In honor of #WorldMentalHealthDay, we’re sharing a few stories from women whose lives (like so many of ours) have been directly affected by mental illness. In this piece, realtor Kamali Chandler shares the story of her father—a man who lived with schizoaffective disorder—in his final days.
I stared down at my mobile phone and looked at the missed call and voicemail notification. There had been no need to listen to the voicemail. I already knew.
There I was, on that Monday morning in August 2014. My 9:30AM gym class in Tribeca had just let out. The studio remained dimly-lit and the tempo of the music was still audible. As the room emptied, I searched for the courage to return the call and face my reality. I exited the gym with a slow, foreboding pace and left behind the warmth of the endorphin-filled studio.
The splendor of the summer sun was overhead and illuminated the city, but the world seemed to have faded to black. I mechanically entered the series of numbers into the dial pad. After seventeen years, it would be one of the final times I dialed that number. I placed the phone to my ear and after a few rings I heard the familiar voice of the receptionist at the 252-patient, state-owned nursing facility that my father called home.
The receptionist placed me on hold, as my thoughts were immediately transported to the previous days when I had visited with my father, as he had been running a high fever. “I have been through this countless times before,” I remember thinking, “He would be at the precipice of death, would make a surprising recovery and life would resume.” I had convinced myself that this was another one of those times, so I gave myself that particular day to go to the gym and later attend to work. In my heart, however, I knew that this time was different.
My thoughts were interrupted by the voice of the receptionist, I tore myself away from the incredible guilt that I suddenly felt. She transferred me to one of the nurses. I cannot recall if I spoke with Nurse Kim or Nurse Lisa on that morning, but in a low voice, I heard the words, “I am sorry, Kamali, but your Dad is gone.” He had died thirty minutes earlier—alone with his thoughts, just as how he had lived.
There were tears, a mix of grief and relief. Relief because he was free, his suffering was finally over. I composed myself and decided to walk the 4 miles home, as I turned my focus to preparing funeral arrangements.
His name was William Lewis Chandler. Aside from his two children—my younger brother and I—he did not leave his mark on the world, as so many of us strive to do. His life was by most standards, unremarkable. He simply existed on this Earth and then he did not. I have a few photos of him that show a handsome, young man, his tall slender physique, fashionably dressed in the style of the 1970s.
“His life was by most standards, unremarkable. He simply existed on this Earth and then he did not.”
In other photos, he is holding me or my brother, the soft gaze of his chestnut-brown eyes and his characteristic tender smile, upon us. In those photos, one could not detect that my father suffered from schizoaffective disorder—the medical name for those battling combined schizophrenia, bipolar disorder and depression. In the world of mental illness, this is perhaps the worst of diagnoses.
I do not know much of my father’s early life. The little that I do know I pieced together from my mother or other family members whom I have met at various times in my life. The other pieces of the puzzle remain in the contents of an envelope which I keep locked in a file cabinet. The contents are my treasure-trove of objects that he once held in his own hands; objects which serve as proof that he did exist; a tattered June 1964 middle school diploma, a wallet-size high school graduation photo, his name and age, “Billy Chandler, 18,” written on the back in his own handwriting, a yellowed driver’s license with its plastic peeling and letters fading, a cassette tape of The Commodores and a military discharge form dated 1970, which has almost disintegrated with time and is now held together with tape.
I know that he had exhibited signs of mental illness in his teenage years. Although highly intelligent and incredibly artistic, he kept mostly to himself. An introvert living in a world of extrovert ideals, he was very comfortable in his solitude and went unnoticed and ultimately undiagnosed until his late twenties.
Unfortunately, he would not receive the early intervention treatment that is critical in helping those afflicted with mental illness. It was the 1960s after all, and the resources available today were almost non-existent then. Moreover, it seems that there was an insidious onset of his mental illness; the ravaging of his brain was slow progressing, which allowed him to lead a normal life, at least for a time.
Many mental health experts agree that the major life moments which we all start to experience in our late-teens and early-twenties can be triggers for those predisposed to mental illness. After a brief stint in the military, my parents married in 1972. He was only 24 years old. In quick succession he became a father to me and my younger brother. The stress of familial demands also marked the onset of my father’s psychotic episodes. My mother remained with him for several years, and has often recounted the desperation that she felt in trying to help him. Her efforts and the numerous hospitalizations served only as temporary Band-Aids.
There were cocktails of antipsychotic medication, frequently accompanied with dreadful side-effects. Then there was his anosognosia, one of the most devastating symptoms of mental illness—a denial of one’s own psychological state. He simply could not understand, nor accept the uncomfortable truth: At 29 years old, he had joined the segment of our population plagued by chronic mental illness.
As a result of the anosognosia, he rejected his diagnosis, treatment and medication. In 1976, with very little choice, my mother reached the conclusion that she would have to start a life with me and my brother; a life that did not include our father. I was only four, and my brother two. It would be almost twenty years before I would see my father again.
“He simply could not understand, nor accept the uncomfortable truth: At 29 years old, he had joined the segment of our population plagued by chronic mental illness.”
In 1997, by then a divorced, single-mother myself, I grew increasingly curious about this man—my father. I had questions about where he’d been all of those years, who he was and of course, how he was. There was also a sense of empathy that I carried in my heart. I had learned that he was institutionalized, but had no contact with family or friends. He was alone in this world. I oscillated between curiosity and human compassion; however, if I must be honest, the impetus behind my search was propelled by an underlying anger.
I was angry that I had been robbed of a father-daughter relationship. I was angry at him for what I interpreted as a complete disregard of his parental responsibilities. Like most us who carry our injured, inner-child into adulthood—the child holding a grievance against a parent—I was carrying my 4-year old self. I was a girl on a mission to find her Dad and determined that he would make it all better.
When I finally found him, he was living at the New York State Veterans’ Home in Montrose, NY. I am unsure how long he had been living in that particular nursing home up to that point. I feel compelled to add, that this facility is a ray of light in a throng of institutions where even in the 21st century, the mentally ill often live in deplorable conditions. I am forever indebted to the nurses, nurses’ aides, administrators and clergy at this facility. I learned that my father had been transferred there from a center in Staten Island. When and how he had arrived in Staten Island will forever remain a mystery to me. If I had to guess, however, he was likely transported there by the NYC Police Department.
Deinstitutionalization policies continue to make it so that those who are not in a prison cell, (where mentally ill inmates are more susceptible to be victims of physical violence and rape and almost never receive any mental health treatment), are released onto the streets—where the possible dangers are even worse. They are the throwaways. I learned that my father had been one of the approximately 104,083 homeless adults in this country, living on the streets with severe mental illness. This was something that we would never discuss.
Although he was not very talkative or overly expressive, I always saw how his eyes lit up when I visited. And so once a month, I would make the hour-and-a-half trip from my apartment in Manhattan, north to Westchester County. During each visit, I would march into the nursing home, with a perfectly packaged lunch that I had specially prepared for him, always hopeful. I had grand ideas of eventually making him well enough so that I could bring him into the city for daytrips. In my mind we would take in shows, enjoy lunches together, and have long talks, all the while making up for lost time. How sadly mistaken I was.
Visits during those first few years often left me feeling angrier than the previous visit. I often returned home feeling deflated, growing aware that I would never have the father-daughter relationship that I so yearned for. I was ill-equipped and still too young to fully comprehend the monster that is mental illness.
My anger was further fueled by my approach to the disease. I was adamant in my belief that he was choosing to be “crazy.” I was unyielding and refused to accept the simple fact that my father had a chemical imbalance that distorted his moods and impaired his thoughts. In the year 2000, I had little choice but to surrender to the truth. The limitations imposed on him by his illness were no longer undeniable. I accepted that the parent-child roles would have to be reversed. Within a year, I was the 28-year-old single-mother of a 9-year-old, a 7-year-old and now my father’s court-appointed, legal guardian.
Never overwhelmed by responsibility, I remained resolute in my goal to help him achieve a better quality of life. As his legal guardian, I thought, I would compel him to take his medications and I would single-handedly ward off the invisible forces that by that point had convinced him they had control of his legs and made him, in his delusions, unable to walk.
I would forbid the staff from continuing to provide him with a wheelchair, which would undoubtedly lead to his legs becoming atrophied. I quickly learned that I had no real power. The laws implemented to protect the human rights of the mentally ill, also tied my hands as to what I could and could not do to help him.
The decomposition of his legs was rapid and by 2002, he was indeed paralyzed. My father’s lean, athletic legs withered into a gnarl of what looked like woody-stemmed plant vines. This marked the start of his medical problems. H was not just imprisoned by his mind, now he was also a prisoner of his own body.
“Deinstitutionalization policies continue to make it so that those who are not in a prison cell, (where mentally ill inmates are more susceptible to be victims of physical violence and rape and almost never receive any mental health treatment), are released onto the streets—where the possible dangers are even worse.”
I am often asked if I was able to communicate with my father. The question always makes me smile sadly, as it is a stark reminder of the preconceived ideas that many hold true about the mentally ill as being ranting, rage-fueled lunatics or catatonic schizophrenics. The truth is that every month I brought him books to read; he watched television and was up-to-date on current events. He made requests for different CDs, as listening to music was his favorite pastime.
My father held coherent, albeit short, conversations with me about my personal life, my children, or my work. He had a sharp wit and took joy in bringing a smile to my face. During those visits, he wore a soft smile on his face, not a wrinkle on his soft, brown skin, no evidence of the sadness that was his constant companion.
I attributed those moments of normalcy (his normal), to the fact that he resided in a nursing facility that worked with me to ensure that he received the services he required, and when he cooperated, the medication he needed. And so it was, sometime in early 2003, during one of my visits and as his medical health started to decline, that he addressed me. His words were brief, but poignant, and were said with what I felt was a moment of mental clarity, “I have been institutionalized my entire life,” he began, as tears formed in my eyes, “you have to let me go.”
He knew that as his legal guardian I was the only one who could legally sign a Do Not Resuscitate (“DNR”) order, a form which prohibited doctors from performing life-saving techniques, should he find himself in a medical emergency. He asked me to respect his right not to have doctors take any heroic measures. I signed it. That very spring I would be tested.
My Dad had fallen ill with pneumonia, which required that I be there daily. As the days passed, it was clear that he had to be moved from the nursing home to a hospital. It was not an acute emergency just yet, but he was transported by ambulance, and I accompanied him. Upon arrival, the doctors performed examinations and scheduled a battery of tests. While routine for most, it is not so for a person with mental illness.
Surrounded by unfamiliar faces, his paranoia was exacerbated. Each medical procedure required cajoling, “Please Dad, allow the nurses to insert the intravenous and administer your medicine, I will buy you a Pepsi.” “Dad, it’s an X-ray, I will be standing just outside, I promise not leave.” Most battles were eventually won with the promise of a soft drink or a snack, but sometimes he remained firm and declined treatment. It was exhausting and heartbreaking. This went on for a couple of days, until the third day of his hospitalization.
When I arrived that day, I heard the ragged sound of his lungs before I even entered his room. It was evident that his condition had taken a turn for the worse. My father was in agony, drowning in his own fluid, the struggle to breathe becoming progressively labored. It all went from bad to worse in an instant. The calm, take-charge person that I am was gone. I stood frozen and helpless on the right-side of his bed. The sound of the machines was piercing, or at least that is how I remember it. Doctors and nurses rushed in, their words incomprehensible, the rattle in his chest growing louder.
He affixed his eyes to mine; his stare grew wide-eyed, as he clawed at the I.V. in his arm. Death hovered. I now stood on the precipice of mortality with him. At some point, one of the doctors grabbed both of my arms, as if to shake me back into the present. The urgency in the tone of his question confirmed what I saw before me, “Your father is dying! I need to know now—are you upholding the DNR or should we intubate him?” I was alone, left to make a life-and-death decision, confused, because I wrongly assumed that by signing the DNR the final decision had already been made.
The whirl of noises further clouded my thoughts and the doctor again demanded an answer. All I wanted to do was to make it all stop and in an instant I decided that I was not ready to let him go. I was unprepared, and anyway…I still had not taken him on that day trip into the city. I asked the doctors to intubate him. As the breathing tube was inserted down his trachea, connecting him to a ventilator, I walked outside of his hospital room; too afraid to look, my back remained to the door. He was eventually sedated. The relative calm of the room restored. He was stable and I was left to wait.
You wait a lot in hospitals, you eat hospital food, you become familiar with the nurses and doctors, and you wander the corridors to pass the time, getting glimpses of life and death through gaps in hospital curtains that have not been fully drawn. For several days, I had nothing but time to ponder the magnitude of the decision I had made to reverse the DNR order. I tried to convince myself that I was still too young and immature to have that kind of responsibility thrust upon me. I rummaged my mind for a reason that would justify my decision.
When I reflect back on that day, now with more than a decade of added life experience, I cannot say with certainty that if faced with the same scenario, I would react any differently. I like to believe, however, that I would be more aware of the consequences of not having given him an escape from the mind and body that had so long before deceived him and had become his captors.
My father was finally breathing on his own and I continued doing what I had done the previous week. I waited and continued to brood. My father was particularly silent during that time, especially now that his throat was raw after having the breathing tube removed. We remained in his hospital room, the sound of the television filling the room with some semblance of life. I waited for him to yell at me, to ask me to leave and to disappear from his life. He would have been justified. I carried the weight that I was now one of his captors that held him hostage in a world that had been nothing but unkind to him.
“In all of this, never did he make mention of the pain and suffering, never complained.”
Those pervasive thoughts and the monotony of sitting in a hospital room were occasionally broken with the arrival of nurses, who entered to check his vitals. It was after one of those welcome distractions that he reached for my hand. I stood at his bedside, my shoulders slumped with shame. He looked deeply into my eyes and with a raspy whisper said, “You are a good daughter.” I wept quietly. With those five words, he gave me everything that I had been searching for. He gave me the validation that I so needed. He was my Dad, and I was his little girl, if only for a moment.
My father lived for another eleven years after that event. Psychologically he retreated further inward and glimpses of his personality become more infrequent. Medically, he endured indescribable medical procedures, which served as a reminder of my fateful decision. In all of this, never did he make mention of the pain and suffering, never complained. He suffered in silence. He was protecting me, in the way that any father would protect his daughter. On August 25, 2014, however, he knew that I was ready to let him go, his job as my father had been done.
He departed this world like a gentle breeze, as silently as the 65 years of his existence on this Earth. It would be a closed casket, but I chose to have his body shrouded in white linen. I felt that the pureness of the linen was in keeping with the simplicity of who my father was. My brother and I held an intimate funeral for him near an overlook on the Hudson River. I was told that as a young boy he had enjoyed fishing—a detail of his life that I had not known and made the day even more special for me.
Haunted by the fact that he was once homeless, I had his body cremated and promised him that he would forever remain at home with me—safe, warm and loved. A week after his funeral, I made the trip to retrieve his urn. As I made my way through the city, his urn in hand, I looked into the faces of the passersby and thought about the fragility of life—the individual stories, the struggles. I was melancholic, but also filled with a sense of peace.
As the September sun shone down on me, I could not help but think, “Finally, he made that trip into the city with me.”