May 2017
“I don’t call it sickle. I call it scythe cell because it mows my entire body, all forty acres. It’s fucking holistic is what it is. Just ask my husband. Or my mother if you can find her.” Tisha paused, squinted and grimaced, took several deep breaths, then continued. “No one wants to be around me after a while,” she labored. “Everyone’s exhausted. For them it’s a rotten lifestyle. For me it’s just hell.”
This was Tisha’s third admission this year and it was only May. She had sickle cell disease, an inherited blood disorder, causing her red blood cells to deform into crescent shapes and get stuck in small blood vessels, resulting in repeated crises of pain and other serious complications. She had no role in its presence and little control over its crises and the suffering it brought. The conflict came over how to manage the pain and over who should manage it. She was three days in and if the usual pattern held, she’d be here another week. Her doctor was already signaling she could go home, but was hesitant to be direct, knowing the explosion that would result. Tisha was a practiced negotiator, able to speak sagely of her pain and advocate for herself, but she employed intimidation when needed.
It is said that when negotiating to end the Vietnam War, Henry Kissinger’s go-to move was to act like a madman with the Vietnamese: that more than once the secretary of state threw objects, stomped the floor and threatened to let loose a nuclear Armageddon through a storm of spittle. It always got results. That was Tisha. She screamed that her pain was not controlled because the hospital was racist, that we would have to drag her out and she would die on our lawn. The doctors backed off, just like Le Duc Tho.
Tisha’s given name was Nephertiti. “My mom thought she was giving birth to an African queen. Instead, she got a freak,” she once said. That’s not how I experienced her mother Delores, who was in the foreign service and lived in Germany. In our phone conversations she was ardent in her advocacy; sharp and undiplomatic. She had little tolerance for me and always wanted to go to the top, either to the attending doctor or the president of the hospital. I told her that as a patient advocate I could often be more effective than an administrator because I had established relationships with the providers who listened to and trusted me.
“What?” she said incredulously. “What kind of fucked up organization is that? Who lets the worker bees run the show?” It’s not rare for me to hear this kind of put down and it’s a dead giveaway for the insecure and those who feel powerless. Delores lived a continent away and had probably gone through this a dozen times before. I said I would let the attending know that she’d like a conversation. I also said that Tisha was doing a good job of advocating for herself. She ignored that and said, “My baby is not leaving that hospital until her pain is under control. You do this to her every time. Someone in that huge health system of yours must understand sickle cell. That’s who I want to speak to, not some ingratiating, condescending peon.”
Delores was right about one thing. We discharge people in pain all the time. The doctors have some say, but hospital utilization managers, healthcare insurers, Medicare authorities, legal professionals, compensation specialists, and Chief Financial Officers all indirectly weigh in on how much pain is too much and whose pain is worthy of hospitalization. This is done through standardization: insurer coverage policies, best practice standards, length of stay considerations, utilization review, Medicare regulation. There is no one to point a finger at, no one who has to go to bed feeling guilty. Tisha’s mother didn’t know that even the hospital president is a peon in this game. “That’s how the system works,” I once heard a utilization manager say. That’s how conspiracies work too, I thought.
Delores didn’t care for a doctor’s professional judgement. “Pain is not objective,” she spit at me, “Tisha is the only authority on hers. The rest of you are amateurs. You all need to listen to the expert.”
In addition to her admissions, Tisha had visited the Emergency Department a half dozen times over the last year and been discharged quickly with instructions to go to the sickle cell crisis clinic. Tisha, like other patients with sickle, knew this was a circular game. The crisis clinic only had six infusion beds and appointments were typically three or four days out. The crisis clinic told patients to go to the Emergency room. Tisha knew the game and often refused to leave. Sometimes a doctor would cave, but she had also been escorted out in a wheelchair by security.
I’ve heard that love can reduce pain, and even holding hands or touching a romantic partner can mitigate it. Whenever I visited Tisha when Tony was present she was animated and talkative. She made no effort to hide her flirtations with him. She rubbed his butt, pulled him down to the bed with his belt, laid her head in his lap when he sat. Somehow they overcame all the anti-aphrodisiacal elements of a hospital to conjure romance. But what others criticized as exhibitionism I came to see as pain management.
Tony was shyer than Tisha and seemed uncomfortable with this behavior in front of me, but not so much that he wouldn’t allow it. He was a veteran caregiver. They were in their mid-thirties and had been together since high school, when Tisha had her first sickle-cell crisis. He also had a full-time job and managed their two girls, eight and five. I once asked him how Tisha got through her pregnancies and he just shrugged, “She just had a couple of good years I guess.”
There are many theories of pain: that it’s the body’s alarm system that warns us that something is wrong; that pain is only perceived in the brain; that pain is an emotional response to overstimulation. There are age-old ideas: God could be testing us, or Satan enjoying himself. Then there are theories with fancy names that only neuroscientists argue over: Specificity Theory; Strong’s Theory; Pattern Theory; Gate Control Theory. These are all merely postulations; there are no scientific, social, or spiritual laws about pain because, in the end, no one really knows what it is. Like art, or love, it resists definition. And yet, it always demands a justification. No one ever says, “Ah, there’s the pain… whatever.” We demand the why without knowing the what.
Wilhelm Reich, the Austrian doctor and psychoanalyst, believed that almost all pain and suffering — physical, emotional, or psychic — has its roots in ‘neuromuscular armoring’ for which orgasmic release is the only cure. He also believed this armoring had its roots in patriarchy, which he likened to an authoritarian state that repressed sexuality and made it shameful. Modern healthcare is also an authoritarian state of sorts. It defines pain for us, determines how much we have and how much we should endure. The 1-10 pain scale on hospital walls suggests that patients get to judge their own pain, but medical notes are full of comments such as, “Patient reports 8/10 pain but is eating lunch without noticeable distress,” or, “10/10 pain noted but patient is conversing normally on the phone.” Subjective, judgmental observations undermine the scale all the time.
Veteran patients also play the game. Tisha knew a rating of 6 would get her the opioid analgesic Dilaudid, but an 8 would get her a higher dosage. She knew if she was balled up and moaning she would be taken more seriously. In the end the physician decides, but often a protracted negotiation plays out beforehand. When a patient in sickle crisis arrives to the Emergency Department, they know what has helped before: a specific opioid pain medication in a certain dose delivered intravenously at a fixed interval; IV hydration, an IV antihistamine and prophylactic antibiotics. They are prepped for the battle they know will ensue. They know that some Emergency doctors will want to begin slowly with acetaminophen or non-steroidal analgesics like ibuprofen and initially resist the opioid analgesia. Medical providers see it as their role to act as the arbiters of pain control. Doctors like to titrate up pain meds and when a patient objects, the phrase, “patient refuses medication” or “patient refuses to cooperate with care”, is entered into the medical record, often without context or explanation. It is not so subtle code; future providers will see this note and suspect the patient is a drug seeker. In Tisha’s case it didn’t matter, her chart was full of these comments, as are the charts of many sickle cell disease patients.
With sickle cell disease there is always the elephant in the room, which is race. About 100,000 people in the U.S. have sickle cell disease; over 90% are Black or African American, most of the rest are Hispanic or Latino. A black patient with sickle cell disease knows their pain will not be taken as seriously as the pain of a white patient. There is an extensive body of research that bears this out, but black and brown patients don’t need confirmation from data, they know this through lived experience. Often this leads to a verbal waltz around treatment to avoid antagonizing the doctor. Tisha refused to dance.
On the fifth day of admission Tisha messaged me complaining that nurses weren’t bringing her pain meds on time. It was a common complaint and I knew I’d have to negotiate with the charge nurse who would defend her team. Nurses chart the time they deliver meds, so in theory I should have been able to track down exactly when she received her medications, but there is so much slack in the system that times can be fudged. Policy allows a forty-five minute window before and after a scheduled dosage time. Many meds are ordered as PRN; meaning the patient can have them but need to make a request. I rarely search for that information, it’s never helpful to counter complaints about delays in care with facts. Perceptions are what counts when a fifteen- minute wait can feel like hours for a patient in pain.
Austrian philosopher Ivan Illich taught pain has meaning, just like love, doubt, joy, and depression have meaning. He believed they all predated writing, language, and art. He thought pain was the source of all religious belief and lamented the loss of the modern world’s willingness to experience pain that may open a door to spiritual insight and personal growth. In Medical Nemesis, Illich suggests that modern medicine had destroyed any meaningful way to consider pain other than something to obliterate. In this sense Tisha, her doctors, and I would have been disappointments for Illich. Like most people, I see pain as something to avoid or mitigate. Whilst our literature, from Oedipus, to Lear, to Frodo Baggins, is full of protagonists who run a gauntlet of struggle and pain that leads them to wisdom and a new understanding of life, most of us prefer pain-wrought insight to remain in the realm of fiction.
One week into the admission, doctors said they would discharge Tisha the following day. This was a compromise. Tisha wanted more and was unhappy about being transitioned from IV medications to oral in anticipation of going home. But the doctors had wanted to discharge her after four days, so it was a victory of sorts for her. Like any good compromise, neither party was particularly happy, but there was a sense of relief from both sides. This was the pattern: exhaustion brought mutual capitulation.
I said goodbye to Tisha at the hospital entrance. She gave me a wan smile and a tiny wave as she entered the car. After Tony closed her door he rounded the car and looked at me. “See you next time,” he mouthed with a smile that mimicked hers just moments before.
August 2017
I heard from Delores before I knew Tisha was in the hospital. She left a scathing message that announced she had contacted the Health System’s office for Institutional Equity as well as the Federal Office for Civil Rights. She said she wasn’t going to bother with the state because, “I won’t waste my breath on those crackers.”
When I saw Tisha in the Emergency room she was whimpering and crying. There was bloody vomit in a plastic bin and in her hair. She was curled in a ball and shouted, “Get Tony, I won’t take a damn thing until Tony is here. They can stay out of my fucking room until Tony comes!”
I discovered that Tisha now had a complex care plan, something created by Emergency and Hospitalist doctors to standardize and manage a frequent flyer. For a patient, the advantage is a consistent approach removed from the subjective decisions of a single provider. For a doctor it’s a roadmap to guide them when making difficult treatment decisions for a demanding patient. Left unsaid is that it also relieves the doctor of the responsibility to treat Tisha as a complex person whose presentation may vary on each visit. It is inflexible and typically a plan is made with little or no input from the patient, the very opposite of the doctor-patient partnership approach that our health system espouses. Because physicians and their patients are not equals in care when it comes down to it. The days of the imperial doctor are long gone, but doctor-patient partnership is often not accurate either.
I sat and waited for Tony. When Tisha saw that I was staying she began to bargain, hoping that I might influence the doctor. “Why are they such idiots? If I get what I need now, I can go home in a few hours. If they do the drip, drip torture I’ll get worse and they’ll have to admit me. It’s so fucking stupid.” Then she added, “For smart people why are they so clueless? They want me out, so do what it takes to get me out!”
There’s the dilemma in a nutshell. An entire health system scared to death of contributing to painkiller addiction. I went to find her doctor and when I mentioned Tisha’s name the attending said, “She’s got a stomach perforation, we’re admitting her. She’ll be getting everything IV because we’ll need to scan and scope her.” This decision had nothing whatsoever to do with me, but I used the opportunity to let Tisha know that she’d be getting IV Dilaudid soon. I knew she’d associate me with the good news and I’d get credit for something I didn’t deserve, but this was money in the bank for later on.
When I returned to the room Tony was there, looking worn. When I delivered the news about the admission Tony said, “Well, at least Delores will be happy. That’s all she ever cares about. She wants Tisha in the hospital cause then she thinks she’s being cared for. Delores doesn’t trust me. She just thinks I’m just an uneducated white boy. She’d rather Tisha live here permanently than go home with me.” I told him Delores did not trust the hospital or the doctors either. “Well, there you have it. She don’t trust Tisha either. She trusts no one. She thinks everybody’s out to fuck her.”
This admission became much like the others: battles over drugs, dosages and discharge; accusations of racism and incompetence. Over the course of eight days Tisha’s mother called me an imbecile, incompetent, a shill, an empty chair, a collaborator, a scam artist and a fake. Yet, she called me rather than the doctors or an administrator, knowing I was the only one who would continue to listen to her. Doctors and nurses went about their business while I played rodeo clown.
I didn’t see Tisha as much during this admission but then she called and asked me to come to her room as soon as possible. When I entered, Tisha’s hair was done and she was applying makeup. Tony had a camera around his neck and was setting up a small spotlight. “I’m applying for a job and I need some head shots,” she said when she saw me. She watched my face and said, “I love it when you come in here and can’t get a word out. I’m not just a sick person you know. I’m trying to feel beautiful so I can look beautiful. It’s a lot of work.” I asked if there was anything she needed. “Your face already gave it to me,” she smiled. “One of these days I won’t be able to do this anymore.” She seemed to accept that her beauty was something that would fade, and maybe quickly, but for the moment at least, didn’t seem sad about it.
Most of us have a self-image to which we jealously cling. Chronic illness seems to trigger a re-evaluation, and acceptance of a new reality. Frida Kahlo made dozens of paintings of her twisted and damaged body and despite their exaggerated colors, extravagant symbology, and overall theatricality, she felt them to be utterly representational. “They thought I was a Surrealist,” Kahlo wrote,“but I wasn’t. I never painted dreams or nightmares. I painted my own reality.”
November 2017
This was Tisha’s shortest visit yet. It was also the only time her mother was present. When I was introduced, Delores said, “Ah, the so-called advocate.” I ignored the insult. I’m good at ignoring insults, although it was not in the job description. I swing between believing this requires a strong ego or a weak one. Over time it became so normalized that I barely heard the abuse, the slights, the taunts.
Most of the time ignoring abuse defuses it. For Tisha’s mother it was provocative. “Are you the white guy they trot out when they want to shut someone up?” she would say. Or, “You remind me of low-level State Department interns who don’t last a week.” Or, “You’ve got about enough clout around here to get me a bag of peanuts.” With doctors she didn’t bother to be so creative, she just cussed and called them racists when they wouldn’t order higher doses of Dilaudid or mentioned discharge, and eventually she got trespassed from the building by Security. She walked out as though victorious. Tisha was too miserable and in too much pain to register any of this and I didn’t see Tony at all. The next day Tisha left the hospital with her mother who said they were going to Johns Hopkins, “Where there are some real doctors!”
February 2019
I didn’t think much about Tisha for over a year. There were too many unhappy, angry, anxious, frustrated, and fearful people in the hospital to do anything but focus on what was right in front of me. She’d been admitted for four days before I even knew she was here, which alone was a clue that something had changed. She didn’t even call, I accidentally came across her name at the nurse’s station. When I entered her room I encountered a different person. Tisha had aged significantly and her hair was disheveled. Her skin had a hint of gray. She was wearing yellow non-skid socks and a hospital gown, neither of which she had allowed on prior visits. New glasses accentuated the dark skin around her eyes. Nevertheless she smiled when she saw me, a smile that took an effort and revealed a lopsidedness in her face. “Long time no see buddy,” she said.
“I’m glad I’m your buddy. I don’t think I ever helped you that much,” I confessed.
She waved me off and said, “You came when I asked. That’s a lot more than I can say for most people.”
Tisha had one IV line with fluids and iron supplements for her anemia, and another for antibiotics for a pneumonia. She’d had three admissions to Johns Hopkins in seven months, the last time for five weeks after a stroke. I asked if it had been any better up there.
“Pretty much the same,” she said. “People trying and failing and then kicking me out cause they don’t like to look at their failures.” It came out bemused. Her body was battered, but somehow her attitude was tranquil, less troubled. I asked about her kids. “They’re OK,” she said. “Tony does a pretty good job keeping them out of trouble. He’s shit at braiding their hair and his momma never taught him how to cook, but it’s gotta be better than having my sick black ass worrying them all day long.”
I asked if her mother was around, mostly so I could prepare myself. “She’s in Germany. Went back to her life. She can’t be a babysitter forever.” Again, there was no bitterness in her voice. She was calmer, more resigned, which somehow made me sad. I missed the old pugnacious fighter, the flamboyant, defiant Tisha. In her absence she had evolved, and I had been left behind.
When I swung by the next day she was sleeping. The day after that she was out of her room having an abdominal CT scan. When I did see Tisha again, she was being discharged. There was no resistance, she said she was relieved to be going home. I asked when Tony would be around to pick her up. Without skipping a beat she said, “He’s gone. I kicked him out.” She saw the confusion in my face and added. “He cheated on me. More than once and I ain’t gonna take that. Don’t worry about it. It’s what happens. I’m good.”
I must have looked crestfallen. Tisha looked at me and laughed. “Oh yea, and I cheated on that motherfucker too. He’ll get over it. And I’ll get over it too. We’ll get back together: he can’t live without me.” Then I saw the sly little smile and knew she was still in there.
That was the last time I saw Tisha. Maybe she went to Germany to be closer to her mother. Maybe she went back to Baltimore. Maybe she and Tony got back together and found a better way to manage her crises. Life expectancy for women with sickle cell disease is about fifty-five years, which would give Tisha another twenty years, but not likely a good twenty. In the end there might be more pain, seizures, perhaps another stroke, or multiple organ failure.
Tony understands Tisha better than anyone, and Delores is as fierce an advocate as I’ve ever encountered, but whether either will be there until the end is impossible to know. But I trust Tisha’s gallows humor and combative spirit will carry her through whatever rough landscape may lie ahead.
Image by Joran Quinten on unsplash.com, licensed under CC 2.0.
