IN THE MIDDLE OF MY MUDDLE: REFLECTIONS FROM THE CENTER CANNOT HOLD by Elyn Saks for me to reflect upon
Somewhere in The Center Cannot Hold, Elyn Saks describes a scene as being “[i]n the middle of my muddle” & that’s the resonating hum that sticks with me from this book, narratives that move beyond the description of living with the disease, but rather capture the visceral nature of living within its grasp. Elyn Saks’ most lasting achievement in these pages, for me, is when she’s recalling the slippage of her verbiage, reverberating in her own confusion & shame, & ultimately recounting the lessons she’s learned in the given moments along the way.
I admire the path Saks has carved for us psychosis-laden folks. Over a decade ago, she opened up the conversation to be about more than the label of the disease & the list of its symptoms, but to focus on the actual experience of living as a schizophrenic (or whatever variation one might be). She’s privileged, no doubt, with money, therapeutic resources & a strong intellectual side of her mind; regardless, the deep terror of her days reflects highly off these pages. As someone with bipolar disorder with a fair amount of psychosis, I’ve decided to single-out individual reflections from the book that most parallel my own experience & hop a bit farther.
“A part of me had been waiting for those words, or some version of them, for a very long time, but that didn’t lessen the overwhelming impact of them, or what they signified for my life” (167).
It was our second meeting, the psychiatrist in the psych ward & me, & he pulled down his Covid-19-era mask so I could hear him clearly—schizoaffective disorder, bipolar-type (later amended to “bipolar disorder with psychosis”). I’d been living with the symptoms long enough, though in confusion & fear, to know them individually—the outbursts, the hallucinations, the mood swings, the delusions—but added up like this & laid out flat, it was both a relief & a dagger. I’d done enough poking around the possibilities to know this meant I had a lower life expectancy than my fellow man, less of a chance to have a stable career, & a problematic choice in family planning. An existential crisis thus arises.
“What is a person? What’s the difference between a person and a personality?” (255)
I’ve been asking myself these questions on a regular basis for the last decade, feeling myself not fit into the consistent, expected paradigm of adult-person. When I have a spell & hurt someone—yelling word-salad at my best friend in the mountains, abusing my girlfriend in a parking garage, squealing out of my workplace’s parking lot to leave another job behind—it felt like a back-to-the-drawing-board moment over & again. Whole months would pass where I felt more like a personality, a mask, than a person, disjunctive & performative. As Saks said at the beginning of the book, “I think I am dissolving” (10).
“Schizophrenia rolls in like a slow fog, becoming imperceptibly thicker as time goes on” (35).
I remember laying in bed, this had to be around 2012 or 2013, staring at the boring white apartment ceiling. I swear I could hear my brain thickening up, the weight of the coming days washing in. It started with the sleeping dreams—demolitions & plagues of spiders—then it rolled into waking nightmares—an entire community’s plot to upend me & always a shadow a few feet away, ready to attack. Often, time & thus my body felt so slow, I couldn’t tell who was chasing what.
“It’s not a matter of feeling…It’s a matter of things happening to me” (141).
This explanation nails what I haven’t been able to explain to my loved ones, my therapists, & the naysayers. A therapist once wrote on the board FEELINGS-->CHOICES -->ACTION. In moments of psychosis & blur, the action scraped side-by-side with feelings, two drivers, one cart. Choice was left to the wayside, the moment pressing its will on me.
“Consciousness gradually loses its coherence. One’s center gives way. The center cannot hold. The “me” becomes a haze, and the solid center from which one experiences reality breaks up like a bad radio signal” (13).
I often call it “blur-brained,” that state before an episode, not full psychotic / psychosis, but a definite loss of solidity upstairs. It is a negative feeling positively mimicked by the state of being I find in meditating. When I first started meditating last year, I would lay in my underwear face-down on the cold hardwood floor, just how I was often found after an episode. There I was, attempting to normalize, or at least make less frightening, that slippage.
“When I become psychotic, a kind of curtain (of civilization, of socialization) falls away, and a secret part of me is revealed. And then, after the psychosis passes, I suffer overwhelming shame: I have been seen” (217).
I have a lethal fear of being embarrassed & abandoned, thus I always carefully picked my jokes, maintained a mildness in my public persona, & worked like hell to build reciprocal relationships. My disorder shatters all that work, making a fool of myself in my incoherence & mayhem. Especially in the days of unknowing about my illness, there was more shame than I could often handle, setting this spiral into motion—a spell causes shame, shame causes another spell, a vortex of mania. That was the hardest thing about when my ex-girlfriend LR published her essay listing a few of my sins alongside my roughest psychological breakdowns; in all my effort to avoid the roughneck nature of my ancestors—the drinking, the cussing, the narrow-mindedness—I was seen, without explanation or rebuttal, as a bad & crazy person, on a journey I was still myself deciphering..
“I’ve killed hundreds of thousands of people with my thoughts. It’s not my doing. Someone acts through my brain” (159).
This past week, I spent mornings in strange hazes, imagining moments where someone would slight me—my father, an uncle, a cousin, a stranger at the pool--& I would verbally scold them & then, when they wouldn’t learn, I would destroy them—drowning in the pool, slicing like potato chips, dragging behind the golf cart. I would “come to” from these delusions, first afraid I had actually done the deed, & second forced to carry the weight of it, despite it not being real. As Saks says later in the book, “A psychotic episode is like experiencing trauma” (289).
“I was certain people could see how scared I felt, how shy and inadequate. I was certain they were talking about me whenever I came into a room, or after I’d walked out of one” (14).
In my early 20’s, my therapist thought it was just anxiety, this over-awareness of each glance & murmur, but as time passed, we discovered it was the growth of paranoia coupled with the shame of my illness. Of the many things I miss about my wife DS, the most practical absence is her ability to ground me in social situations & help me navigate the long halls & wide rooms of life with encouragement, reassurance, & love.
“My head is too full of noise. Too full of lemons and law memos, and mass murders that I will be
responsible for. I have to work. I cannot work. I cannot think.” (2)
The elliptical, disjunctive language & dissociative movement I value in my poems is a major part of the disorder that debilitates me. A few weeks ago, I tried working a job at an auto shop--changing oil, rotating tires, etc. While the first couple days went well, the third day my head became inundated with sound—the steps to an oil change screaming on loop, a disembodied laughter, some orders to harm those harming me (no one was harming me, but still). Among the loud sounds of impact drivers & pinging wrenches, I just couldn’t handle it.
“I just couldn’t get my mind to work right” (42).
That’s the biggest frustration I’ve found over the years—the inability to control my own mind. No matter how many therapy sessions. No matter how many breathing exercises or long cooldown walks. No matter how many meditation sessions or poem-writing moments. No matter how many pills I take. My mind brings what it wants, forces its will upon me.
“What was real, what was not? I couldn’t decipher the difference and it was exhausting” (56).
Before I started my new medication, I’d spend hours at a time picking through my perceptions & trying to guess what was real and what was not. Who hates me and who loves me. What is trying to kill me and what needs my help. What sensory things were real and what were merely a product of my head. The better option often was to just shut down—curl up in bed & give up, drink / smoke myself into a coma. Otherwise, I’d get wound up in the mess & the manic exhaustion was dangerous.
“A setback that might have been only simple frustration for someone else—a slight case of writer’s block, a change of plan that might have meant taking a day or two off, going to a movie, having a beer—made me wild with fear” (73).
This is the crux of most of my problems--why I can’t hold a job, why my friendships dissolve, why ultimately I’m twice-divorced. Small things cause big reactions in me. If a friend cancelled last minute. If a friend showed up last minute. If I encountered a stranger while trying to quiet the mind. If I was walking alone in the dark. If I need to skip a few things on my to-do list. For years, I have been labeled as an overreactor, when really I’m just reacting appropriately to the unnerving amount of fear inside me.
“I’d summon focus and energy to keep the demons away during a visit, and then go to pieces after friends and family were gone” (163).
This point harkens back to the piece earlier about the difficulty little challenges pose on me. Group outings & dinner parties are full of mistaken glances & short-changed quips, broken promises & paranoia-inducing comments. Navigating all of that while also trying to be a good host / guest often resulted in a manic burst of energy after the room cleared. Unfortunately, when you live with someone, that person has to witness, helplessly, that onslaught of emotions, psychosis, & shame again & again.
“Maybe I couldn’t keep the thoughts from coming into my head, but I could organize them, and keep them from getting out” (176).
What an energy suck this effort surely is. I’d often cry to my wife, “there’s just too much going on,” a flooding of consciousness that, in addition to episodes, resulted in bi-monthly migraines & regular mood swings, results of the pure exhaustion of juggling the normal thoughts & the psychotic thoughts while also carefully monitoring what goes in & out of this weird brain of mine. It is a futile effort though, as the floodgates always rupture. As Saks says later, “The constant effort to keep reality on one side and delusions on the other was exhausting, and I often felt beaten down, knowing that the schizophrenia diagnosis had ended any hope I’d had of a miracle cure or a miracle fix” (183).
“When you’re scared, on the verge of a meltdown, you instinctively know to head someplace where you’ll be safe; when you reveal something so intimate as psychosis, you want the witnesses to be people you trust” (217).
For a decade, I was undiagnosed with anything, unmedicated & flapping in the wind. I learned coping skills to control my symptoms, episodes, & larger problems, diverting them to more safe spaces to self-combust--around the closest of loved ones, in my own home, etc. This has been the true struggle since my wife left a little over three months ago. In Austin, I had her & a couple friends I trusted to witness my meltdowns & outbursts. While my home here is safer for my crazier moments--isolated space, family-owned property, etc.--without DS, I still don’t have those trusted people to unravel in front of. My closest friends all have families to care for & protect, & my parents, as patient & helpful as they are, are too fearful & fragile for such moments. Thus, I’m often left to my own witness in my episodes, which is dangerous at worst & lonesome at best.
“With years of practice, I’d learned to keep my symptoms mostly hidden from view; I was becoming adept at acting normal even when I wasn’t feeling it” (190)
Saks names this skill as seeming, a tactic I’m very good at, especially as I had to navigate a big city, graduate school, & a marriage. It is also the thing that prevented me & my support system from getting the help we needed. Even now, when I meet with a new psychiatrist or therapist, they always remark how articulate I am, how put together I seem, how functional I’ve been, despite the chart in front of them outlining my constant failure at “normal” adult life.
“And by the way, in my experience, the words “now just calm down” almost inevitably have the opposite effect on the person you’re speaking to” (140).
Let’s just strike this from the vocabulary. In my episodes, instructions for “controlling my emotions” do not work. What I need is for folks to help me control my environment, its perceived threats, & whatever else is agitating or terrifying. As Saks says a little later in the book, “At the very least, somebody could have asked me what made me feel better” (159).
“’Crazy people’ don’t make the evening news for successfully managing their lives; we only hear about them when something horrible happens” (289).
I’ve been thinking about folks like Tony Timpa & Muhammad Abdul Muhaymin Jr., non-violent folks suffering from mental illness & killed by police. We don’t hear their journey, their triumphs & warm affections, in real time; instead we see them dead, the tragic end result of their valiant attempts to navigate life with their disorder.
“You might also strive to make your life as predictable and orderly as possible…your basic goal would be to eliminate surprises” (230).
Here is the real reason my wife & I moved to my hometown of Elwood, Indiana. Equipped with a family-owned house, close proximity to my parents, & the affordability of small town life, we were able to control our environment as much as possible--me not having to work, no neighbors or landlords breathing down our necks, both of us able to make art & love each other as freely as possible. As I rebuild my life in the wake of her leaving, I’ve been focused on keeping it simple, the days looking similar in flexible routine & predictable experience--morning walks with the dog, afternoon reading / writing time, evening phone calls / visits with loved ones. I think that’s what made school, both undergraduate & graduate, so appealing, so capable, for me; it is structured & rigorous, but also porous & malleable. Like Saks, I felt a similar sting when I graduated, ““[I]t all gave a precise order and manageability to my life, and now it was over” (50).
“While Navane had helped keep my psychosis “tamed,” I’d always had to remain vigilant. The pyschotic thoughts were always present, and I often experienced “breakthrough symptoms”---fleeting psychotic thoughts—many times each day.” (303).
Mostly, these fleeting psychotic thoughts are what I’ve struggled with much of my life. Now, medicated with more controlled thinking, those sudden appearances are actually more startling & scary, thrown against a crisper backdrop. I’ve been in the swirl of psychological disorder & situational depression for the past three months. It becomes hard to decipher sometimes what’s the disorder & what’s the funk. When it is both, it is clear & devastating. Similar to Saks, “Soaked in antipsychotic medication, with the psychosis actually clearing, I became profoundly depressed, and felt the brief flash of energy and focus leak right out of me” (176).
“[H]ow easily I could have been any one of them. How easily I could’ve slipped beneath the waves and simply never come back up again. I wondered if there were a role I could play in the lives of people who suffered in a way that I understood only too well” (103).
This sentiment is exactly how I felt, overwhelmed with empathy & heartache, among my dozen fellow patients at the psych hospital when I spent a week there earlier this year. I had similar pangs in my interactions with the homeless population in Austin. Less support, poorer choices, &/or another bad break or two, & I’m as riddled as they are; each day, I’m thankful I’m not further down this hole. As soon as I’m well enough, I am determined to go back to school & get my Master’s in Mental Health Counseling.
“As I watched everything I valued disintegrate, I nevertheless fought to somehow hang onto my autonomy—my self” (80-81).
This urge, to retain autonomy, is where so many of the self-defeating decisions come from--to not take meds, to not accept help, to stay in the same pattern. Saks often speaks of the intense desire to will one’s way into feeling better, an impossible & short-sighted goal. With my wife leaving, with my inability to control my own destiny, the only place I’ve been able to turn for that power is in my art, writing & making collages.
“One of the worst aspects of schizophrenia is the profound isolation—the constant awareness that you’re different, some sort of alien, not really human” (193).
It is true, but I also find the ability to name it, be it schizophrenia, bipolar disorder, or whatever, as a small crack in the wall. The isolation I felt in my private mania is relieved a little by the public admittance that I’m different.
“What might it be like, to be completely at home in one’s life, and not be alone?” (294)
As I barrel into this next stage of my life--single again, back in my hometown, focusing on creating again--I’m chased by this question. I’ve decided to completely open up about my experience through this blog, my podcast, & my other work. I’ve decided to let more people in on the cosmic dark joke of my disorder.