It’s 6 o’clock on a windy evening in January, and 19-year-old Connor Berry is shuffling through the main level of the Burtonsville home he shares with his mom. Starting in the kitchen, he lumbers through the dining room, then the family room and back to the kitchen, an improvised track of about 70 feet.
It’s a short distance but a slow process: He has to stop a few times to regain control when his body veers off course, and he occasionally grabs ahold of a countertop to take a break. Though muscular, his body often jolts to the right or left. Sometimes his shoulder accidently slams against a wall and his legs take steps on their own volition that throw him off balance. It’s a condition called ataxia, his doctors say: a lack of coordination of voluntary movements.
His personal trainer, Peter Francis, is walking two steps behind him, timing Connor’s speed and watching his movements. After every third lap, Connor sits to rest. He wipes the sweat from his forehead and takes a long swig of water. “How did I do?” Connor calls over to Francis before starting the next round.
“Two minutes, 45 seconds,” Francis answers, and Connor smiles. It’s a big improvement over the five-plus minutes it took him when the two started working together a year and a half ago. Connor works with Francis three days a week; the other two weekdays Connor goes for physical therapy in Rockville.
Neither Connor nor Francis mentions that Connor ran the 100-meter sprint in 11.9 seconds when he was in eighth grade. Or that less than four years ago he was a safety on the junior varsity football team at Georgetown Preparatory School. Or that he was an actor who appeared in television shows and commercials when he was younger—even the 2014 feature film The Little Rascals Save the Day.
Connor tries not to think about his past life. He focuses on the future. After all, three years ago his doctors weren’t sure if he’d spend his life in a wheelchair, he says. And once he gave up the wheelchair, his doctors weren’t sure he’d ever walk without a walker. But he advanced from a walker to a rollator in only a few months. (A rollator, or rolling walker, takes much more agility to use, he says.)
This evening, while he’s doing his laps, his royal blue rollator is perched in a corner and Connor is walking on his own—awkwardly, but walking nonetheless. It’s frustrating, he says, when he asks his doctors how far they think his recovery can go and they tell him they don’t know. But he understands that they don’t have all the answers, just as those around Connor understand that he’ll chart his own path with remarkable patience, optimism and determination.
“Do you know that your right eye is moving funny?” Connor’s friend CJ Arce asked him as the boys walked from indoor track practice to the weight room at Georgetown Prep in North Bethesda in late December 2018. No, Connor replied; he felt perfectly fine. Later that afternoon, his mom, Elva BowdenBerry (who divorced Connor’s father in 2017 but uses a surname that combines her maiden and married names) came to pick up the two sophomores. CJ told her what he had witnessed: Connor’s right pupil was bouncing around rapidly, something he hadn’t seen before in the eight or nine years he’d known him.
Weeks later, Connor’s aunt noticed the same thing, so BowdenBerry brought her son to an optometrist, who sent him to an ophthalmologist, who referred him to a neuro-ophthalmologist. That third doctor ordered an MRI of Connor’s brain.
In late February 2019, BowdenBerry, a senior attorney with the U.S. Nuclear Regulatory Commission (NRC), picked up Connor after school, gave him dinner to eat in the car and drove him to Children’s National Hospital in Washington, D.C., for the MRI. They didn’t go home that evening. In fact, they didn’t go home for good for seven months.
Uncontrollable rapid eye movement is known as “nystagmus,” and it’s a sign of a brain problem—not an eye problem, says Dr. Eugene Hwang, a neuro-oncologist at Children’s National. He has been one of the doctors on Connor’s team since shortly after Connor’s scan was read at the hospital that night.
It was Hwang who had to break the news to Connor and his mom: A tumor was lodged close to the 16-year-old’s brain stem, near the “fiber optics” that control facial movements, vision and balance. That means, Hwang says, “that any tumor in that area or any direct surgical intervention in that area runs a higher risk of potential complications,” compared with other areas of the brain.
The MRI also showed a buildup of fluid exerting dangerously high pressure on Connor’s brain. If the mass wasn’t removed right away, the pressure would likely cause permanent brain damage. And the triggering event might come on suddenly—possibly in days or even hours. “These are the kinds of surgeries that have to happen in the middle of the night or the weekend sometimes,” Hwang says.
The doctors recommended immediate surgery and ran through the list of possible complications. Connor wasn’t thinking that any of them might actually happen, he says. “I was 16…it wasn’t on my mind that brain surgery was going to change my life.”
His mom felt the weight of the situation more than he did. “When the surgeon started telling us the risks of the surgery and everything…I thought, ‘Oh my God, he’s having brain surgery.’ What happens if he wakes up and he can’t remember stuff?” she says. She told him to give her the password to his phone in case he was having trouble with recall afterward.
Connor underwent surgery the next morning, and the operation was declared a success. The tumor was benign, and the doctors were able to remove it completely so it’s unlikely to grow back. But it was clear early in the recovery that Connor’s brain had been affected. He lost sensation along the right side of his body; the left side of his face was paralyzed. He couldn’t control his balance or even stand, meaning he had to use a wheelchair. Double vision had set in, making it hard for Connor to focus.
What happened to Connor was rare, Hwang says. Many young brain tumor patients go home from the hospital after only a few days. Others have complications that can take weeks to resolve. A few, like Connor, have more serious issues. “You are taking a bunch of knives to an area where all the fiber optics [run through] that tell your body how to move,” Hwang says. “It’s extremely difficult to take that tumor out without also taking out some of those fiber optics.”
Connor spent nearly a month in the hospital and was then moved to MedStar National Rehabilitation Hospital in Washington for intensive in-patient rehabilitation. His mom used the vacation time and sick leave she’d accrued over her 35-year career at the NRC to stay by her son’s side night and day at Children’s. Once he was transferred to the rehab facility, she worked remotely from his room, sleeping on the couch next to his bed.
Weeks into Connor’s stay at the rehab hospital more complications arose, and he was rushed back to Children’s in late March 2019. He’d contracted meningitis, which led to hydrocephalus, an abnormal buildup of fluid deep within the brain that can lead to brain damage, even death, if left untreated. Surgeons implanted a shunt, or tube, into his brain that connects to a flexible tube that runs down his neck and into his abdomen. A permanent device, the shunt allows excess fluid from Connor’s brain to drain naturally as he urinates.
Connor doesn’t have a lot of memories of being rushed back to Children’s. “I was in pretty bad shape,” he says. His mom was petrified. “I’m not a crier,” she says, but she was scared for his life.
Eight weeks and two more surgeries later, Connor was transferred back to the rehab hospital for four more months. He came home some weekends, but it wasn’t until September 2019, seven months after his first surgery, that BowdenBerry finally wheeled her son home to stay.
“It felt good to sleep in my own bed,” he says, but it didn’t feel the same as before the surgery. Even now, with the sensation on his right side still limited, he can barely feel the pillow under his head.
Connor had hoped to be walking by the time he returned to school in the fall of 2019, but he’d come to realize that the timeline for recovery was going to be slower than he wanted. “A minor setback to a major comeback,” his brother, Michael, now 26, had said when he visited Connor in the hospital after his first surgery, words that stuck with him.
When Connor showed up at Georgetown Prep in his motorized wheelchair 10 days after being released from the rehab hospital, he got a standing ovation from the whole school. “#Connor Strong” banners covered the fence along Rockville Pike and hung in the school’s George Center, where students gathered to cheer him on. The school had added power-assist doors in two locations that previously didn’t have them and moved his classes so that every place Connor needed to be was elevator accessible. His friends and the staff helped him get around.
“I didn’t want my friends and my teachers to see me the way I was,” he says, “but it felt good to be back on campus.”
It wasn’t until the pandemic began that he transitioned out of his wheelchair. With classes being held remotely, he had more time to practice walking—first with a walker, then with his rollator. He’s tried to adapt what he calls his “football mindset”—focusing on his recovery and what he needs to do to get back to normal.
“I try and not think about, like, all the things I’m missing out on,” like sports and acting, he says, “and I try to think about what’s to come.”
At the start of school last fall, he arrived on campus with his rollator. Now he has to be mindful of divots in the sidewalk and fast-moving people. His double vision compounds the challenge during the five minutes between classes, as students run from building to building. When he’s rolling between classes and it starts to rain, students and teachers often ask if he needs an umbrella, or perhaps some help. No, he tells them with a smile. He’s just happy to be moving on his own and feeling the rain on his head.
Connor fell a few times early in the school year. It’s only by going down that he learns to get up better, he says. After years of playing football, he knows how to fall without getting hurt, but it can be embarrassing, he says. One time, his rollator hit a gap in a concrete path and he went down into the grass—rollator, backpack and all. A teacher came rushing over and made him wait until she could flag down another student to carry his books to his next destination, a meeting of the school’s Black Student Association, held a couple of buildings away.
If he must take a spill, Connor much prefers the kind he took a month later, in a school bathroom. He was able to get up and back to class before anyone saw him, but admits it’s sometimes still disheartening when it happens. “It’s like, dang, if I’m still falling at [this] point…does that mean I won’t get better?”
Connor stays in touch with his friends, but these days it’s mostly by text since they’re no longer at school with him. He redid his sophomore year, and they graduated a year ago. He intends to walk across the stage without his rollator to accept his diploma at Georgetown Prep’s graduation ceremony in May. “It’s definitely a goal that’s obtainable. The stage is only going to be like 10 to 20 feet,” he says. “I’m working on the endurance aspect.”
Now, during most of his free periods at school, Connor goes to the weight room. Trainers there—some who remember him from his football and track days—work with him. A couple of days a week, Francis, his personal trainer, meets him there to improve balance and strength. Most of Francis’ other clients are in their 80s, but Connor’s physical issues are similar to those faced by older stroke or Parkinson’s disease patients, Francis says.
Two afternoons a week, BowdenBerry drives her son to MedStar National Rehabilitation Center in Rockville, an outpatient clinic where he’s been getting physical therapy since he left the inpatient facility. Connor exercises on his own, too, rising most mornings at 5:30 to do an hour of push-ups, hip bridges, step-ups and eye drills before school. The eye regimen came from a specialist he sees in Chicago once or twice a year to help with his double vision. At night, after he finishes his homework, Connor goes through another exercise regimen. Insurance covers some of his treatments and therapies, but not all. Connor’s uncle, Michael Bowden, set up a GoFundMe page for him that is now more than halfway to its goal of raising $50,000.
When he first got home from the rehab hospital, Connor couldn’t play video games—he lacked the muscle control and hand-eye coordination. He spent his free time reading books, holding novels up to a spot in front of his face where his double vision didn’t set in. But he kept going back to his Sony PlayStation 5 and now plays a bit every night for fun and for therapy. He and CJ sometimes play his favorite game together over FaceTime: Madden NFL 22. Connor’s video game progress typifies his philosophy about his whole recovery. “Just don’t stop,” he says.
“If you stop, you can guarantee it’s not going to get better; but if you stick with it, things will improve.”
“He was a beast,” says Josh Furnary, a social studies teacher at Prep who coached Connor when he was on the freshman football team. Connor was always on the small side (now he’s 5 feet, 5 inches tall), but he would race in to tackle guys twice his size, Furnary says. “And he usually won the play.”
The teacher and student first met at a Georgetown Prep open house when Connor was a Gaithersburg Middle School eighth grader. Connor had overheard Furnary and another teacher discussing whether voting in presidential elections should be mandatory. Connor introduced himself and offered his opinion. “I’m an extrovert…I like talking to people,” he says.
Furnary gave Connor his contact information and said he’d be happy to read anything Connor wanted to write on the subject, figuring that would be the last he’d hear from him. But on Christmas Eve, a few months after they met, Furnary got an email from Connor with a two-page essay attached. Connor had even included voting statistics he’d researched.
“It is disappointing to know that in our country where people do have the right to vote, merely half of them do so,” he wrote in the first paragraph. But “criminalizing people for not voting is punishing innocent people who are uninformed politically, unable to go vote and politically voiceless due to the political leanings of their state,” he wrote at the bottom of page two.
“Special, special kid,” Furnary says, thinking back.
Memories of Connor from years past didn’t make Furnary less concerned when he saw Connor’s name on his junior year history class roster in the fall of 2020. He’d seen Connor around campus in his wheelchair the previous winter, before the pandemic hit, and knew that his speech had been impacted along with his motor skills. Would Connor be able to keep up in class? What accommodations would he need? School would now be remote, but with his double vision, would Connor be able to spend hours staring at a screen?
Furnary’s first assignment of the year was an essay on the founding of the 13 American colonies, and Connor’s was polished and researched at a depth well beyond the high school level, the teacher says. “Everything he turned in was, like, unbelievably above and beyond what all his classmates would turn in… . He’d start the class with a set of questions all ready—to get deeper into U.S. history…he just elevated the game.”
The other students would feed off Connor’s enthusiasm, Furnary says. “If another kid thought they could have an excuse as to why they didn’t have their homework…they knew Connor would have it done to perfection…it would kind of, like, take the other kid’s excuse away…like, if Connor’s doing it like this, what’s your excuse?”
Someday, Connor wants to write a film about his experiences. He thinks it’s unlikely he’ll be an actor again, but he wants to be a director. He’s applied to 14 colleges around the country, many with strong film departments, and he’s already made a short documentary about himself. The film, he says, “starts a little bit with my friends at my school talking about me before the surgery, and it transitions to a couple of friends hearing the news and visiting me at the hospital. It doesn’t capture everything.”
He’s also writing down the thoughts he’s had at different points along his path to recovery so he doesn’t forget them—like how he felt when he was at the rehab hospital and saw kids who were admitted after him make progress more quickly. “I was putting in a lot of work, [and I] started to see people getting discharged sooner than I was getting discharged. I wasn’t, like, jealous or anything, but if you are seeing that kind of thing, it’s going to have an effect on you.”
Connor already knows how he’d capture his emotions about that in a movie. “I could keep one character in place and have everything else moving around the character…like everything moving around the camera, but I’m not moving.”
His friend CJ recalls first meeting Connor nearly a decade ago, when the two were playing with the Maplewood Youth Football Program in Bethesda. Their team was undefeated that season until Connor had to fly to California for an acting gig. The team lost the next game, and the players were dispirited. When Connor returned, he set out to motivate them again, CJ says. “We aren’t going to let this loss define us,” CJ recalls Connor saying, and he remembers Connor pushing himself and the team even harder to overcome the loss and win the championship. CJ sees the same motivation in his friend today. “There’s this ambition about him—he wants to keep pushing forward.”
For Connor, it’s all about setting goals. He likes to set them high, he says, like working toward a full recovery in six months.
“Even if I’m not fully recovered, I will have made a significant amount of progress because I was working toward a higher goal,” he says. “So far, so good.”
Amy Halpern is a journalist who has worked in print and television news. She lives in Potomac.