Pro Golfer Morgan Hoffman’s FSHD diagnosis leads him to a higher calling

Contributed by MORGAN HOFFMANN
West Palm Beach, Florida

In November 2016, I was diagnosed with muscular dystrophy, an incurable disease. The last few months have been the most trying of my life. I have a new reality now, and a new purpose.

In 2011, I started to notice that my right pec was deteriorating. I could see it in pictures and in my reflection in the mirror. So I started to seek the help of specialists all over the country, and even several in Canada. That was the beginning of a five-year period of misdiagnoses, frustration, and confusion. I visited more than 25 doctors. While they were “racking their brains,” my weakness progressed, my swing speed decreased, and I continued to lose muscle in my chest. Today my entire right pec is almost gone.

About a year-and-a-half ago, I visited a neurologist in New York City who decided to conduct blood tests. He said that, because he was looking for a specific analysis, the results wouldn’t come back for three months. Six months later, I still hadn’t heard anything. I called my trainer, Don Saladino, and we decided that reaching out to the doctor was the best idea. I hung up with Don and started searching for his number.

But then, seconds after Don and I had said goodbye, my phone started to vibrate. A New York City area code flashed on the screen.

It was the doctor.

“Morgan, the results came back,” he said. “You have muscular dystrophy.”

I was shocked.

“Well … what does that mean?” I asked. “Am I going to be okay?”

“I’m not sure; I’m just telling you the results.”

The rest of the call was pretty much a blur. But before we hung up, the doctor told me one last thing.

“There’s no cure.”

Before I tell you what this will mean for me going forward, I have to tell you where I’m coming from—for myself as much as anything. To be honest, my diagnosis still hasn’t really sunk in yet. Maybe this is just a bad dream. Maybe my pec muscles will just grow back. Those were some of my first thoughts.

I know that I must fully accept this challenge, but doing that is so hard. The reasons why I know I’ll be able to persevere—to conquer the future that’s in front of me—are my childhood, my best friends, my family, my mentors, and my dreams.

Even though my life changed forever that November, that isn’t when my story begins. It starts in the mid-1990s, in my hometown of Wyckoff, New Jersey.

My sister, Heather, and I grew up in a quaint house with a stern but understanding father and a caring, hard-working mother. I often think about our household and feel a sense of nostalgia for my childhood. Our lives were good, and I’ve always had an overwhelming sense of gratitude for the life I was born into.

When I reflect on it, everything was the way it should have been. Going to hockey practice at 5 a.m. on the weekends, baseball practice after school, and golf every other minute of the day. I can’t help but smile when I think about pretending to be Scott Stevens ripping slap shots from the blue line. Or Mariano Rivera striking out a big, mean-looking hitter to win the game. Or Tiger Woods hitting stingers into the net at the gym during golf practice. I made everything I did into a competition, into a game within a game.

At night I’d lie awake dreaming about being a professional athlete—I just wasn’t sure what sport I wanted to play. I ended up playing hockey for seven years and baseball for six, but I found my niche, my love, and my biggest challenge in golf. I loved everything about the game—the mental battles, the challenge of achieving success on my own. I wanted to be just like Tiger Woods, but to have any chance of resembling him, I knew I had to fully commit to the sport. From my junior year of high school on, golf was the only game for me. It became my whole life.

I spent my junior and senior years of high school at the International Junior Golf Academy in Bluffton, South Carolina. I had already won two New Jersey state championships, and going to the academy gave me a chance to compete against the country’s top talent. The warmer climate there meant that I was able to play year round, and combined with daily instruction from my coach Gary Gilchrist, the situation was ideal. Although leaving my sister, parents, and friends behind was one of the most difficult decisions I’ve ever had to make, in my mind, moving to the South was a path to the PGA Tour.

My time in South Carolina propelled me to Oklahoma State on a full golf scholarship. There, I played on a team with Rickie Fowler, Kevin Tway, and Peter Uihlein. You might think that my best memories of playing for the Cowboys are of being an All-America my freshman year and becoming the No. 1-ranked amateur in the world. And yes, it’s true—those are great memories. But what really stands out is when I realized that I had the opportunity to give back to people who were less fortunate than myself. I have all my teammates to thank for that (we constantly reminded ourselves how lucky we were to be playing golf in college), especially Sean Einhaus.

Sean’s mother is from Kathmandu. From Sean I learned of the hardships that many children in Nepal have to endure. While I was getting a free education and the chance to play golf, families halfway around the world were living on less than one dollar per day.

I was flabbergasted.

So Sean and I set up a tournament at Oklahoma State in which we played as many holes as possible in one day. Generous friends and family donated money for each hole we played. We finished 108 holes that day, and luckily we were able to raise enough money to send a number of Apple computers to a school that Sean’s family had built in Nepal. A couple of years later I finally made my way to Nepal and visited the school; it was one of the happiest moments of my life. Seeing the smiles on the children’s faces and experiencing how happy they were was astounding. I wish we had more loving, happy energy like that in the States.

I had interacted with a few local charities in Oklahoma, as well as back home in New Jersey, but this was the first initiative that I had started on my own. I was enthralled with the idea of giving back. I owe that to Sean. He taught me that there was more to life than golf and my own goals.

I worked my way on to the Web.com Tour in my first year out of school. That was when I embarked on my quest to engage with both private companies and nonprofit charities to promote health and wellness for kids in need. In my five years on the PGA Tour I’ve participated in many youth-development clinics around the country, including for The First Tee foundation and the New Jersey Golf Foundation. I also partnered with St. Barnabas Health System and Blue Cross Blue Shield of New Jersey.

Through those collaborations, I’ve had the opportunity to visit children in hospitals, where I have met some of the most inspiring, kind, and motivated young minds. I was even extended the honor to be the starter at the Westfield 5K run presented by Blue Cross Blue Shield of New Jersey.

The children I’ve met who have diseases, terminal illnesses, or disabilities are truly incredible. They’ve taught me so much—how to fight, how to carry yourself, how to treat others when you are faced with a challenge that is beyond your control. Every one of them has one thing in common: happiness. They are why I want to give back. Even with all the stresses and hardships they experience every day, they are still able to find an uplifting smile and a contentedness with life. Fighting and never giving up is in my blood. No matter what happens to me, I will never stop doing everything in my power to make the lives of those around me better and to make the future healthier and brighter.

Since I earned my PGA Tour card in 2013, I haven’t really spoken publicly about my involvement in these organizations, but it’s truly been a passion of mine. I like to keep my personal life private—I don’t have as many Twitter or Instagram followers as some other players on the Tour, and I definitely don’t post all the time on social media about what I happen to be doing at any given moment.

But today I’m emerging from behind the scenes. Not because I want to talk about myself necessarily, but because I hope that by doing so I will be able to help find a cure for the disease that I and thousands of others are afflicted with.

The first thing I want to do is bring attention to our way of fighting. By our I mean the team I am lucky enough to be surrounded by. Don Saladino, one of my best friends, is both my health-and-wellness coach and my mentor, and has been the driving force behind my new way of life. He trains me to be an athlete, and we treat my body as if it were a machine. Everything that goes into it must have a purpose, must provide a benefit. My diet consists of all organic food, lots of water and vegetables, good carbs, and protein, and no dairy, gluten, or soda. My belief is that if you feed your body right it will run clean.

I’ve researched so many cases of people with diseases who made extreme overhauls of their diets. Often the changes they make halt and sometimes even reverse their symptoms. I know that there is no guarantee that anything so dramatic will happen because I am eating better, but I want to give myself the best possible chance of beating MD. And to do that, I’ve completely changed my way of living.

In my case, my muscular dystrophy is currently causing my right and left pecs to atrophy. Where the disease will attack next, I’m not sure. The characteristics of this specific type of MD (facioscapulohumeral muscular dystrophy) are atrophy of the chest, back, neck, arms, and sometimes legs. Each case is different, and some muscles degenerate more quickly than others. As of now, the disease has progressed slowly—only the right and a minimal amount of the left pec have deteriorated since I first started noticing an issue six years ago. Doctors are searching for a cure, conducting stem cell research, and experimenting with growth hormone treatments. I’m hopeful that they are on the right track.

As you might imagine, I often reminisce about the days when I used to play every sport in the book, when I was just a kid and didn’t have a care in the world. Now, I try to live every day to the fullest. I have so many hobbies that I love: paddleboarding, surfing, fishing, boating, working out, watching my massive puppy grow, playing hockey, and flying my own plane. I also recently helped start a clothing company with one of my best friends, Charlie Schaefer. It’s called Greyson. I love doing anything that’s active, fast, and adrenaline packed. And the thought of possibly not being able to enjoy an active lifestyle is extremely scary.

But I believe now that this is why I was put on this Earth—so that when a child is diagnosed with muscular dystrophy, there will be a cure; there will be people to help with mental, nutritional, and physical training guidance. And especially so that no disease will ever hinder a little boy’s or girl’s passion for life.

Even though the type of muscular dystrophy that I have doesn’t pose an immediate threat to my life, there is a good chance that it will shorten it. I don’t know when that will happen, because there’s no way to gauge the speed at which the disease will spread.

But please know this: This disease won’t keep me from achieving my dream of winning on the PGA Tour—and it shouldn’t keep others from chasing their dreams, either.

My girlfriend, Chelsea, has definitely been my biggest supporter throughout this entire ordeal. After I was diagnosed, she and I scrolled through pages and pages of Google search results for muscular dystrophy. We tried to gather as much information as we could about prognoses and new treatments. Most of the technological advancements we read about were actually pretty exciting. But we also ran across something that we both found incredibly sad.

We found countless blog posts in which people were describing symptoms almost identical to mine. They seemed to be, at their core, cries for help.

These people had no idea what was wrong with them.

Muscular dystrophy is very difficult to diagnose. And when the disease is properly identified, those who suffer then have to confront the financial burden of paying for treatment from the few specialists in the field.

It’s a difficult outlook.

I am determined to help make a difference. I cannot wait to start raising money and awareness to fight this disease! Soon, I will be announcing the date of a charity golf event that I will hold at my home course, the Arcola Country Club in Paramus, New Jersey.

Speaking of the Arcola Country Club, it’s kind of strange how things come full circle. Because lately, one memory in particular keeps coming back to me. It was in 2010, after I had just finished my junior year at Oklahoma State. I was walking down the ninth fairway on a perfect, 73-degree cloudless evening at the very club at which I will host my charity golf event. At that point, I knew I was going to be turning pro, and I knew I had the rest of my life ahead of me.

As I looked up at the green, I caught the setting sun through the trees and could see it beaming on the clubhouse perched on its hill. You know how when you just see the most beautiful thing in the world, and even if your mind has a million things to say, you can’t really find the words to explain the picture? It was like this sunset had pulled me out of my body, and I could see myself looking at it. I began to breathe deeply, filling my lungs with oxygen.

I thought about my childhood, running around Wyckoff without a care in the world. I thought about how lucky I was to have gone to both the premier high school and college for golf. I thought about the tournament that Sean and I had hosted for the kids in Nepal.

I thought about how my life was going just as I had always planned—and how I was about to become a professional golfer.

Most of all, I thought about how I had it all—my health; an amazing, loving family; incredible friends; and the chance to play a game I love.

And as the sun continued to set, the feelings of gratitude flooded in like rushing water. I gazed around and took a few more deep breaths.

I was so damn lucky to experience this life.

I was so damn lucky.

And today I know that I am so damn lucky. Because I’ve found my calling, and it’s one far beyond golf.

Editor’s Note: Morgan Hoffmann is a professional golfer. Originally published on The Players’ Tribune, December 4, 2017, this essay (“So Damn Lucky”) is reposted with permission from https://www.theplayerstribune.com/morgan-hoffmann-pga-tour/.