Preface

The Revisionist describes events I experienced beginning in 2008, the year that I graduated from college at New England University. However, the actual writing began shortly after the completion of Small Fingernails Even Less Love, which chronicles the impact of my mental health condition on events leading up to my last semester at college. The Revisionist characterizes the legacy of my mental health disorder after returning home to Welsh County. In doing so, I evaluate both the long- and short-term impact of my mental health issues on various domains of life upon discharge from a state-level psychiatric hospital. Documenting the course of ten years of lived experience with schizophrenia, The Revisionist utilizes a broad brush to paint the life of a person suffering from chronic illness to the reader. Beginning with the last chapter of University on Watch, “New Vistas,” I utilize primary documents (e.g. emails from my Gmail account and academic articles I wrote and that were published in the Journal of Psychology) to highlight the personal and professional implications having a mental health disorder has had on my life as a social worker and a person in recovery. This book is truly a hydra of first-person narration, robust characterization, primary electronic documents from this period in my life, and articles endorsing my recovery. Building upon the premise that it is an unfair assumption that recovery, being cured and healing are one and the same, The Revisionist, similar to Small Fingernails, is a contestation of the modern narrative suggesting that complete recovery can happen for everyone. The Revisionist will also hopefully lessen the number of people falling out of treatment, relapsing, or succumbing to reactivating mental health symptoms due to not knowing how to put the right supports in place. Without the right support, and without being armed with the right information and facts, people might spiral out of control similar to me and so many others in life. This is seen visibly in The Revisionist. In addition to being a clinical companion to Small Fingernails and University on Watch, The Revisionist also concludes the trilogy of Jacques Peters, a person with a mental health diagnosis, and an individual in acute psychiatric crisis who ultimately becomes a social worker and mental health advocate. The reader should be aware that all names, locations, and identifying information have been redacted to protect the privacy of those involved in this very real and authentic story of my time recovering from years of ongoing psychiatric distress and a new mental health disorder stemming from the ravages of first-episode psychosis.

Introduction

Far too many stories and firsthand accounts of recovery are terminal and end with a cure or picturesque life for the consumer of services or “sick” person. This recovery narrative is different. This is a story about struggle, ongoing collateral pushback from friends, and internalized self-doubt. Chronic illness, either rooted in psychiatric or medical symptoms, can be a lifelong road with many critical junctures for risk of relapse, suffering, and systemic issues with access to treatment. I hope my story sheds light on not only the aspects of healing that serve as hope to readers but also the plight of the consumer riddled with making ongoing difficult life choices due to the severe chronicity of their symptoms. After finally returning home from college, after my discharge from the state hospital center in upstate New York, I began my long journey. This is a journey of heartache, despair, and all the negative emotions conjured by a chronic mental health disorder. Knowing full well that without applying the right measures and putting a plan in place I would be at risk of further issues, I applied the learning lessons of my past to my situation today. This is that story. After graduating and eventually becoming a social worker and disability rights advocate, I learned how to live with my symptoms (and, simultaneously, despite them). I am Jacques Peters, and I will explain to those reading Small Fingernails and University on Watch that chronic means just that. Ongoing, and a continuum of symptoms that will wax and wane as our life stories unfolds. These symptoms will impact the very fabric and quality of my life. My story is not unique, but it is largely untold—it is taboo for people in recovery to admit that when there is no cure, the only thing left to do is never stop fighting for life. As this book unfolds, the result of not stopping fighting, to never giving up, will become obvious to the reader and a warning to everyone with a longstanding and chronic illness to stay in treatment and never resign or surrender. The implications of doing will hopefully warn the reader in vivid terms to keep close to healing, even if a full cure is impossible.

First Steps and Setbacks

The weather and temperature were perfect outside. It was summer, and I had been in inpatient since spring. Everything was right about the world it seemed on the day of my discharge except for how I was feeling and the state of mind I was in after being released from Freedomtown State Psychiatric Center. The first moments out in the “free” world, outside the gates of the hospital, I still remember not feeling as liberated as I’d imagined I would. Instead, I felt strange and awkward in my own mind and body. As time passed, strange and awkward would become an understatement. I really didn’t know how to feel after being in the hospital for so long. I had an even more difficult time re-engaging with my friends. The last people from our little clique I spoke with were Jonas and Kim and that was in the hospital. Vito, Mcdaggot, and the rest, I hadn’t seen face-to-face since we were all together in Freedomtown almost a year ago. Given the rawness of everything that had transpired, the first summer was the worst. “Fuck you, faggot!” Spitting at me, Kim stared me down. Kim was the last-standing roommate from our group I lived with when everyone else had graduated. He kicked me out of our apartment due to the impact of my symptoms on my behavior and quite frankly, out of fear I might hurt and poison him. Like I said, this was my first summer out of the hospital. I’d never seen Kim behave this way. At the very least, I didn’t remember him behaving like this, even when he rejected me out of our apartment in Freedomtown. I didn’t know how to respond to this sort of display. “Pardon?” was all I could really say to him. I mean, what do you say when someone spits in your face? Most of my friends just watched Kim perform his little stunt in Vito’s backyard in silence. I suspect they were just as shocked as I was to see him act this way. Vito was my white knight. Unfortunately, when I got very sick in Freedomtown, he had already graduated. I suspect my circumstances would have been different if he had still been enrolled in classes at the University and we were living together. Back on Long Island, in the town of Northvalle, Vito’s parents’ backyard was large and could support a large gathering of friends and family. There were about ten of us there from New England. I spent most of the time at Vito’s party after being discharged from the hospital talking to him inside. “So, you feeling better buddy?” Vito would ask, when the conversation died down a bit or I couldn’t think of what to say. “They have me on a lot of medication,” I kept repeating. I did this to signal how bad the situation was for me, and because I couldn’t figure out what to say or even how to say it. I was suffering from the residual loss of language. I wasn’t the debate team captain or rhetoric scholar I was a year prior. I was tired, on half a dozen medications, and needing support. Even though I wasn’t feeling well in the early days, little socialization efforts and small parties were extremely healthy for me. I usually felt a little better, no matter how bad off I was, after spending time with friends. This posed several complex issues. Firstly, I had lost a number of close friends and acquaintances due to my behavior at New England during that final faithful semester when my schizophrenia symptoms activated. The behaviors I am referring, by in large, were the untoward psychological and sexual advances I made towards Cynthia, Patrick’s girlfriend. Kim was still upset with me, too, for my behavior in the apartment before he ultimately kicked me out, and I suspect from what he was hearing from Patrick about Cynthia and myself. I wanted to put all this in the past, and move on. To accomplish this, and begin resolving the conflict between myself and my college friends, I put several plans in motion. Each plan, and the strategy behind them would take on several phases throughout my recovery. The initial phase, when I was totally isolated and abandoned, I would bow to Patrick and Cynthia’s demands and accept full responsibility for my behavior when I was symptomatic. However, as time unfolded and my recovery continued, this wholesale acceptance of my wrongdoing during the tenure of my illness would replaced and revised. Overtime, as I understood my symptoms, I would take less and less ownership over periods of time when negative behaviors outpaced prosocial attitudes and interactions. Meaning, when symptoms clearly rooted in illness became more pronounced to friends, I learned, overtime, not to feel guilty, or upset with myself if my collaterals became irritated or would respond without compassion. This is the point of departure of my repression. Where years of undealt with feelings of loss and abandonment began to accumulate. Beginning with my ex girlfriend, to the English department, and Cynthia, Patrick, and Kim, loss and feelings of abandonment would trigger further episodes. These episodes would complicate my recovery, making the ten year journey ahead a layered sea of emotion. Some of these emotions were healthy, others, would be the basis of maladaptive coping skills and very damaging. Eventually the tide would come in, making everything visible to everyone in my social world. These are the vulnerable moments due to the extreme nature and visibility of my symptoms to others. In recovery, the prosumer must come to terms with this naked feeling and overtly visible aspect to healing. Visibility to everyone, including providers, family, friends, is product and legacy of the prosumer. Yet another issue was, due to my residual symptoms, it was hard to work up the energy to spend time with friends, let alone go out into the world and make new ones. This was the biggest dilemma of all. I had given my friends so much grief, and now all I had left was them to lean on. This issue would be the biggest hurdle during my recovery—re-forging relationships that had broken during my episode. Indeed, during the early phases of my “recovery,” I experienced breakthrough symptoms regularly. While this phenomenon usually occurs when a condition goes untreated for a long time without medication or psychotherapy, breakthrough symptoms also occur when a person is extremely traumatized and to new circumstances around living with their diagnosis, e.g. work, living space, or interpersonal conflict. This was the biggest hurdle early on for after returning home to Welsh County. When these symptoms manifest, it can be a devastating blow to morale and hope of recovery. Imagine doing everything at your disposal to heal, but continuing to experience intrusive and paralyzing symptoms. Breakthrough symptoms can start as early as before your discharge from the hospital, from the first onset of your disorder to months or years down the line. They can also start when a new trauma or negative element comes into your worldview. My therapist would teach me how to handle these occurrences. My friends simply did not understand these bizarre symptoms. For most of my friends, these breakthrough symptoms seemed like monthly setbacks. Unpredictable bouts where I experienced temporary loss of insight and judgment. With this said, it became difficult to win the trust and respect of old friends who were growing tired of repeated problems, and the same mistakes, over and over again. In these early days after discharge from the state hospital, there were very few people who believed that I would have a full recovery and even fewer that stood by my side in the distant wake of first episode psychosis.

Fear of Relapsing

The devastation of my “break” in Freedomtown signaled to me that I needed help, and lots of it, if I was going to manage my new diagnosis of schizophrenia. To be quite honest, while I was unstable emotionally in high school, I never believed I needed medication or counseling. I didn’t think I was sick or had a diagnosis. I attributed both episodes in high school to adolescence and my environment. Looking back, while both were contributing factors that exacerbated my symptoms, I still had an underlying condition that required management. After discharge from Freedomtown State Psychiatric Center, I wasn’t taking any more chances with my mental health or leaving anything to the hands of fate. Given the seriousness of my condition, and what was explained to me in the hospital when I regained enough clarity to understand what was being suggested about my new diagnosis, I knew the road ahead would be precarious. I needed to be more careful about my health than ever before in my short life as a young adult. As far as I was concerned, there would be no more relapsing. Sure, I knew I couldn’t control my illness. But I also knew that I could do everything in my will possible to not let it control my life, to do what I could to manage it. The word diagnosis was not foreign to me as a twenty-one-year-old. However, its meaning, for me, and in clinical practice, would become a journey of understanding myself better. In August 2008, I was both paralyzed by residual symptoms and in almost constant fear of relapsing. Whether you have a chronic, longstanding condition or are suffering from a new diagnosis, the fear of symptoms re-activating, or worsening, is a real problem. Most of us ask ourselves every day: 1) Will I always be like this?, 2) What if this happens again?, or even, 3) How do I know I am truly recovered? These are all totally normal questions to ask and wonder about—it’s normal to feel scared of our worst fears becoming a reality. The truth is people are in just about complete control over our own mental health. Despite what some people believe, our mental health is in our own hands. I suspect this is why my friend Mcdaggot reminds me that I need to take accountability at all times, regardless of my illness. I am not sure Mcdaggot truly understands the implications of his statement. To suggest I don’t take enough accountability in my behavior is a loaded statement, because it is far too unspecific and implies different things with multiple meanings. Mcdaggot of course is referring our little social circle. I had flirted with, and made sexual advances with my good friend Patrick’s girlfriend. I fully believed she was my wife, or so, the voices advised me as such during the short period prior to my hospitalization when my symptoms were in full bloom. I had also thrown a chair at my roommate’s Kim’s wall, and dragged my bodily waste across the floor of the apartment we lived in together. Mcdaggot wanted me to see my part in all of the madness my illness created the previous year when I was in crisis. I truly think we need to break all this down further. In fact, let’s make it simple and just get to the root of it. What should I “own” and what I should chalk up to “illness”? This is the question and task of the revisionist. The prosumer must differentiate, at all times, the environmental, biological, genetic and parental contributing factors to how we feel and what we think before and after our recovery. But are these markers the only indicators that speak to how we measure our own health and righteousness? The answer is, probably not. In fact, these contributing factors are just that. So, in the event your life circumstances are particularly limited and you feel restricted in your capacity to maintain good mental health, think again.For the most part, the capacity for people to maintain their mental health, recognize new symptoms when they activate, and work on eliminating the impact of extraneous factors that can contribute to limited or poor mental health, is truly in our hands. Self-determination, our drive and the very mobility needed to work on ourselves and harbor enough self-awareness to realize our own strengths (as well as limitations) comes from within. Sure, some of us are put in impossible situations, born into poverty, victimized, abused and maltreated, but even in these circumstances, there are those who rediscover resilience, and who make it, despite the seemingly disparate nature of their problems. So, why did I fear relapsing so much during those early moments in my path to healing? The answer: Regardless of the successes I already experienced with regaining control over my health again, and the positive aspects of enacting certain behaviors that served me well, I couldn’t see the bigger picture just yet. For people in recovery, the road ahead can seem long, especially with seemingly chronic diagnoses, and often, people with a diagnosis believe that persisting over the long haul (or in some cases, lifetime) is impossible. The rest of our lives, for many of us, is too hard to wrap our minds around. This is true especially for young and even middle-aged people. Simply put, a lifetime seems like a lot of work, like too much of an effort to sustain. This is why I made mistakes in the early days of my recovery. I would spend the tenure of my recovery thinking more in the long term, planning ahead, and not dwelling on day to day crisis management. To do so, would take time and healing. In the meantime, I still had to live, and be okay with making mistakes, even if my friends from college weren’t accepting of my new limitations. The fact of the matter is, maintaining good health, especially our mental health, will only make living easier in the long term, creating and allowing for more solutions during difficult situations and making everything more manageable. Aside from remembering this totally reasonable explanation for why people lose sight of their recovery plan, people continue to rationalize stopping or discontinuing behaviors that promote healthier decision-making. They stop putting into action self-management techniques consistently during their everyday routines, and self-care measures during the tenure of their illness. This can be due to several reasons. Sometimes we deem ourselves cured. Other times, we encounter a seemingly insurmountable situation created by our negative behaviors as a result of playing out symptoms of a disorder. The treatment of my new disorder would require a great therapist. The task ahead was getting underneath the trauma but also capitalizing on my strengths to drive treatment forward to out pace my symptoms. Whatever the reason, there are many, almost infinite self-rationalizations we can manifest to discontinue our self-care practices. My blessing and strength was I always harbored a never give up, fight to the bitter end attitude. In a revision of this old pattern of behavior, I would need to learn how to make sure never giving up didn’t mean repeat errors or take things into an extreme place similar to my crisis in college. Avoiding catastrophe, also means eliminating negative self-messages, which become future cognitive distortions, seemingly real and true, but at the root, they are untruths and outright lies that our minds manifest. They are maladaptive, unhelpful, and at times frightening. If we follow these negative thoughts to their horrific conclusion, they are disturbing to most of us experiencing them. Self-CBT, disputing and challenging these rationalizations every day (and when they first occur), will go a long way in terms of sustaining our positive behaviors, and persisting toward our goals for ourselves and for good mental health. In this vein, paranoia, fear, self doubt, self loathing, and self criticism would become revised through years of learning how to do all this in therapy.

To purchase Univeristy on Watch and Small Fingernails click on the hyperlink text.