On her birthday one chilly fall morning in 2010, Christy Shake woke up and decided to write a daily blog about her son Calvin’s ongoing battle with epilepsy. She wasn’t sure exactly what she was going to write at the beginning, but she just “knew it was something [she] had to do.” Nearly two years later, Shake’s blog, titled “Calvin’s Story,” has received more than 155,000 hits.
Shake and Professor of Photography Mike Kolster’s eight-year-old son, Calvin, was born six weeks premature and suffers from epilepsy.
Since his diagnosis at the age of two, Calvin’s quality of life has been compromised by frequent seizures and the negative side-effects of medications that are necessary to combat the disease. In light of her son’s struggle, Shake decided to make it her life’s work to tell Calvin’s story and raise awareness about epilepsy.
On her blog’s homepage, Shake explains, “I post something to this blog every day in an effort to increase epilepsy awareness, dispel the myths, promote understanding and inspire empathy, all in the hope of a cure.”
There are copious misconceptions about epilepsy, according to Shake.
“People don’t admit that they have [epilepsy] due to stigma, and as a result it is a very poorly represented disorder,” she said.
Shake added that in the past, it was thought that those with epilepsy were contagious. Individuals with epilepsy had difficulty obtaining employment and, in periods of heightened prejudice, were not permitted to marry.
One of the most important myths that Shake tries to dispel is the misconception that seizures can be stopped by taking preventative drugs.
“Epilepsy is not benign,” she said. “Up to 40 percent do not gain seizure control with medication.”
“You can’t live with them, you can’t live without them,” Shake said of the drugs. Without medication, Calvin would be more susceptible to fatal seizures, but the constant dosages take a toll.
Shake recalled a particularly scary incident, when Calvin had a 45-minute grand mal seizure and his parents did not think he would survive.
“We were basically kissing him goodbye,” she said.
Calvin survived, but the emergency medications that he was administered during the attack did not expedite his recovery. If it weren’t for his medication, Calvin might be able to walk without the assistance of a harness or a hand. He wouldn’t be prone to drooling. And he might to able to talk.
“Other parents say how quickly their kids are growing up; for me, it often feels the opposite,” said Shake.
One of Shake’s recent blog posts featured “Soft Watch at the Moment of First Explosion,” by Salvador Dali.
This painting represents the “elastic time” that rules Calvin’s life—time that seems to stand still during Calvin’s seizures—as well as his stunted cerebral developments caused by the drugs that keep him alive.
Shake’s friend Susan Axelrod, wife of David Axelrod, senior campaign advisor to President Obama, is the founder of Citizens United for Research in Epilepsy. Together, Shake and Axelrod are looking for a cure with, “No seizures, and no side effects.”
To help achieve this goal, Shake started hosting a February benefit four years ago, which she said, “started out small, just some friends over for cocktails and food at our house.” Three years later, the benefit had grown so much in size that it had to be relocated to Cram Alumni House on Federal Street.
Shake said that she has considered moving the fundraiser to Portland, but that the Brunswick community has caused her to hesitate.
“Many of the area restaurants donate food,” she said. “Over the past four years we have raised nearly $50,000.”
Kolster testified to the supportive nature of the College community: “Whenever we’ve been in the right place to ask for or receive support, it’s always been there.”
His admiration of his wife’s efforts to raise funds and spread epilepsy awareness is clear.
“She’s just so good at communicating,” said Kolster. “She’s really good at telling people how things are, and how they feel,” Kolster said.
With over 1,500 addresses on her blog’s email list, Shake seems well on her way to completing her mission.
“It all emanates from the crazy amount of energy, focus, and devotion she brings to Calvin,” he said. “Everything she has accomplished comes from that force.”
For more information about Calvin’s story visit calvinsstory.com. Donations to CURE in Calvin’s name can be made at calvinscure.com.