The MHE Research Foundation:  8019 Harbor View Terrace, Brooklyn, NY  11209

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­From Patient to (Student) Physician By Vinny Eaton

A kid from Brooklyn trying to navigate his way through med school while having to overcome physical and mental challenges along the way.

Prologue: In the past, whenever I’ve written articles or given a speech I mainly focused on the physical toll that MHE takes on me and others affected by it. In this article/essay/whatever you want to call it, however, I want to expand the focus to the overall experience of growing up with a chronic illness to include everything: the mental and physical struggles that come along with it and how this all has shaped my life, my perspective, and my future aspirations. Buckle your seat belts, because you are in for a long ride. Enjoy!...

 

Chapter 1 (of 1 lol): Growing up as someone with a chronic illness is pretty interesting, to say the least. My normal was quite different from the “normal” that most kids experienced—in fact, my normal was not really normal at all. But outside of my medical challenges, I was just your average goofy, nerdy, and to be honest, really awkward kid throughout my life. I enjoyed hanging out with my friends and family, going to the park after school every day, and anything and everything that had to do with Pokémon cards. I don’t mean to brag, but I was pretty much a big deal in the Brooklyn Pokémon Trading Card Game Tournament realm (just kidding, I got wrecked at every tournament that I went to). But as much as I would love to go on and on about my glory days as a real-life Ash Ketchum, I must digress to the actual focus of this article: how growing up as a patient my whole life has inspired me to traverse the exam room to the other side of the table and train to become a physician, and all of the physical and mental struggles that I have encountered along the way; my “medical memoire”, if you must (but I thought that might have been a bittttt too corny).

 

To start, I am just going to give a background on myself and my history before I delve into anything further. At about 7 months old, my parents noticed the first of countless tumors on my ribs and, after numerous doctors and second (and third and fourth and fifth) opinions later, I was diagnosed with a rare bone disease called Multiple Hereditary Exostoses (aka MHE for short). MHE causes numerous cartilage-capped tumors to grow from head to toe and, I have this disease to thank for over 200 tumors, over 30 surgeries, and cancer all by the ripe age of 24 years old, even though by just looking at me most people cannot even tell (granted, everyone is just distracted by my devilish good looks but that is neither here nor there).

 

Despite my apparent normalcy, my childhood was pretty much everything but. Growing up, I saw doctor after doctor and got image after image after image. Not a month went by without some sort of appointment, imaging, and/or surgery related to my disease. However, as a child, I weirdly enjoyed the routine—I simply did not see any negative in all of this because it was a foolproof excuse to get out of school for days on end (even though I am a self-proclaimed nerd now, back then I despised going to school). On top of that, constantly being in and out of hospitals gave me plenty of opportunities to guilt my parents into letting me get McDonald’s chicken nuggets and apple pie more often than any human should be legally allowed to. So, needless to say, I thought I was living the life.

 

In reality, however, while living the #nuglyfe did have it perks, it was just a way to distract me from what was really going on. Because of MHE a large part of my childhood was taken away, spent in the waiting rooms of doctor’s offices and in hospital gowns waiting to be wheeled into the OR, and growing up so deeply integrated into this hospital ecosystem thrust me into the depths of the medical realm from a very young age. Although I was a bit scared of having to go to doctor after doctor, seeing everything that they did for me day in and day out ultimately turned them into heroes in the eyes of young Vinny. Whether it was being a friendly face to talk with my parents and me about the latest medical problem, removing tumors to help alleviate some pain or mobility problems, or just being a support upon which my family could lean on, my doctors were everything to us. As a child, I looked at this whole experience pretty much as my own kind of Marvel movie. In my head, MHE was the evil villain, my doctors were the heroes sent to vanquish it, and medicine was their weapon of choice. They saved me from the pain and suffering caused by this evil villain time and time again, able to wield a scalpel as if it were some magic wand from a faraway realm. Having grown up around these magical healers, becoming a doctor was just the next step in what became a natural progression for me. These wizards were able to alleviate my suffering with a flick of their scalpel and I could not wait to one day join their mystical ranks.

 

As a patient, I learned a lot about myself and my body. The human form is so complex and self-sufficient. There are so many working parts that it is a miracle that things go right as often as they do. Yet despite its near perfection, the body cannot escape the natural chance of error and, having learned this firsthand through my disease, my interest in medicine and how the body worked was piqued from the start. Having been treated at some of the country’s best orthopedic centers, I met some fascinating people just while sitting in the waiting room waiting to be called in, ranging from a 4-year-old girl with an external fixator screwed into and around her leg like a pair of steel jeans to a 10-year-old boy with an arm almost 18 inches too short. The people I met and things I saw throughout my time spent as a patient really exposed me to a huge range of different diseases, and it got my heart from the start—hook, line, and sinker.

 

Throughout elementary and high school, I was absolutely fascinated by biology, the human body, the way it all worked, and where things went wrong. This fascination was ultimately the spark that ignited my desire to enter the field of medicine, a desire that only grew stronger with each passing year, with each passing tumor that sprouted its annoying little cartilage-capped head, and with each passing surgery. I received my undergraduate degree in Biology followed by a post-baccalaureate program where I took medical school level classes, and I loved every second of it—besides physics, who needs that ~disorder~ in their life #amIriiiight. My love for science further confirmed to me that medicine is the right field for me and, armed with a background deeply entrenched in the sciences and a passion for helping others, I applied to medical school in the summer of 2015. The road to medical school had officially begun.

 

After graduation from college, the post-bacc program, and about 7 months of working in an immunology lab at MSKCC on January 19th, 2018, the day I have been dreaming of my whole life arrived. It took a bit longer than I anticipated, but after a lot of work, tears, stress, and more tears (plus an extra application cycle or two) my dream finally became a reality. During a morning bathroom break at work, I got a little beep on my phone. The notification was a new email from Creighton University School of Medicine and I started to have ~premature ventricular contractions~ (aka my heart skipped a beat). “I’m not supposed to hear back until next week! Ugh why did they have to reject me today and ruin my weekend? How selfish of them. I hated Nebraska. Midwest nice? NY mean is better anyway. Go Cats”, I thought. To my happy surprise, I opened up my inbox and saw the subject: “CUSOM Offer of Acceptance” and I. Absolutely. Lost. It. I screamed “GAHHH” at the top of my lungs, burst out of the stall, and sprinted out to tell my boss the good news. After stumbling through my words, putting in a notice that I was going to quit very soon, and ugly crying in front of him out of pure joy, I was off to celebrate getting the news that I was so patiently waiting for my whole life. It was surreal: I did it, I was going to be a doctor.

 

Fast forward 8 months to August 1st, 2018 and I have finally arrived for medical school orientation. “I MADE IT!” was going through my head for like 3 days straight, repeated in my head over and over again like the Baha Men yelling “Woof! Woof, woof, woof, woof” in their smash hit Who Let the Dogs Out. It truly was a surreal experience and I was absolutely THRILLED to be there. Needless to say, I was living the good life. I went through the following year in a daze and boy, did that first year kick me in my gluteus maximus. I felt ALL of the things this past year and emotions came just as fast as they went: I was constantly humbled and amazed by the things we were learning, then stressed like no other because I could not learn even a quarter of the things we needed to learn in time (lol shoutout @anatomy), then back to being elated to be in med school, then to being sad to be away from home and frustrated and depressed because of my medical problems, and then back to being happy as hell because of the amazing group of friends that I luckily stumbled upon at school. At any given moment this past year, I was feeling a combination of all of those emotions. If I had to give a name to the emotional rollercoaster that this past year has been, I would have called it Kingdom Ka-whatthehellisgoingon, but I honestly would not trade my ride for the world.

 

This past year has been, surprisingly, the most fun, enjoyable, and fascinating year of my life. Although it took some adjusting to get used to the Midwest, I felt right at home. Who knew people could be nice and genuinely smiling all the time, even those taking your order at Taco Bell? **DISCLAIMER: This article is not sponsored by Taco Bell but if any TB execs happen to see this and want to sponsor me hit me UP** Yes, it was a lot of studying and it was very stressful to get through at times, but I was lucky enough to have an awesome class and a very fun, social group of friends that enjoyed a nice Bud latte or two after a long week of studying as much as I do.

 

Despite the fun I had, this year has also been one of the darkest years of my life. If you were to ask anyone that knows me, they would probably describe me as the happy-go-lucky kid that was able to dive deep into the trenches in daunting battles against disease and come out on the other side unscathed. But in reality, there are times where I have never felt farther from well and this has happened more times than I would like to admit during M1 year.

 

This past year has been very rough both physically and mentally and honestly has been the worst, most stressful, and darkest time that I have ever faced and I felt like it is time to address it. The more comfortable I get with my own struggles, the more I feel like mental health is something that should be talked about in the open and the more I feel like it may be able to actually help. It seemed taboo to mention my struggles to most people because I was afraid they would just look at me as crazy, get awkward, treat me differently, or a combination of all three. It was not necessarily the shame or fear inside me that prevented me from saying anything, but rather the stigma inside others, and this simply is not the way it should be. So I am going to lay it all out on the line in the hopes that it makes people more comfortable to talk about their mental health with me, and vice versa, and hopefully help me clear things up in my own head a bit in the process.

 

So as previously mentioned, MHE really did not affect me too much growing up outside of the physical manifestations of the disease. But as I get older, there are mental struggles that are thrown into this wonderful mix that stem from my battles with chronic illness. I have started to realize the true impact of my disease and, quite frankly, it scares the hell out of me. Questions race through my mind daily. Some were small: What if I go to my intramural volleyball game tonight or go on that trip with my friends this weekend and my hip locks up? Will it cause a limp? What if people realize what is going on and start treating me different? What then? Some were a lot bigger: What if I have biological children and they inherit this disease? Will I be able to live with myself passing this disease on? Are there any tumors growing? Oh yeah there’s one on my foot, is it big? How much has it grown in the past month? Shit, it’s getting bigger. Is it malignant? Will it stop growing soon? Will these damned tumors ever stop coming in the first place?

 

That last question is something that is a permanent fixture front and center in my mind, like those big, bright, ugly chandeliers that you see flickering in horror movies, swaying due to a mysterious, ominous breeze. Throughout my childhood, I was always told that by the time I was 18 or 19 years old and I stopped growing, the tumors would stop growing as well; but here I am, 24 years old and finding new tumors every few months (and God knows my 5 foot 6—and ¾ inch-tall self stopped growing YEARS ago). The most recent problematic one that popped up was a growth on the bottom of my foot, bringing with it the pain and frustrations associated with walking around with a walnut-sized rock in the bottom of your shoe right at the arch of your foot for nearly a year. This new one knocked me off my literal and proverbial feet, time and time again.

 

Although it may not make sense to most, and as I write it I realize how ridiculous it must sound, but sometimes if a bump is particularly worrisome to me, it can take on a personality and aura of its own. “My friends and I are never leaving you, we’ll be around for the long-haul”, the tumor would insinuate, taunting me with each and every step I would take. I was being mocked relentlessly in my own head, with my sanity and mental well-being held hostage by the pain and the thought that the problems caused by MHE will never end. How do you silence such a voice? It’s simple, go in and have another surgery to remove it. At this point, it is a routine: have pain à find tumor causing said pain à have surgeon cut out tumor à hope for hot nurses around my age during recovery from surgery à never have that hope realized à go to PT for a bit à wait for the next tumor. But how do you silence this voice when you cannot afford to take the time off from school or life to take care of these tumors anymore? That answer is also quite as simple: you can’t. This incessant voice is something that, as I get older, gets louder and louder, weighing more and more heavily on my mind and, at times, is something that I feel like I will do anything to silence.

 

As an adult, it is hard to find time for surgery and rest days because now, instead of just missing lessons on nouns and state capitals and counting to 30 in Spanish, I am missing things that actually matter and things that I cannot make up for. My life does not accommodate for any bumps in the road anymore, and all of this really takes a toll on me. Pain, fatigue, and stress from MHE can really start to limit your daily activities, whether it be the physical restraint of not being able to exercise to release stress or the mental restraint of putting you in a bad mood to the point where you isolate yourself to avoid others seeing past your façade. After a while, it took a toll on my mental health and that is the precise point at which it became a problem for me.

 

So when I say that at times it can become a problem, that statement may be a little vague and hard for most people to really relate to. So, I came up with a little analogous scenario to sort of paint a little picture of this feeling. So here we go:

 

It’s a beautiful, hot, sunny day out; 75 degrees, no humidity, and not a cloud in the sky. You want to do something outdoors since it’s finally the start of summer but don’t really want to deal with your annoying kids or your family or friends. So to take advantage of this perfect weather, you decide to sneak out early in the morning and go out for a ride on your boat alone: it’s a twin-engine, 33-foot speedboat that you just got that you named “Usain Boat” and, as the late Steve Irwin would say, it is gaaaaawgeous. Ahhh, how nice, right? You get out into the bay and the water is as calm as you’ve ever seen it. You think “Wow, this water’s like glass”, and decide to push it a little bit to test out those twin bad boys—they were built for speed. You go a bit faster and a couple miles farther than you normally do, past the bay and into the ocean, feeling the wind in your face and the sun on your back. “This. Is. Perfect,” you think to yourself.

 

Then about 20 minutes into your cruise, you start to feel the boat hesitate a bit out of nowhere; one of the engines starts stuttering, makes a weird loud pop, and abruptly gives out. “S**T! Well, okay, I don’t need to call anyone quite yet, I still have one more engine running, right? I don’t want to worry anyone else. They’re all probably asleep anyway. I’ll be alright,” you think. You decide to push it a bit more. You test out that lone engine and go even farther out into the ocean, determined to let nothing ruin your perfect day out on the water.

 

Another 30 minutes go by and things are going alright. At this point, you are really, really far out, to the extent where you no longer have service on your phone or your radio. That “Cool Clean Vibes, man” playlist you were rocking out to on Spotify stopped because you were too cheap to spring for that Spotify premium account—you spent it all on Usain Boat. Then all of a sudden, you hear the second engine make that ever-familiar stuttering sound, a pop, and then it gives out, too. “Wait what, that wasn’t supposed to happen. This boat is brand new. I pimped it out, its top of the line. Why is it giving out on me??? This weather’s great. This was supposed to be a perfect day. What’s going on here?”, you think. You are stuck, stranded out in the middle of the ocean alone with no lifelines while everyone is back on shore, thinking you are just fine and comfy in your cozy bed, not even imagining the turmoil that you are in. “Why couldn’t you just stay closer to shore? You could have easily called someone and reached out for help if you didn’t go this far out. Idiot, now you’re screwed!”

 

To make matters worse, after a few minutes, a dark cloud starts approaching fast. It begins to thunder and rain like no other—the kind of thunder that no number of Thunder Buddies and no amount of Taco Bell could help you get through, and the kind of rain that could fill an Olympic-sized swimming pool in seconds. Your boat, built for speed and not storms, starts to take on a little water as the rain starts to get even worse. Thankfully you were smart enough to bring a cooler with you to keep your Bud lattes cold, so you dump out the ice and drinks and start using the cooler to scoop the water out of the boat. For a little while, you are able to take advantage of all those arm workouts you’ve been doing and dump water out of the boat as fast as its coming in—you are juuuust able to manage. You start to think how maybe, just maybe, you can just wait the storm out and hope that, somehow, at least one of the engines magically starts up again and you could head home.

 

But after a little while, Poseidon is like “Na sorry bruh”, and the storm gets worse and worse and, to top it all off, your arms start to cramp up because you are so dehydrated—you’ve drank nothing but Bud lattes all morning. So little by little, the water level rises inside the boat cabin until it floods over into the cockpit. It is getting bad. Simultaneously, the storm progresses even further and the ocean swells are starting to get bigger and bigger and bigger, but you fail to notice because you are too busy desperately trying to keep your boat afloat from the torrential downpours. You are so preoccupied that you do not even think to put on a life jacket just in case things get even worse and, soon enough, the swells grow big enough and flip the boat. You are thrown off the boat into very rough waters without even as little as a life jacket to save you. You are all alone, being tossed around in a violent sea, with no one else even knowing that you are gone. The perfect day that you were so excited about merely moments ago turned out to be the perfect storm.

 

Sometimes, I am in a scenario similar to the one stated above: I’m out enjoying the beautiful weather without a care in the world and then boom, the engines start stuttering and a dark, heavy storm rolls in. Sometimes, both engines go out simultaneously, but other times not at all. Sometimes the storm comes in and flips my boat within seconds, but other times I am able to wait the storm out safely and get to shore. Sometimes, I do turn back after the first engine goes down and I am able to call and get help, but other times I am so busy trying to figure out why that first engine went out myself that I forget I even have a phone to reach out. Sometimes, I am lucky enough to have woken some people up to take the ride with me and there are people on board when these complications start to arise, but other times I am all alone. Sometimes, I am able to remember to put my life jacket on and ride with the waves until the storm passes, but other times, I am tossed off the boat without one, left to toil in the violent sea, being tossed about until I am ultimately too tired to battle the cold waves as they effortlessly whirl me around in their wake and ultimately pull me under.

                                                                                 

Before medical school started, I would never have said that I struggled with my mental health—or at least if I did, I never fully acknowledged it. Both engines were always seemed to be firing on both cylinders. However, being around people that are dedicating their lives to helping others has somewhat normalized talking about mental health—a notion made even stronger by the broader, modern societal movement of progressive acceptance and normalization of mental health issues that has occurred in recent years. Throughout my life, I have never really been one to outwardly show or admit that I am struggling with absolutely anything, whether it be physical pain or mental struggles caused by MHE or figuring out how to do laundry for the first time (RIP to about 45 cotton sweaters). I don’t think I feared the stigma that surrounds mental health or the shame associated with it; I have always just been too proud. “I can get through this, I’ve been dealing with this stuff my whole life. I’m fine. I got it,” I would say to myself. But this past year has taught me that recognizing your struggle is the first step in overcoming it and writing this has helped prove this point to myself even more.

 

Although I am far from getting beyond my problems, and there is a good chance I never fully will, I have been able to make progress in coping with them, and that is something I am proud of. Whether it be finding some sort of creative outlet to detox myself of negative thoughts—like writing this—, talking with a family member or friends about what is weighing on my mind (something that I will admit I am very, very bad at), talking with a professional, or doing absolutely anything else that helps put my mind at ease, I have been making a conscious effort to seek wellness.

 

This past summer, I lived in Florida to have another surgery and to do research with some of the surgeons that have operated on me in the past and it was a truly humbling experience. But outside of work, I spend plenty of time alone pondering life’s questions which at times put me into a little bit of a mental hole. Struggling with something while being physically isolated hundreds of miles away from family and friends does, in fact, make the storms a little bit worse when they roll in. However, this summer has taught me that if you look hard enough, there is always someone or something that can help. These past 7 weeks have forced me to be more proactive about my mental health and about figuring out ways to cope that really, truly work for me so that even at times when both engines go out and the boat is flipped, I can stay afloat and learn to ride the waves until the storm clears up.

 

Through my struggles with illness, I have learned that there are always going to be bumps in the road that everyone faces no matter what. Those bumps could be a chronic disease like MHE, anxiety, panic attacks, some other mental or physical illness, or even just a bad day at work. But the fact is, these bumps in the road are just that: little bumps. They are struggles and obstacles that may be rough, but they are preceded and followed by smooth paths which are the lights at the end of the tunnel, the calm before and after the storm that can give us hope that tomorrow can and will be a better day.

 

Throughout my life, I have actively fought back against my physical problems caused by MHE. Back in 2006, my family and some other families affected by this disease started the MHE Research Foundation. The goal of our Foundation is to raise money for research to cure MHE, spread awareness of the disease, and advocate for families suffering from it. Through the MHERF, a lot of progress has been made in research for the cure, culminating in a clinical trial for a drug called Palovarotene that is essentially a cure for young MHE patients that have not had much tumor growth yet. This drug ultimately slows down and can even fully halt the growth of these tumors, preventing any of the pain and immobility associated with their growth. It really is a dream come true because, if this were to be approved and go to market, it would mean that everyone suffering from this disease will no longer have to worry about any bumps popping up ever again. To make it even sweeter, as I transition into adulthood and eventually have my own children, it means that I can do so guilt-free, not having to worry about passing on the pain and suffering caused by this disease to my children. So thankfully, a lot of progress has been made in the realm of treating these tumors and that is something that I am very grateful for. But as I now get older and the physical problems caused by MHE (hopefully) begin to plateau, I now have to address the mental toll that it has taken and feel as if writing this article is a great platform from which I can start doing so. This is my starting point.

 

Through my experiences with the Foundation, through different support groups online, and through this summer spent doing research at the Paley Institute—which treats the largest MHE patient population in the world— I have had the pleasure and privilege of meeting countless MHE patients. Although statistically MHE patients are 1 in 50,000 and are therefore quite rare, I would have to say that encountering someone with as much fortitude and strength as some of the patients I have met is 50,000 times rarer. We are some of the most unique, some of the strongest, and some of the most resilient people out there. Although at times dealing with tumor after tumor and surgery after surgery and all of the associated frustrations can feel very isolating, it is also something that can bring people together and help form a community like no other. For my fellow MHE patients that may be struggling with these bumps—in both the literal and figurative sense of the word—I want to end with this one message: we are stronger than this disease and it in no way, shape, or form defines us. We define who we are and how we handle these struggles. We can weather the storm, no matter how long or how brutal it may be. We will fight, we will adapt, and we will overcome. We are warriors.

 

Epilogue: You made it to the end! Congrats and thank you for sticking with me through the whole thing. Before I end this, however, I want to mention a few things that bring it all together. I don’t want you to leave this believing that I am perpetually suffering in silence. I am blessed to have an amazing family and a social support base that I know I can rely on 25 hours a day, 8 days a week. I absolutely LOVE my life, for real it’s pretty awesome. I am thrilled that I have been given the opportunity to be an active part in the fight against MHE and I do NOT let this disease keep me down in any way. However, there are times when it is hard to see how great things truly are, and in these times I really struggle. But my struggles have also made it even more evident to me that I am not alone, and I felt that sharing my story—my full story, this time—could help others struggling with MHE or mental health or anything else realize the same thing. I hope that people who are struggling can muster the courage to reach out or find their thing that helps them weather the storm. I hope more people find their voice and put their story to paper, too. At the very least, I hope my subtle attempts at humor caused a chuckle or two albeit I know most of my jokes were cornier than the University of Nebraska’s mascot—if you do not know what it is, look it up. But overall, I wrote this essay to speak up, to own my struggles, to be open about them, and to remind myself it is okay to ask for help. There is a light at the end of the tunnel. With hope on our side, it is impossible to break the human spirit.

 

Ride the wave.

 

-Vinny Eaton

vincent.eaton.1194@gmail.com