Epidemics: Stories of medical crises

This week, we present two stories of medical crises, from New York in the 1980s to the present-day opioid epidemic. 

Part 1: As a pediatrician in the 1980s, Ken Haller comes across a disturbing X-ray.

Ken Haller is a Professor of Pediatrics at the Saint Louis University School of Medicine and Cardinal Glennon Children’s Hospital. He is President of the Missouri Chapter of the American Academy of Pediatrics and serves on the boards of the Missouri Foundation for Health and the Gateway Media Literacy Project. He has also served as President of the St. Louis Pediatric Society; PROMO, Missouri’s statewide LGBT civil rights organization’ and GLMA, the national organization of LGBT health care professionals. He is a frequent spokesperson in local and national media on the health care needs of children and adolescents. Ken is also an accomplished actor, produced playwright, and acclaimed cabaret performer. In 2015 he was named Best St. Louis Cabaret Performer by the St. Louis Post-Dispatch, and he has taken his one-person shows to New York, Chicago, Denver, and San Francisco. His special interests include cultural competency, health literacy, the relationship of medicine to the arts, the effects of media on children, and the special health needs of LGBT youth. His personal mission is Healing. Ken is also a member of The Story Collider's board.

Part 2: Neuroscientist Maureen Boyle's relationship with her sister, who struggles with drug addiction, becomes even more complicated when she begins working on drug policy.

Maureen Boyle is the Chief of the Science Policy Branch at the National Institute on Drug Abuse or NIDA. She is a neuroscientist who has spent the last 7 years working on behavioral healthcare reform and drug policy. Prior to joining NIDA she was a AAAS Science and Technology Policy Fellow at the NIH Office of Behavioral and Social Sciences Research.  Before getting involved in policy she studied the biological basis of psychiatric and neurodevelopmental disorders. When she wants to get out of her brain she runs, does yoga, and tries to apply Pavlov's lessons to her bulldog puppy. 

 

Episode Transcript

Part 1: Ken Haller

In the summer of 1981, I was beginning my pediatrics residency at Lenox Hill Hospital on Manhattan’s Upper East Side. The year before, I'd done a rotating internship at Nassau Hospital in Mineola, Long Island, about ten miles from where I grew up in a town called Hicksville. Yeah. I know.

It had always been my dream growing up in those post-war tract house suburbs, that someday I would live in New York City, especially after I was old enough to be able to buy tickets to the Long Island Railroad and go in by myself and see the skyscrapers and the parks and the museums and the Broadway shows.

It wasn’t until that year, though, that it really happened. What was really best about it was that I was moving in with Bob Corsico, my boyfriend, my partner, my lover. It was the ’80s.

And a funny thing, even though Bob and I met and became friends and fell in love in Omaha, Nebraska, when we were both students in Creighton University, Bob grew up in Syosset, Long Island, about two miles from where I grew up. It’s kind of like we were always meant to be together, like kismet.

The thing is when we both graduated from our respective programs, we moved east together. That first year, I lived in hospital apartments in Mineola and he lived at his parents’ house, got a job in the city and would commute in each day on the train. So finally, after a year, we were going to live the dream and live in New York City.

For those of you who may not have been adults in the 1980s, or even on the planet, for gay men to move in together in those days was kind of a big deal. I mean, just three years before that, Anita Bryant and her Save Our Children coalition had succeeded in overturning a gay rights ordinance in Miami, Florida, by expounding on how horrible homosexuals were with children. So it wasn’t something that you did lightly, especially if one of you was going to be going into a training program to become a doctor who takes care of kids. But love would find a way.

Now, Lenox Hill Hospital started out many, many years ago as the German dispensary in 1857 to serve the growing German community in New York’s east side. So basically, it really was a community hospital. It had a very small pediatrics program, only four residents in each of the three years. That meant that each of us spent a little bit of time at other hospitals, larger institutions, to get sub-specialty training that we just couldn’t get at Lenox Hill.

Which is why, in August of 1981, I found myself at Memorial Sloan-Kettering, then, as now, one of the premier cancer hospitals in the United States, to do my pediatric hematology-oncology rotation. I was taking care of kids from all over the world with cancer and leukemia. Memorial was the place where the mysterious cases were sent and, for many, including kids, it was sometimes the hospital of last resort.

Each morning, our team -- the attending physician, the residents, the interns like myself and the medical students -- would go down to the radiology department and go over the x-rays that had been done the day before with the radiologist. We had just finished up when he said, “Wait a minute. I know you guys are peds, but I wanna show you this one film that’s really interesting.” That’s when he sort of rifled through the x-rays that are on his desk, picked one up, and slapped it up on the back of the view box.

“Take a look at this. What do you think?”

We all stood in silence as we regarded this strange film. In my head, I started to go through the checklist that I learned as a third-year medical student about how to read a chest x-ray. Okay, by the size and soft tissue it appears to be a thin adult, probably male since no breast shadows were evident. Good quality film. No rotation. Heart size, normal. Normal shape. Lungs… something about the lungs.

For the most part, they were almost black fields indicating that the x-rays had gone clear through the mostly air of the lungs to expose the film behind, interrupted at regular intervals by the gentle white arcs of the ribs bordering and encircling the chest. But in the black, where there should be nothing: more white. Something. Some things blocking the x-rays, floating in space and looking like giant cotton balls.

Fluffy infiltrates is a term that radiologists sometimes use for lesions such as these. I thought I could rattle off a few things that might cause this, but it would help to know more about the patient. I knew my place so the resident was the one who asked the question.

“What’s the history?”

“Twenty-seven-year-old, previously healthy white male.”

And I thought, That makes no sense. This is the sort of thing that’s usually seen in a fungal pneumonia in really old people.

“Yeah,” the radiologist said, “he's been coughing for a few months. Anyone wanna guess what this is?”

The attending said, “Fungal pneumonia.” I thought, Cool. Nailed that one.

“Nope,” the radiologist said, clearly pleased at having stumped a clinician. “Anyone else wanna take a guess?”

Silence.

The radiologist looked over the crowd, and with a sly smile, he said, “Pneumocystis carinii pneumonia.”

His audience did not disappoint. This revelation actually brought a gasp from the attending. For myself, I thought, That’s impossible. Pneumocystis was thought to be a protozoan and a very rare cause of disease in otherwise healthy human beings. In fact, my only previous experience with it had come the year before when I was doing a month of internal medicine at Nassau Hospital. I saw this woman in her late eighties who was diagnosed with it just before her death. For it to be present in someone this young and this healthy was inconceivable.

The attending was mirroring my thoughts. “How do you know that’s it?”

“Pulmonary did a biopsy, but shouldn’t your next question be, what’s a pneumonia doing at Memorial?” We looked at each other. Yeah, it should. Why, indeed, would an infectious pneumonia be admitted to a cancer hospital?

Again, the radiologist scanned the crowd and said, “Because he was originally referred here for Kaposi’s Sarcoma.”

Again, his audience was thunderstruck. Kaposi’s Sarcoma is a form of skin cancer that often looks like a bluish-purple bruise. In fact, most people think it is a bluish-purple bruise until they realize after weeks or sometimes months that it hasn’t gone away. That’s when they go to the doctor to have it checked out and they get the bad news.

But again, it was only seen in very old, sick people whose immune systems were not working. What was going on with this twenty-seven-year-old?

“Yeah, so the guy comes in. They find out he's been coughing and they get this chest x-ray. He's been losing weight. They find out it’s pneumocystis and they're stumped. So they talk to other docs around town. They find out that he's not the only one with this stuff going on -- like five, six cases like this, pretty much like it, right here in New York. And you know what they all have in common? They're all homosexual.”

I don't know if I broke into a sweat. I imagined that my face flushed and I’m pretty sure that my heart started pounding like one of the jackhammers out on York Avenue. I stared at the x-ray for something. What?

“Wait a minute,” the attendee said. “I think I read something about this in Morbidity and Mortality Weekly Report. These clusters of homosexuals coming down with these weird diseases. Here, San Francisco, Atlanta.”

“This is one of them,” the radiologist said, as if he were presenting a rare white tiger.

Pneumocystis carinii, Kaposi’s Sarcoma, fluffy infiltrates -- words I'd heard, things I'd seen, but, in the pit of my stomach, I knew I would see them over and over and over again in hospitals, in clinics, in bars, in friends. Something bad was happening, and this guy, this twenty-seven-year-old, he could be me. Someday, I wondered, would I be him?

I don't remember that much more of the conversation that followed as people started talking about what they’d heard and hadn’t heard, what they knew and didn’t know about these clusters of cases. Someone said something about sexual spread. Someone else, something about a term she’d heard before called Gay Lung Disease. Someone else made a wisecrack about faggots. I stood silent staring at patterns of shadow and light.

Once I got back to the inpatient floor, I had a lot of sick kids to take care of and it really didn’t give me time to think much about this guy with this thing with no name. It wasn’t until much later as I finished my work and I was walking slowly the fifteen blocks back to my apartment at Second Avenue near 80th in the dark, still, hot August evening that I started to feel the unease of the morning return.

I got home late that night. Bob was there. He’d already eaten, as usual. “Long day, huh?”

I said, “Yeah.”

He fixed me a plate, as usual. “Yeah, long day,” I said as I looked up at him, almost examining him.

That night I held Bob in bed as we slept and I listened to his breathing, his strong, healthy breathing and I wondered about the future. I wanted this moment to last forever. I didn’t know then that this twenty-seven-year-old guy I would never meet would be one of the first gay men diagnosed with something that would briefly be called GRID, for Gay-Related Immune Deficiency, and later would become known to the world as Acquired Immune Deficiency Syndrome, or AIDS, and that a virus that would be dubbed Human Immunodeficiency Virus had already spread to many of my friends and that many of them would die in the coming years.

I didn’t know then that Bob and I would split up three years later, but that we would become very best friends very soon after that, and we would remain best friends until he died at the age of thirty-six on Thanksgiving weekend 1994.

I didn’t know then that Bob would come to me in a dream in 1997, a dream which I know to be a real visitation against all reason and all science because it was briefly interrupted by a phone call which I did not answer, but which I found out later was from Bob’s mother, who was calling and said she felt compelled to call at that moment just to ask how I was.

I did not know then that, in that dream, Bob would comfort me and tell me that he was at peace, that death was nothing to fear, that he would always be with me and he would always love me. Kismet.

I didn’t know then that this day would mark the split between before and after in my life, and that I would be one of the survivors to tell the story of my people on the time of plague.

I didn’t know any of this as I held my lover on that sultry night in August as he slept peacefully in my arms, or earlier that day as I stood frozen in the dark, staring at the chest x-ray of a nameless, doomed twenty-seven-year-old gay man.

What I did know, as I finally fell into a troubled sleep that life, as I knew it, had changed forever.

Thank you.

Part 2: Maureen Boyle

The first time I smoked weed was with my older sister. When we were young, I was in awe of her. She was gorgeous. She was smart and insightful. She wasn’t just popular -- she was a leader of the popular girls and she always knew how to get exactly what she wanted. We used to go to this little store around the corner from our house and, with just a look, she could get the guys behind the counter to give her a free candy or soda.

She was always the fun and impulsive one. The first time my parents caught her getting drunk, she was only thirteen. By that time, more than a few of the bottles in our liquor cabinet had been topped off with water or iced tea.

She started staying out all night, partying with her friends, but that fun and impulsive side was only part of the picture. She started going through bouts of mania and depression. She started starving herself to stay thin. She was in and out of the mental health institutions, gathering up different diagnoses, bipolar disorder, OCD, panic disorder, anorexia, PTSD.

In college, she started dating a pharmacist and he basically gave her unlimited access to pills. I would go over to their apartment and there would be Costco-size bottles of Vicodin, Percocet, Xanax just sitting out on their shelves. For her, that eventually transitioned into heroin and crack. That’s when all the behaviors that you associate with addiction began, the lying, the stealing, the only showing up when she needed or wanted something.

There was one time she called my brother in the middle of the night begging for two hundred dollars to get her carpets cleaned. She went from this incredibly smart person to someone who couldn’t think of a better lie than a carpet emergency.

Our relationship took a lot of twists and turns over the years. At times, she could be the most thoughtful and pathetic person you know. She knows how to comfort you when you're in pain. She knows what to say to reassure you, to make you feel like you're loved, because she knows what it’s like to feel like you aren’t. But at other times, she could show a selfishness and an unconcern that was totally incompatible with the other side.

She used to smoke cigarettes incessantly. But my mom had bad asthma. She’d be upstairs in her room smoking out the window while our mother struggled to breathe downstairs. And she knew what she was doing. She knew that she was hurting our mom and she wouldn’t just go outside. For a long time, I couldn’t forgive her for it.

But as I got older and I understood her mental health problems better and the pain that she was in, we got close again. We were even roommates for a time in college, but she was at the height of her anorexia.

She was five-foot-five and got down to about eighty-five pounds. I'd come home and she’d recite for me the meager amount of food that she’d allowed herself to eat, the slices of cucumber, steamed green beans. And she’d show me how her size-zero jeans were starting to get baggy on her. And in the next sentence, she’d ask if she was fat. Every conversation centered around it. It felt like she needed constant reassurance -- reassurance that I loved her, reassurance that she was thin, reassurance that life was worth living. But no amount of it ever seemed to make a dent.

There was one time when I was cooking dinner when I realized that one of the good knives was missing. I asked her about it and she said that she had started sleeping with it in her bed in the hopes that she would wake up with the strength to do it. I was eighteen. I had no idea how to handle this. I was convinced I was going to wake up one morning to find her body, or that I'd get a phone call at work telling me she was dead.

I wish I could say that I was strong when she needed me the most, but I wasn’t. I started avoiding being home. I would leave first thing in the morning and come back just in time to go to bed. And all this time, all I wanted was to save her. I was convinced that if I could just come up with the right words, if I could just frame the right argument, she would understand that life wasn’t as bad or as hard as she thought it was. If I could just find the words that would resonate with her, she would stop hurting herself and she would get better. But I never found those words.

I was still her nerdy little sister, and I went off to grad school to study the neurobiology of mental illness. I was fascinated by how this mass of cells within our skulls could produce these sentient, introspective beings with such complicated and often inscrutable emotions and behaviors.

One day in my first year, I was in the lab, mid experiment, pipette in hand, and my phone rang. I glanced over and saw that it was my mom. My heart dropped. My mom doesn’t call. Ever. She emails.

So I ripped off my gloves, grabbed my phone, ran into the hallway. I was shaking by the time I answered. Then she tells me that she's redoing her will. She wants to send me some papers for me to sign. She heard the tears in my voice as soon as I replied. She knew exactly what I'd been thinking because it was what we were all thinking, all the time. She didn’t call again without emailing first.

A few years ago, I moved away from the lab bench and into policy, where I’m still working on mental health and addiction issues. Just about every day, I tell people how addiction is a brain disorder, how drugs flood the reward circuit with dopamine. This is the same circuit that reinforces natural rewards. Food, sex, love. But drugs activate it much more powerfully. And the brain likes to maintain a level of balance so when you repeatedly hyper-activate that circuit, it compensates to turn the volume down. What that means is when you stop taking the drug it’s still on low so you don’t experience the same level of pleasure from the natural rewards.

And similar things are happening to different circuits throughout the brain that are affected by drugs, circuits that control your stress response, pain, learning and memory, impulse control, decision making. Some of these are primal circuits. So someone with an addiction basically learns incorrectly, but powerfully, that their survival depends on those drugs.

So put yourself into the brain of someone with an opioid addiction. You want to stop, but as soon as you do you start to experience withdrawal. You're nauseous, you're shaking and sweating. Your head hurts, your body hurts, your joints, your bones. You have vomiting, diarrhea. It feels like the worst flu you've ever had. Your stress response is out of control and you know that the only thing that’s going to make it better is if you just take that drug.

Imagine at the same time that the circuits that help you prioritize your long-range decisions, your long-range goals, are diminished. Can you maintain your recovery? What if you also have PTSD or bipolar disorder? What if you're living in poverty? And even if you do stop using drugs, you don’t see a realistic way to rebuild your life.

On your worst days when you're stressed, exhausted, overworked, do you always live up to the goals that you set for yourself to eat right, to exercise, to walk your puppy? Do your better instincts win day after day, week after week, month after month? When I think about my sister through this lens, I have incredible sympathy for her. But the reality, on a face-to-face with her. is so much harder than this.

She lies. She doesn’t take responsibility for her actions. She doesn’t contribute to society. All that the science tells us doesn’t tell us how to actually have a relationship with someone in the throes of an addiction. When she lies, should I pretend that I believe her? Should I call her out on it, knowing it’s just going to start a big fight? Should I ignore it and move on? How can you have a relationship without trust? Without reciprocity?

Family relationships are always complicated. If my sister were here today, she would tell you that I’m not supportive enough. She blames me and the rest of my family for her illnesses. She thinks that if we could just trust her more, if we could just support her unconditionally, she could get better. But I don't know how to pretend to trust. I don't know how to pretend I don't see the lies.

A good friend of mine in recovery from addiction once told me that the best thing that family members can do is to distance with love, to show empathy and compassion without supporting the behavior. But anyone who’s ever done this knows how incredibly difficult it is, and every single member of our family has a different definition for what it means.

I wish I had good answers to these questions. I wish I had something to tell the family members that came to me how to rebuild their families. But in life, just like with science, we often don’t get complete answers to the big questions. We keep asking and looking and finding small pieces to the puzzle, and that’s what I try to do.

As I was writing this story, it brought me right back to that place of believing maybe I could find the right words. Maybe I could find words that would resonate with my sister, words that would save her. Hopelessness has been a refuge for me for a really long time. And even just a sliver of hope, that I don’t really even believe in, opened up this stuff, the pain that I’m usually really good at pretending isn’t there.

I don't know if I'll ever have a normal relationship with my sister, but I hope that she knows that even though I hold myself at a distance, I do it with love and with the hope that one day we can have the kind of relationship or accept each other despite our flaws without having to pretend they're not there.

Thank you.