As I recovered from my episode, I could see shadows of my mother’s behavior in my own in my weeks alone at home. I wondered if I would be able to take care of myself, to cook again, to live independently. I remembered her checking ten or twenty times in a day if she’d turned off the stove. I remembered her burning dishes, rendering them inedible by leaving out nearly all the ingredients. I remembered my middle sister shrieking for hours, when the food was burned.
When I received my own diagnosis, I cried as much for my girlfriend as myself. I knew all too well what it is, to be on the other side—to be the “healthy” person, the voice of reason, bearing the weight of responsibilities invisible outside the home.
* * *
“It makes more sense now,” my girlfriend told me after seeing me in an episode. Before my diagnosis, my prior suicide attempt hadn’t made sense, to either of us. She’d said before, “You love life more than anyone I know.”
Even in the moments where I had been trying to end my life, because it seemed the best, the only option, I was also aware I didn’t want to. I simply wanted not to feel unsafe. I didn’t want to feel as though others were out to hurt me, and I felt I had no other options remaining.
My actions hadn’t fit with my background as an average, well-educated individual; nor had the legal problems I’d incurred as a result. Now, with the clarifying lens of diagnosis, my past did make sense, as a typical trajectory for someone with schizophrenia. As with my mother, the degree to which I am cognitively high functioning masked my condition.
* * *
I’ve always written because I wanted so desperately to be understood. Because that’s something family hadn’t granted me, and because it’s so rare to encounter people who understand me innately, without verbalization. My whole life is wrapped up in writing, in this work.
Having my brain taken away from me, when it’s what my sense of self and livelihood depends on, felt like a cruel joke, much as it seemed a cruel joke with my professor mother. Perhaps the brain is like a muscle, in that it breaks down when overused.
After my first psychotic episode, my oldest sister and I talked of completing an application for disability. “It’s better to start now,” she advised me, according to what she’d found. Then we set it aside and didn’t talk of it again.
After my second episode I began looking through all the contradictory rules. I’d done this application before, for my mother, just as I’d accompanied my father as he applied for the Social Security benefits for which my mother’s record made him eligible. I had next to nothing in my bank account, living on money from my IRA, and my girlfriend was totally broke, too. I have tens of thousands of dollars in bills, racked up from my two episodes—the ERs, ambulances, hospitalizations, legal bills, some paid, some unpaid, some ongoing. My financial difficulties are, from what I can discern, par for the course for the illness.
It’s an odd thing, talking with my girlfriend about my disability, the ways in which I’m unable to work in any sort of a conventional setting, because of how socially limited I am, and to know that we both see and recognize my limitations. It’s an odd thing, to contemplate what that might mean for our future.
“It’s like you have supernatural powers,” she says, too, because she recognizes that my mind is also capable of more than many people’s, in terms of my ability to process huge amounts of information, to manage complexity and plan for every outcome, to read and sense people’s intentions and emotions accurately, to see what others miss. It’s not just that I have a serious, stigmatized mental illness and am therefore deficient—it’s more, from what I can tell, that I’m different.
I experience emotion differently than someone who is neurotypical; I pick up on the frequency of others’ emotional landscapes around me. I think of this as similar to how an MRI produces visible images of what, without magneticism, without radio waves, would be imperceptible to the human eye. I think of this, too, as similar to how animals seem to communicate.
When I walked up a steep incline, up the side of Pikes Peak in Colorado, a stranger’s dog stopped every time I lagged on the ascent. I’d just been released from the hospital a few weeks before, and I was in no condition for the trail.
“He’s waiting for you,” she said to me, friendly and also struggling to get her large black dog to focus on the path ahead, instead of checking in on me. Once I’d really given up, her large black dog no longer seemed worried, loping up the trail without turning back to check.
I think of myself as similar to a weather vane, swaying and pointing in the direction of the winds around me. I grew up in a house filled with toxic rage. As a still-developing photograph soaking in chemical baths, after those years and years of being submerged in such toxicity, your sensitivity changes to things like kindness and cruelty. As a photograph plunged in citric acid too late, overexposed, the image that results changes, too, forever frozen in the wrong moment in time.
* * *
Besides my father, who tends not to believe in things like mental illness, psychology, or doctors’ visits, and who therefore has been immune to things like diagnosis, each person in my direct family has been diagnosed with at least one medically rare, genetically predisposed condition, most of which strike 1 percent of the population or less.
Early-onset Alzheimer’s, bipolar, clinical depression, anxiety, PTSD, schizophrenia, Hodgkin’s lymphoma concurring with another cancer, a blood-clotting disorder causing a massive pulmonary embolism—all this and more, among just four people. For my sisters and myself, this happened by our mid-thirties, when most other people are beginning their own families. With my illness, particularly, given its chronic nature, given significantly higher rates of institutionalization, criminalization, and homelessness, the public and the private cross.
So often our urge to simplify, to focus on issues in isolation, ignores the ways in which mental illnesses travel in constellations—how they can cluster together, and also how they can cluster in families. If there’s any lesson I’ve taken away, it’s that here in the U.S., at least, especially without broad social support, suffering so much illness takes a huge toll on a family. The shock waves can nearly wipe you out.
* * *
Unlike other illnesses, people with schizophrenia fare better in developing countries than they do in places like the U.S. It isn’t clear why this is—whether it’s due to social or cultural factors or something else, and how. These reversals from our expectations fascinate me, though—they show us how little we understand.
In some developing countries, according to research by Professor Alan Rosen, high-functioning people with psychoses are seen as shamans—a stark contrast to the ways in which people with schizophrenia are characterized here.
“See, we should live in Pakistan,” my girlfriend tells me.
“I like that we don’t play games,” she says, too. Neither of us has patience for nonsense. We both, I think, take stock in our time apart, of what and why we value each other.
In her absence I miss rubbing softness and moisture into her eczema-prone skin on cold winter nights, playing at being her lotion wali, covering the same bodyscape as her waxing wali back home. I miss sheer physical presence more than anything else, more than activity or gesture. She has simple needs. I am simple in what I can offer, simple in what I require. Kindness. That’s it.
Our day-to-day life is so small, insignificant, in the ways of most people’s. On eventful days, after she gets treatment for a health condition of her own, we do odd things like practice stabbing each other with EpiPens. Her condition is one that typically affects children of three or four years old—her doctor hasn’t seen it in adults before.
My illness, too, seems one of time. I don’t experience time the way others do. The traumas of my past are real as ever, as anything, because they were never resolved. I’d frontloaded my life with caretaking, where most experience that shift from being cared for to vice versa only now, as they approach middle age.
For me past, present, and future blend together. Answers for lifelong mysteries are slowly unfolding now—why I always felt different, why I so often felt bullied and misunderstood, why I had conflict where others were able to sidestep, why each worsening of my mother’s condition, each negative interaction with family, came with such turmoil and personal cost attached. Now, when most of my peers are beginning a new life, rather than receiving answers to old questions.