Fifteen years into my son’s schizophrenia, I stand at the place where the sand meets the water, my bare feet planted firmly. I still cannot retrieve him, but at least he hears me now. I play a kind of call-and-response game with him, like Marco Polo. He will never lose me; I won’t allow it.
I’m not consoled by statistics. I am, however, overwhelmed by defeat. It seems that all I can focus on lately is hopelessness, either how to combat it or how to subsist within its limits. Usually I focus on hope and solitude, believing that this affords me some solace. But I sense that an outside pressure is at odds with my internal fortitude. I’m losing my optimism. I want it back.
Mental illness can wreak havoc on our memories, but we can learn to live with that. Sometimes it’s like waking up from a dream and trying to reassemble it, never quite having all the components on hand. It’s a challenge, but one I’m willing to face to feel whole, complete, integrated, and stable.
A friend of mine is concentrating her graduate studies in drama therapy and is currently assembling a seminar on schizophrenia. When asked if I would like to contribute, I happily obliged. She wanted an excerpt from my unpublished manuscript to read in her presentation, so I opened up the file and started combing through it, searching for an excerpt that would most accurately convey my lived experience.
But as I navigate the waters of our overburdened and underfunded mental health system, there is a wall I keep butting up against. It is a specific limitation which needs to be addressed: Why does the medical establishment seem to stop caring about schizophrenia once the patient is medicated and compliant?
Considering that I lived in a world of my own, replete with sights and sounds that manifested sparkles and colors by the nature of my young life on the spectrum, that was enough for me. While the rest of the year held little intrigue if there wasn’t a parade or Frisbee in sight, Independence Day always delivered.
Like millions of other people whose only connection to the life we might have known once is an online conference call or video chat where a familiar face is only that and nothing more. No actual contact, no handshakes or hugs, no fascia or pheromones. Something’s missing. Something human.
What a mystery, this thing, mental illness. But what exactly is the critical issue? Just how horrible it is? How ugly, how dehumanizing? Or is it something more intricate, more profound than that? A thread throughout the historical narrative of this disease is that the afflicted one believes he is talking to God. Or God is talking to him.