To Anyone Seeking 'Clarity' About Schizophrenia

A letter to anyone seeking some clarity: There is no clarity. Like any chronic type of illness, schizophrenia can be a burden. For you and for others. Nobody ever said it was easy.

A string of words can dangle peculiarly. A tossed salad of thoughts clashing inside one foggy synaptic breath. Sometimes I can come across too robotic, literal or wordy, or as my sister has described, fragmented, laced in poetic saccharin, just too many words cling-clanging. Sometimes the most neutral form of a simple question can physiologically throw me off, bringing on a most frightening bodily response, as well as a lengthy verbal one. This causes me to react defensively, afraid or hurt.

I’ve learned through the years to occasionally downgrade my sentences to perhaps mirror cues, keeping things somewhat even keel. I’m learning to listen better and cohesively articulate less, but I can’t help it. It’s how my mind functions. It can fuel my best writing. It can also fuel a whole lot of lengthy repetition and nonsense, both aloud and in writing. I already deleted 10 other pages that may likely never see the light of day. Oh well. My thoughts spin around and around like they’re on an umbrella, each one dangling onto those pinpoints holding canvas to protect the stormy intrusion before the wind blows, ripping them all to shreds until there’s a vacant, barren hole. Rinse, wash, repeat. Sensory confusion, simply put.

I had the flu recently, are you familiar? Well, the flu can activate my brain further into confusion, disorienting my space. The intervals in between time itself are like a psychedelic state, no hallucinogens required. Heck, any physical ailment can alter my daily routine instantly. Maybe it’s like a synaptic seizure of snapping elastics, which can’t be detected by those fancy medical machines. Yet something is sharply twitching at high speeds, neurons sparking any which way they please, wreaking havoc, cursing my days at the flip of a hat, the flip of a coin and perhaps a flip of a finger (however you see fit).

The brain is still a mystery and research is ongoing. And no two brains are alike, making it all the more complex to simply figure out my own wiring. My own writing. Though I’m not keen on labels all the time, we still remain limited in this new age. Until the next best thing comes along, I think perhaps my brain waves dance inside the spectrum of autism, schizophrenia, post-traumatic stress disorder and episodes of these micro-seizures triggered by sensory overload. I think this paints a picture of my experiences a little better. Alas, onward.

Oh, and with the flu. It all began a few months earlier when I was stricken sick by a flying, fumbling, fluttering frenzied, freaking damned flu for what seemed like a month. I couldn’t move. I often find movement already difficult without a ferocious flu. I had been reflecting in front of my bathroom mirror where my face naturally morphed into slanted distortions on any other day. Today it melted because I had turned on the hot shower faucet to create steam in a desperate attempt to clear my nasal congestion. I lowered myself down to the ground, catching my breath, curling up into a ball on the cold slabs of brown polished tiles that line the bathroom floor near the tub. I then realized that this flu virus was hitting me hard. But it seemed to have given me a purpose. Time. Time to jot down my brain experiences, somewhat more clearly, due to the paradoxical fog I was parading inside of.

Yes, I might need the cup of ginger tea I just made, but I want to spit it out because I’m hesitant about the concoction. I’m questioning if it was poisoned by some outside force. (I may end up not eating very much for three days because I’m in middle of tackling a psychedelic state while attempting to nourish myself and heal from a cold.) Not the nice kind of psychedelic, right? I’ve never understood why folks enjoy inducing this state of mind, but perhaps because I naturally experience this almost daily, I’d prefer being grounded. Y’know? I mean, having the flu for anyone can be difficult.

People without psychiatric challenges need all kinds of support. We are human beings, and human beings require community. So, maybe I’ll use terms like psychiatric illness, disease, mental disorder, psychosis, chronic distortion, crazy, unstable, eccentric, mentally ill, special, emotionally unwell, disturbed, socially awkward, blank, spacey, disoriented, genius, disorganized thinking and other jumbles, merely to help get some points across. I can’t say I always fit comfortably inside most of these descriptions, but this is an ongoing exploration. I often find myself thinking my symptoms to be more physical than psychiatric which, yes, is valid. Oh, how the neurological web with the prefrontal cortex is so thoroughly woven inside both realms that I still don’t quite have the vocabulary for the chaos. The battle of my body and brain signals is ongoing.

Some online sources about mental illness are incredibly informative. Some online sources can be a big pile of shit. Partly for their heavy ties to the financial market on that corporate/pharmaceutical wheel. They can confuse the honest bits of information (including those dramatic films portraying this beast in a romantic light, sometimes causing more damage than good). This creates a difficult task for me, quite frankly, to decipher and trust what is essentially helpful for me and especially for my support. There is, undoubtedly, knowledge online at your fingertips, but it’s never wrong to question and research. Keep an open mind.

I can’t repeat enough the importance of a social network, and a stable one at that. One person helping you out? Great. Five people? Even better. But hey, take what you can get. This may sound surprising, but most of us, mentally ill or not, have had some level of dysfunction growing up and/or are presently living inside heavy instability as we speak. For good, bad, ugly, hell or high water, as cliche as it all is, people need each other. Sure, when we have an obligation, we push and pull and clench our teeth and eye roll with frustration at the dynamics and epic sagas of relationships, parents, crappy childhood, etc. As hard as it is for your average folk, it’s even harder for a person with a mental illness.

Losing touch with reality can be utterly frightening. Think about the time you decided to get drunk or stoned and your friends or family had to carry you home. You were suddenly incapable of movement due to the sensory input of them touching you. It made you feel sick and confused by the mere presence of those alien people trying to help you. Wait, do I reeeallly know who they are? So, they drag your ass, put you in a car, bring you home and tuck you into bed. Double that with a flu, mind you, the walls already appear slanted and their language is disintegrating like quicksand, making it hard to comprehend their sentence structure. Imagine someone is taking your head and bashing it against your bedroom wall a few times, causing vertigo now. Shake it all up and, voila, my weekly state of being.

Only this isn’t your fault.

We rely on this magnificent organ of the brain to help us navigate our lives. You don’t often think twice about your natural, usual routine. Waking up begins with analyzing the room, your pillow, perhaps the angle of the mirror, moody walls, fumes coming from the radiator, the delivery truck outside and the colorful items on the table. All of these things cause you massive headaches as you gradually walk passed the kitchen to the bathroom, telling yourself your name, looking up at the mirror, but not for too long because it’s disorienting. Then, you tell yourself to brush your teeth while reaching for that long plastic thing with purple bristles at the top, often recognized as a toothbrush. It’s as if I’m perhaps running through the brush of that jungle, cutting through weeds, scraping my knees, swamping through Colgate paste, trying to see above the blades, hearing the sound of the bristles and if I can make it out alive, it could simply mean I’ve completed my morning basic grooming routine. Yay, a victory.

Sure, my sensory overload can be irksome, but hey, it has its perks. Noise, sound, light, taste, color — conducive for painting, writing and creating quirky culinary cuisine. Oh, and endless colors waving in and out of words, phrases and emotions. I think many creative people experience this, otherwise known as synesthesia. Number three is green, while five is blue. Textured, smooth and angry. As for taste, I’m a foodie all the way. I love cooking. A plethora of spice, nutcracking the ballet on my palette. It’s healing, grounding nutmeg. Come over some time, try my Curry Matzoh Ball. Oh, and water always tastes funny. I swear there are probably seven or eight flavors of tap water in New York alone.

I’m of “sound mind” with limitations. I deal with disorganized thinking and speaking. I might deal with some paranoia, some delusions and some irrational fears. Due to continued stigma, these words seem like I’m barely functional, out of my mind bonkers, ranting non-sensical gibberish, rarely making sense of the world around me. But I carry on like most. I manage to compartmentalize a fairly large majority of those thought patterns. They are constant and often humming in the background like a static radio. Actually, I’m often more rational than most, intellectually aware and intuitively savvy. And I have different wiring in my brain that has me on a beautiful collision course daily. It’s confusing, amusing, frightening, ungrounding and unique. But mostly, it’s just plain exhausting. Sometimes I’m wiped out before dawn breaks. Playing the piano for just two hours can seem like a full day of task oriented activity. And there’s already never enough time in the day to do things. Time speeds by. There’s so much to tackle and life is short. In a blink, gone. Whoosh.

The mental health system needs therapy.

Many people with mental illness have no assistance, which can overwhelm the current health system. This system may not have the right amount of tools or perhaps not enough human power or time to cope themselves in order to assist properly. Please do not get me started on the unacceptable conditions that presently take place on a regular basis for a client living under “supportive housing.” The irony is disturbing. Then again, our political climate seems to match the system and candidly everything else these days, so perhaps change is just around the bend.

There are many, many employees who wind up working in mental health who don’t have the right skill set, aptitude or emotional mindset to work in such an environment. This is so utterly dangerous and such a detriment to the already overwhelmed few employees that are equipped, willing to improve this shaky system. There’s a lot of work to be done.

So, most current medical systems are shit. (Not to dismiss the incredible systems in place that are not shit. There are some fantastic communities and organizations building up magic as we speak. Some of which I wouldn’t be where I am today if not for them, bless their souls.) Though it all mysteriously appears as if the wheels keep turning and churning out this vicious cycle, we’re bogged down. So, I’m bogged down and my support, (i.e. family, friend, therapist, doctor, guardian, etc), will seemingly continue to be bogged down.

I’m still learning how not to fall through the system. Many tasks can take very long to complete, but they’re doable, they’ve been done and continue to be achieved. One would never know upon meeting me that my hours are long but victorious. Though many days I find myself at a wall, I break it down when I can. Some fall through the cracks, some become homeless, and some are already homeless. It can be really unfair, to put it mildly. I occasionally fall, and just because I fall, it may appear like I’m back to square one. But don’t tell me, “You seemed like you were doing so well.”

Hello humans, welcome to planet earth. We all fall from time to time. What, a little tune up at the hospital? A tweak or a check-in for support to better stabilize mind and body? That’s OK. Be supportive with warmth, kindness and compassion. It’s not a criminal record.

I’ve recently stumbled into one of these amazing TED Talks clips that periodically trends the internets. It was about Dr. Jill Bolte Taylor, whose brother had schizophrenia. However, the video was actually about Jill’s experience having a stroke. Though it was a stroke and not schizophrenia, Jill had described and compared her experience so similarly, with such incredible detail, I simply bursted into tears, gut-wrenching ugly cry, shaking at the accuracy of what I feel like on most days.

Yes, my experiences can be a burden. My life can be difficult. It can be beautiful, passionate, frightening and meaningful. My experiences can also be a gift. I am creatively rich, chaotically tormenting. And as far as humans generally go, who isn’t?

I continue to research and figure out my own mind, my own trajectory in this massively insignificant universe filled with way too much significance for my nostalgic melting heart.

Thanks for taking the time to sort through this one tiny viewpoint. Maybe there’s someone else out there with similar experiences and is still researching, too. Maybe there’s someone else out there trying to figure out ways of learning how to work together with their loved ones. In the end, we all just want to cope and get through the day as best we know how.