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Health conditions are an inevitable part of life, of aging. Compared to most, my life has been lived largely backward. The question I sometimes wonder now is whether there’s enough of a pause, from chronic, invisible illness, from its chaotic wake, for everything else to occur. All the space that is living.
12 FUTURITY
When I was young, I never envisioned myself on this earth past my twenties. I didn’t know why—I just knew that futurity didn’t seem part of my inheritance. Most in this country are confronted with the realities of mortality as fully formed adults, not while still growing into their sense of self. As I grew, so did my sense of surrounding decline, mortality, chaos, and loss, and so the natural order of things seemed reversed.
I’ve experienced how extremely disabling my condition is. I’m aware of the statistics. More than that, I’m aware of why my condition lends itself to those statistics. I can understand fully why most with my condition end up jobless—the Atlantic cites an 85 percent unemployment rate for schizophrenia, and I’ve seen higher rates cited, as well. I understand why joblessness is only the first concern, linked to homelessn
ess.
I understand why people with my condition can get stuck in a cycle of hospitalizations, incarceration, and shelters, existing in a shadow universe. People without the illness don’t see the linkages, how one aspect leads to the next to the next, to various forms of institutionalization. They don’t see how exhausting moving from one consequence of illness to another can be. People without the illness, outside of the medical profession, and even many within it, have almost no sense of what schizophrenia means, of what it looks like, feels like, much less how to coexist successfully with those with the condition.
As I experience symptoms in real time, amplified and more noticeable in periods when my health worsens, I can research how those symptoms are part of my illness. I have names for things now. It’s exhausting, this cataloguing of the loss of my health, and yet it affirms for me what I’ve felt my entire life—how different I am from those around me, and how this difference has caused friction and conflict nearly always.
Alogia, for example: a lack or poverty of speech, one of the so-called negative symptoms of my illness. I’ve experienced this my whole life without having a name for it. This has only grown more pronounced for me, to the point that engaging verbally with others, beyond my partner, is grueling. With her I can prattle on so she forgets, until we’re in the company of others, that around others, I barely speak at all.
When I used to attend, with my partner’s friends, doughnut Sundays, I stayed silent, noticeably silent, embarrassingly silent, during conversation. Her friends didn’t know that these occasions were often the only social engagement I’d had in a week’s time, if not longer—and that this absence of social engagement isn’t accidental, but purposeful, one of the only ways I can find to ameliorate my condition, despite the tremendous loneliness that accompanies such social isolation.
My silence has always been a problem. Others have attributed negative intent on my behalf, assuming my silence is selfish, that I am purposely keeping back my thoughts for myself, when in reality, I am often too afraid to speak, not sure when and where to insert myself into the conversation. Like a novice trying to surf, my movements are uncoordinated—I’m not quite sure when to throw myself up onto my elbows, push and stand, and so instead I lie passively, while the waves of conversation lap and tide, and I miss every appropriate window to enter midstream.
More than simple fear, I oftentimes am simply unable to verbalize—a symptom of my illness that has become more pronounced. Being robbed of the ability to speak means lacking the social graces of small talk. It means missing out on connection. It means being unable to voice inner objections.
The negative and cognitive symptoms of my illness are what are so disabling. These symptoms, the ones no one talks about, recognizes, or knows, are the ones that render me nearly nonfunctional so frequently. The positive symptoms—the hallucinations, the delusions—are what keep me terrified of what could be.
I have capabilities still. I am a good listener, a good observer of the character of others—a trait of survival, I think, honed over a lifetime. When you’re not able to speak easily, you’re at the mercy of each person with whom you engage. Others tend to fill those silences with their own words, their own assumptions, tend to insert their own wills. You become a mirror, where the other sees their own reflection and their own desires.
I am, too, a good editor of others’ work. When you’ve learned most of what you know of the world through reading, you have an understanding of what a proper narrative should contain. When you’ve spent a lifetime trying to translate your experience of the world to something others can understand, impossible though that task might be, it’s easy to edit the work of others, to bring forward the coherence and meaning.
And I’m a good teacher of certain things, of things that are technical, precise. I’m good at understanding underlying structures. I’m a good teacher to those willing to be taught by me.
I have abilities, still. I can still learn, both in global, conceptual ways and in details. But the abilities I lack—in the social realm, in the verbal realm, in the cognitive realm, in the real-time world—make daily life virtually impossible to navigate independently. Conflict, criticism, and negativity derail me. Managing interaction with different personalities simultaneously is nearly impossible. I can exist on paper, but existing in real life is another matter.
Social aspects have always been the greatest difficulty I’ve faced. My illness affects my social cognition. It feels as though those parts of my brain are absent, or don’t function as they would in others. I’ve long felt my barriers to work have not been my capacity to do the work, but rather my ability to manage the sorts of human connection that are necessary to work, in different ways. People don’t generally like me, and I can sense that. They don’t generally trust me. There’s nearly always some point at which I say something wrong, do something wrong, think about things wrongly. The feeling is often mutual, as well. I often observe actions and emotions that others don’t, because I’m focused on the particularities. I see the small things.
I am, at this point, utterly reliant on those around me, even as I am capable of doing quite a bit—if, and only if, the conditions are right. My capabilities shift, depending on circumstance. When my partner is coming home and I know she’s had a busy day, I can rouse myself to make seafood chowder and pasta with pan-roasted vegetables. When she’s out of town, I can barely stir the energy or care to open a can of corn to eat. In her absence I don’t venture into the outer world, don’t interact with anyone for days or weeks.
I would be unable to climb, the one activity in which I still engage, without my partner, to whom it’s fundamental that we continue climbing. But with her I’m capable of certain things. I’ve been able to teach her nearly everything I know of climbing technique, of safety, so that now, with her ability to work out or climb daily, an ability I’ve lost, with her superior fitness, she surpasses me.
I can exist well with my partner because I understand innately how she moves through the world, and because she reacts with kindness, always. But existing with others, strangers, and those not as kind is another matter.
This is a lot of stress to place on any one person. Because my partner doesn’t view things as I do, she doesn’t feel this stress. But I do. The difference is stark.
On my own, sensory overload prevents me from doing simple things. I can’t ride public transit, or be in public spaces or around crowds for long. I impose isolation on myself, as a way to avoid the friction that inevitably results from social interaction. This isolation is effective, but unbelievably fatiguing, in its own way. The incredible loneliness of my condition overwhelms.
As my condition changes, my capability to do the actual work changes, as well. It becomes harder and harder to exert myself or my will. Apathy, lack of motivation, difficulty starting tasks—these are all symptoms of my illness, and I experience them at a level far beyond what these casual phrases imply. I can’t concentrate anymore—often can’t read a book, can almost never watch TV or consume media, or relax in the ways most take for granted.
My symptoms make little sense. On a good day, if shown a page of text, I can read it far faster than your average person, almost instantaneously. On a bad day, I can read one paragraph over and over without understanding, or I can be too overwhelmed to even look at the page.
I have memory loss. Nightmares. Each day half my day is gone by the time I’ve greeted it. After a lifetime of sleeping on a different schedule than anyone else, up until the wee hours of the morning every night, medication knocks me out routinely, for twelve-plus hours at a stretch.
My condition is debilitating. Beyond words, beyond language. It can take me days at a stretch, if not longer, to recover from social interaction, or even from existing in the outside world. During this time I can do essentially nothing beyond lying down, waiting to feel better. Sheer physical fatigue takes over, as does mental distortion. These distorted thoughts can preoccupy me for long stretches of time. Accompanyin
g this distortion is my inability to place myself in time.
Nearly every day I’m consumed by fear of something terrible happening, even if the specifics change. I can feel my brain changing, deteriorating. I can feel my relationship to myself changing. I feel loss ever-present.
This is what I wish others understood of my illness, as well as of illnesses such as early-onset Alzheimer’s: that change is the constant. There is so much flux in condition from one day to the next, that it’s nearly impossible to accurately capture the full picture. That personality change is an aspect of these sorts of illnesses.
I know my illness will likely shorten my life span, by estimates of ten to twenty-five years. I know people with my illness have significantly elevated rates of suicide. I know psychosis especially lends itself to such scenarios. I know first-degree family members are likely to suffer cognitive impairments and deficits, as well. This matches my experience within my family, where my difficulties communicating intersected with my family members’ failure to understand.
