Flying trays in room 846.
Portrait of a challenging patient and those who care for him.
Eric Johnson, 53, has kidney failure. After three years on dialysis, “he was rejected by every dialysis center in the city due to non-adherence and disposition,” said Tony Reed, the associate chief medical officer at Temple University Hospital. Last Christmas Eve, Mr. Johnson called an ambulance to take him the six blocks from his home, a rented room at 8th and Erie, to Temple Hospital. He needed dialysis or he would die.
After 36 days, Mr. Johnson was still at Temple. He didn’t need a hospital, and other than dialysis he was refusing all medicine and treatment, from insulin to physical therapy. But doctors wouldn’t discharge him without knowing he had a place to go for dialysis. They felt that would be unethical and negligent.
So there he lay in room 846, week after week. Both patient and staff grew frazzled, tensions rising. Several times in frustration, Mr. Johnson flung his tray of food across the floor. One time he even pulled the tubes right out of his arm during a dialysis treatment at the hospital. “It was like Freddy Krueger,” Mr. Johnson admitted, referring to a character in a horror movie. “Blood everywhere.”
There were no get-well cards on the walls of Mr. Johnson’s room. No flowers on his windowsill, just leftover trays of cheeseburgers and salads he did not eat. He had tired of hospital food, and being in renal failure, his diet was restricted.
“I’m still here as you see,” Mr. Johnson said one late January afternoon. “How do you think I’m surviving 24 hours a day on the 8th floor of this hospital? I can’t get no fresh air. There’s not a window that opens. I can’t leave the 8th floor. I can’t go to a vending machine. I can’t go to the gift shop. When was the last time you think I got a breath of fresh air? I’m going to grow old in this hospital.”
• • •
Every hospital has challenging patients. Eric Johnson puts an enormous strain on the people who care for him. What happens to his humanity, and to theirs, when frustration mounts and food trays go flying? I wanted to explore this question. He agreed to let me follow him.
Mr. Johnson had six admissions to Temple in 2017 for a total of 88 days — the last on Dec. 24.
Each time he would come through the emergency room for dialysis, often so sick from waiting too long. He’d remain at Temple getting dialysis three times a week as an inpatient, until, frankly, he couldn’t’ stand being in the hospital anymore, and would leave AMA — against medical advice.
He’d go home for a few days or even weeks. Doctors were amazed his body could tolerate the build-up of toxins from his failed kidneys. Then he’d go to another hospital in the city or come back to Temple for dialysis _ wherever the ambulance happened to take him _ and the cycle would continue. His visit Christmas Eve stretched into February of 2018.
At that point, he no longer could walk, so he literally couldn’t just leave on his own against medical advice. He had no money to pay for a private transport. He had no wheelchair to just leave on his own. Nobody came to get him.
Temple doctors and nurses knew him as a non-compliant patient, whose actions could be so disturbing and self-destructive that Dr. Dariush Shahsavari, a hospitalist who tried to understand and help him, ordered a psychiatric evaluation. “He has a very good understanding,” Dr. Shahsavari said. “Full mental capacity. They characterized him to have a difficult personality.”
What doctors saw as challenging behavior, even threatening, Mr. Johnson saw as an expression of frustration and a determination to call the shots in his own life, even as he grew increasingly dependent on a health system which required compliance and in his eyes submission. “Now I’m a hostage?” he said one day. “I didn’t ask to come on a floor that I can’t leave.”
From one point of view, Temple’s busy hospitalists had gone above and beyond to help him. For example, Dr. Shahsavari reached out personally to two dialysis center directors asking them to reconsider. “I begged them,” Dr. Shahsavari said. “They said no.”
Yet Mr. Johnson did not accept that Temple had tried its hardest to find him a spot with a dialysis center. “Temple is well known throughout the world,” he said. “They have power.” He believed the hospital kept him because it made money on him.
• • •
Over the winter, Mr. Johnson was sick and getting sicker. He was nearly blind from his diabetes. At one point his legs were so bloated from water retention his skin literally split, and he couldn’t walk any longer. Dr. Shahsavari said perhaps he could still walk, if only he would try, and work with physical therapy. He suffered from chronic heart failure, and high blood pressure, and doctors had found a new complication: his liver was failing.
But so far he could still get by on his own. When not in the hospital, Mr. Johnson lived in a row house near the hospital, renting a second floor room with bright green walls, a fly strip hanging over his bed, a portable toilet beside it, a refrigerator and microwave within reach. An aide came daily to help him dress and bathe, to buy him supplies, like canned Hormel chili and white bread and peanut butter and jelly so he could make himself sandwiches, or to pay his tab at the corner store, where he often ordered chicken wings and soda. At home, the TV was close enough to Mr. Johnson’s bed that he could see a blurry version of what was on the screen or usually just listen.
Mr. Johnson said he’d always been a contrarian, a man to challenge authority. If his father told him to be in early, he’d stay out late, to see what would happen.
He said the reason for his contrary nature was that he grew up with two sides of his family tugging at him. His father’s side was smart and hard working. His mother was a hard worker as well. But her side of the family was “filled with hustlers, pimps and street people,” and both sides pulled at him. “It’s like a wrestling match,” he said.
In school, “I was very disruptive in class,” he said, and shared a story. He was assigned a report on Abraham Lincoln. His father told him Lincoln freed the slaves. His mother’s brother, his uncle, told him Lincoln owned slaves and “didn’t free anybody because we are all born free and no white man can set you free.” He preferred this version and so he got up and called Lincoln “a cracker and a slave owner.” School didn’t work out so well.
Mr. Johnson grew up in West Philadelphia with two working parents and a secure and stable home. “I always got a new bicycle for Christmas,” he said. “Always.” His mother was a billing clerk at a local hospital. His father worked lifting heavy hoses and gassing up private planes at the airport. When his father hurt his back, he became a driving instructor. Mr. Johnson felt his parents had little to show for a life of hard work. His uncle — his mother’s brother — had life much better and easier as a drug dealer, Mr. Johnson said, with new cars, nice clothes, and never punching a clock. Mr. Johnson said early on he chose his uncle’s path.
“It may not have been the right way but it was the easy way,” he said. “I did my drug dealing, I hustled, I did my scams,” he said.
He expresses no regret now and makes no apologies for his life choices. “I didn’t work,” he said. “Sometimes I didn’t eat. I’m fine with that. If I fall, I fall — that’s not because you pushed me.” He also added that the government takes all your money anyway, and by not working, “I didn’t give them the opportunity to %$&# me.”
• • •
To understand his perspective today regarding his health, Mr. Johnson said, one must understand his past. He was shot in the 1980s on the very block where he now lives. One day in the hospital I asked him about a scar on his elbow.
“I got shot,” he said.
How many times have you been shot?” I asked.
“Oh shit,” he replied. Oh shit as in he really had to think about it. “Five,” he concluded. “Twice in the arm, once in the stomach, leg and top of my head.”
“I survived the 80s, with the crack, the shootings, the killings,” he said. He went to prison “for all kind of different things, like cashing checks, drug dealing, carrying weapons, getting into altercations on the street, being a young black man in the street.”
“I survived all that,” he said.
He’d lived longer than he expected, endured more than doctors could imagine, he said, and he was determined to live what was left of his life on his terms, his way, just as he’d always done.
He also believes he is not responsible for his poor health. His grandmother, he said, had what was known as “the sugar” and he believed that his getting diabetes was hereditary and inevitable, along with all the chronic diseases that followed. He doesn’t accept that his lifestyle choices and diet played a significant role.
“I got dealt a bad hand,” he said, “and I gotta play it out.”
And refusing all medications in the hospital made sense to him. He felt his grandmother had grown dependent on pills and he refused to live that way.
“All the stuff I got wrong with me, there’s no cure,” he explained. “I go to bed with chronic heart failure and I wake up with it. Eating right, taking insulin, all that’s doing is teaching me how to live with that disease. I’m not a slave to medicine. I am not trying to rush death but I accept it. I don’t get a prize that I died in a hospital bed.”
The only treatment he wanted was dialysis, because he would die in weeks without it. But some times in the hospital he even refused that. He’d get so annoyed with the rules. If staff wouldn’t take him to the ATM machine in the hospital basement, then he wasn’t going to dialysis. It was the only leverage he had. He would also get frustrated with delays, or lack of responses in what he felt was a timely manner. He pulled his tubes out during dialysis, he explained, after he felt nurses in that unit didn’t respond to his request for Benadryl to stop his itching. Then, he said, he told them he’d like to stop his treatment and come back on a day when they would be more responsive. When he felt ignored again, he knew what would get their attention.
Doctors say pulling out your tubes during treatment is incredibly dangerous and reckless, and his action deeply upset the staff.
As Mr. Johnson saw it, the hospital and the healthcare system never apologized for making him wait, for imposing rules on him. And if he wanted to act on his timetable, or by his rules, he was considered difficult and disruptive.
He saw himself as self-reliant. He received Social Security disability of $700 a month, he said. He paid $400 to rent his room. He used the remaining $300 a month to pay for his food, his phone. In the hospital, while his money lasted, he ordered take out, cheesesteaks and sodas, and had them delivered. His government-funded healthcare was with Health Partners, a Medicaid provider. As he sees it, he is a paying customer. He has insurance. He was also a combination of poor enough and sick enough to qualify for an aide to come daily and help him at home.
His parents are still alive, still married, still living in the same house where he grew up, he said. But they are invalids now, he said, and too religious for his liking.
He has several children, both biological and others that came with a relationship. He was the disciplinarian when his children were young, he said, but that period had passed. He stayed with his “baby mama,” he said, long after “the love was gone.” He said he stayed out of obligation and responsibility, to be the disciplinarian.
“I have a bunch of kids,” he said. “I put my time in. I’m now paroled.”
He asked that nobody in his family be contacted for this story, and I reluctantly agreed. He said he chose to live alone. “It’s not that they’re not supportive,” he said of his family. “It’s that I don’t allow them to be. I’m the type of individual that I do me.”
• • •
Mr. Johnson, because of his difficult personality and his frequency, became well-known at Temple, especially among hospitalists, nephrologists, nurses, and the administration.
“I talked to him for a very long time when I first met him,” said Dr. Ji Hoon Baang, a hospitalist who cared for Mr. Johnson many times. “He has a deep mistrust of the system. He thinks they don’t care about him. I said to him you are giving people good reason to not care about you because you don’t follow up. It’s a vicious cycle.”
After one of Mr. Johnson’s earlier admissions, Dr. Baang said, “I told him to give it one last shot. I gave him my phone number to call me if he had any issues. And one time, shortly after a discharge, he did call me and he said nobody is picking him up for his dialysis sessions. I call the transport people, and they had a different address compared to where he was waiting. I think it worked out, but he said. `They lied to me. They told me this place and not that place.’ His impression was he did everything right, and the transportation company was blaming him for not following up. That experience confirmed his mistrust. I don’t know the whole story. It’s probably a combination of things.”
“There was a period when he trusted me,” Dr. Baang added. “I did warm up his pancakes, and that really changed his perspective on me. He was asking for his pancakes to be warmed and nobody would do it. And he liked it. He called me whenever he was admitted.”
Hospitalists at Temple care for patients in hospital like Mr. Johnson. But they work a shift schedule _ 12-hour days, one or two weeks on, one or two weeks off. They might work nights, or at the Episcopal campus. Often Mr. Johnson would come or call when Dr. Baang was off.
“If somebody is willing to take the time, trust could be rebuilt,” said Dr. Baang. “But our system is not built to do that. Nobody is going to say here’s my phone number call any time. Not when we have so many things to do. And he’s difficult. Even after one or two hours, I was so worn out. I couldn’t talk to him for that long anymore.”
Dr. Baang came to Temple in 2005. In his first few years, he said, he would get annoyed with difficult and demanding patients and their bad behavior. “I fell into the trap of resentment,” he said. “Sometimes I would blame them for their problems.” After they died, and there was silence, he came to realize they were just demanding and difficult because they were sick and suffering, and needed help. Over time, his empathy grew as did his understanding.
Dr. Baang left Temple this summer for a position at the University of Michigan Medical Center, where he will concentrate on patients with infectious diseases.
• • •
From his hospital bed one day in January, Mr. Johnson called Steve Freeman, who works around the corner from the hospital as a barber at Hair Forever on Germantown Avenue. Freeman has made house calls many times when Mr. Johnson couldn’t get to the salon, Freeman had never made one to the hospital. He said he left two people waiting to run over, and shaved Mr. Johnson’s head and his beard as he sat up in his hospital bed. Mr. Johnson paid him $25.
It was a glorious moment for Mr. Johnson. Right there in his hospital room, he wasn’t a patient, but a man getting a shave and a haircut.
“I like looking presentable,” Mr. Johnson said. “My life doesn’t stop just because I’m in here.”
• • •
Dr. Shahsavari, like Dr. Baang, has cared for Mr. Johnson at least three separate times in one or two week stretches.
“Every time he comes to the hospital,” Dr. Shahsavari said, “I beg him to let physical therapists work with him, walk with him. I sit down to talk with him every time he comes. And these are his complaints. `I have my independent life at home. I get my KFC chicken, my burgers, my stuff and when I come here I’m limited by what you tell me to eat.’ It becomes frustrating for him. He’s just in a room all day.”
An illustration: One day in late January, a patient care assistant came in to Mr. Johnson’s room with a dinner menu. Mr. Johnson wanted chicken tenders for dinner with honey mustard sauce, but honey mustard was not permitted on his restricted diet. “Bring me whatever you want,” he told the patient care assistant, defeat in his voice, “I probably won’t eat it anyway.”
“We do the best we can,” Dr. Shahsavari said. “The complaint I hear from him is that they ignore him, they don’t pay attention to him. He wants to go to vending machine, to the ATM. I actually personally once — to get him to agree to dialysis — wheeled him downstairs to the ATM machine. For him everything was a bargain.”
“He’s just given up hope,” Dr. Shahsavari said. “He thinks he’s never going to get back to where he was. He thinks we are just playing games with him. No dialysis center is going to take him anyway, and he’s tired of staying in a hospital, which he sees as a prison.”
“I think there is a lot of frustration there, and a sense that he’s not being understood and taken seriously,” Dr. Shahsavari added. “He had altercations with the nurses, with the staff. He had a Swiss knife taken away from him. He said to the nurses his friends have guns, and he was restricted from having visitors and that’s the time his daughter was trying to see him. That aggravated him even further.”
“His blood pressure is through the roof,” Dr. Shahsavari said, “his electrolytes are all over the place on the days he allows me to check his labs or vital signs. And I suffer because I know that these things are a ticking time bomb. One of those times he misses dialysis or refuses to take his medication, he might end up dead because of heart attack, because of stroke, or because there’s so much volume (fluid) in his body he might suffocate. But I’m limited by his free will, by him making those decisions. That’s the most difficult position for every physician.”
• • •
Regarding the knife, Mr. Johnson said he kept a pocket knife to clean his nails. “Women don’t let you touch them intimately if you got a lot of gunk under your fingernails,” he explained. “So I’m constantly cleaning my nails.”
“I had a boy scout knife,” he said. “Not one of those Rambo ones.” It was by his bed in plain view when a nurse took it, he said. When she refused to give it back, he said, “I take my food tray and slung it across the room, all over the hospital floor. Now they got scared.”
Security came and searched his room for weapons, he said. He said he told the nurses, “You call that a knife? I’ll have a homeboy come up and show you a whole collection of knives.”
He said he never mentioned guns. He said he wasn’t threatening anyone. He was just expressing frustration.
As for throwing his tray of food, he added, “I’ve done that quite a few times.” He is legally blind, stuck in bed. He says this is how he expresses his frustration.
He does not accept that hospital staff can’t wheel him to the ATM, or let him keep his knife to clean his nails, or give him whatever he wants to eat, or take him out for fresh air. If staff isn’t willing to do these things for him, he says, “then they’re in the wrong business.” He sees the hospital as no different from a Burger King, and if he asks for extra pickles, metaphorically speaking, he should get them.
• • •
The nurses on the eighth floor of course dealt with Mr. Johnson the most. The charge nurse on 8 East, Deborah Joshua, quickly decided to rotate nurses. Nobody cared for Mr. Johnson more than two days in a row, she said, “to preserve the sanity of the staff.” He was just too challenging. Best for him and for all the nurses to give everybody a turn.
Most of the nurses said they figured out bottom line he was lonely, and many noted that he could talk and talk. As challenging as it might be to sit and listen, with so many tasks to perform and other patients to see, that was probably what he needed most, and what many said they tried to do. After a while, some of the nurses would even request caring for him. “He wasn’t a lot of work,” said one nurse, “and if you were respectful to him, he’d be respectful to you.”
Still, he’d constantly want things they couldn’t provide, and he’d get frustrated, loud, and angry. “The food was never right,” said Krystal Burwell, one of his nurses. “If he didn’t like you he threw the whole tray.” The nurses would give him as much latitude as they could, they said, but rules are rules. He couldn’t leave the 8th floor. His diet was restricted. And there were trauma patients on that floor, people who had been shot and stabbed. He couldn’t have a knife of any type.
Joshua, the nurse manager, felt her staff had gone above and beyond, and done a terrific job caring for a patient under challenging circumstances. Some of the nurses, in interviews, said they wondered whether Mr. Johnson was waiting to die, ready to go. They had seen it before.
On another floor, where things hadn’t gone so well, one nurse suggested that Mr. Johnson used his helplessness and dependency as a form of control and manipulation. Nurses needed to come when he called and he knew it.
• • •
Mr. Johnson refused to accept responsibility for missing dialysis at treatment centers. He blamed the transport people. They didn’t show. They’d be late. They would claim it was his fault.
One time the transport company, he said, insisted it rang his doorbell. “I don’t have a doorbell,” he said. “If they don’t’ come for me, it’s starting to look like I don’t want to go, which isn’t the case.”
He believed the dialysis centers were conspiring against him. He’d only been treated at a handful of centers, how could all of them reject him?
“Nobody wants to take a chance on me,” he said. “Those seats in dialysis are like gold.”
Dr. Reed, the associate chief medical officer at Temple, said doctors, social workers and representatives from the insurer, Health Partners, had all tried repeatedly to get him a placement, but every dialysis center they had tried had refused.
Some of the nephrologists — kidney specialists — at Temple also serve as medical directors of the out-patient dialysis centers near the hospital. Because they work at Temple, they are especially sensitive to the barriers to health care in North Philadelphia, and try hard to accommodate Temple patients, said Dr. Crystal A. Gadegbeku, chief of Temple’s nephrology section.
But even these doctors didn’t accept him into their centers.
Dr. Avrum Gillespie, another Temple nephrologist, who previously was in charge of inpatient dialysis at Temple, and has served as a medical director at an outpatient center, said outpatient centers can’t refuse a patient because he is difficult, only if he is violent or threatening. But then there is the reality, he said.
“Imagine you’re a school teacher, and you have a student that is always disruptive,” Dr. Gillespie said. “You have 30 students who want to learn, or who at least are in their chairs, and one that is disruptive full time, cursing you out. What would you do with this student?”
Jean Lee, a Temple nephrologist, said Mr. Johnson was widely known for being difficult, but he could also be quite charming and engaging, she said. She told a story about how during one of his recent hospitalizations, students in the physician assistant program needed to talk with a dialysis patient. Mr. Johnson was in the hospital getting dialysis at the time and agreed to speak with the students.
“He gave this wonderful talk,” Dr. Lee said, “about how he started on dialysis, how he got his fistula, how the machine works. He had them in there for an hour. And the students all thanked him and shook his hand and wished him well.
“He was so happy and I thanked him,” Dr. Lee said. “He asked me if he could do it again.”
• • •
Dr. Rachel Rubin, the section chief supervising the hospitalist program, knows and has great sympathy for Eric Johnson. He would be a difficult patient, she said, regardless of his social or economic circumstances.
She says our healthcare system just isn’t set up to permit such flexibility, to allow a person to get dialysis only when he feels like it. She also stressed vehemently that he does not reflect or represent this community of North Philadelphia, the poorest in the city. The majority of patients treated at Temple, she said, have loving family members, are law abiding, and do not exhibit disruptive behavior.
• • •
For Mr. Johnson’s six admissions to Temple in 2017, in addition to two outpatient procedures, the cost to Temple — not what the hospital charged, but what it calculated as its actual cost of care — was $325,000, said Dr. Reed. Insurance reimbursed about $100,000, he said.
For much of the time Mr. Johnson was at Temple last winter, in the peak of flu season, the hospital daily turned away critically ill patients because all 520 beds were full. “Twice yesterday,” Dr. Reed said at one point.
• • •
At the end of January, doctors proposed a solution.
“We had the frank conversation,” Dr. Reed said, “about the challenges in getting him into a regular dialysis center and that we’ve run dry of choices. He was asked what he wanted to do and he said he wanted to leave. We talked through the risks and the options he will always have available to him, and he accepted the risk.”
He could leave the hospital, Reed said he explained, go home, and return to the emergency room regularly to receive his dialysis. He would be admitted to the hospital each time. Temple has an inpatient dialysis center, where hospitalized patients who need dialysis can get it. But it is not licensed for outpatient care. Coming through the emergency department is inefficient and expensive.
“In the end, physician and patient came together to develop the best possible plan for the patient based on the available options,” Dr. Reed said. “Unfortunately, it’s the least undesirable option rather than the best option.”
Mr. Johnson said he heard something different from doctors. He felt the hospital was giving him something special, that the hospital was making an exception to its policy and allowing him to come three times a week through the emergency room and receive dialysis as an outpatient. What he heard is that he could get dialysis and go home the same day.
Yet he was still suspicious.
“It’s a blessing,” he said after he heard the news. “But I got to question that. Just because that happened doesn’t mean that I’m supposed to look at the world like it’s rosy now. Joy, joy, happy, happy. If it was just that easy to provide me with that, then why did it take 30 days to do it?”
After dialysis on Friday Feb 2, he did leave. Nurse Krystal Burwell remembers the discharge as “a fiasco.” He wanted her to promise him “Temple was going to make this his personal dialysis unit. And I couldn’t do that….I tried to tell him `Mr. Johnson that’s not how it’s going to go.’ ”
And it wasn’t.
Several days later, he did come back. He spent hours in the busy emergency room, was admitted to the hospital, and didn’t get dialysis until the next day.
“Not well at all,” he said, describing the process. “Same nonsense.”
Doctors in the emergency department called Dr. Shahsavari one time in February to help. “He was yelling and complaining,” Dr. Shahsavari said. “He thought there was a contract for him to come back to the ED and get dialysis and go. He felt the ED wasn’t honoring it. It’s not like you can get dialysis and sneak out.
“The ED doesn’t feel comfortable doing this,” Dr. Shahsavari added. “It’s a lot of responsibility. Even when we discharge him from the floor the next day, we take a huge responsibility. Even though risk management, the doctors, the patient, everyone’s on board. I don’t know if he’s going to come back. He’s shown patterns of behavior before that’s not reliable. Every time I send him out I run the risk of him not coming back and dropping dead in his bed. I don’t blame ED doctors for not feeling comfortable sending him home.”
• • •
February turned to March, then April and May. Mr. Johnson would get dialysis at Temple or other hospitals, wherever the ambulance would take him.
On May 2, late in the afternoon, Mr. Johnson was downstairs on his front porch, and came inside to use the portable commode on the first floor. He fell.
He called 911 for help to get back upstairs to his room, his bed.
The ambulance crew urged him to go to the hospital, to get dialysis. He hadn’t been in a week.
They helped him up and to the stairs. Then one medic went in front of Mr. Johnson, holding his arms, and the other stood in back, lifting him by a fist full of his blue jeans. Mr. Johnson moaned with every step.
They stopped after three. He was exhausted.
“Your best bet is to go to the hospital,” said one medic. “I can’t stress that enough. I know it’s not what you want.”
They kept climbing. No words. Just moans. Fourteen in all. It was like scaling Everest.
Mr. Johnson sat on the bed. “Thank you,” he uttered, his words about as faint and broken as speech can be.
He sat in the fading sunlight. He was so clearly tired of illness, of suffering, of loss of control, and yet so grateful to be in his own bed.
He clicked on his television, and ordered chicken wings and a two-liter Pepsi to be delivered from the corner store. Drinking all that sugary soda in his condition was like ingesting poison. But in his mind, there were worse fates.
• • •
In June, when his aide was away, on pilgrimage to Mecca, the hospital wouldn’t discharge Mr. Johnson without someone at home to help him. Mr. Johnson was desperate to get out, so he went to his parents in West Philadelphia. After a day there, when he called 911 for dialysis, the ambulance took him to Lankenau Hospital, outside the city, in a leafy suburb.
After 11 days at Lankenau, a social worker called in a favor and got him a dialysis unit.
Temple doctors say the fact that he was coming from a suburban hospital must have made a difference.
No matter. All were thrilled.
But it didn’t last.
Mr. Johnson’s health got worse. In addition to dialysis, because of a failing liver, he needed fluid drained from his belly every few weeks at first, then every two weeks. He was in the hospital so often, absent from the dialysis center so much, and, again, there were transport issues. He wanted to go when he wanted to go, a community outreach worker said.
By autumn, he lost his spot in the new center.
• • •
One day in October, I visited Mr. Johnson at Temple.
He was in his bed, covered in blankets, head literally to toe. Every time I saw him it seemed there was less of him and more blankets. It occurred to me that Mr. Johnson in the hospital goes into a sort of hibernation. It’s his way of coping. And he is also so sick.
Unlike busy doctors and nurses, I have plenty of time to talk and listen. This particular morning, as usual with me, he gradually woke up, and went from a few grunts and mumbles to an unstoppable stream of stories.
He started by saying he was glad Bill Cosby went to prison. Cosby had screwed all the other cast members on The Cosby Show, according to Mr. Johnson (I have no idea if this is true), preventing them from taking roles in movies and other shows he didn’t think appropriate, and now Cosby wasn’t on top anymore and he was getting his payback. “I believe in karma,” Mr. Johnson said.
Mr. Johnson tied the Cosby story and his belief in karma back to his own. His “baby mama” got pregnant by another man. This hurt Mr. Johnson deeply, humiliated him, and he wanted to strike back. How could he hurt this woman as much as she hurt him? He is a contrarian, and in his contrary way he thought the way to hurt this woman was to love this child, to show her how wrong she’d been, to make her feel bad. So he set out to be a good father to this child that wasn’t his.
The daughter is 15 now. Closer to him than anyone in the world, he said, “the reason I’m still alive.” He doesn’t see her much. But she had come by the other day, he said, and he’d given her $80 to go to a haunted house for Halloween, and have some money to spread around for her friends and buy something for herself.
“She’s my blessing,” he said. “Maybe that’s why I’m still here.”
As I publish this story, Mr. Johnson has yet another dialysis unit. He is hopeful that things work out better this time.
• • •
Michael Vitez, winner of the 1997 Pulitzer Prize for Explanatory Journalism at The Philadelphia Inquirer, is the director of narrative medicine at the Lewis Katz School of Medicine at Temple University. Michael.firstname.lastname@example.org