosebleed volume. I thought I was safe. She knew differently. We got in the car.
The dreamless façade. Restraints and medication. Fearing nothing. Vaguely aware that we had only temporarily traded acuity for thickness. Days later in my studio, alone with my typewriter and linseed oil, the Voices insisted that poison came in many forms, and that people were not to be trusted. Mutiny on the SS Henry Boy. Keelhauled in my tiny room. Imprisoned in silence and shackled in shame. I left school. I was never going back to the hospital. Not while there was art to be made.
Bathing in glamorous shenanigans and high-heeled boots, I had beaten the post- college odds. I was in the trade papers and on the radio. I worked hard and I had arrived. So had my brother – in dad’s company car. His teenaged job was courier, my father’s message simple: voluntarily commit myself to a local asylum. I listened as he read my father’s fears that I was a danger to myself, that I lived in a delusional state, that my career path was ludicrous. He told me I would be disowned if I did not comply. The intentions were correct, but the delivery system was a hammer to my heart.
I didn’t want any part of a family that didn’t understand me, who couldn’t see that I was Chosen, and not Aladdin Sane. The art world accepted my so-called quirkiness – they could be my “family” from then on. I didn’t speak to my father for some time after that. I missed his journey through recovery and sobriety, he missed my rising star. I fell again. Harder each time. I turned to self-harm and suicide attempts for answers to a problem I did not believe I had. I never understood that I needed help.
People with schizophrenia, Alzheimer’s, and borderline personality disorder share a common cognitive dysfunction called anosognosia – the inability to recognize that their illness exists. They aren’t being contrary. The dysfunction renders them incapable of believing they are ill. Attempt to convince them and they will likely withdraw further into their illness. The one they can’t see. Where is the map? And who will help read it?
Family. Chose your definition. It’s about love.
The role that family plays in the treatment process is crucial, beginning with education about their loved one’s illness. Research shows that proactive involvement by family and friends increases the odds for a positive outcome, resulting in better symptom management and fewer psychotic breaks or trips to the hospital. Establishing a sense of family and a network of friends is essential to recovery.
In cases where noncompliance with medication is the issue, intervention may be necessary. Involuntary hospitalization and care may be the best course of action. But in those cases where the individual is willing to seek out voluntary treatment and participate in various therapies, a sense of self-esteem and meaningful involvement with others can often help provide insight into their illness and improve their mental health.
My dad sat with me on a park bench in the summer of 2006 and listened. I opened up to him about my secret life. He listened. I talked about my divorce and the threat of losing my job, about wandering the streets at night alone. He listened. I talked about fighting demons, sleeping at bus stops, eating out of garbage cans. It broke his heart, but he listened. He supported my choice to seek treatment and therapy, offered to help in any way he could. He had done his homework. My art had never saved the world, but my papa helped me save my life. He listened without judgement or blame. He unfurled the map and helped me plot my first course. If he were alive today, I think he would be proud of me. It will always be like this.
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 humor work hand-in-hand to combat stigma.
