Image Source: https://www.denverpost.com/
Nine minutes after the Denver Chess Club tournament started Oct. 16 in an Embassy Suites hotel, and eight months after his fourth brain surgery, Griffin McConnell sat down to compete.
He started the match by trying to open a plastic water bottle, but with only one fully functioning arm, the task was difficult and he instead made his first move on the chess board. Less than three hours later, he won the game and went on to second place in the tournament with two higher ranked players in a three-way tie.
Back on Feb. 25, competing in a chess tournament was only a hope for Griffin, now 17, of Golden. Doctors had just finished his second hemispherectomy, a procedure that disconnects the left and right side of the brain and causes some paralysis. The brain surgery was Griffin’s fourth since being diagnosed at age 5 with epilepsy, a common neurological disorder characterized by seizures of many types.
Seizures and surgeries became common in Griffin’s young life, but chess remained a constant for the boy who started playing at 4 years old. He always came back to chess. Seven months after his surgery, on Labor Day weekend, Griffin became a state champion, beating his younger brother, Sullivan, to win the 2021 Colorado Open Blitz Chess Championship.
“I wanted to get back to my normal self as fast as possible,” Griffin said about competing so soon after major brain surgery. “If I could still do chess, then I can do, kind of, anything.”
Treating epilepsy—a long journey
Griffin’s seizures started as subtle behavioral changes, making them difficult to identify, his mother said. But doctors told his parents, Kori and Kevin McConnell, that their son would likely grow out of it, Kevin said.
Epilepsy is “the most common childhood brain disorder in the United States,” affecting about 450,000 U.S. residents younger than 17, two-thirds of whom outgrow their seizures by the time they’re teenagers, according to the American Academy of Pediatrics.
But Griffin’s seizures got worse.
“There are a lot of different causes, there are a lot of different ways that it manifests,” Brent O’Neill, a pediatric neurosurgeon at Children’s Hospital Colorado who’s performed all four of Griffin’s surgeries, said about epilepsy. “The first line of treatment is always medicine.”
Drugs did not help Griffin. At times, he would take as many as 30 pills a day, his father, Kevin, said. The side effects were many and included psychosis.
Even with the epilepsy, Griffin excelled at chess after Kevin taught him. The difficulty of the game intrigued him, Griffin explained.
“Chess was complicated and it’s still complicated in, like, 13 years of my experience,” Griffin said.
After medications failed to stop his worsening seizures, Griffin underwent two brain surgeries in 2012 when he was 7. In the first, a grid was placed on his brain to find the source of his seizures. Then doctors removed part of Griffin’s left orbital frontal lobe where they believed the seizures occurred.
The seizures only stopped for six days before getting worse, Kori recalled. And they increasingly became unmanageable with Griffin often breaking anything in his path, trying to run away and yelling at those around him, his parents said. Firefighters started to know the family by name as they’d call 911 to get help restraining Griffin.
As a result, in May 2013, 8-year-old Griffin underwent the first hemispherectomy to separate the left and right sides of his brain. The loss of the left hemisphere—which O’Neill said is the dominant side that stores critical language functions—caused Griffin to permanently lose some motor skills on the right side of his body.
A pathology report revealed Griffin’s epilepsy was caused by a rare combination of cortical dysplasia, a more common reason to have epilepsy, and Rasmussen’s Syndrome, a rare and mysterious disease that involves inflammatory cells, O’Neill said.
Griffin spent the next two months in intensive rehabilitation, learning how to talk, walk, cope with his partial blindness and learn how to use his left, non-dominant hand, his mother recalled.
Griffin wears a brace on his right leg and has some communication disorders, but has mostly had a strong recovery, his mother said, and he started playing chess again within six months.
“I was kind of amazed that he was able to go back to it more or less at the same level,” O’Neill said. “I feel like the chess was a great sort of rehab.”
For years Griffin lived a seizure-free life. But in ninth grade, at about 14 years old, Griffin confided to his mother that he was feeling different, his parents said, occasionally feeling like things were moving in slow motion before getting painful headaches.
Testing confirmed seizures were occurring again, Kori recalled, and they continued to grow in frequency. His thinking abilities declined, Griffin said, impacting his schooling, chess playing and overall quality of life.
“I was never happy,” Griffin said, explaining that he didn’t want to do any of the normal activities he used to enjoy.
After medicine failed to stop the seizures, Griffin told his parents he wanted to do another hemispherectomy.
When younger sister Moira, 11, learned of her brother’s upcoming operation, she screamed and sobbed into her pillow, she said. She feared that her brother would be permanently changed by the operation.
“I cried every night,” she said.
A hemispherectomy—which happens 10 to 15 times a year at Children’s Hospital Colorado—takes about eight hours, said O’Neill, and includes significant risks such as bleeding, fluid build-up on the brain and injuring the other side of the brain.
“It really was a matter of life and death,” said Lior Lapid, Griffin and Sullivan’s chess coach of more than three years. Lapid feared Griffin not only losing his life, but also losing his ability to play chess, which he said would be “a kind of death in itself.”
Griffin’s recovery, while shorter and not as intensive as in 2013, was harder, explained Griffin and his father, because Griffin was older and more aware of what was happening. But Griffin knew right away that his thinking abilities were improving, he said, and he’s been seizure-free since the operation.
Again, Griffin’s return to chess was swift. Sixteen days after his surgery—three days after getting out of the hospital—Griffin decided to compete in the 2021 State Scholastic Chess Championship in Denver, a competition he always played with his brother, Sullivan, a 14-year-old chess master.
“I didn’t want to ruin this streak,” Griffin said, adding that he wanted to prove he could still play the game that meant so much to him and his brother.
Chess: A game that helped the whole family
As the McConnell brothers earned reputations as exceptional chess players, the game also served as a coping mechanism for the entire family, the parents said.
“I get overwhelmed very fast,” Griffin said. “And I love chess for that reason, because it’s very quiet.”
He’s known in the chess community for his positive demeanor.
“He is the most happy, optimistic, friendly, kind kid,” said Brad Lundstrom, president of the Colorado State Chess Association, who first met Griffin about nine years ago and has witnessed him and Sullivan advance as chess players.
Sullivan started playing not long after his brother did. Sullivan’s style consists of playing unpredictable moves and always waiting for a better outcome to arise—a tactic he used to cope with Griffin’s seizures.
“If I eventually would wait it out, Griffin would come back,” Sullivan said.
Moira, a sixth grader at Denver School of the Arts, said she suffers from anxiety partially because of the chaos the seizures caused when she was younger. One method of coping for the entire McConnell family has been openly talking—and laughing—about their feelings, said Kevin, as they navigate their new normal with hope that Griffin’s seizures are finally behind them.
It takes a village: Receiving and offering support
Towards the end of 2012, as medical bills increased and rent became nearly impossible to pay, Kori McConnell started sharing her family’s story and asking for help.
She created a Facebook group, named “Eagle Lion” after Griffin, in March of 2013, before his first hemispherectomy. The group served as a place to share updates on Griffin’s progress and for others to express support.
Helping others, in return, has become Griffin’s mission, he said, adding chess offers a way to give back, especially as its popularity rises.
The Netflix series “The Queen’s Gambit” and the COVID-19 quarantine increased the number of people playing chess, said Laura Nystrom, public relations manager at Chess.com, an online chess server with more than 73 million members, including Griffin and Sullivan.
The rise in chess playing offers more opportunities for Griffin and Sullivan, who teach after-school chess club sessions with PALS Chess Academy, an organization created by Lapid, their coach, at schools in the Denver area.
“I’m helping people,” Griffin said about teaching chess. “And that’s all I wanted to do in life.”
He wants to take it further by encouraging chess players to help teach children with disabilities, Kevin said.
Providing a platform for children with disabilities is important, said Lapid, who helped coach Griffin during the 2019 International Chess Federation (FIDE) Confederation Cup for People with Disabilities in Turkey—Griffin’s first abroad competition, during which he went undefeated. Lapid also coached Griffin as the Team USA coach for the 2020 FIDE Online Olympiad for People with Disabilities, where Griffin helped the team place 10th out of 61 competing international teams, Lapid said.
Through sharing his story, Griffin said he hopes people realize that anything is possible with hard work and that people with disabilities can do what others can. Currently, he’s raising money on a GoFundMe page to help finance the four Team USA members and their caregivers as they travel to Russia next year to compete in the FIDE Chess Olympiad for People with Disabilities.
In February, Griffin will get testing to confirm the seizures have fully stopped, his mother said. And he’ll continue competing in chess, attending Golden High School and working to inspire others.
“Griffin, time and again, finds a way to come back from adversity,” said Lapid, likening his progress to a dramatic comeback ending in a movie. “But it’s not the end of the movie for him. That’s the difference. It’s just the beginning.”