After Five Years I Asked My Friend About Her Disease. This is Her Story.

After Five Years I Asked My Friend About Her Disease. This is Her Story.

When someone asks you what does your life look like in two years?, most of the time it’s difficult to answer – Where will you live? What job will you have? Will you be married and have kids? Life is one big question mark. But when I asked Sarah McGovern what her life would look like a few years ago when we were teammates on the rowing team at the University of Virginia, horses were never on the radar – simply a dream that lingered patiently in the back of her mind.

Sarah and I have known each other for over five years. Our first encounter was on the sidewalk of ‘the Corner’ in Charlottesville, Va. – the hot spot where all the students congregate for a night on the town and a quick bite to eat. I was a first-year at the University of Virginia and she was on an official visit for the rowing team checking out the school – a short weekend trip from Philadelphia where was she taking a year off following two years studying at Northeastern University. My first impressions were this: she was a small, blonde girl full of personality, but her voice sounded weird. Little did I know she was enduring a lifelong disease that impacted her every day and made me realize how much I take for granted. Sarah had cystic fibrosis.

"...the doctors are typically wearing gowns, masks, and gloves. You literally feel like you’re some alien, [...] you learn to just roll with the punches."

The next season, Sarah was my teammate. Standing at 5’3”, she was a fresh face on the team and was looking to make an impact. Sarah trained hard, never complained, and worked her way up to be one of the best coxswains on the team – the person in the front of a boat who steers and directs the race. Sarah was one of the coxswains who most impressed me during my time at Virginia because nothing ever bogged her down in her pursuit of excellence. When we’d have 5:45 a.m. practice on Monday mornings, Sarah was up at 4:00 a.m. to complete breathing treatments. When my fellow rowers and I complained about the early wake-ups, we had no idea that Sarah was up even earlier to make sure she could breathe well enough during practice.

During her first season at Virginia, she coxed the varsity four to win the Atlantic Coast Conference Rowing Championship and was recognized as a Collegiate Rowing Coaches Association National Scholar-Athlete. Her second and final year at Virginia is when she hit her stride. At the National Collegiate Athletic Association (NCAA) Championships – the pinnacle championship race for collegiate rowing – Sarah coxed the second varsity eight to a third place podium finish. Following her graduation, Sarah and I fell out of touch, but I quietly followed her on Facebook as I soon discovered our shared passion for horses.

Understanding the Prognosis

When I found out Sarah had cystic fibrosis, I felt as if it would be inappropriate for me to ask questions – like a secret that no one was allowed to share. I had heard through the grapevine that it landed her in the hospital occasionally and she had to do hourly treatments in the morning to clear her lungs, but I never fully understood the impact it had on her life. When we finally talked about it, this is what I learned.

Sarah was diagnosed with the disease at three weeks old. It’s a genetic disorder where her body produces a lot of mucus but doesn’t produce the water that helps dilute the mucus. Because the mucus doesn’t flow freely as it should, it gets really thick and eventually is caught in her lungs and airways. As a result of the buildup, Sarah is prone to infection, which lands her in the hospital if it's not taken care of immediately.

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Sarah shared a video with me of what her voice used to sound like to what it sounds like now, which is raspy. In combination with shouting while coxing and coughing up mucus, the nodules on Sarah's vocal cords have popped. This left her with rips and holes, causing her voice to sound deep and hoarse. What surprised me most about Sarah and her battle with cystic fibrosis is that there is no battle. Although there have been breakthrough medical treatments that have added years to people’s lives, there is no cure for the disease.

“Once you have enough infections, you get a lot of scar tissue and eventually the scar tissue becomes essentially non-working parts of your lungs. So you lose lung function every year,” Sarah explains. “Luckily, I have a mild strain called Delta-F508. I’ve been very blessed that I have a mild version of it, but my current baseline of lung function is about 70 percent. I don’t have terrible lung function, but when I do get sick – if I have the common cold, I get a higher mucus production – and if I don’t eliminate it right away, it can last for a couple of months and put me in the hospital because the infection festers.”

When she does land in the hospital – which inevitably happens a few times a year – Sarah is treated with strict guidelines and precautions by doctors, as is standard for patients with cystic fibrosis.

“All the doctors are typically wearing gowns, masks, and gloves. You literally feel like you’re some alien. You’re not allowed to leave your room unless you have a mask and gloves on. It’s really sad but you learn to just roll with the punches.”

Sarah does more than just roll with the punches. She fights back and doesn’t let the disease slow her down in any aspect of her life.

Returning to Her Roots

Sarah grew up in Pennsylvania just outside of Philadelphia. When she was 10 years old, she worked at riding camps at Ashford Farms and dabbled in the horse community throughout high school. But when she headed to Northeastern University, horses were put on the back burner as she focused on her studies and athletics. After graduating from Virginia, Sarah got a job working at a contracting company. But something was missing – horses.

Although Sarah had a great job with the contracting company, her multiple ruptured discs from coxing caused too much pain to keep going. After a quick search online, Sarah found herself back in a barn working for Kiki Osbourne, the head trainer at Dappir Ridge Eventing in Charlottesville, Va. Fast forward two years and Sarah is now the barn manager at one of Kiki's leased facilities, Midway Farm.

Sarah credits Kiki for getting her back in touch with her equestrian roots. "I have yet to meet anyone in the Virginia horse world who doesn’t know her and doesn’t know her as a great horseman,” Sarah says. “I wouldn’t be here right now if I had met anyone else for that job two years ago.

“From when I was young my number one dream – that I thought would never happen – was to buy a horse one day,” Sarah says. “After working with Kiki for about a year, I was leasing a little mare who was not fit for eventing, so we started looking for my next off-the-track project.”

Enter Leo.

In It Together

It was Leo’s brains, not his looks, that were his selling point. Standing at 17 hands and weighing 1,200 pounds without a trace of white on his bay coat, Leo – simply put – was one big baby.

“[Kiki] has a lot of connections to jockeys and Thoroughbred trainers, so that’s how we came across Leo. He had one or two starts and was no good at it,” Sarah explains. “He was super slow. He’s one of the calmest and mellowest horses ever. I swear he has the brain of a 30-plus-year-old horse.”

Despite her lack of experience in retraining horses, Sarah used Kiki’s expertise and knowledge in developing the four-year-old Thoroughbred.

“I knew what to do because of Kiki. I still have very little idea of where to go for the next piece of training, but Leo shows me what we need to work on. He was so big and lanky when he got to the barn. His balance was so off; he couldn’t bend and was such a wiggle worm,” Sarah says. “It’s nice because I’m so green riding-wise, but I feel like both of our learning curves are just, like, completely vertical. We learn something every ride.”

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Sarah and Leo put their relative inexperience to the test this past October at their first eventing competition, the Chapel Springs Fall Horse Trials. Following a solid dressage performance, the pair were sitting in third place. Despite a spook and refusal in the show jumping causing Sarah to forget the last fence of the course, she made up for her small mishap and produced a clear cross-country run.

“I was beyond happy with his performance. I was scared because I’ve never been in the start box, I’ve never gone into a dressage ring down the center line, I’ve never done any of that, and neither has he. I was thinking about it and realized the difference between me being nervous about a rowing race is that I’m the only one who can talk. I can’t really talk to my rowers about being nervous – I had to have a facade that I was good to go.

“With riding, it’s just me and Leo. Granted he doesn’t know what I’m saying to him, but it was so comforting to have who I consider my best friend and teammate who I’ve been working with for the past year – he was right there the whole time.”

Reflecting on where she is today, Sarah is living life exactly the way she dreamt when we were together at the University of Virginia despite her disease – a life of days spent with horses and creating art. When I asked what she aspires to achieve in the future now that she’s living her dream of owning a horse, she says she hopes to one day compete at an international event.

“I’ve waited 26 years to have a horse. As long as I don’t mess him up, I don’t care if it takes a while. I don’t know when we’re going to get to upper-level eventing – if we get there – but between him being so good and me being so competitive, I feel like anything is possible.”

Although it took me over five years to muster the guts to pick up the phone and call Sarah to ask such a simple question about her life with cystic fibrosis, I've come to realize that it's okay to ask people about what they're going through – we're all human and we all have our own battles that we muster up the courage to face every day. Yes, rowing is the sport that brought us together, but our shared love for horses is what broke down the barrier that will keep our friendship lasting forever.

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Photos by Kate Samuels.