In Joanne Shin’s bright, sunny art studio, located in the spare bedroom of her Potomac home, an oil painting depicts a country road winding through clusters of green trees and yellow fields. The light brown path journeys into and out of the shadows before fading into the horizon.
“I call it ‘Pathway to Heaven,’ ” says Joanne, gazing at the painting with a half smile. “Like life, there are dark places along it. At the end, it’s sunny and warm, but you can’t always see that from where you are.”
At 20, Joanne is well acquainted with life’s dark places. She took up painting after a massive stroke at age 12 left her with a brain injury that makes it difficult to move and speak. Her mother, Hyoungsun, thought that doing intricate brushwork would help her daughter’s stiff limbs relax, so she would position Joanne’s wheelchair in front of a makeshift easel and place a paintbrush between her clenched fingers.
The first paintings were “disasters,” Joanne says, laughing.
After a few months, however, she began to master the multiple dimensions and details of a given scene. She started to see more of the big picture—including the light shining just beyond the woods.
Joanne and her younger brother, Justin, were born in Taejon, South Korea, a small town about 100 miles south of Seoul. Their father, Dongwook, was an associate professor in the department of computer engineering at Chungnam National University.
In 1998, her parents brought Joanne to the doctor when she experienced a piercing headache that wouldn’t go away. They were shocked by the diagnosis: Their 4-year-old daughter had suffered a cerebral hemorrhage, or bleeding on her brain. Joanne recently had taken a hard fall while playing, so doctors attributed the hemorrhage to the trauma. They assured the Shins that the bleeding was minor, with the only lasting effect some weakness on Joanne’s left side.
Around the same time, Dongwook accepted a position with the National Institutes of Health’s U.S. National Library of Medicine in Bethesda, so in 1999, the family moved to Potomac.
Once they settled in, they brought Joanne to a neurosurgeon at Georgetown University Medical Center to get his take on the left-side weakness. He wondered whether the hemorrhage Joanne had suffered was actually a stroke. Stroke affects roughly six in every 100,000 children in the United States, according to the National Stroke Association.
Further, the neurosurgeon wondered whether Joanne might have moyamoya, a rare and progressive brain disease that affects mostly children and young adults, in which the blood vessels at the base of the brain narrow or become blocked. “Moyamoya” means “puff of smoke” in Japanese and refers to the tiny blood vessels that form around the blocked arteries in order to compensate for the reduced blood flow to the brain, which increases the patient’s chance of having a stroke. The disease, which is thought to have a genetic component, occurs in roughly one in 100,000 people in the United States each year, experts say.
But the neurologist said a diagnosis would require a cerebral angiogram, an invasive procedure that poses its own dangers, so the Shins opted to trust the opinion of their doctor in Korea.
Aside from regular physical therapy sessions to work on the slight left-side weakness, Joanne lived the life of an average American kid, taking swimming lessons, riding bikes, joining the softball team and playing the trumpet in the school band. She made close friends at Cold Spring Elementary School and Cabin John Middle School, and regularly attended sleepovers and birthday parties.
Then, on Sept. 22, 2006, when she was in seventh grade, Joanne came home from softball practice with a headache and asked her mother for medicine. While Hyoungsun was walking to the medicine cabinet, Joanne passed out.
“I couldn’t do anything but scream,” Hyoungsun says.
Justin, just 9 at the time, called 911 and then his dad, crying, to tell him that Joanne was being taken to the emergency room at Shady Grove Adventist Hospital in Rockville. From there, she was flown to Children’s National Medical Center in Washington, D.C.
When Dongwook arrived at Children’s, he recalls a grim scene. Doctors told him that imaging had shown massive bleeding in Joanne’s brain, with possibly irreparable damage.
“Before I saw her, the doctor said, ‘Your daughter is in a grave situation. You need to be prepared for the worst,’ ” Dongwook says. “I was terrified. I thought this was the end of her life.”
The family called their pastor from the Global Mission Church, a Korean church in Silver Spring, and asked him to come pray as they waited for news from the doctors in the intensive care unit.
Days dragged on, with Joanne remaining unresponsive. Hyoungsun and Dongwook developed a routine: Hyoungsun would stay at the hospital with Joanne while Dongwook cared for Justin with the help of neighbors.
“All we could do was wait,” Dongwook says.
Several days into the family’s vigil, doctors delivered more bad news: Imaging showed an aneurysm in Joanne’s brain. If it ruptured, Dongwook remembers the doctor saying, “Joanne’s life would be over.”
On Oct. 2, 2006, surgeons performed a three-hour operation to divert Joanne’s blood flow away from the aneurysm. But rather than improving, Joanne suffered another stroke, Dongwook says.
It took nearly a month for Joanne to regain consciousness. When she did, she couldn’t move or speak, marking the beginning of another angst-filled period for her family as they watched and waited for some sign that their vivacious daughter was still there.
“Doctors’ expectations were really low,” Dongwook says. “No matter what they said, my wife was adamant: ‘She’s going to talk to us. She’s going to walk again.’ ”
And then, after more than six weeks of nothing, “Joanne started smiling and giggling,” Hyoungsun says. “Can you believe that? Some people wake up cursing. She started giggling.”
After spending 50 days at Children’s, Joanne was transferred to the MedStar National Rehabilitation Hospital in Washington, D.C. Over the next four months, she slowly began to regain function. Her first words, fittingly, were “Mommy” and “Daddy.”
A self-portrait of Joanne as an elementary school student—long black hair, big smile, bright, eager eyes—hangs above her bed today. She says it makes her think of a time when she and her parents didn’t have to worry about how she would get in and out of bed or from one end of the house to another, a time when she didn’t have to struggle to form words before speaking, or to remember the train of thought she started just moments earlier.
Those became daily concerns after Joanne was released from the rehabilitation hospital on March 6, 2007. Hyoungsun, a nurse, had quit her job to care for Joanne full time, and neighbors helped by taking care of Justin. Still, the logistics of daily life were exhausting.
“We still lived in a two-story house, so anytime she needed a shower or had to go to bed or just wanted to go to her room, we’d have to lift her and move her to the second floor,” Dongwook says. “It was a very challenging time for us.”
Joanne remembers little about her hospital stays. She does recall feeling rage and despair as she began to discover her limitations back home—everything from walking to using the bathroom by herself.
“I was livid every time I thought about things I used to be able to do,” Joanne says. “I would wake up every morning and think: Lord, what have I done to you to deserve this?”
Within a few months, the Shins moved to a one-story rental home to help ease the burden, and in 2011 they bought a one-story house in their old neighborhood. Slowly, Joanne started to make progress in physical therapy as she tried to retrain her arms and legs to move on command.
Rockville physical therapist Rebecca Leonard, who has worked with Joanne intermittently over the years, says it’s unclear how much additional improvement she can expect. But Leonard says Joanne’s progress has been phenomenal, considering her devastating brain injury. Leonard credits both Joanne and her parents, who are constantly striving to find new ways to unlock her tense muscles and work her mind, from walking in their in-ground swimming pool to marathon chess matches.