I did not attend her funeral. I was at a job interview across town, burnt out from four and a half years of working at the public health hospital that I had come to think of as God’s Junkyard. I heard all about it though. A wake in the hospital chapel in a coffin lined with purple velvet, just like she wanted, with cigarettes and cans of Pepsi tucked into the sides of the coffin-those two essential items of her tragic life. Patients, psychiatrists, medical doctors, nurse practitioners, nurses and medical assistants all stopped by to pay their respects. Benny, the obese Bassett Hound that belonged to her guardian sat by the coffin. Friends placed extinguished cigarette butts amidst the few flower arrangements. A quiet funeral officiated by a kindly Catholic priest, eulogizing her tragic life, pandered to the crowd of patients and professionals, and then off to Potter’s field, where she was laid to rest in the family plot.
Laid to rest, finally. Theresa had a tragic life. When I first met her, she was 41, I was 42. She had been living on a mental health ward for the previous eight years, having failed group home living several times. The mental health units served as transition units for patients, assisting them to transition between inpatient psychiatric units into community living. Theresa had failed community living. And here’s why—when she was a 14 year old kid she was thrown down a flight of stairs by her father, a security cop, and broke her arm. She went to the city hospital for treatment and stayed there a week. No one in the family went to visit her and when it was time for discharge, no one picked her up. So she caught the local bus home to the public housing unit where she lived with her parents, six siblings, and German shepherd dog. She was looking forward to getting home because the dog had just given birth to a litter of puppies. It was a hot, stinking Boston day in July when she unlocked the door to the family apartment. What she found sent her screaming into an abyss of psychiatric and medical care from which only death would release her some her thirty years later. Her entire family had been shot, execution style by her father, who killed himself with pills. Theresa went from a prestigious psychiatric hospital to the state mental hospital, where she endured one iatrogenic mishap after another. At the state mental hospital, she was gang raped and beaten by other patients. Her earrings were ripped from her ears, shredding her earlobes, leaving them hanging like confetti. Somewhere along the way, she was diagnosed with bipolar disorder and started on Lithium salts, the gold standard of treatment, only the high dose she was on blew out her kidneys and she developed renal failure requiring painful, invasive dialysis treatments three times a week. Dialysis accelerated her aging and left her with a host of chronic medical problems.
* * *
She was one of the first patients I cared for shortly after taking on the job as a nurse practitioner on the medical behavioral unit. I had been working as a nurse practitioner for five years, but wanted some intensive hands on experience medical experience. That was my goal. I had no idea of what I was getting myself into with that job.
The public health hospital sat on the same plot of land as the zoo. When the building was erected, the builders read the blueprint backwards, so the rear end of the building faced the street. That tells you something about the karma of the place. The hospital provided care to the indigent, homeless, incarcerated, mentally ill and drug addicted patients living in the state, patients who did not follow the rules, were difficult to treat—known as treatment resistant.
I had once heard a colleague refer to nursing homes as God’s waiting room, an adage describing the nearness to death of the people living in them. During my second year at the public health hospital, I began to think of the place as God’s junkyard, a holding area for society’s castoffs and an adage for the undesirables, the people no one wanted. These folks were rejected by other sub-acute facilities and had nowhere to go to receive care once the acute phase of treatment was completed, so they ultimately came to the public health hospital, a dreary building without air conditioning, beset with ventilation problems and odors, walls tiled an industrial gray, four bedded rooms sparsely furnished and rodents and roaches scurrying about after dark. Yet they often found a home, quietly settled in and revealed their true selves to those of us able to see beyond the conventional measures of social success and into the ravaged souls of our patients.
They came from varied backgrounds and for one reason or another had given up on the conventional lifestyle to arrive at this final place of destitution and abandonment by society. For some it was booze or drugs, for others, mental illness and a smaller number just gave up, leaving families, jobs and homes behind to live in the streets or homeless shelters. When beset with medical illness, they were likely to visit the public health hospital. For Theresa the place was home.
I heard her before I met her. Cries and moans echoed throughout the medical behavioral unit reminiscent of One flew over the Cuckoo’s Nest. She had fallen and broke her hip. The brittle bones of dialysis patients don’t heal well. The orthopedics guys fixed her hip, but it was slow to heal. Her behavior didn’t help- she refused care; cursed and hurled her fists at the nurses. She keened like a wounded dog. Dialysis days were the worst. She hated being hooked up on the dialysis machine and required sedation to tolerate the five or six hours she spent on it. I looked at her and saw a woman being tortured and felt as though I were one of her torturers. One day I was called to the dialysis unit because her blood count was so low. The burgundy colored blood I expected to see flowing through the tubes connected to the dialysis machine was a pale pink. I had never seen such watered down blood. I had no choice but to send her to an acute care hospital for immediate attention. She screamed and cried even louder, adamant about not going, but not going meant dying, so she went. She had a large hematoma or clot, the size of a football, over the broken hip where she had the surgery. Another complication! I felt so incompetent managing this complicated case. The hematoma was drained and she was sent back rather quickly with a large gaping wound. The acute care hospital didn’t want a screaming mental patient on their unit, so she was still pretty sick when she got back. And she was really suffering.
Her one great solace was smoking. The behavioral health counselor I worked with, Joe would bundle her up for the cold and take her outside on a stretcher for her smokes. The plastic surgeon that closed up her enormous wound was adamant that she not smoke during the healing process. He was a well-coiffed, prim guy who wore three hundred dollar ties and silk suits.
“None of my patients smoke.” He told me.
“Well how many patients do you have who live in state hospitals because their fathers murdered their families?” I countered. ‘This is a unique case and requires an individualized approach”—stuff he didn’t want to hear.
We negotiated to allow her three cigarettes a day, and he reported me to my medical director for being “too touchy feely”.
Cigarettes were the only thing that she asked for, plus an occasional Pepsi, and I felt I had to accommodate her one wish. Of course my friend Joe would often sneak her extra cigarettes during the day, but he always leveraged it as a token for good behavior.
Theresa ended up staying on our unit for six months, and I got to know her and her sad story very well. Joe and I both doted on Theresa, spoiling her actually, by giving her little gifts and extra smoke breaks and occasionally taking her off the grounds to a local ice creamery. At the end of six months she went back upstairs, but that wasn’t the last I’d see of her. I got to know Theresa very well over the next four years. And she changed my view of the world.
She was admitted to my unit anytime she had a medical issue. Counselor Joe, a young, short round bald man, whom I lovingly called “Fester” because of his resemblance to the television show Addams Family character, and I set out to treat Theresa like a fellow human being. We were teased by the other staff because of the way we doted on her. Although they teased, they too began to participate in our plan to humanize Theresa and approached her in a much gentler way. I noticed that she owned no underclothing, and her pendulous breasts drooped, further dehumanizing her. When I inquired about getting her some bras, I was referred into a bureaucratic process to obtain funds that would take months. I didn’t have the patience for that so Joe and I bought her some bras with our own money, (size 42 EEE). We argued over where to buy them. I wanted to go an upscale store that specialized in foundation garments, but Joe was set on Bradlees, a low priced chain store.
“It’s where I get my aunts’ bras” he told me, referring to the three spinster aunts with whom he shared a two family house and generally looked after.
We were told by our colleagues in psychiatry that we had crossed boundaries—those ethical lines that separate professionals from their patients, protecting us from getting too involved, or too personal. Professionals who cross these sacred boundaries are viewed with disdain, seen as filling their own needs, rather than their patients'.
Joe and I thought that the boundaries had to be widened. I wondered where you drew that ubiquitous line for a woman who spent 27 years in a health care system that had failed her, giving her medications that destroyed her body, making her fat, and numbing her soul, then hiding her on an obscure unit in a state hospital.
Crossing boundaries was not new behavior for me. As a younger nurse I adhered to the philosophy of boundaries, but with experience had come to believe that boundaries were for sissies-amateurs or providers stifled by fears.
I had worked with a few patients at the hospital across boundaries and had a reputation for being a renegade. One such patient was Mulligan. At 67 he was a handful, a hard-core drinker who lived on the streets for over 20 years. Some guys fall in love with the bottle and give up everything and everyone to be with it and no one can get them to give it up, like an illicit lover. It’s hard to rein these guys in. We want them to follow rules and they aren’t wired that way. But Mulligan had throat cancer and he didn’t want to die on the streets-he needed a place to stay and the public health hospital was his only option. He could not adhere to the treatment options laid off for him and kept disconnecting his intravenous line and going outside, driving the nurses crazy.
One day I asked him: “What’s up with you Mulligan? Why are you driving yourself and everyone else crazy?”
He wanted to sign out against medical advice but he didn’t want to die in the street, he wasn’t afraid to die, just not in the street god dammit. I sang to him-, “M -U double L- I- G- A- N spells Mulligan”
He liked that, and he liked me because I sang it to him. He asked me to be straight with him, so I was.
“Yes Mulligan you are going to die, how and where is up to you. What can I do to help you?”
“Let me have my smokes” he said.
We made a deal. Every hour one of the medical assistants escorted him outdoors for a smoke, and he left the intravenous alone.
“Works for me” he said.
He ended up staying at the public health hospital for the rest of his days, not dying on the street. Patient empowerment is a theory that emboldens patients to make decisions about their own care. I wondered if theorists had trading cigarettes to a dying man of throat cancer in mind when they conceptualized that theory. Working with a treatment resistant population, I had to be creative and devise unconventional motivators for my patients that would empower me to find a common ground with them.
* * *
Joe too was known for his unconventional ways. He was a loving gay man, yet crusty around the edges. When it came to Theresa, we were always on the same page. We shared the goal of providing her the most humanistic care we could. I asked Joe how he had struck up a relationship with Theresa since it was such a difficult thing to accomplish, and he told me that his parents were dead, and he really missed his mother, just like Theresa missed hers, so he know how she felt. It was that simple.
Prior to working at the state hospital, Joe was a butcher. He had no formal psychiatric training, but his instincts, big heart, wit and willingness to take action made him one of the best counselors with whom I have ever worked. Many of us developed close relationships with each other, relying on our colleagues for support. On the medical behavioral unit we worked as a team. There was an attending psychiatrist, a medical doctor and a team of nurses and psychiatric counselors. The psychiatrist was on site full time, but the medical doctor was there a couple of afternoons a week, so the decision making about medical issues fell to nurse practitioners like me. The psychiatrist I worked with was a 6’6” tall Russian immigrant with a heavy accent. He was young, devoted and full of fresh ideas. His long Russian name began with a K that the patients couldn’t pronounce, so they called him Special K. We staff called him The Tall One. He was a rock, a hard -working, hands on guy up on the latest behavioral techniques. We often survived on gallows humor, sharing many bittersweet laughs along the way. Special K saw me as his personal English tutor and would ask me what certain idioms meant. He wanted to talk like an American. I once told him that a new patient had a diagnosis of J.F.N.
“Huh”? He asked, befuddled.
“Look it up” I said.
He came back to me and said he couldn’t find that diagnosis anywhere in the DSM book, a large codification book for all psychiatric diagnosis.
“Well, it means just fucking nuts.”
Another day I saw him running from his office with a broom. He had seen a mouse and was chasing it out.
“It is making me J.F.N.” He shouted in his heavily accented English.
That night he left out a piece of chocolate cake for the mouse because he wanted to be sure he really saw what he thought he saw. There were some real characters working in that place and it made it bearable.
* * *
Gradually, treating Theresa with dignity had a profound effect on her. We witnessed changes in her behavior. She would no longer scream and cry as the only way to communicate, but instead addressed each of us by name. She listened while maintaining eye contact. I felt as though I were witnessing the evolution of her soul. It was like watching the development of an art form, everyday a new color or texture would emerge creating more density and substance-that was Theresa, no longer screaming and crying when she came to our unit, instead gently knocking on my office door, asking:
“Are you busy?”
I always said no and invited her in to my office. We would sit and chat like girls, she always asking after my dogs by name, I always showing her their latest photo. At her request, I gave her a photograph of my dogs. She cherished it and stored it with her valuables under her bed in the room she shared with three other patients on the locked mental health unit. I had a sister who worked in cosmetics and gave me samples of make -up and fragrances that I gave to Theresa. She basked in those girlie moments, catching up on the feminine adolescence of which she had been robbed. Theresa’s body was wearing out, but I noticed a spiritual metamorphosis—she seemed happy at times. Joe and I continued to be admonished by staff, especially the psychiatric staff, for crossing boundaries and behaving unprofessionally. But we laughed at the irony of it all—after all, weren’t they the ones to misdiagnose her and give her Lithium?
On Memorial Day, Joe, Theresa, and I visited her family grave. It was difficult to find because it was unmarked, the family having been buried in Potter’s field, the graveyard for the poorest citizens. This was the first time Theresa would visit the gravesite of her family- 30 years after the deaths. We watched as she gingerly limped toward a cross that Joe had made and placed on the grave. She had flowers in one hand, a cigarette in the other, to fortify her against the horrible images that must have appeared in her mind. I realized just how significant this was—her first visit to the cemetery, her first physical confrontation with the tragedy of the past that would forever spin her out of reality. She lay the flowers down at the grave as if it were an act of forgiveness and a release of some of the emotional burden she had carried throughout her life. Yes, we crossed a boundary by taking her to the gravesite, but by doing so, we helped her cross a boundary that kept her locked into a never-ending nightmare ... yes, we crossed a boundary, but we brought about a result that no one in our profession would find unacceptable … Closure.
Joe died unexpectedly. He didn’t show up for work one day and was found dead in his home by his supervisor. His big heart gave out on him at the age of 42. It was very difficult for me to handle, but this time it was Theresa that provided me with solace. Again, Theresa and I went to the cemetery, this time to visit Joe’s grave. Theresa bought flowers and placed them on his grave, bolstering me, as I tried to find my own closure. Afterwards, we went out for pancakes, and with the car windows down and the radio cranked up we sang the songs of our generation while Theresa blew smoke out the windows.
I realized that day that I was no longer just a nurse practitioner and Theresa no longer just a patient. She too had crossed a boundary, and in doing so, provided me a great deal of comfort. She sensed the shift, and in trying to articulate it, said,
"You’re like a mother to me."
“Theresa, we’re the same age.”
“Ok, a sister.”
Thinking of her dead sisters, I said, “No Theresa, not a sister, a girlfriend.”
"Yeah, that's it," she said, "girlfriends."
Theresa survived many additional medical traumas over the next two years, but her dialysis fistula, the place where a vein and artery come together allowing the cleansing of the blood, kept getting infected and the doctors were unable to create a new fistula because of the scarring in her veins. Scarring that had come from years of medical treatment. She had to make a decision, whether to go on with the pain and invasive treatment, or stop all treatment. She and her guardian, a sensible woman and former nurse, talked over the options. Should she continue to try for a fistula or let go of life? Eventually Theresa decided that if fate deprived her of dignity during her life, she would not let it deprive her of dignity in her death. She made plans. She held a farewell party with her hospital family at her favorite ice creamery; the one Joe and I had introduced her to. She wanted a church funeral and a casket with a purple velvet lining.
Her farewell party was well attended. Many of the doctors and nurses who worked at the hospital were opposed to Theresa’s wish to stop all treatment, and rumblings were abound to take legal action and “stop” the whole process, mandating dialysis, but in the end she was allowed to cease all treatments. She was radiant at her party, greeting each guest graciously, appearing bright, animated, and free. I realized it was probably the only party she ever had in her honor.
Her last phone message to me was:
"Peggy, it's your girlfriend Theresa, saying goodbye and thank you."
Seven days later, Theresa died. I realized that the boundaries I crossed were from medical care to loving care. In spite of her tragic beginning, Theresa had a peaceful ending. She was laid to rest one day in June.
I left that job shortly after Theresa died. Most of the patients I had cared for during the four years had died. Special K got burned out and left and the burden of working there began to wear me down. Taking care of society’s cast offs is hard work, requiring a tenacious spirit and a willingness to battle daily with the larger system that has rejected its most vulnerable citizens. I think about the place and the patients often, always as God’s junkyard, knowing that as with any junkyard, some of the world’s greatest treasures can be found there.
Margaret Ackerman has had essays published in the Boston Globe, Clinician Advisor and several other publications.
ISSUE:
S P R I N G
2014
ISSUE:
S P R I N G
2014
SUPPORT THE ARTS
DONATE TODAY
GET A FREE T-SHIRT!
By accessing this site, you accept these Terms and Conditions.
Copyright © 2010-2014 TheWritingDisorder.com ™ — All rights reserved