SMU’s Johns Finds Strength in Relationships, Horses During Winding Medical Journey

There are days when Hailey Johns feels like her old self. She has the drive and energy to handle any challenge, without limits or restrictions.

And then, there are days when the bottom drops out. She is depleted, exhausted, barely functional. It can hit unexpectedly, if she’s not careful.

This has become her reality, one she never could have imagined five years ago.

“Every day, I learn more and more about myself in terms of my health. I’ve always known myself and had a very sure sense of self and who I am and what I’m about, which has been very important through all this. But I get to know my health, my physical needs and what works for me better and better every year,” Johns said. “There are stumbling blocks every few months, always, without question. But they’re smaller every time and I learn how to overcome them a little better every time.”

Johns came to Dallas in the fall of 2020 ready to help the SMU equestrian program reach new heights.

She will leave the school this spring having battled through improbable odds to see the finish line, refusing to let a medical mystery derail her collegiate experience.

Between the start and the end, Johns found out who she was, who she was surrounded by and what was most important to her. And for each lesson, no matter how difficult, she is grateful.

Hailey Johns hanging out with her first horse, Scooter. | Courtesy the Johns family

An unanticipated pastime

Rick Johns often thinks back to the moment that could have changed everything.

Just before turning 4-years old, Hailey woke up from a nap, walked up to her mother, Jen, and made a proclamation – “I was born for horses, and they were born for me, and I want to ride horses.”

The statement came out of nowhere. The Johns weren’t an equine family. Jen had ridden when she was younger, but had no involvement as an adult. There were no books or movies in the home centered around horses that could have influenced Hailey into this sentiment.

Her parents thought the fascination would pass, but it didn’t. Hailey remained adamant that horses were going to be her focus.

Rick found a farm about 45 minutes away from the family’s home in northwest Indiana that agreed to give Hailey a lesson. Upon arrival, their oldest daughter had a sudden change of heart.

“I think the father in me kicked in,” Rick said with a laugh. “I said, ‘Listen, you made a commitment to do this. We’re wasting this young lady’s time. We’ve driven all this way. I don’t care if you never get on another horse again the rest of your life, but you’re getting on that horse today.’ I picked her up, put her in that saddle and she never got out.”

What started that day reshaped the Johns household forever.

Horses became Hailey’s passion, leading her all over the region and country for competition. As a sophomore, she enrolled in Indiana University High School, an online, self-guided program, allowing her the freedom to work at a local equine facility and compete at events on her own schedule. Between practice and working at the barn, she’d often be gone for 12-plus hours before coming home to tackle AP classes.

Her work ethic, academic success and skills were enough for former SMU coach Carol Gwin to take a look. On paper, Hailey didn’t have some of the accolades other prospective riders came in with, but Gwin saw the potential.

“She’s very good at getting horses to where they need to be for a competition day,” Gwin said. “Her strength is that she is very good at figuring out how to get the best out of a horse very quickly.”

For the first time in her life, Hailey was going to be on her own. While many others see college as a time when life picks up speed, Hailey had a feeling things were about to slow down. She was looking forward to settling into a routine that was balanced and scheduled.

“I was used to running at a very high pace. That was just my normal,” Hailey said. “College, honestly when I first got here, felt easy. It was like, ‘Wow, this is kind of a breeze. I have actual time to breathe now and have a social life and do all these things now.’ That was super exciting for me.”

Hailey Johns cheering at an SMU competition with teammates — Hailey Johns, standing with no hat, cheers on her SMU teammates during a meet. | Courtesy of SMU athletics

An unexpected and unseen illness

The bond between Macie Soderquist and Hailey was fast to develop for two reasons – their mutual love of horses and restrictive COVID-19 protocols.

When they arrived on campus in fall 2020, the two incoming freshmen were assigned a dorm together. To keep student-athletes from contracting the virus, strict rules were in place to limit contact risks for transmission. It meant Hailey and Soderquist spent a lot of time together with nowhere else to go.

Despite never having met each, the friendship blossomed quickly. Soderquist came to know Hailey as the independent, strong-willed person who seldom rested and stayed on the go.

Then one day, that girl was gone.

Halloween weekend of 2020, Hailey went to bed like normal. The next morning, she woke up devoid of energy and unable to move. She could hardly speak. It took every ounce of strength to get out of bed for even the most mundane activity.

What’s more, the feeling didn’t dissipate. She routinely visited the SMU medical clinic, had bloodwork and other tests run. Everything came back clear – no COVID, no flu, no out of balance levels. There was no explanation.

“I think a lot of people thought she was trying to get out of the hard work that comes along with freshman year, but anybody that spent any time with her before she got sick knew that wasn’t her personality trait at all,” Soderquist said, noting there were times when she would have conversations with Hailey only to repeat the message later because her roommate couldn’t recall them speaking.

Soderquist added: “It was difficult because I was trying to communicate to the coaches that she was alive, but really unwell, and to her parents. Her mom was obviously really concerned and really wanted her to come home – but Hailey is fiercely independent. I think for a couple months there, Hailey was probably downplaying how sick she was to her mom. That was a little bit of an interesting situation for me because I knew the real story and I could tell her from her mom’s messages that her mom didn’t know the real story.”

When the fall semester ended, Hailey loaded up on steroids, medications and caffeine just to be physically able to endure the flight home. Back in Indiana, she leveled off a bit, but needed an extra week at home before she could return to Dallas, against her family's wishes.

“Everyone was like, ‘Don’t come back to school. Stay home and figure it out.’ But I refused to do that. So I went back to school,” Hailey said with a laugh.

The second semester was a rollercoaster. For weeks she’d be fine, followed by periods where she’d be nonfunctional, with no clear pattern or cause.

Back home that summer, the status quo remained unchanged. She went on a complete elimination diet, at one point eating nothing but white rice and carrots, trying to see if there was a digestional reason. There were days of normalcy followed by a crash. She had lost weight, dwindling to 5-foot-10 and just 110 pounds. Her hair was thinning.

Through it all, Hailey remained undeterred. She was going back to Dallas when the fall semester started.

Almost a year to the day from the onset of her illness, Hailey woke up one morning in late October 2021 and once again found herself depleted of energy. She had lost feeling in her arms. And this time, there was something new – she was vomiting blood.

Gwin had previously help Hailey get an appointment with her own nurse practitioner in Dallas for additional help, which led to a referral with a rheumatologist. That doctor began performing flexibility tests on Hailey, something she picked up on right away.

Hailey and her family had long known she was extremely flexible, but in an almost unnatural way. The rheumatologist had a hunch it might be a sign of something more, but further testing was going to be needed.

“My parents were like, ‘All right, enough is enough. This is crazy.’ I got into the Mayo Clinic at the same time everything started really, really falling apart. That’s when I finally left school,” Hailey said.

Hailey Johns working with a horse. — Hailey Johns has been instrumental in working with horses ahead of meets to get them ready for competition for SMU. | Courtesy of SMU athletics

Searching for answers

Visiting a doctor, even for a routine check-up, can be stressful. The Mayo Clinic amplifies that ten-fold.

Hailey’s arrival at 7 a.m. was followed by an immediate blood draw and the day didn’t end until a final appointment at 5:30 p.m. That process repeated itself for seven consecutive days before being released to return home.

By the family's third trip to the Mayo Clinic, Jen knew her daughter was drained, both physically and emotionally. She had been on treadmills, hooked up to all sorts of machines and tested for just about anything from allergies to Mercury. They still had no answers into what was going on.

“She was like, ‘Mama, it’s fine. They can’t figure it out. I’m going to figure it out. I’m kind of done,’” Jen recalled ahead of an anticipated appointment. “I said, ‘I don’t care if you don’t go to another appointment, you’re going to this one.'”

That test, known as a tilt table test, evaluates how the body responds to changes in positioning. It proved to be the last piece of the puzzle that finally gave the Johns some answers.

Hailey’s biggest diagnosis was Postural Orthostatic Tachycardia Syndrome, commonly referred to as POTS. It is a chronic condition that causes an abnormally rapid heart rate, which can have an array of impacts on the body. She was also confirmed to have Ehler-Danlos Syndrome (EDS) a rare disorder that impacts connective tissues, explaining her hyper flexibility and other issues.

There was also dysautonomia that impacts involuntary body functions, as well as Chronic Fatigue Syndrome. Along the way, there have been new discoveries, including Mass Cell Activation Syndrome, which can cause open wounds on her skin at random.

Before the diagnoses were narrowed, Hailey was taking more than 80 pills a day, just to be functional if she was lucky. That number has fallen sharply. Her dietary restrictions have also tightened compared to life before. She’s been gluten and dairy free for three years and eats no meat, just seafood.

More than that, she’s learned when to go and when to stop, a concept that felt foreign not that long ago.

“I used to run at one million miles an hour, seven days a week, 365 days a year. Now, I have physical limits that I have to respect. I have no choice,” Hailey said. “I used to not sleep hardly at all. Now, if my body is depleted, I’ll just pass out. My body will send itself into sleep whether or not I consent to that. I have to really try to have more balance in my life and watch my limits and be cognizant of how I’m doing and prioritize things. I just can’t do everything the way I used to.”

Even after all that she’s given up or been forced to change, there is one thing Hailey refused to relinquish – her unending passion for horses and for the SMU program.

“Carol was like, ‘Is she coming back?’ I was like, ‘Oh, she’s coming back,’” Jen confidently said.

Hailey Johns with Oliver — While he might be picky with others, Oliver has been Hailey Johns' constant companion during her time at SMU. | Keagan Phillips/@k.p.photog

Oliver, a captain and her role

Nonnegotitable. No matter how bad she has felt, horses have been the thing Hailey will not give up, using “nonnegotiable” as her word to describe the matter.

In fact, they have been part of the treatment.

“When I was home (from the Mayo Clinic) for two weeks, I would ride. That’s all I would do. I would ride and I would rest. I had a very, very limited supply of energy, and so anything I had to give I gave it to the horses because that’s what kept me happy and able to kind of keep going and strong enough,” Hailey said. “I just felt very much not myself. The horses were what reminded me of who I am.”

Waiting for her back in Dallas was a partially blind, extremely stubborn gelding named Oliver. The horse was donated to the SMU program around the same time Hailey enrolled at school. Freshmen are often assigned a new horse to help get it ready for college competition. Hailey was given Oliver.

Their bond developed instantly. Hailey called him “the most super, spectacular horse I’ve ever ridden.” To everyone else, he was a jerk.

He refused to move and if he did the ride was anything but pleasant. He would kick out at times, making even the most seasoned riders look like first-timers. The SMU coaches wanted to send him back. Hailey pleaded to keep him.

“From the very beginning, she definitely went the extra mile for that horse. I think it can be easy to kind of get in the routine of going to practice and kind of getting in and out and getting back to normal life. Hailey really did whatever it took to get through to that horse,” Soderquist said. “Hailey has a real talent of understanding what the horse needs and she kind of adapts how she rides and what she asks of it based on the horse. He’s a perfect example of one you can’t put in a box and go ride him like any other horse.”

It’s that skill set that Hailey has used throughout her collegiate journey to be an integral part of SMU’s success.

While other student-athletes have jockeyed for a spot among the starting competitors, Hailey has quietly embraced a more behind-the-scenes role. If a horse is having trouble with a particular skill, Hailey is the rider SMU’s coaches call on to problem solve. On meet day, she is among the first to arrive at the barn and begin warming up horses in preparation for competition.

Once the action starts, Hailey is on the rail watching and leading the cheers, often decked out in red and blue gear that stands out among the crowd. Her passion for her teammates, both the two and four-legged kind, led her to being selected as a team captain during the 2023-24 season.

“My desire to be in the competition ring is very low. My desire to make the horses better, make them the best they can be and give the girls success when they get on those horses is exceedingly high,” Hailey said. “I feel like for me I have been able to fulfill the niche that I would have hopefully seen myself in. This has kind of always been my thing, me working on the horses versus me going and getting fancy ribbons.”

Laura Persons knows it’s more than that.

SMU’s jumping seat coach for the past four seasons has watched as Hailey has navigated her way through the health struggles, with a focus on remaining part of the Mustang program. Hailey’s name won’t show up on a breakdown of wins and losses, but without her work in the background, the Mustangs likely don't capture the last two National Collegiate Equestrian Association national championships.

And, without the team, there’s no telling what her recovery would have looked like.

“I think the camaraderie with the girls, combined with her love for the horses and the therapy they provide for her is what kept her coming back. I think they provide her a grounding presence and something that’s kind of reliable in all the chaos she has to deal with in her regular life,” Persons said. “She’ll text me some days when she’s having a rough day health wise and I know the only horse she needs is Oliver. She might walk all day, but I think being around the horses and being out at the barns helps her as much as she’s helping us. Without that, all of her struggles would have been a lot harder I think.”

SMU celebrates its 2023 national title — Hailey Johns, striped outfit, celebrates the 2023 NCEA National Title with her SMU teammates. While she hasn't ridden competitively, Johns has been crucial in SMU's success the last few years, working with horses, serving as a team captain and leading in her own way. | Courtesy of SMU athletics

The next phase

There are moments when Jen still holds her breath.

A few days ago, she and Hailey were talking on the phone, when there was a sudden pause on the other end of the line.

“My first response was my heart went to my toes. I was like, ‘Oh my God, something is wrong,’” Jen said. “I couldn’t hear her and I was like, ‘Hunny, are you all right?’ And she was like, ‘Yeah, I’m just getting in the car.’”

Concern is constant for the Johns family. Hailey will never be cured and managing her conditions will be a lifelong process.

That is her future – it is not her outlook on what lies ahead.

During her freshman and sophomore years, Hailey had to work with the SMU academic advising staff and her professors to request incompletes for some of her courses as she battled her health issues. There were times when fatigue prevented her from getting out of bed and making it to class, even for an exam.

In May, she’ll leave the school with two bachelors, one in marketing and another in philosophy, along with a minor in women and gender studies. Last spring, she earned a spot on the NCEA Academic Honor Roll.

Following the 2024 NCEA Championship, Hailey took part in a summer internship in Dallas. It went so well, the company extended her a job offer following graduation.

Before decisions on her future have to be made, she’s got one final semester with SMU, a program in pursuit of its third straight national title.

Hailey took part in the senior day celebration last year with Soderquist and the other student-athletes who came to Dallas in the fall of 2020. She labeled herself a “spiritual senior” and wanted to celebrate with the group. It’s those relationships and that bond that have kept her coming back. The experience of the last five years has been one of gratefulness, even in the face of hardship.

“My teammates, my coaches, my professors hugely have always been, not always super understanding, but super aware of me. Like when I’m pushing myself too hard, (SMU head coach Brad Kearns) will be the first to say, ‘Hailey Johns, sit down and stop for a second. Just take a second,’” Hailey said. “I won’t do it myself because I don’t see it. I’m just going, going, going. The fact that I have the support network that also calls me out when I need to chill out and give my body a second, is huge. You can’t make anybody care that much, it’s just the kind of people that they are.”

What happens after May is still to be determined. Hailey will graduate and figure out life’s next move. And, while there’s no set timeline, when Oliver is retired from SMU’s stable of horses, Hailey is his landing spot.

Conversations about his future have been ongoing for quite some time with everyone agreeing that her self-described oversized therapy dog should be close by.

No matter what, Hailey is thankful for the experience, the friendships and the support. All of it helped her push through adversity and prepare for what’s next, whatever that may be.

“I was always confident she’d come out on the other side, but when you’re in the darkest days you don’t always know, especially when you’re facing an illness or disease that’s unknown to us,” Rick said. “She doesn’t let it slow her down at all.”