Mortality: Stories about facing death

This week at The Story Collider, we're presenting two stories about confronting death.

Part 1: Science communicator Anthony Morgan receives an invitation to be vacuum-sealed to the bottom of a helicopter -- for science!

Anthony Morgan is the Creative Director of Science Everywhere!, an organisation devoted to adult science entertainment. The mission is to build science culture through engaging science entertainment for TV, youtube and live events. He's also on the board of a makerspace (Site 3 CoLaboratory) and has a recurring segment on Daily Planet. His background is in neuroscience/psychology and science communication, but he fell in love with science working at the Ontario Science Centre. Since then he’s been finding as many ways and places to "mic drop science" as he can.

Part 2: As a medical student, Elorm Avakame befriends a patient who is dying from alcoholism.

Elorm F. Avakame is a Pediatric resident physician at Children's National Medical Center in Washington, DC. He previously earned a Doctor of Medicine from Harvard Medical School and a Master's of Public Policy from the Harvard John F. Kennedy School of Government. He was also a Sheila C. Johnson Leadership Fellow at Harvard Kennedy School's Center for Public Leadership. Elorm is passionate about health issues affecting children in urban communities and wants to make life better for children on the margins.

 

Episode Transcript

Part 1: Anthony Morgan

 Anthony Morgan tells his story at the Burdock Music Hall in Toronto. Photo by Chelsea Humphries.

Anthony Morgan tells his story at the Burdock Music Hall in Toronto. Photo by Chelsea Humphries.

I love science.  I really love science.  I would do almost anything in the name of science so much so that in January of 2016 I was supposed to be in England being vacuum sealed to the bottom of an in-flight helicopter.  You know, science. 

It was a for a show called Outrageous Acts of Danger and their whole thing is they find these crazy insane science videos on YouTube and then they find ways to make them more dangerous. 

I read a review on New York Times about the show that said that Outrageous Acts of Danger makes science life threatening.  So you can imagine my mom was thrilled. 

I didn’t think it was a big deal.  Honestly, I was like, “Mom, it’s life threatening.  It’s not fatal.  There's a difference.”  And I figured like, honestly, there is no one more qualified in the world to do that than me.  So the obvious question there is what qualifies a person to be vacuum sealed to the bottom of an in-flight helicopter and the obvious answer to that question is that that person has already been vacuum sealing themselves to other things. 

It’s a super easy process.  You just need, like I just got garbage bags and just make a big almost-like bed sheet out of it and you seal it airtight around your body and then you use a hose to suck the air out and it will seal you against whatever you’re against. 

So more than once I had done this in downtown Toronto, in the core of downtown Toronto, specifically at about 5:00 on a Friday to a hat shop at the corner of Queen and Spadina.  My goal was really simple.  I just wanted to blow people’s minds with science because I had had that happen for me like more times than I can count at the Ontario Science Center.  If you have not been to the Science Center, you should go.  It’s one of my favorite places on earth. 

I love it so much because it is there that I first really fell in love with science.  It was there that what science was… there's so many exhibits that you've seen there a thousand times and you feel like you know how it works, you know how it goes, you know every little intricate detail of it.  And then somebody can show you something with it that just transforms the way that you see that thing and you realize that the whole world is like that.  That everything, it can be way more than you think it is if you just know how to look at it properly. 

That’s the reason I loved working at the Science Center was that you get to do that for other people.  You get to blow their minds.  That moment when you get to see the world change a little bit in somebody’s eyes is magic, and every time that I got to see it I got to relive that. 

So some of my favorite people to mess with at the Science Center are the people that kind of don’t want to be there at all, like the high school kids are like, “Psh, what are you going to do with science?  What are we doing science for?” 

And then you'll like set them on fire with a Tesla coil and their expression goes from, “Psh… uuh!”  And they're just super excited because they don’t expect it. 

My favorite are people who do not expect to be on fire, because when you set them on fire then and then it’s fine, it’s the best.  I love that feeling.  I wanted to do it again, so that’s if you go to Queen and Spadina at about 5:00 on a Friday you find the place is crawling with people who don’t expect to be on fire. 

So the plan was to see… the experiment was really simple.  We want them to see if I could use atmospheric air pressure to seal me against the front window of this hat shop.  And I learnt two really important things from that experiment.  The first was that, yes, it is more than possible to do that.  The 15 pounds per square inch is more than enough to seal you against the glass in a way that you cannot move. 

And the other really important thing I learned was that that process leaves very little to the imagination.  I did not anticipate that.  If you ever vacuum sealed your fruits and your vegetables, you can see every little dimple and crevice.  I’m not going to get too graphic about it but just use your… don’t use your imagination. 

It was a really awesome experience and, honestly, I didn’t tell anybody that we were going to show up except for the hat shop owners.  But there were probably 300 people that stopped to engage with us and ask questions.  A lot of the questions were, “Why are you doing this?”  Or, “Is someone making you do this?” 

But there were a lot of people who were just genuinely engaging with the science.  It was one of the greatest experiences in my life because I got to watch 300 people’s world change a little bit.  Honestly, it was one of the greatest experiences of my life. 

So I wanted to experience that again, I wanted to feel that again, so I’m back on the phone with my mom because I was talking to my mom about this whole process.  Like she's freaking out about it and I’m like, “Mom, it’s going to fine.  They've got engineers and lawyers working on this.”

She's like, “Why do they need lawyers for?” 

I was like, “Okay, good point.  But they can’t be completely reckless.  It’s a science show.  It should be fine.” 

So I guess she could tell that I was still going to totally do this.  I was going to do it.  And she was panicking and she's trying to save her son’s life so, in a last ditch effort to get me to not do this certainly, pause and think about it, she asked me a question that at the time felt very dramatic but I think is one of the most profoundly important questions that we can ask ourselves. 

She asked me, “Anthony, is this really how you want to die?” 

I had to pause mostly because it’s kind of weird having your mom ask you that in like a threatening way but also because it’s just a really good question.  I mean, one of the inescapable truths of life is death.  We all have a limited time here on earth and we all have to make decisions about how we use that time.  In a lot of ways your death can define you almost as much as your life can, I mean if you think about a person like Martin Luther King or the crew of the Challenger space shuttle.

So what my mom was really asking me is is this how you want to define yourself?  Is this how you want to be remembered?  So I paused because there are like a thousand ways that you could answer a question like that. 

I started thinking about if I died tomorrow, what would people say about me at my funeral?  I figured people would say the normal, the nice things.  He was a nice guy and he really loved science.  He really wanted everyone else to love science.  He never really shut up about science, and he never took off that damn red hat.  I bet you an infection from the hat is what killed him.  It might be nicer than that. 

But I was afraid that that would be it.  That there would be nothing remarkable about my life.  You think about a guy like Neil Armstrong or Muhammad Ali, you just say those names and people know what it is that defines them.  They had these astonishing achievements that could never be duplicated. 

And I was like well, I’m never going to land on the moon.  I can’t be the other guy to land on the moon.  What can I do to be remembered?  I was thinking it was going to be extraordinarily outrageous or outrageously extraordinary because, if you think about it, how many people can name the third guy to land on the moon?  It’s crazy that we can’t think of that.  The guy landed on the moon. 

The first guy lands on the moon and people are weeping and crying with joy.  This is the pinnacle of human achievement.  By the third guy we’re like, “Yeah, this is boring.  We get it.  Okay, we've been there a couple of times.”  So I had this idea in my head like something extraordinary, something to make you famous would be better than just being ordinary. 

One of my favorite researchers Brené Brown, I really like the way that she… she diagnoses it.  She says that somehow in our society an ordinary life has become synonymous with a meaningless life.  I want a meaningful life so I wanted to be extraordinary. 

I want to be the guy in the movies like, “Come on.  Follow me.”  And you'd be like, “Who is that guy?” 

“He vacuum sealed himself to the bottom of a helicopter.  Do what he says!”  I figured that that would make my life meaningful. 

I had something happen to me about a month ago.  It was a really weird experience.  I was standing in my kitchen and tears are they're just streaming down my face.  I know what you're thinking.  It wasn’t sad.  It was actually a really… I was insanely happy.  I was just feeling really happy.  They were joy tears.  And I started just trying to sort of meditate on the experience and it was I was just overwhelmed with this feeling of joy and happiness. 

You know what I was doing?  I was just standing and washing dishes in my kitchen.  That’s it.  The sun was shining into the kitchen and I was wearing a t-shirt, a Disney princess t-shirt that I got from my roommate because all my shirts were filthy and I hadn’t washed any laundry, and I was listening to a song that I just really liked.  I was overwhelmed by the realization that I was happy, that I could be happy, and that it didn’t have to have anything to do with helicopters or explosions or anything like that.  That I needed so little to truly experience profound happiness.  It was such a trip. 

If a defining moment is one that shapes the way that you look at the world and the way that you interact with it then one of my most important defining moments was me washing dishes in my kitchen joy-crying in a Disney princess t-shirt that had big sparkly letters, “If the tiara fits”. 

And learning that we can find meaning in our lives from moments big and small is one of the most important things that I've ever learned, because once you know that the opportunities for finding meaning in our lives they're everywhere.  Who I am, like what a person is is just a collection of moments like those. 

So I’m back on the phone with my mom.  I hadn’t had all that at the time.  I was just still talking to her and I’m like, “You know, mom, I’m not saying no, mom.  I’m going to think about it but let me get back to you.” 

I didn’t ultimately end up doing it.  I did not end up vacuum sealed to the bottom of a helicopter but it’s not that I wouldn’t have, because I still probably I totally would have.  But the weird part is the production company they called me and they're like, “Listen, unfortunately, Mr. Morgan, we’re not going to be able to proceed with the segment.” 

I was like, “I don't understand.  What do you mean?  What happened?” 

They're like, “We can’t comment on that for legal reasons.” 

It’s like, “No, that sounds sketchy.  What does that mean?” 

So faintly off in the distance I could hear the whisper of my mom saying, “I told you so.” 

So if I’m honest today I probably still would do it.  Like if I had the chance to do it, I would be vacuum sealed to the bottom of the helicopter, but now I’m much more clear about the reason why.  And it’s not to be remarkable, because I've learned if you want to be remembered for being remarkable then you're going to have to do something more impressive than being just the third man on the moon because that’s not going to be enough.  But the reason that I would do it is that I still really love that feeling that I get when I get to see somebody’s world change in that little moment.  And getting to share something like that with somebody and connect with them about it, it’s still something that brings me so much joy. 

Vacuum sealing myself to a building in Toronto gave me the chance to work with CBC, and Daily Planet, started my own company and I get to work with a lot of people that I really admire.  And I cannot express how grateful I am for the meaning genuinely that it has brought to my life.  And so if I can’t be vacuum sealed to the bottom of a helicopter, that’s okay.  That’s cool because I can still have just as much fun blowing stuff up at the Science Center or crying in my kitchen.  So, thanks. 

 

Part 2: Elorm Avakame

 Elorm Avakame shares his story at the Oberon Theatre in Cambridge, MA. Photo by Kate Flock.

Elorm Avakame shares his story at the Oberon Theatre in Cambridge, MA. Photo by Kate Flock.

A few years ago I met a woman named Marge.  She had this reddish-brown hair that she cut in kind of like this cute pixie cut that framed her face.  She was about in her 40s or so, although she looked much older than that.  She was really warm and really sweet so the kind of person that you just want to reach out and give a hug, but also really frail so that kind of person that you wouldn’t want to squeeze too tight. 

Marge all in all was an unforgettable woman in my life.  I mean that to say I probably will literally never forget her because she was the first person I'd ever known who knew that she was about to die. 

Marge and I met in the hospital.  I was a third-year medical student and she was my patient, the patient assigned to me.  As a third-year medical student I had to spend two years prior studying medicine in classroom from textbooks and so I thought that I had wrapped my mind around death.  We talked about death a bunch in class.  We talked about what it would be like to lose a patient and how to walk a family through that process. 

Actually, by that point in school, I had seen a person who was dead.  I'd been with a doctor who was called to pronounce someone brain dead and watched as he shone a light into her eyes, eyes that didn’t have any signs of life. 

But this was my third year of school and my first year taking care of real patients and so although I have thought I have wrapped my mind around what death meant, I hadn’t actually known a person who was on their way to dying.  But Marge was.  She told me so matter of factly.  

Years of alcoholism had waged a war of attrition against her liver which was finally surrendering.  She wasn’t eligible for a transplant because she hadn’t been able to be abstinent for the 60-day period required to be eligible, and so she was kind of out of options.  She tried but she failed.  And then so did her liver. 

I was a medical student and so my job on the team was to visit her every morning and to check her vital signs and to do a physical exam, things like pushing in her belly to see if she was in pain.  Being a medical student is a strange kind of existence in the hospital because you are the only member of the team that actually has nothing of value to offer the patient.  You know nothing, you're pretty much just there to learn.  In fact, it’s the patient who offers you value, not the other way around.  It’s the patient who allows you to learn from their body. 

Marge taught me most of what I know about a disease called cirrhosis which is a kind of liver failure that can happen, sometimes as a result of chronic alcohol use.  She had so many of the classic signs and symptoms of cirrhosis.  Her abdomen was really distended, which means really large and full of fluid.  Her skin was permanently staled a dull shade of yellow from the waste products that had built up in her blood.  She was often drowsy because of the effect that those same waste products were having on her brain, and so she would fall asleep midsentence and you'd have to wake her up and remind her what she was talking about so she would finish the sentence.  In many ways, Marge was like a living textbook. 

But of course she was more than a disease model.  She was alive, if not for long.  In fact, sometimes I would forget that she was sick.  Sometimes after we shared a good laugh or she told me a story from her better days, I'd have to remind myself that she was dying. 

I had this picture in my head of what dying people looked like, really old, barely breathing, semiconscious.  Marge was none of those things and that was bizarre for me.  It was confusing and it was frustrating because it felt like she was losing her life because she had a disease that we just didn’t know how to treat yet which had caused another disease that was causing her body to shut down and that just felt so unfair. 

I actually often felt guilty leaving Marge’s room because I felt again like I had nothing to offer her.  She was opening her private space to me.  She, in her kindness, was letting me learn on her body and I had nothing in the way of a cure or even any form of treatment to offer her.  I wasn’t even really a doctor, so I often walked away feeling guilty after having been with her.  But that changed one day when she asked me for something good to drink. 

I should tell you something else about being a medical student which is that one of the most important things to know about the hospital is where all of the snacks are.  This is because the senior doctors have gotten used to going without eating but when you're first starting out you are hungry all of the time.  So I mention not having had any expertise.  I lied.  What I did have was expertise about the snacks, the refreshments, which floors had graham crackers, which floors had saltines and the like.  This is all critical information. 

So when Marge asked me for something good to drink I thought to myself, well, actually I just invented this cocktail out of hospital cranberry juice and hospital ginger ale, which are independently not that tasty but together fantastic. 

And so I said, “You know, I just made this cocktail that I think is pretty good.  I’m pretty proud of it.  I could make it for you if you want to try it.” 

So Marge looks at me and she goes, “Jesus, I haven't had a good cocktail in forever.”  And we look at each other and we’re like we’re not really sure if it’s okay to joke about alcohol given that she's dying from alcoholism, but then we laughed. 

And so now I’m fully in-role.  I felt like finally there's something I can do.  I’m like, “All right, I’m going to grab a cranberry ginger ale on the rocks coming right up.” 

So I go and I grab the cranberry and the ginger ale and I get two plastic cups, fill them halfway with ice.  I find that bartenders do this cool thing where, for some reason, as a bartender when you're pouring drinks, you have to pour it from a really high height.  So I did that thing too.  I cracked open the cranberry juice and poured it from a high height. 

So now we've got both of our cocktails and we grab them and we clink our glass, although they were plastic so it wasn’t much of a clink.  It was more like a thud.  We thudded our glasses and we drank them down.  Just before we drank, Marge says to me, “Cheers, to the good life!” 

So we drank our drinks and I cleaned them out and threw out the cups and everything.  That was the first day that I left her room not feeling guilty.  It felt like I had finally found a way to repay the kindness that she had offered me.  I finally found something in that brief moment of something approaching normalcy that I could give to her in exchange for everything that she was giving me, and it was nice not to feel guilty. 

Our time together went on that way and day after day we developed something of a friendship.  I visited her every morning, which was my job, but then I also tried to spend as much free time as I could with her.  And she told me stories about her life, and she welcomed me in. 

I remember one day I walked into the room and she is flipping through a catalog of dresses.  I asked her what she was looking at and she told me that she was trying to decide which dress she wanted to wear at her funeral.  She would often say, “I’m glad I get advance notice about this whole thing because most people don’t get the chance to make sure that their funeral goes exactly how they want it to.” 

So I sat in my seat next to her bed and we’re flipping through the catalog and we decide on this yellow floral dress because she felt like it went well with her eyes, which were light brown, and I agreed.  To illustrate how bizarre this whole exercise was, neither of us remembered to consider that her eyes would probably be closed during her funeral. 

Our time together went on this way with more conversations and more cocktails and more morbid funeral planning.  Something about the finality of her predicament left me thinking about and feeling that the human weight of medicine and of science more broadly. 

I thought about what it took to gather the body of knowledge that I had come to know about her condition, about the cell biologists who discovered what happens to a liver cell when it’s damaged, about the physiologist who charted the natural course of her condition, about the clinical researchers who were developing treatment protocols and parameters.  I thought about the fact that all of those scientists’ work was passed down through the ages and found its way into my textbooks and eventually into my brain.  And in thinking about that I realized that the highest calling of scientific inquiry is the betterment of human life, that beneath the scientific method is a scientific mission. 

I felt the urgency of that mission sitting by Marge’s bedside because I knew that although Marge would be lost that there would be other patients like Marge whose outcomes could be radically altered by the next discovery or the next one after that.  And as someone who was becoming a physician, this is what excites me about science, that it has the power to cure disease, that it has the power to change lives, that it has the power to turn tragedy into triumph.  I've come to believe that, at its height, science is a service to humanity. 

The last time I ever saw Marge, she was asleep.  I had worked together with the social workers to find a hospice bed to discharge her to, which means that there was nothing left to be done for her in the hospital and so we were sending her to a home to be comfortable in her final days.  I was sad about that but I was also happy for her, in a way.  She was in her last moments but she was living them full of spirit and that felt like something. 

I was sitting there by her bed and I wanted to wake her up because I wanted to tell her one last joke, I wanted to have one last cocktail.  I wanted to thank her for what she taught me which is what it means to walk with someone through their last moments.  But she was sleeping peacefully and peace was hard for her to come by and I thought it would be selfish of me to wake her, so I didn’t. 

But just before leaving her room for the last time, I stood by her bed, I grabbed her hand gently so as not to wake her, and I was standing there trying to think of something to say that would be an adequate farewell.  I couldn’t come up with anything.  Suddenly I realized that there was only one thing that made sense to say.  “Cheers!”