I keep my world small, contained. That way I never lose sight of the social cues of the normal world. When I talk with my therapist I allow myself to speak openly and honestly about whatever’s on my mind. I explore the words and watch as they tumble out and form clusters of sentences, pockets of meaning. I talk about things that I wouldn’t share with anyone else. It is the safest place I know.
When it comes to experiencing new or possibly uncomfortable things, there is usually some element of risk involved. For instance, do you share your diagnosis with a recent acquaintance before they level up to friend status, or do you wait for the elusive Perfect Moment to divulge your secret? Do you ask your doctor about the side effects of a new medication they recommend, or do you simply go on faith that everything will work itself out?
For most of my life, I lived with unmanaged schizophrenia, believing that I was “normal” and that my reality was no different from the generally accepted one. After years of therapy, I came to believe otherwise, learning to accept my fears of medication, fears based on a negative experience with meds when I was a senior in college. Having so recently lived otherwise—however briefly—I can safely say that being med-compliant is perhaps the single most important decision of my life.
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.