Camden County College
Chapter Twelve of The Places I Lost It
My application for Social Security Disability Income was rejected. Apparently, at some point during the previous year I reported some income, and that was enough to keep me from gaining long-term disability coverage. I called a Social Security lawyer who promised to get me benefits, but I began to re-examine my sense of antipathy. I needed health insurance, and I needed to work. I needed to get up and do something. Maybe I shouldn’t be lining up for assistance.
Looking back I consider being rejected for government benefits one of the most important events in my recovery. Yes, I was working for some cash at the guitar store, but that was out of the owner’s good conscience and good deeds, and mostly consisted of me hanging out with John, as business was slow. I was also taking classes, so I demonstrated to myself that I could get up and make it in on time, and hold to a schedule and moderate demands. The idea of hiding in the house and collecting SSDI suddenly seemed unattractive and unfair. I didn’t really need long-term disability as I could go back to work. Better to leave the benefits for someone who really needed the assistance. Had I been approved for SSDI it might have been the end of my self-esteem. Already, I was 43, living with my parents, on food stamps, paying nothing for housing, and ready to take a menial job. I didn’t need the reinforcement of a government agency telling me I could not contribute to my own employ. Freud said work and love are needed to make a person fully human. I had the love of family and friends, so I set out in my crappy old car and went looking for a job.
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The first work I found was for my family. My last surviving grandparent, my father’s mother, Grandma Hofmann, was ill and house bound. She needed someone to spend nights at her house, prepare dinner and breakfast for her, and administer her insulin. I spent three nights a week with her and was paid as a home health care aid. We’d sit and watch baseball games or listen to 1940s radio, and I read her books and stories ranging from Thoreau to O. Henry. Grandma still made coffee everyday, and it was the third worst coffee I ever drank, only slightly less terrible than that served at a 7-11 on the White Horse Pike and at what may have been the last Horn and Hardart anywhere, near City Hall in Center City. But I drank it, everyday.
Grandma’s house was built by Grandpa around 1950, and still had a kitchen, appointments, and even some furniture from the mid-century. My grandparents came to Haddon Heights, a sleepy suburb of Philadelphia, in a car loaded with kids and chickens, and Grandma worked in the kitchen while Grandpa drove a tractor through his huge garden behind the house. They put up a pool, and every Sunday in the summer my siblings, cousins, and I would dive for coins that Grandpa threw into the water. Back in the house in 2006, with the powder blue carpets and the wood windows which cold air seeped through, I fell into a routine in which I fell asleep very early and woke before dawn to exercise a bit, study for my classes, and meditate. For years I was a night owl, but that all changed quickly and I began to treasure the quiet introspection of early mornings with no one around, and little sound but the birds outside coming alive and the nearby hum of 295 as cars began to take to the highway. There were still plenty of hours during the day to fill, so I continued to look for more work.
A friend told me about an agency he worked at called Bancroft that had programs for adults and children with developmental disabilities and brain injuries. A position as a job coach for a group of adults opened up, and he arranged an interview for me. I got the job. It paid very little but it did provide health insurance, and it gave me the opportunity to help others on state assistance to work toward competitive employment. I can’t overstate how much going to work at a responsible and caring job improved my outlook and chances at recovery from the mental illness that held me back for so long. Working with adults with autism was equally rewarding and frustrating, but it was meaningful work. For me, true wellness was not possible without the productivity and independence that came from work, and to stand up against a life spent on benefits set me up to get better once and for all. Doing something challenging every day healed as completely as the medicine did, and I could have too easily been cheated of the opportunity to contribute to my own, and to others’, positive outcomes.
I left behind the idea and dream of returning to a significant business career and chose service as the path I wanted to follow. It was a radical change from what I desired and believed in for so many years and, characteristically, I plunged into my new role with too much conviction and too many attempts on the meaning of the idea that choosing a low-income job and helping others was superior to creating value and bringing up others in venture and enterprise. I made a friend at Bancroft, a young man named Daoud, who couldn’t be more different from me. I’m short and fit whereas he is tall and large. I spent much of my life adhering to the precepts of American exceptionalism. He came from Camden, New Jersey and converted to Islam, and all of his life was a struggle as he fought to rise above economic and social challenges. He is smart and full of ideas, and I contrasted his life with that of my brother, Rich, a high level executive for a pharmaceutical company, as Daoud and I stayed for free at Rich’s beach house and walked the boardwalk in Ocean City discussing progressive ideas, critical of the means that provided us hospitality. I was sure the friendship and the progressive ideas would last. The friendship and the love have. The ideas, not so much.
I earned so little money that I still qualified for food stamps. A few of the women at work kept their children slightly underweight so that they would receive more nutrition assistance than that available for healthy kids. We all identified as the working poor. Each day we sat at lunch eating peanut butter sandwiches and chunks of cheese, averting our eyes at the subject simmering on the back burner over a very low but very blue flame; the unspoken lament of every worker on the low rungs of the caring professions: The disparity between the large sums spent to provide such personalized care to individuals who could barely take care of themselves, and the smidgeon of that sum that we were paid. It was as if some people were just worth more. Yet there was no good that could come from thinking about it.
In my dabbling in the class struggle, I became pugilistic. Muhammad Ali was the hero of my youth, and my father used to rouse me from sleep at all hours so we could watch him fight in exotic, foreign lands. Some of the best writers of the 20th century, Mailer, Oates, and Liebling, were at their peak when writing about boxing, and I was obsessed with FX Toole’s stories about the fight game, the ring, and gyms. So I thought I’d give it a try - the boxing, not the writing. I drove into Camden and parked in front of a gym painted with a huge Puerto Rican flag and my car was immediately surrounded by a gang of young men with broken noses who asked me if I was a cop. I told them I was just an old guy looking to learn how to fight, and they dispatched me with the threat that yeah, they’d teach me how to fight, alright. Daoud loved this story and laughed me right back to my station. I ended up practicing at an aikido dojo around the corner from my house and felt the fires of my past kendo practice torch within, until a towering young woman tossed me around like she was a cat and I was a ball of yarn. Sprawled on the mat, seeing stars, I resolved to act my age in exploring my limits. And then, bucking that decision, I dove back into school. I rode a rail to the place that I first lost it. A place that was a state of never having made plans. It was as if I was drawing a giant Venn diagram of the places I’d like to be and the things I’d like to do. Any place, anything, for a change for the better.
I began thinking in terms of a career again. Even though my work with adults with developmental disabilities was significant and fulfilling, it paid a pittance and I never saw myself getting out of my parent’s house. So I chose to continue at the community college on a path toward a nursing degree. On top of one day a week at the guitar store, three nights with Grandma, and a full-time job, I was doing very well in class, and set myself up for an insurmountable challenge that summer of 2006. I would take Anatomy and Physiology I and II, class and lab, in four-week blocks. I stopped work at the guitar store and changed my schedule with Grandma to work nights and days only over the weekend. Class and labs were held Monday through Thursday nights from 6:00 – 10:00, and I was still working days at Bancroft from 8:00 – 4:00. I’d get up at 5:00am and study, and study again after work before class. Home after class I’d study some more until about 1:00a. The class was challenging and full of very competitive classmates. The professor, Dr Scott, was the first teacher I had since Mr Pirollo in 6th grade who I didn’t feel knew less about the topic than I did after a few classes. Academically, it was the greatest challenge I ever undertook.
To make room for work and school I put off seeing Dr Dube, I put down the guitar, and I stopped meditating. I wanted to keep the 4.0 I held in all schoolwork since Florida, and I saw a perfect grade in sight for A&P I. That much I did. In the second week of A&P II, worn down by lack of sleep and buzzing with caffeinated energy, fast-thinking, troubling symptoms began to emerge. I took my perfect grade into the third week before coming apart. I paced around the back of the class during lectures and began side experiments with burners and chemicals during labs. I wasn’t sleeping at all, or eating very much, and I stopped at a bar a few nights after class and got plastered. My moods spun between elation and despair, and I let the individuals I worked with during the day sit idle while I tried to make sense of the physiology of the brain. I seemed trapped between the choice of quitting or ending up back again in Belmont. Two nights before the final and the lab test I tried to strike a deal with Dr Scott, as I couldn’t come back another night.
I manically reviewed my performance in class so far and described to him the depth of my bipolar disorder that now became so assertive so suddenly, and painted my prognosis as dim unless I quit immediately. I calculated that with my high scores a failing grade on the final would still leave me with a C in class. I asked him, with just two nights of class left, to let me walk away and not burden me with a withdrawal. He made a gracious offer to me and the rest of the class, seeing that the efforts of a small group of students was much like mine and yielding similar, if not as extreme, states of mind. He told us we could take the final that night, skip the lab test, and take a final grade before the week was out and the class officially ended. About five of us took the deal. My performance on the test was poor, but better than a zero, and I ended up with a high B in the class. But the damage of the stress overcame me and I saw Dr Dube several times over the next few weeks. He adjusted my medication to equal my increasing emotional lability and to buffet my diminished motivation to do anything at all. I did not register for fall classes, and gave up the idea of becoming a nurse. I rationalized this by recalling how nurses at psych hospitals just wrote notes about patients on clipboards and betrayed to prying doctors any words or actions said or done in confidence, much like the staff at Bancroft tracked the behavior and failings of the people they ostensibly supported. I didn’t want to be a part of the same system that coldly measured my progress with abbreviations and codes representing my setbacks and potential; impersonal notes written on clipboards tossed around the room, covered in scribble written only to influence what medication must be given in order to make a patient more “normal” and compliant. In fact, none of those reasons were the true source of the suspension of my plans. I couldn’t take the demands, and I was very good at quitting things just before I finished them.
I quit reciting the Divine Office and going to mass everyday, and my meditation shifted to a purely Zen practice. I still took Grandma to breakfast and Mass every Sunday, but one week the priest gave a homily on how one of the apostles must have been manic depressive, since his changes of mind were so erratic. I sat in the pew and began to sweat, as if the brass flames of the Holy Spirit that danced about the Crucifix above the altar came truly to light and engulfed the church in a melting fire. The stained glass glowed, time slowed down to a grind, and the priest’s voice became a static of white noise. I shook as I slid across the worn varnished wood of the pew and slipped out the back door, pausing to bless myself with an automatic, habituated cross with my right hand at the font of holy water. I fled into the parking lot. Suddenly, the Mass that seemed so romantic and secure was as unsafe as my mind, and I couldn’t go back inside. I was in full panic attack. I called my brother-in-law, Pat, and asked him to drive over to the church and pick up Grandma.
My Catholicism again dimmed as I became cold to the warmth of the spirit, and my reading of the intellectual faithful didn’t help a bit. I read Dorothy Day and rediscovered William F Buckley and sat amazed that two such divergent thinkers drew on the same religious ideology to underpin their convictions. I sided with Day and considered entering a Catholic Worker community, a place of voluntary poverty and hospitality to the most downtrodden. I saw myself in a rowhome with shutters and fresh paint set amidst ones with boarded windows and needles and crack pipes under the sills. I’d serve soup and stich old jackets. I could give as well as I could take, and the call of selfless service seemed what I needed to purify the thoughts of a final ending that still managed to caress my sleepless nights. I started to give away clothes and even books. A twinge of grandiosity established me Christlike, and I washed the feet of my darkest fears. With the poor in spirit I could feel at home. I followed this plan to the point of meeting with the leader of a community in Scranton, PA. But I change like the wind, and my philosophy of life soon turned again to the libertarian ideals of my youth.
I had moved from anarcho-capitalist to anarcho-Catholic and came part of the way back in conclusion. Over the next few months, with only work - no school, no dating, nothing to interrupt my time but books and meditation – I settled onto a set of morals once and for all. Re-emergent was the belief in individualism with altruism that I read in Hayek, and held fast was the ironic conservatism, the acknowledgement that the very institutions that make a society great may set in play the forces that erode it, found in Schumpeter. I had held a lot of crazy beliefs as I repeatedly went crazy, and although more egalitarian thoughts ruled each episode as I got better, more classical liberal standards seemed to be the ones that were most assertive when I was sane.
And I felt sane. Work was going well, and in early 2007 I received an award for embodying the values of the agency for which I worked. My illness entered a period of remission interrupted only by odd temporal and somatic hallucinations in which reality seemed to have seams into which I could slip; places where the room was arranged differently, doors would open to the unfamiliar, and touchstones leaned against to answer difficult questions moved away and did not hold my weight.
It was as if the light through a window began to shimmer and I felt gravity pull me toward it. Then a lamp on a table wasn’t there, or it moved to a dresser or the floor. My body seemed to turn inside out and a dizziness in my head moved into my heart, and I felt that I would burst. It wasn’t unpleasant. Good things were to come of it, and I felt myself float toward any closed door to slip into the space beneath. On the other side was an answer given without language. It was mystical. It was enlightenment. I sought the opportunity to merge with some force that could not be explained. I had no thoughts, certainly not cultish ones, and no visions of the walking dead as I had years before. I experienced a tangible reality different from our own, where east isn’t east and time holds its own unsteady pace; where the spectrum breaks into different colors than we know and to think a thing is to have it happen, albeit in ways never imagined.
For a moment, as the illusive nature of reality split and offered insight into a greater truth, I felt a benefit to insanity and faced the possibility of answering questions posed, and left hanging, for centuries. Maybe the world created by our collective consciousness was a façade, and we could move from it into a space less organized and more profound. I was on the verge of meaning itself. But I just wanted to be better. I was a second-rate intellect and no spiritual master and I coveted the safety and promise that the world I’d slipped from held. I believe that a person’s greatest strength is also their greatest weakness, and curiosity is mine. It would open up new worlds while leaving me unfocused with an ever-changing mind. My curiosity had often made me suffer, and instead of falling into questions too big for my failing mind to handle I pulled back. I decided to let this move to the cusp of revelation pass, and aimed straight at the middle of my nature instead. The seams of reality that sucked in my state of mind narrowed, and I held on in the familiar room, unwilling to risk another break. The world was ordered just the way I wanted it, after years of disappointment, and I resisted the exceptional and chose the mundane. I would become a glorious mediocrity. The seams closed, and I gave up on any insight that may have come from losing my mind.
Dr Dube posited that these hallucinations were my mind’s way of classifying my new surety about life and its conduct, after so many years of flighty doubts. The hallucinations were curious, but shortly unexceptional and soon gone. I decided not to be crazy and it seemed, just like that, I wasn’t. Into 2007 my symptoms seemed nullified, and I settled into an unfamiliar sense of wellness. Could I be better? Dutifully, I meditated, saw the doctor, and took my meds.
I had a complicated relationship with my medicine. I didn’t know what good the pills did anymore, or if I still needed them, but Dr Dube said I did and there was too much at risk to consider stopping the treatment regimen. Over the years I was mostly compliant with what was prescribed, with disastrous results the summer I did break the contract and stopped taking everything. Still, it was hard to admit, in times of remission, that I couldn’t get by without the twice-a-day doses of bad tasting pills and the side effects that came with them.
I was taking Ziprasidone, a reflective blue capsule that would crease when flexed, and Lamotrogine, formerly a shield with a bitter taste that water could not dilute, now as a generic an innocuous pink lozenge. Clonazapam, a tiny, scored, yellow pill, was a rare PRN when sleep was too troubled to come, and the side effects of each at times defeated the benefits of taking the prescriptions. My heart beat fast, sex was inconsistent when attempted, and the summer was destroyed. While I never did well in the humid heat of the Delaware Valley, the meds made me sweat so much that I had to wear two shirts to conceal the perspiration that seeped through the base layer and exposed me as one who suffers; one too uncomfortable to be approached; one too gross to touch.
The meds were obviously powerful enough to change the way my brain worked. If I ever was even an hour or two late for my afternoon dose I’d get the anxious, unsettled feeling of too much coffee, and withdrawal would begin. So I walked around each day with that dose in my pocket, not to miss it. And who knew what these powerful psychotropics would do to me over time? The meds only recently had gone off patent, so they hadn’t been around long enough for doctors to understand the permanent, lasting effects they would have on a misfiring brain. My life was an experiment, a research project, and no one knew with any comfortable probability how it would turn out. But Dr Dube pointed out that no one knows how any life turns out, and I may not even have a life to live if not for the meds. So I took them, and continue to take them, with the assurance that I have been well more often then not while on these goddamned pills.
Most extreme, though, is how the meds have limited my options in life. Any decision I made considered the insurance necessary to obtain my medicine each month. I couldn’t start my own business or go away on a long retreat without access to health insurance and my meds. In a way, I was trapped by a need to be treated that limited my options and my freedom. But freedom demands its limits, and only within such limits can one truly excel and know it. This search for flight within the cage of illness keeps me taking my medicine still.
At Bancroft I worked as a job coach for three men in their 40s who were severely disabled and held dual diagnoses with mental illness. We found things we shared in common, like music and old TV shows, and spent healing, productive days sorting, stamping, and delivering mail and packages across the agency’s few campuses. During breaks on nice days we’d walk to a pond mirrored with clouds adjacent to the main campus and watch the herons stalk fish along the opposite shore, on which old trees crept up to the water. Every Friday we’d go out to lunch at the Cherry Hill Mall, where we’d mix with a population immune to the challenges of broken minds and deeply troubled psyches. The men I worked with socialized well, and did a tremendous job. The success and visibility throughout the organization of my work exposed me to people at all levels, and in all functions, of the agency, including several executives, and they viewed me with curiosity as a middle-aged man, obviously working below his experience for just over minimum wage. One, a VP of Facilities, began to query me about my background. I overlooked any talk of mental illness and detailed my professional experience, maintaining that after doing so well, so young, I wanted to spend some time in service to others. He interviewed me for a position working with sub-contractors and purchasing for group homes, an opportunity for me to return to business dealings and consider a career again, and not just a string of jobs. I quickly assessed that while I treasured the work I was doing, I even more desired the chance to lean back on my strengths at organizing and persuading in the fray and challenge of buying and selling, and I could better serve Bancroft’s mission by settling into the business end of things. I was now 44 with a chance at re-entry into greater responsibility and fuller use of my capabilities and experience. He offered me the job, and I accepted.
On the ride home to my parents’ house I was giddy. A few weeks before I’d bought a new car, a little, blue Kia, that matched my need for economy and anonymity, and I impatiently meandered through the colonial homes and small shops along Kings Highway in Haddonfield before coasting down the hill through Audubon and up again to Mt Ephraim and home. I had great news, and I anticipated an excited reception as I discussed the opportunity with my parents.
I should have expected their caution. One of the things a person with mental illness all too often runs up against is low expectations from family and the medical system. Stigma leads people who ought to know better to assume the diagnosed person just can’t, or maybe shouldn’t, do that much. My parents thought that it was better for my treatment to just sit tight and stable, not take on too much, and definitely not risk stress or relapse. I never got this discouragement from Dr Dube, but I was getting it at home, and my parents still influenced me greatly. They convinced me to stay smaller to stay healthy, and instead of risking a return to mixed episodes for the recovery of my career, on their counsel I went in the next day and told my new boss I’d reconsidered. I appealed to my overstated selfless leanings, held myself up as a model of service, and insisted I continue to work directly with the developmentally disabled instead of in support of the physical plant of the company. In truth, I so wanted to enter the business, but in the counsel of caution and low expectations I closed that door.
The irony is I soon stopped working as a job coach and took a position as medical and day support in one of the group homes of which I would have been overseeing the maintenance and requisitions. I interacted very little with the individuals who lived there, took naps in the afternoon, directed the investments of the little bit of money I saved, and surfed the web a lot - infected by the tragedy of culture that presented too many options for self-development and always kept me distracted. I thought perhaps my time of opportunity had passed, just as I was firmly back on my feet.
My relationship with my parents was growing difficult. Laced with a combination of gratitude and capture, I both loved them for the open arms they welcomed and held me with and felt increasingly uncomfortable and trapped in that embrace. I was far too old to be living at home. My father, with his quiet counsel and his unfailing fight was a role model, and only he could see through the veil of my disorder and ferret out the truer feelings within when I faked being well. My mother, who I was so close to when I was a kid, was colder and less prone to give in to my moods. At my worst I begged for sympathy from her and she said no, and she expected me to stand up and fight no matter how weary I became. She questioned my choice of doctor and his advice, and lobbied for quackery and alternative medicine over peer-reviewed psychiatry. Yet she stood with me and opened her home to me as long as I needed help.
But that was just it. I needed very little help at this point and wanted to just tear away. They sheltered me, yes, but that shelter inhibited my ability to take risks and jump out from the trap of surrender, stigma, and low expectations that held me down. Without their charity and support I never would have recovered, and I kicked myself for any ill feelings I felt toward them, and I kicked myself for the image of me unconscious on the bed in the old apartment maybe dead; the image seared into their minds that kept them reluctant to let go and let me be. Empathy for their plight dimmed, and my anti-authoritarian streak became assertive.
Perhaps this anti-authoritarian impulse led me deeper into Zen, a system of psychology without a deity or director to impose on the practitioner what dictums like “right judgment” and “right livelihood” might mean. One had to sit on the cushion and meditate and figure it all out, and likely soon realize that any answers firmly adhered to were probably wrong, too. I saw a long residency in a Zen monastery as my means of escape, but again my need for daily medicine and my inability to pay for it without work and insurance kept me bound to my current situation. So I set up my cushion at the top of the stairs between my rooms. Behind it, hanging from the wall, was a 19th century calligraphy of bamboo alighted upon by a bird and a dragonfly from my great grandfather’s estate. In front lurked a darkening view down the stairs. From this perch I sat for hours and questioned everything, including why I clung to the idea that I had bipolar disorder when I was doing so well for the longest period of time since I was 30. I drifted into the whirlpool of identifying with a disease again when the disease held little grip on me at all anymore. I took a stab at non-judgmental awareness to pull away from the vice of lost hope and to let go of the hackneyed stereotype of crazy that still held me back, even after living without a significant episode of mania or depression for over a year. I waited month after month but absolutely nothing happened. Health presented itself as boring at first, and then a sense of satisfaction set in and I didn’t miss the mercurial changes at all. I felt a chance to re-define myself, and reached out to lightly grasp it lest it be crushed by the overenthusiasm I brought to so many of my pursuits. Quiet contemplation and months without overstimulation led me to a quiet place of level moods, and as fall came with chilling nights and shorter afternoons, I sought to avoid a move too cold into the winter.
I decided to spend some time, if only a few days, at a monastery to explore my relationship with a quieting mind even further. I made an all-encompassing fantasy smaller and more manageable, and stepped into a safe place between the big competing ideas that had distracted me for so long.
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