'I couldn’t walk, talk or eat:' A rare brain infection attacked Brownsburg wrestling coach

BROWNSBURG -- Patrick Frepan remembers being furious the day his nurse stuffed him into a trash can in the back of her trailer and drove him to a dirt track race in Arizona. All he wanted was to be freed from the trailer, so he could walk over to the track and watch the race. But Frepan couldn't walk.

"I could hear the whole thing and I was so ticked off," said Frepan. "I was so mad that she took me there and then left me in the trailer."

Eventually, his nurse brought him back to Indiana and he moved into a Costco where he would lie around and watch customers' grab their orders off of a conveyor belt.

Frepan tried to get up once to find his nurse inside the grocery warehouse, but he got stuck in a limbo position, couldn't move and nobody would help him. Frepan started screaming for help, but his words made no sense. He couldn't talk.

"I actually, finally, kind of settled into the Costco and the nurse was really nice," he said. "They would try to give me food from the food court," like the quarter-pound beef hotdog or the turkey and provolone sandwich. But Frepan couldn't eat.

Not long after Costco, Frepan moved into a Belle Tire for a short stay. Then, he eventually made his way back to where he was supposed to be, IU Health University Hospital, where his six-foot body had dwindled from 175 pounds to 132 and a feeding tube was inserted.

Frepan didn't know it then but all those experiences with his nurse had been hallucinations as he battled a rare brain infection called Bickerstaff brainstem encephalitis. Doctors suspect the dirt race was on ESPN in Frepan's hospital room and that there were probably Costco and Belle Tire commercials playing on television, too.

But in Frepan's head all he wanted was to escape the misery he was in. Escape this insane, rare disease he was battling that left him unable to walk, talk, feed himself and do what he loved the very most -- get down on the mat with his wrestlers, show them moves, lead them and coach them.

Instead, Frepan wasn't sure where he was, what disease he had or whether he would ever coach again.

"I am dying," said Frepan, now 46. "Absolutely, I thought I was dying."

'I'm declining more'

Frepan was in the best shape of his life as he started preseason wrestling workouts at Brownsburg West Middle School in October 2019. He was working out six days a week and running three miles on the treadmill at a 5:30 pace.

But in mid-November, as he tried to get down on the mat to wrestle with his players, Frepan noticed he was struggling. He couldn't put his finger on it. He just didn't feel quite as strong. His wrestlers noticed it, too.

"They'd see him kind of trembling," said assistant coach Jeremy Matheney. "They'd see him weak."

Not long after that, Frepan and his wife, Amy, went to a Notre Dame game where they watched the team trounce Boston College 40-7. They stayed at his parents' house in South Bend, where he had grown up.

As they were driving home that weekend, Frepan noticed the right side of his body was numb. His parents had put a new bed in their guest room and Frepan assumed the numbness was from the uncomfortable bed. He and Amy and his parents joked that the bed felt like it was ordered from Flinstones.com.

But as the days went on, they weren't laughing. They were scared. Everything on the right side of Frepan's body continued to tingle -- the right side of his tongue, the right cheek, the right arm, the right leg, the right ear, the right side of his torso. Everything on the right side.

One day, as Matheney sat at the school doing paperwork with Frepan, he became alarmed. Frepan couldn't hold onto the papers. He kept dropping them.

"And he'd say, ‘See? That's the kind of stuff that I'm dealing with.' He was obviously worried," said Matheney. "The numbness, not being able to hold things, not being able to be out on the mat with the kids, that hurt him."

After all, Frepan had made a promise to himself when he became the school's wrestling coach 11 seasons ago. He was going to be a hands-on coach. He knew the moves; he had wrestled in high school.

"I always told myself, 'If I can't do what the kids can do, if I can't show it, then I'm not doing it anymore,'" he said.

Frepan made what Matheney said was a heartwrenching decision to leave the team in early 2020. "He was kind of seeing the bigger picture."

"I'm declining more. I'm not doing the kids justice by not being able to be out there and work with them," Frepan said at the time. "I don't know where this is going to go, and doctors don't know where this is going to go.

"I need to step away to work on myself to find out what's wrong with me."

'I know what you have'

At first, doctors suspected a slipped disc in Frepan's back and gave him a shot. As things progressively and slowly got worse, more trouble walking, more weakness, blurred vision in his right eye, they suspected a stroke.

When both those issues were ruled out, the tests began, what seemed like a million tests.

"They did all these scans and they were normal. My blood pressure was normal. I did CAT scans and MRIs and lung scans and organs. Everything was scanned," said Frepan. "They did a couple of lumbar punctures, spinal taps and nothing came back."

Frepan was sent to a neurologist, who somberly told Frepan and Amy that she suspected multiple sclerosis.

"So, there was about a week where we kind of ruminated on that and were like, 'OK. We can do that,'" Frepan said. "And then they ruled that out."

Finally, the neurologist looked at Frepan and said, "I don't know what this is Patrick. I just don't know."

From there, things got much worse. Frepan started falling down, his speech started slurring, his vision deteriorated. He went to the hospital again and again. He went through rehabilitation and was given high doses of steroids. Nothing worked.

On Feb. 15, 2020, nearly three months after the tingling in his body began, Amy took her husband to the hospital where, for the next three and a half months, he became a shell of the man he once was.

At one point, a team of psychiatrists suggested Frepan might have conversion disorder, a condition where a mental health issue interferes with the brain, causing real physical symptoms, such as numbness and paralysis.

"No," Frepan told them firmly. "Financially, health wise, marriage, kids? I was as happy as I've ever been, so go away and figure out what's wrong with me."

On his 43rd birthday, March 14th, 2020, a test finally came back positive for certain antibodies and Frepan was diagnosed with Miller Fisher Syndrome, a rare neurological condition that causes mild to severe muscle weakness, according to the National Institutes of Health. It is caused by an immune system reaction against certain proteins in the nerves that are important for movement, sensation and function.

Frepan and Amy were relieved. After all these months, they finally knew what was going on. All he needed was some time at the Rehabilitation Hospital of Indiana and he'd be just fine.

"And while I was at RHI, I just went straight downhill. I mean, nothing was helping," said Frepan. "I was to the point where I couldn't see anymore, I couldn't talk, I couldn't walk. They had to put a catheter in because I couldn't control my organs."

Doctors started talking to Amy about hospice or nursing homes for Frepan, due to the height of the COVID-19 pandemic, and his weakened condition.

"My wife is my absolute champion," said Frepan. "She's like, 'Nope. Why don't we transfer him somewhere else?'" And that is how Frepan ended up at University Hospital where he met a neurologist named Dr. Riley Snook who looked at him and said the sweetest words Frepan had ever heard. "I know what you have."

'This is who I am'

Frepan had Bickerstaff Brainstem Encephalitis, an extremely rare autoimmune disease of the peripheral and central nervous system, with no known cause.

"I know what's going on and I know how to eventually fix it," Dr. Snook told him, "but it's going to be a long road."

That long road included those incredible hallucinations. They weren't dreams. Frepan tries to explain that to people. He was actually there, stuffed in that trash can, inside Costo, living at Belle Tire.

Frepan wants to write his book, how he had to relearn how to walk and talk and eat. How his vision slowly came back. How his wife was there for him every step of the way. How he couldn't see his children, Maggie and Tyler, and how that destroyed him. How, when he got to come home in late May 2020, his friends and family rallied around him.

While he was in the hospital, Frepan's neighbors transformed the family's dining room into a bedroom, because all their bedrooms were upstairs. They enclosed the room and brought in a hospital bed. Once home, Frepan was on total at-home care.

He had to have a bath assistant, had to do occupational therapy, physical therapy and speech therapy every single day. He took infusions of an antibody called Rituximab with a promise from Dr. Snook that he was confident Frepan could make a full recovery.

"So, I worked my butt off in physical therapy and I did everything I was supposed to do," said Frepan. And on July 10, 2020, Frepan took his first unassisted steps. "And then I decided that I was going to start school on July 28th, and I worked my butt off."

A few days before the first day of school, Amy brought Frepan into his classroom in a wheelchair and helped him set it up. When the students arrived, Frepan told them his story. He still tells them his story every single year.

"I'm like, 'This is who I am. I don't want to dwell on it, but it's informed my life so much overcoming things and this is why I think you can do hard things,'" he said. "I tell my students and especially my wrestlers."

Frepan still gets infusions every four weeks. He isn't sure how long he will have to take those, maybe the rest of his life.

And while he has mostly recovered physically, the health journey took a major emotional toll. For months afterward, Frepan would wake up in the night having terrors and screaming. He was diagnosed with post-traumatic stress disorder. He overcame that, too.

"There are not always great days," he said. "I mean, I don't have any bad days because I know what bad days were. I know what bad days felt like."

'I wanted to get back to coaching. I did'

Frepan has a Post-It note on his desktop with his favorite quote. "Just because I carry it well doesn't mean it isn't heavy."

From the outside looking in, life seems pretty amazing for him. He is back to teaching and coaching and going into the final matches this weekend with a 15-5 record.

The season started slow, 2-5, but then the team won 13 matches straight. Frepan likes to believe his wrestlers knew they could overcome any slow start, just as they can overcome anything in life.

As Brady Miller took a break from wrestling practice this week to talk about his coach, he said he knows what Frepan has been through and that inspires him.

"It was a lot of hard stuff and it's impressive," said Brady. "He went from relearning how to walk, and relearning how to eat and talk, to what he's doing now."

What Frepan’s doing now is sweating on the mat, doing what he loves.

"I wanted to get back to my family. I did. I wanted to get back to the classroom. I did," he said "I wanted to get back to coaching. I did."

And he takes none of it for granted. After all, it wasn't that long ago when he thought his life would look very different, that he might never coach again. And that makes doing it even more incredible.

"You would never learn to fully appreciate the sunny days," Amy wrote in a letter on Frepan's Caring Bridge page in December 2020, "if the cloudy ones didn’t exist."

Follow IndyStar sports reporter Dana Benbow on X: @DanaBenbow. Reach her via email: dbenbow@indystar.com.

This article originally appeared on Indianapolis Star: Rare brain infection attacked Brownsburg wrestling coach: 'I'm dying'