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0 By Max Guttman
I was asked to write down three things I cannot live without on a piece of scrap paper for a seminar on interpretation. At that time, I was floridly psychotic, self-referential, tangential, and totally detached from what was happening to me, around me and despite of me. On the paper, I wrote down three things: (1) Ensure, (2) Education, and (3) Language. My belief is that I choose Ensure, and each other word, for their complex and profound importance in my life as well as for their multiplicity of meanings. Due to my symptoms, I was in basic survival mode. My body was responding by signalling that I needed to focus on my most basic needs. That is, if I was to survive and continue to follow my dreams. My familiarity with basic artificial nutrition has a rich past with the Ensure drink.
Artificial Nutrition
My grandmother had passed away years ago. Yet, I still remember the various life-sustaining and life-preserving measures our family took to keep her alive and ensure her health and vitality. My family ordered cartons and trays of the beverage. They arrived at my grandmother’s apartment for over a decade during her final years.
I am no stranger to artificial nutrition, whether that’s in the oncology unit or nursing homes, keeping the body alive through any means necessary. This is something I have been exposed to as a profound ethical dilemma. I continue to question it for my own personal end-of-life plans including capacity issues, my own situation and my history with losing the ability to care for myself legally.
Knowing that I have lost capacity once before, I was told I might not ever get it back. The associated thoughts and feelings of being totally powerless to make decisions on my own behalf was as devastating as it was frightening. The feeling of not being in control was something that I have always feared. Many people do but are never put in a space where, physiologically, they are not able to control themselves.
Turning Back The Hands Of Time
In 2008, I was young and unaware of my illness. I pulled on every and any survival method I could think of to stay alive, healthy, and seemingly able to take care of myself. All the while, I was told I was losing my grip to make rational judgement calls and, increasingly, using bad decision-making skills. Then, I heard these behaviors as life choices. I ignored these very loud warning bells. These should have signalled to me that there was a serious problem. I was a young adult though. I had just learned how to live on my own in the community as an adult and function at the level of a college student in Upstate New York.
Something was happening to me that was turning back the hands of time, developmentally, in terms of my own capacity to self-manage, exercise sound judgment and be rational about my living situation and life circumstances. My situation was becoming more and more serious. I knew, if I was to survive on my own, I would have to be more resourceful and clever about managing my money, conserving food and energy, and living totally independently. I was preparing to live a new lifestyle.
Progressively Stockpiling
I began to progressively stockpile the drink Ensure, and other artificial nutrition drinks, snacks, medications, (even gasoline) and, eventually, sugar to keep the heart pumping. I would lose weight for an extended period of time due to limited access to the local soup kitchen and from lack of available affordable transportation. So, I began asking friends to bring me packages of fresh groceries from week to week.
It got so bad, towards the end of May, that I was eating leftover meals from the common fridge. I had no idea whose meal it was, its freshness or the visibility of it going missing. The owner would often begin to point fingers at the person he thought was eating his leftovers without permission. But that was a minor infraction, in the litany of boundary transgressions, threatening gestures, non-verbal articulations, and unrecognizable signs I would point to when making a point or trying to broadcast a message to my peers through my thoughts at school, home, or when driving.
Ensure became a more and more friendly visitor in my fridge. I’d stockpiled everything that could potentially be depleted. I knew, full well, I may not have another opportunity to make up for the provision. I would simply have to do without it to continue on the struggle and work cross-purposes with the university. Of which, I refused to accept graduation and move on with my life unless the school overturned its rejection of my application to its English graduate school.
Education: Above Reproach?
Education, while it continues to be important to me, was regarded at the time by me as something above reproach. It was indefensibly pure in nature. It was both noble and regal. The highest gift I could give my school was to continue on at the apex of the academic affairs. The deepness of my belief in Education still echoes in the chamber halls and libraries I passed through: those same halls where I would hang up signs, making myself out to be a victim of political academic games and unfair practices in higher education.
The extreme nature of the victimization inflicted upon me by the English department went deep into the psychological wellspring of crimes that persisted to continue. They’d continue without retribution, the intervention of the law or mediation, by a party at the university or by friends and relatives. Collateral intervention and treatment could have put things into a more accurate or relative perspective. If they had been applied in a non-judgmental way to my situation, this might have helped in connecting me to treatment sooner, before the psychosis was in full bloom. Instead, the very language I was seeking – the completion of my unpolished rhetoric and years spent learning about how words work – would also fail me.
Bowing Instead Of Hello
About the time I began running out of medication, I began hearing voices. I realized my body was ridden with involuntary spasms and tremors. I went looking for any and all medication I could find. This was to ensure I would continue as a student in the pursuit of higher education.
That was when I noticed the signs were changing all around me. Words were taking on double, sometimes triple meanings. I was unable to read or speak coherently. I’d get tongue-tied on a phrase, common expression, or any colloquialism that was generally assumed to have a particular meaning. I was in the mindset of challenging everything, everyone, and all meanings to de-stabilize and create a new, altogether different, language. I’d get confused when communicating with people and reading directions, and even about the simple hand gestures on which we all have an unspoken understanding of their intended meaning.
I was losing speech at a fairly substantial rate. I knew I would have to begin planning my responses, greetings, and salutations with limited capacity. This was difficult, especially because some language was becoming unclear or wholly useless at different rates. The act of trying to implement basic interactions or sustain situationally inappropriate language became, increasingly, a struggle. For example, I wasn’t to speak with my professor directly. Yet, I had to communicate with him for class each week face to face. Therefore, I began bowing instead of saying hello, goodbye, or anything that would orally contribute to tension between myself and the staff I was supposed to keep at a distance.
Voices Of Doubt, Shame and Negativity
I began stealing medication at home. I’d search through the drawers of my housemates and swallow unknown pills that weren’t prescribed for me. I was also hearing very commanding voices to keep taking more medication, all of the medication. Otherwise I would have to begin fortifying my home against the Binghamton police. I believed they were broadcasting on the telephone poles from speakers that they would enter my home, with force, if I did not do one thing or another at their will.
I refused to listen. Not because I knew they were just voices, but because I knew the voices were all the self-doubt, negativity, and shame I had already experienced. I felt determined not to let them follow or consume me. I believed that if I continued on and lived a normal life, this would involve adjusting to my new-found stiffness. A condition which would blossom into catatonia and other physical complaints. It was becoming increasingly difficult to move around and ambulate without confusion and extreme agitation.
Ticking Time Bomb
Ultimately, despite having all three items on my list: (1) Ensure, (2) Education and (3) Language, I was still unable to survive without intervention from the authorities. Moments after I lost all control of my body, I heard voices that resembled a bomb timer ticking away. I then heard a countdown that seemed like it would result in an explosion. Running out of my house, naked and totally paralyzed with fear, I ran into the local police. They were investigating the broken windows in my car.
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It seemed that in my confusion I had thrown a giant rock through my car window. According to a re-telling of the story and written documentation of my alleged description of the events, I had crawled through the broken window. I’d then taken the same rock and thrown it through the window on the other side of the car. All this, to make the glass appear even.
Are You On The Wrong Path?
Anything for the semblance of normality. Anything to ensure education and the pursuit of my dream: to be a language expert. In the end, the very language that I used to survive turned on me. It became so inaccessible and ineffective to continue without eventually going into free-fall and in need of immediate help. When I got into the police car, I looked at the monitor. The monitor said, “Suspicious Signs”. I knew then, as I know today, to be very suspicious of anything which went without an explanation or a plausible, rational solution.
Anything that takes more than three words to explain, three to clarify and another three to challenge the original meaning is nine words too long. Instead, we all need to let each other know more clearly. We should, safely, ensure we understand when we are on the wrong path. We all should try listening to a different perspective without further destabilizing and falling further into crisis.
UNITED STATES
UNITED KINGDOM
