Healthcare is often a tangled web of bureaucracy and inefficiencies. In this week’s episode, both of our storytellers share their experiences navigating its many flaws.

Part 1: Zoe Wisnoski takes matters into her own hands when her son has months of ongoing fevers.

Zoe Wisnoski is a seeker of stories, adventure, travel, and moments that stick with you. She stumbled into the world of storytelling through a training put on by Story Collider. Her passion for activism buoyed by a penchant for oversharing has finally found a home. Formerly a feminist policy analyst with a Masters in Public Policy from the Humphrey School of Public Affairs, now a full time - still feminist - mother, Zoe spends her time attempting to create joy amidst utter chaos. When her son was diagnosed with the super rare, to date minimally understood, genetic disease Tatton Brown Rahman Syndrome (TBRS), Zoe reoriented her educational and professional background to meeting his needs and volunteering with the TBRS Community, the nonprofit aimed at supporting families and advancing research for TBRS. In 2024 she joined the board of directors and continues to search for answers.

Part 2: During the pandemic, epidemiologist Bryon Backenson becomes disheartened when the public stops cooperating with public health authorities.

Bryon Backenson is an epidemiologist. He is currently the director of the Bureau of Communicable Disease Control at the New York State Department of Health. He and his team investigate, respond to, and research infectious disease outbreaks. He is also a professor in the University at Albany College of Integrated Health Sciences, where he teaches in the Department of Epidemiology and Biostatistics. When not thinking about disease, he spends his time hiking, fishing, and reading. While he talks about epidemiology and infectious diseases all the time in classes, meetings, and webinars, this is the first time he’s tried to tell his own story in this kind of format.

Episode Transcript

Part 1

I'm sitting in the hospital with my very sick two‑year‑old son Riley. At this point, Riley's had a constant fever for about a month, which surpasses 102 most days and twice has read higher than 103. We take his temperature with every diaper change and put it into our baby app and then export the data to graph it. So, at this point, we have a pretty solid trend line, which is really important to me.

The doctors are calling it a fever of unknown origin, which basically means they have no idea what the cause is. And I feel desperate. I would do literally anything just to understand what is happening to his little body.

And beyond this feeling of complete disorientation, we are quite literally so alone. Riley's fever started three days prior to the US lockdown, so we have no support. No hugs from family, no food drop‑offs, and no real breaks. Just my husband, Riley, and myself. We're not even allowed to leave this hospital room.

So, I'm sitting here talking to the most recent doctor, who is yet another confused MD in a long line of confused MDs. He begins lecturing me on how I need to stop taking my son's fever. He tells me that I'm going to make myself crazy, as if I'm not already crazy. Riley’s sick and no one knows why and there's nothing for me to do about it. The only tangible help I can offer is this data, it's my control. His suggestion feels like a slap in the face.

We leave Children's Hospital after three days of testing. Riley’s workup is exhaustive and inconclusive. The next month is filled with more fevers, tests and confusion.

Finally, two months after fever onset, it's time to rule out cancer. Our intake to hematology oncology starts with the knowledge that only one caregiver can show up. Thank you, pandemic. I go because I have a very understanding husband that knows I need to be with Riley for the scary stuff. That I'm holding it together by a thread.

I'm too new to this sick‑kid game to bring a screen for Riley to watch, so this visit is 90 minutes of just pure chaos. My husband is on the phone with a bad connection and I'm chasing Riley, and the doctor speaks in just the quietest of voice.

So I leave the appointment understanding two things. A bone marrow draw is scheduled for later that week and the doctor really doesn't think that he'll find anything based off of all the data and the results that we have collected these last two months.

We have the procedure and, afterwards, we go home. I just feel this, like, rush of relief. I was so happy to finally rule out cancer, that word that tugs at your gut for whatever reason. And while we hadn't gotten the results, I was convinced that this meant that we were past this terrifying possibility.

My mom was there, finally. She joined our bubble that day. So when we walk in the door, she's making food and comfort. And she sets him up with Mickey Mouse Clubhouse and I had this urgent need to get outside to move.

It was sunny and beautiful. It had been months at this point since I'd seen my mom due to COVID, so we took a walk.

We left this peaceful house, finally having no worry about stepping out for a moment. And I started talking to her as if I was this 13‑year‑old girl and she's driving me home from sports practice. You know, the magic of a car when the adult shuts up and the stoic, too‑cool teen finally spills everything. That was me. And this manic worry and hope intermixed with the melting of the creek and these white buds were speckling the ground because spring was starting in Minnesota, and my mom just listened. It was a short walk, but it felt like something good.

When we got back, I have a foot inside the door when my loving, gentle husband says to my mom, "You need to get out now.”

I don't get it at first and I get defensive. Like what the hell are you doing? You don't talk to people that way.

But I turn to my mom and she's pale. Her skin suddenly matches the N95 she put on before entering our house and it's her look that drops my stomach.

She rushes out the back whispering, “Call me as soon as you can,” and things go dark. In part, very literally, like there is no natural light in our kitchen and none of the lights are on, but also just the fear.

I can't fully catch my breath. Words start spilling out of Mike's mouth, words like ‘cancer’, ‘leukemia’, ‘abnormal findings’. Apparently, in the 20 minutes of fresh air I finally let myself have, the doctor had called and the world decided to end. Fuck! They think it's fucking cancer.

I hear the dial tone as we call him back together. And when the doctor picks up, you can tell he's dragging. And this is silly, but I hear the wind in the background and I get this image of him golfing. That he's somewhere so ordinary, so carefree, and I will never feel that way again.

He says, "This is never the call we want to make." And that's what I remember, that sentence. The next 10 minutes are taken up with this windstorm of different words and phrases. The memory of this moment is very physical, like I get snippets of data and horror just rushing around while I stand like a statue in the middle of my kitchen.

“His bone marrow is abnormal. We can't tell if it's ALL or AML,” which apparently are two different types of leukemia. Leukemia. This one's more survivable. This one has harsher treatments.

At some point, I try to get the doctor to give me a percentage of the likelihood that this is cancer, because he keeps saying, “We're not sure, but it's probably cancer. Maybe.” I don't know how to quantify that. I like numbers, and without them, I feel like this fish out of water.

So I push him and I take away that they're 80% sure. And I cling to that 80%. There is an 80% chance that my child has cancer. My mind doesn't compute the 20% hope, unknown. I'm drawn into this world that is beyond a standard deviation from healthy and happy.

But then we go on. “He definitely does have cancer, probably. And we need to get him a central line as soon as possible. By the end of the week, we'll know more if it's ALL or AML, but either way, treatment needs to start ASAP.”

And the doctor says, “I can get him on a surgical schedule on Friday for a port placement,” and then pauses. “Unless that is you want to spend the weekend with you. I'm sure we could fit it in on Monday.”

My head is already very cloudy, but I pause. Why? Why in the world would the weekend matter? Then I realize that Sunday is Mother's Day. Is he honestly asking if I want to postpone my child's cancer treatment to celebrate myself?

“No. No, no, no. No, we don't need to do that.”

We hang up the phone in silence. I can't even hear Mickey in the other room. It's dark and there are these two statues in the kitchen where we just were. This is where I learned that people handled crises in very different ways.

I turn to my husband and I tell him that I am going to go make some calls. Well, at the same time, he turns to me and says that he's going to go sit with our son.

And while he sits and loves our amazing sweet two‑year‑old, I walk outside to our deck and proceed to call every single person I know with any connection to medicine. I call in every favor. Old school friends I haven't seen in decades. Is this where we should be? Will they take the best care of our son? Is there somewhere better that we should be going? Because I keep focusing on the fact that once we start with the doctor, a hospital, changing will be hard.

We are about to initiate a care plan and I need to understand and know that this is the best place forward, that he's in the best hands.

So I walk down the deck around our hot tub and back to the door, repeat after repeat, call after call, thrown in there with family members. Leukemia, it's leukemia. When I finally go back upstairs to see my husband after my son goes to sleep, I look at him in the eye and we finally acknowledge it to each other and we say it, cancer.

Then the doctor calls us the next morning. Lots of words I don't remember, but I leave the conversation with this. 40% cancer, 60% who the hell knows. So chemo goes on hold replaced by more tests, another bone marrow draw, and more constant fevers.

It wasn't cancer, thank God.

But we also never really found out what the fevers were about. Two months after that first hospital stay, genetics received the results from the testing. Riley was officially diagnosed with Tatton Brown Rahman Syndrome, something so rare that at the time only 200 people were estimated diagnosed. But with our current knowledge, TBRS doesn't really explain what ended up being nine months of fever.

Tatton Brown Rahman Syndrome is a diagnosis that sinks my gut. So little is known. And one of the few things that is known with what little data there is, is that TBRS can impact every part of the human body. Now, suddenly, all of his medical neurological future is hazy, not just the temperature. In the face of this complete uncertainty, I had to figure out how to breathe, how to monitor him without Googling everything and to focus on his happiness.

So I focus on showing him the world and teaching him the importance of adventure, which is just this founding value of our family. We camp and we climb and we travel, and through it, I focus on his smile. That is my new goal in life. His smile. Because I learned very quickly that data is a privilege from the rare disease community, does not have, but we do have the happiness.

Part 2

It's January 24, 2020, it's about 9:00 in the morning. I'm sitting in a car in a hotel parking lot in Connecticut. I got my head in my hands. I just drove a rental car into a snow bank.

I'm thinking to myself, “Oh, my God, what am I going to do with this?” I'm thinking of the nightmare of the paperwork that's going to come with wrecking a rental car.

I get out, I curse a lot. The airbag didn't go off. That's a good thing. The bumper is hanging off a little bit. I pull the bumper off. I can't push it back on so I pull it all off, shove it into the trunk. I drive to my nearest Enterprise Rent‑A‑Car, trade it in for another car and I'm able to drive home.

I kind of kid myself a little bit and I say it was the sun glare. I think that’s what I told Enterprise too. But I think it was the sun glare that was in it. It was early in the morning. It was one of those bright, bright blue skies. There was still snow on the ground. It was really, really bright. I didn't get that good line of sight and I drove right into the snow bank.

But I was also up for 48 hours. I’ve been up for 48 hours straight. Two days earlier, Washington State reported the first cases of COVID‑19 in the United States. At that point in time, I started to get phone calls from providers across New York wondering how they could get their patients tested for a disease here in New York that no one even had a name for quite yet.

I'm an infectious disease epidemiologist. Among other things, that means I work with outbreaks. It means I try and solve them, I stop them, I try and slow the number of cases down so that we get to the point where there are two cases instead of 20 or 200 or 2,000 or 20,000.

I've been doing this for about 30 years now at the New York State Department of Health. I've been able to see a lot. I've been able to do some of the minor basic things that you do every day, food‑borne outbreaks, water‑borne outbreaks, but there've been a lot more as well.

There've been ones where things are a bit more exotic. I’ve dealt with the introduction of West Nile virus here in the United States. I've dealt with Zika virus. I've dealt with travelers who have been coming back from countries with Marburg and Ebola. I've dealt with measles outbreaks.

I like the job. It sounds a little boring. It sounds a little crazy, but I like the job. I like the job an awful lot. One of the things I really like about it is the fact that you never know what you're going to see or hear about when you pick up the phone or open that email that particular morning. You never know what you're going to get.

And you also have the opportunity to prevent other people from getting sick if you do your job well, which makes you feel good about yourself and makes you feel good about society as a whole.

Because I've done this for so long, and I still do the daily, every day work, but I also work with a lot of leadership in the state health department. I'm part of policy and planning and response that we do.

In mid‑December of 2019, I remember bringing up to them about a number of cases of unexplained pneumonia in China and sort of wondering if that would ever come to us. About a month later, they sent me down to JFK Airport, talked with a bunch of agencies about what to do if we had a traveler come back from China who had symptoms of pneumonia and what we should wind up doing with them. A week later, I drove that rental car into that snow bank.

Those calls, those calls about getting people tested, they came and they came and they came and they came. I really shouldn't have been surprised about that. New Yorkers, New York being a cosmopolitan city, being a travel hub, New Yorkers are everywhere. We can have an outbreak on the other side of the world in the smallest little country and somehow a New Yorker is there, and somehow I get a call about it.

Our first case gets reported on March 1st, which is a lot later than I thought it was going to. It was in this cluster of individuals who went to a party in Westchester County. Our second was a cluster of individuals in the Nassau and Suffolk border on Long Island. And our third was a cluster way out at the end of Long Island.

We did what we usually do with these, we try and link them together. We try and tie them together, both internally and see if we can tie them together across clusters. Maybe the best way to think about it is what you see on TV when you see detectives with a corkboard and pictures on them and taking that red yarn and going from place to place, trying to figure out the links between things.

But pretty quickly, cases really started to mushroom and we got to that particular point where you just sort of realize and step back and say, “We can't keep up with this anymore. We can't keep up with this number of cases that we're actually seeing. We can't ask questions of them and figure out where they were. We can't see who they were in contact with.”

Giving up at that stage so early into it, giving up on a tenet of infectious disease epidemiology, made us start to realize, made me start to realize that this is something that we were going to be in for an awful lot of cases at that particular point.

The other thing I think I started to realize at that particular point in time was that this wasn't just some regular cold or flu. Regular cold or flu doesn't put people in the hospital on this particular rate. It doesn't kill people at the rates that we were starting to see as well.

One of the sobering times I've ever had in public health was being at a meeting where we were talking about trying to get more refrigerated trucks sent down to the New York City metro area so we could park them in hospitals or near hospitals to deal with the increasing number of fatalities.

I remember walking back to my office at that particular point in time, kind of shell‑shocked, thinking to myself, “I can't do anything to help these particular people,” these people that are hospitalized, or these people that are about to get hospitalized. But what I could do is try and maybe, hopefully, get them to not get sick in the first place.

We were learning a lot about COVID on the fly. We were trying to figure out exactly what could prevent it at that particular point in time. But if you also remember, some of the messaging wasn't very good. The messaging was pretty terrible in many ways. Hearing about things about six‑feet distancing and masking and airborne transmission and flattening the curve, these are all things that I tried to translate and put into nice, good words that I could send to family and friends and those people you call friends on Facebook, put out those type of posts and see if they could make more of a difference, see if I could get more people interested in and learn a little bit more and hope that those posts got more traction and spread further and further beyond my original group that I sent them to.

A month or so after that, things started to slow down a little bit. We went back to trying to look for clusters of cases and people who weren't co‑workers or at events. We wound up hiring about 7,500 people to do contact tracing. Those people would help with regards to looking and trying to identify some of those contacts and trying to help do what we could do to help them from spreading to other people as well.

I would have conference calls with them on Zoom. In some cases, daily, most cases weekly. I would try and give them updates on what was going on, allow them to ask me whatever it is that they wanted to, try and remind them of what we were doing and why we were doing it, and try and provide a little bit of empathy as well.

I do the same thing for county health departments. They're often a forgotten group of people, the county health departments across the state, working tireless hours as much as we were to try and stop things on their particular level.

Then on my staff, I tried to make sure that they were doing well and not breaking under the crunch of working for hours on end and days and days and days with no break at all.

I oftentimes felt at that particular point like I was doing more wellness checks than I was doing COVID work.

A little bit after that, we started to get vaccines and we started to get asked about going and helping, working at vaccine clinics. I was jealous of the people that actually got to go to those vaccine clinics and work at them. That was the first time, I think, since COVID started where the public actually wanted to interact with Public Health.

There was a certain sense of joy at those particular vaccine clinics. People thought that they would get this jab in their arm and we'd be able to put this particular pandemic behind us. I think we did that in some ways, obviously not in all ways.

I never got to go to one of those clinics, other than to get vaccinated myself, obviously, but I did get to do some other things. I worked with Broadway and the Yankees, with Madison Square Garden and with cruise ships, trying to help things reopen. I got to testify for the department in a handful of court cases. One of the things that still boggles my mind is testimony that I did on Zoom in my converted dining room office is now somewhere in the archives of the US Supreme Court.

But in general, COVID is still a bit of a blur to me. I've spent an awful lot of time hearing things and thinking and remembering and saying, “Oh, yeah, I remember when that happened.” It happens an awful lot still.

At the time, I was still working 14‑hour days. And if you work in infectious diseases, you tend to think to yourself, “Yeah, I can work on adrenaline and I work really well under pressure.” COVID is one of those things I think that turned into a three‑ or four‑year adrenaline rush.

But my problem was I couldn't turn my brain off at night. I would try. I'd lay down in bed, I'd start to think about things. I'm a terrible note taker, which is probably a bad thing for someone in my line of work. But the way that I operate is I tend to operate with tons and tons of Post‑it notes all over my desk, all different colors and different places and so forth. I would lay there in bed and I would think to myself, “Oh, yeah, there's that one particular thing that I completely forgot about,” that got buried under five different Post‑it notes to the left of the mouse.

And I would think to myself, "Man, how can I go back? I got to make sure that that gets done tomorrow?"

Email was the same. I would think about all the emails that I'd wind up missing. It's difficult to keep up when you're getting over 500 a day.

The main thing I think I was worried about was letting people down and letting people down at such a critical time, such a terrible time in most people's lives.

Before COVID started, a few years before COVID started, I'd started this workout thing called rucking. It's now actually gotten a lot more popular. But it basically is nothing more than walking with a big, heavy‑weighted backpack.

During the early days of COVID, I used to ruck a lot during conference calls. But once we started to shift to Zoom and WebEx and Teams and so forth and you were always on camera, it was a little difficult to do it then. But I would go out at night now and I would do most of my rucking then. I'd strap 50 pounds onto my back. I'd go walk five or six miles, mainly to try and exhaust my body so that my exhausted body could help override my excited brain and I could, hopefully, wind up going to sleep.

My wife was incredibly understanding during this. She'd see me strap on at 10:00 or 11:00 at night, put my little headlight on, go out, come back two hours later, collapse into bed, get up for the next conference call at 6:00 AM or 7:00 AM, start the whole process all over again.

Eventually, with the variants and the Greek letters and more vaccines, we got to the point where things seemed like they were getting back to normal, or maybe it was a new normal. But I guess the question comes, did COVID win?

I stopped doing those Facebook posts probably about a year or so into COVID. I just didn't want to fight people on the internet anymore. In the beginning, you got great feedback from those, but now it was just nothing more than a fight and people picking and coming at you as to whether or not your experience mattered anymore.

I think it started to reflect a little bit of what we may be starting to see in society, and it's trickled into more than just COVID. Public health is a field that requires cooperation and honesty from the public in order for us to do our job and do our job well. It's really difficult to try and figure out a food‑borne disease outbreak if people don't return our phone calls and tell us what they actually ate.

Vaccine‑preventable diseases are starting to make a big comeback now. We're seeing more cases of measles and mumps and pertussis and, now, polio, all because of the distrust in vaccines. We have elected officials who don't believe in evidence‑based prevention for disease. We have a number of public health officials who sometimes actually actively encourage the public to not cooperate with public health authorities.

On one of the few days off I had during COVID, my wife and I went up to the Adirondack Experience Museum in Blue Mountain Lake. In one of the buildings there, I happened to stumble into an area that had an exhibit about the Adirondacks in World War II. I'm sure there was a lot more in the exhibit, but the thing that really comes to mind, the thing that mesmerizes me about it were the posters on the walls. The posters that many of you, I'm sure, are familiar with, the “I Want You” from Uncle Sam, or the ones about war bonds and so forth.

The ones that really struck me were balloons about Victory Gardens and the ones about saving your bacon grease so the glycerin could get used to help make more bombs. These posters are classic marketing. In some cases, you may call them propaganda.

But the reason they were done is to try and get the public collectively around solving a particular issue and to keep morale up. They were incredibly successful at that. Victory Gardens were everywhere.

I looked at those posters. They're more important to me now than they are when I first heard about them in History class back in high school. I actually look at them and they make me angry. They make me angry because in World War II, for many, many years of World War II, we were involved collectively together as a country working to solve a particular problem and bring people home as quickly as we possibly could. With COVID, that collective action lasted four, maybe six weeks or so, before things got really, really, really bad.

In the end, I sort of have to ask, is it me? Am I broken? Is public health broken? Public health has always had this thing that we call the Goldilocks Problem. I guess that I call the Goldilocks Problem. I don't know that I've ever heard anybody else talk about it that way. But it's basically where the public and the press say that, basically, public health did too much or they did too little, but they never did it just right. It's one of those things that public health has dealt with for years, and probably will continue to deal with forever. It certainly got exacerbated and magnified during COVID.

I'm starting to try and think about things with a little bit more perspective, though, as well. My wife and I, for our anniversary this past April, we went to the Redwood National Park in the most northern area of California. When you stand in front of those trees, when you look up at them, when you touch them, you realize those trees, they're 2,500 years old. They give you a whole new perspective on time.

Then I think about COVID. I think it's just been four years, just a shade more than four years now since when we really started to deal with COVID. So maybe I just have to give it a little bit more time. And in the meantime, you'll find me at night, walking around with a bag of rocks on my back.

Thank you.