Bodies: Stories about the skin we're in

This week, we’re presenting stories about our relationships with our bodies, in all their shapes and sizes.

Part 1: Born without a right pectoral muscle due to Poland syndrome, John Trumbo has always felt defective, but then he discovers a possible solution.

John Trumbo is a senior healthcare writer with a bachelor’s in communications and a concentration in journalism from James Madison University. He also holds a master’s in nonfiction writing from the Johns Hopkins University. Specialty areas of study included Crafting Nonfiction Voice, the Literature of Science, Essay and Memoir, Review and Opinion Writing, Teaching Writing and more. Professionally, John writes about transforming the care experience with the help of innovative health IT solutions that put patients first. follow him @JohnMTrumbo.

Part 2: Growing up tall and suffering from psoriasis, Emma Yarbrough struggles with feeling conspicuous — but then she discovers there’s more to her unusual height than she’d thought.

Emma Yarbrough is a theater artist, writer, and story enthusiast based in Atlanta, GA. A graduate of Emory University, she just couldn't let go of that liberal arts lifestyle and now serves as the communications specialist for the Arts at Emory. When she's not performing or cooking up a new piece of theater, you can find her wandering the tree-lined streets of Atlanta. It shouldn't be hard to spot her. She's quite tall. @emmayarbs

 

Episode Transcript

Part 1: John Trumbo

I come from a family of baseball players.  My father was a pitcher and he tried to get me interested in the game by throwing balls to me in the front yard, but it never really worked.  I sucked, actually, at anything having to do with upper body strength or coordination.  I actually played on a few Little League teams but anytime I tried to return a ball hit into the outfield it barely reached the baseline. 

 John Trumbo shares his story at Bier Baron in Washington, DC. Photo by Michael Bonfigli.

John Trumbo shares his story at Bier Baron in Washington, DC. Photo by Michael Bonfigli.

It turns out there was a good reason for my lack of performance and enthusiasm.  On an annual physical in third grade, our family doctor diagnosed me as the M&M Man, which stood for Missing Muscle Man.  That’s because I was born without a right pectoral muscle thanks to a congenital disorder called Poland Syndrome.  Poland Syndrome affects about two out of every 100,000 newborns and is three times more likely in boys than girls.  The usual manifestation is a lack of a chest muscle, but other symptoms include webbed fingers or toes.  No one seems to really know what causes Poland syndrome but researchers theorize that somewhere around the 46th day of pregnancy there is a disruption of blood to embryonic tissues that help build the chest wall. 

All I knew at the time was I was different from my male friends and classmates.  As we grew older, their shirts filled out more fully and completely while mine kind of sagged awkwardly down the right side. 

I also began to realize that I was gay, which added to my level of anxiety.  My parents never really talked to us about sex or sexual attraction but we were devout Southern Baptists and I soon figured out, or so I believed at the time, that God really wasn’t cool with two men lying with each other.  But that’s what I believed at the time. 

Nevertheless, I knew I had this attraction to men and the male body.  I remember the old Charles Atlas ads in the back of my comic books where the big muscle dude comes up to the skinny, wimpy guy on the beach and kicks sand in his face next to his girl and his girl is like, “What?”  But the more I began to realize that I wouldn’t have that perfect male body that I sought after. 

That is until I discovered science and reconstructive surgery.  In 1992, when I was 27, in the back pages of a pre-Google research device called the phone book, I found a nearby plastic surgeon whose office was located in a somewhat seedy strip mall and most of the literature in the waiting room was geared at women seeking boob jobs.  The doctor said he had heard of my condition, but my insurance company denied my claim because they considered it just plastic surgery. 

But I kept searching and, nine years later, in 2001, thanks to the internet and a real surgeon at a major university hospital, my new insurance carrier approved my request for chest wall reconstruction with CPT 19340. 

My parents were supportive when I told them of my decision but, frankly, I don't think they had ever thought about my missing muscle since my diagnosis.  Like a lot of things, we just never talked about it.  Nevertheless, my father agreed to drive me to the surgery.

On that morning of the surgery, he and I sat facing each other in the hospital exam room while I waited for my doctor.  I had my shirt off, which is a little uncomfortable.  It had been years since I'd had my shirt off in front of my father.  And he could clearly see the bright sun tattoo that I have on my upper arm now. 

Now, I was uncomfortable revealing the tattoo to him because, as a freshman in college, I got my ear pierced.  Now that’s not such a big deal, but my parents hated it.  They really hated it.  My mom reminded me something what the Bible said about men not acting feminine.  But what was worse is that my dad didn’t or couldn’t speak to me for quite a while. 

The surgery itself went fine.  it was over in an instant, from my perspective.  As I slept someone had indeed slipped a new muscle into my chest but, instead of a soft cushiony implant, it felt more like a boulder someone had put in there. 

A little while later in a private recovery room, my father knocked on the door, poked his head in and said, “How did everything go?” 

And I said, “Fine, I think.  Come on in.” 

He proceeded to tell me about everyone that he had met while he waited for me in the cafeteria.  A nice couple from Richmond, a man from a small town where he used to teach school.  My dad didn’t talk much about his feelings or emotions, but he had this amazing ability to engage you in small talk until it felt like you had known him all your life. 

Later, when I was released from the hospital, he cradled my right arm against my chest as we walked out to the car.  My pain medication was wearing off and we still had a 90-minute drive home and I just wanted to get home.  But my father, being the good southerner that he is, suggested that we stop and get something to eat.  He sees food actually as the great healer and this was his way of wanting to help me feel better. 

But I cringed as we pulled into the parking lot of an all-you-can-eat family restaurant with a line of tour buses circling the parking lot.  My father got us a table and offered to get me a tray of food, but I said I think I can probably manage myself.  But when I came back to the table holding just a bowl of chicken soup and some biscuits, he looked at me with this look of betrayal. 

“What?”  I said.  “I told you I’m not hungry and my pain medication is wearing off.” 

Again, I know he wanted to help me, but he looked helpless, unable and not sure how to reach out to his aching son. 

Once again we filled the time with small talk, missing yet another opportunity to come clean with each other and, more importantly, for me to explain to him why this surgery had been so important to me, something I thought I wanted for thirty-six years. 

Eventually, I discovered that I was missing more than a muscle in my chest, something that an expensive silicone implant with CPT Code 19340 couldn’t fix.  It couldn’t fix this feeling of feeling a little defective or not exactly who or what I thought I was supposed to be. 

Today, I’m out to most people in my life and that’s generally not an issue, but I never came out to my parents before they both passed away.  I always looked for the right opportunity about as many times as I prayed that God would heal my chest, but I knew what they believed about homosexuality and, frankly, I was afraid to risk losing my relationship with them.  But having never revealed my true whole self to them while I had the chance was the real deformity that I'll never be able to fix, fill in or repair.  Thank you.

 

Part 2: Emma Yarbrough

Strangers talk to me about my height all the time.  Seriously, all the time.  They ask me how tall I am and then, when I tell them, they say that I have to be wrong.  That I’m taller than I think I am, which is like why I would lie about something like that I don't understand. 

They ask me if I play basketball and they ask me if I play volleyball.  Every now and then, someone will ask me if I’m a model and I like that kind of stranger.  I even one time had a woman in a Wal-Mart in south Alabama ask me if, “Can I take your picture?” 

 Emma Yarbrough shares her story at the Highland Inn and Ballroom in Atlanta. Photo by Rob Felt.

Emma Yarbrough shares her story at the Highland Inn and Ballroom in Atlanta. Photo by Rob Felt.

I've thought about this a lot and the best way that I can explain it or make you understand from your normal-sized bodies is it’s kind of like when you break your arm or when you have a black eye and everywhere you go people ask you what happened, people are just driven to talk to you about the thing that makes you different, especially if that thing is innocuous like height. 

I've always been tall.  I never went through a huge growth spurt.  My parents say I came out of the womb like a spider monkey, just like all arms and legs.  In my kindergarten class photo, I look like the fourth grader that got lost and wandered into the background. 

As a kid I really wanted to be an Olympic gymnast and I think, under special circumstances, parents have a duty to squash their kids’ dreams.  But instead of telling me that at eight years old I was already taller than most members of the 1996 Olympic team, The Magnificent Seven.  Kerri Strug forever!  My parents let me and my scrawny ass legs struggle against the laws of physics for literal years.  And they let me quit piano lessons when… look at these fingers.  And swim team.  Look at this wing span.  I actually could have been one of the greats. 

I don't know when it was that I discovered that different is synonymous with imperfect, but I have a guess.  I think it was sometime around third grade when mysterious spots popped up all over my body.  A few doctors’ appointments and a biopsy later, we discovered that I had severe psoriasis which is an autoimmune disease.  It’s really common.  I’m sure you've heard of it.  But it’s not usually as bad as it was in my case.  It was incurable. 

Middle school was fun.  By seventh grade I was pushing six feet tall and weighed maybe ninety pounds when wet, and my skin was 75% covered with a disfiguring, red, flaky, itchy, inflamed rash. 

But then in high school, a miracle.  After I had already decided I’m never going to be pretty so I might as well just be smart and funny which, you know, thank God for that, after wearing long sleeves and jeans in the South Alabama heat and bending my knees in school photos as if that would change my reality, all of a sudden this miracle.  Immunosuppressant drugs hit the market and my skin started to clear. 

So I graduated and I made my way out of my tiny South Alabama hometown, where the only thing worshipped as fervently as sweet baby Jesus is normalcy, and came here to Atlanta, to Emory University, where I first discovered theater and the thrill of being visible on my own terms.  You, the audience, are looking at me right now, but you're doing it because I’m choosing for you to look at me, not because I’m the tallest woman you've ever seen.  And that distinction makes a huge difference to me and it makes me feel very powerful in a way that I don’t feel powerful when I’m just walking amongst you. 

So now that I’m older and my skin is clear, my relationship with my height remains complicated.  On the one hand, sure, there are a lot of pros to being this tall.  Also I’m getting old.  I’m comfortable in my skin now, like take it or leave it.  But also when you're tall you can see the stage, at concerts, no matter how far back in the crowd you are.  It’s really useful. 

Tall people, on average, get paid more money, not that I’m doing anything to change those numbers, but it’s nice to know that that potential is there.  And I can reach things.  I’m tall.  No big deal.  You need me to get something, I got you. 

But there are also cons to being this tall.  For one thing, airplanes.  Airplanes are awful.  Right?  Terrible. 

Dating could certainly be easier.  I mean, dating can always be easier. 

And just in general, like while tall people make more money, they also live shorter lives.  Because gravity is harder on us.  A smaller machine is more efficient. 

I really started to first experience these negative health effects of being tall a few years ago when I was in yoga and my shoulder popped out a joint just doing a routine stretch.  A few months after that, I woke up and I couldn’t breathe without this really sharp pain in my chest and I couldn’t stand up straight either. 

I went to the doctor and a chiropractor and found out that what had happened was my rib had disconnected from my spine.  Yeah, I know.  Apparently it was from sitting.  It’s common if you sit in a desk, which I do, and because my torso is so long that hunching over a computer position is more exaggerated and so it stretches those muscles all right. 

The health problems don’t really stop with that.  I’m on immunosuppressant drugs, which are no joke.  My mid- to late-20s have been kind of riddled with mysterious infections.  I had dermatitis in my scalp for some reason.  I had strep throat that went untreated for so long I ended up with scarlet fever.  I had pneumonia.  So I go to the doctor a lot to stay on top of my health and it was at a routine physical this past fall that a doctor first looked at me and asked if I had ever been tested for Marfan syndrome. 

My heart dropped because that sounds serious.  It’s also one of those moments that you always fear like a doctor looks at you with concerned eyes with their head at a very grave angle.  While I’m used to health problems, obviously, and the being on immunosuppressants, that vague threat of side effects gone awry, increased risk of tuberculosis and cancer.  But the closest I had ever actually come to confronting my mortality was the morning after eating a lot of beets for dinner, forgetting that I had eaten a lot beets for dinner, and like looking in the toilet before I went to flush.  I mean like, oh, my God!  You remember it.  It’s fine. 

Anyways, now I’m doing research and I’m finding out that Marfan syndrome is a genetic disorder that affects your connective tissue, which obviously affects your joints, your limbs, making them long and thin.  But it also affects your eyes and your lungs and, most ominously, your heart. 

So now I’m being referred to a geneticist who, exasperated that I haven't gotten an echocardiogram yet, refers me to a cardiologist who orders the echocardiogram that I quietly cry through because it’s actually kind of painful, which I didn’t expect.  The idea that there might be something wrong with my heart makes me feel incredibly fragile. 

But now I’m getting a call from the cardiologist to tell me that my echocardiogram was abnormal and I’m being called in and told that my aortic valve is too large and that I have to go on medicine for the rest of my life to prevent an aortic dissection, which is very scary.  Look it up. 

And I’m being told that my body may not support carrying a child, which is devastating to me. 

Now, I’m being sent back to the geneticist who examines all of these parts of my body like I’m a specimen but never once looks me in the eye, and I’m getting the genetic test results.  The doctor first asked the question in August.  And six months, five doctor’s appointments later, I finally get the answer. 

This patient is heterozygous for… man, I've really studied this.  This patient is heterozygous for something variant, it’s not important, that is pathogenic in the HBN1 gene consistent with a diagnosis of Marfan syndrome.  So there it is.  I have Marfan syndrome.  The FBN1 gene controls the building of proteins that make up your connective tissue and mine basically just has shitty instructions. 

So a lot of things go through your mind when you get a life-changing diagnosis like this.  But me, for the most part, was just like how was I not diagnosed before now?  I have grown up in a doctor’s office.  Amongst all my friends, I’m the person that’s at the doctor the most getting tested the most, getting x-rayed the most. 

When I was younger, my parents were there with me in the doctor’s office and nobody noticed that my mother, who’s a miniature person, and my dad, who’s just average tall, produced this WNBA All Star-sized, Olympian-sized child.  Nobody was like, “Hmm, that’s strange.”  And my whole life it was like this big mystery.  I was like I don't know.  Growth hormones and food, I guess.  Or maybe I’m a superhero.  I didn’t think what if there is a reason that I’m so tall?

I turned thirty through all of this.  I turned thirty somewhere between the doctor telling me that my aortic valve was too big and the genetic test results coming back.  Thirty is a really strange age for… half the people they're like, “You’re so young.  You're just starting out your adulthood,” or whatever.  Then the other half, the younger set are like, thirty is the end of a timeline.  I’m going to go to college.  I’m going to graduate.  I’m going to get a job.  I’m going to get married.  I’m going to have kids.  And then I’m just going to turn thirty and live.  Then I’m going to die.  Then that’s just it, right? 

So here I am, thirty, feeling very young, feeling very healthy but scheduling appointments with cardiothoracic surgeons because, chances are, I’m going to have to have open heart surgery one day, this just doesn’t make any sense to me. 

The thing about it that’s really hard for me to wrap my mind around is this shift from my height being this characteristic that I've worked so hard to be proud of, to feel comfortable about it.  It took a long time, and I got there.  Now, when people ask me, as they do all the time, about my height, instead of, at best, being somewhat alienating, it’s a not-so-gentle reminder of my genetic wiring being out of whack.  It’s no longer a characteristic.  This is a symptom.  It’s an external manifestation of an internal threat. 

So I don't know.  I just found out about this, you guys.  It’s been two months so my ability to reflect on my experience is severely limited.  But here’s what I got.  First of all, I’m incredibly lucky to have found out about this.  About half of the people that have Marfan syndrome they don’t know that they have it. 

There isn’t any warning for aortic dissection apart from them imaging your heart and seeing that your aorta stretched.  It’s not like you start to feel sick and then it happens.  It just happens.  So I could have lost my life in an instant, so that’s lucky.  It’s lucky.  It is.  I promise. 

And also, the thing about it is that I don't have to get heart surgery today.  I don't have to get it next week.  I don't know when I'll have to get it.  All I have to do today is finish telling this story, and I’m almost done now.  So I’m ahead of the game. 

While it’s not an exactly welcome return to what it was like when I was in middle school and I had this health problem that people felt driven to comment on all the time, middle schoolers are really good at that.  Like, “Oh, is that poison ivy?”  Or, “Eww, is it contagious?”  Or just like your general, “Eww,” because they're so subtle.  Yeah, now I’m going back to that existence where people ask me about my height all the time. 

But, the thing is, I have had a lot of time to think about my upbringing and what it was like to grow up in this body that I have.  I know without a doubt that it made me funnier, it made me more creative and empathetic and just generally more interesting.  Like five-seven and with perfect skin sounds insufferable, really.  Like who wants to be friends with her? 

Also, there's one more plus.  There's this fantasy scenario I have.  I don't know if I'll ever have the balls to do it but maybe one day I’m going to have a drink and feel feisty.  And someone is going to come up to me, probably a guy.  It’s always a guy, actually. It’s always a man.  He's going to come up to me and this is what’s going to happen. 

He's going to be like, “Hey, how tall are you?”  And I’m going to tell him. 

Then he's going to go, “No, no, no.  You're not that tall.  You're at least six-four.  Because I’m six-three and you're taller than me.” 

Then I am going to turn to him with ice in my veins, because that’s something I’m on beta blockers now and they block your adrenaline.  So with ice in my veins I’m going to turn to him and I’m going to say, “Oh, God.  I know this is really hard for you, but here’s the thing.  I have a genetic disorder that makes me this tall and I've seen no less than five doctors this year and, each time, they have measured me.  So while I know that you really want to believe that you’re six-three and I’m sorry that this is hard for you to hear but, darling, you’re five-eleven.  And I am six-one, motherfucker.” 

Thank you.