Epilepsy in Perspective

By Lisa Boylan, Editor, EPILEPSYUSA

Nick McCumber, a longtime supporter of the Epilepsy Foundation, was diagnosed with epilepsy when he was around 7 years old. Nick is active with the Foundation because he strongly believes in protecting the rights of people with epilepsy through initiatives such as the Jeanne A. Carpenter Epilepsy Legal Defense Fund, which works to advance the rights of people with epilepsy by changing discriminatory practices, policies and laws.

Nick lives in Boulder, Colo. and is a photographer. His photographs are mystical montages—double-exposed images with enigmatic titles that don’t seem to match their subjects. Nick has a unique point of view. He is reluctant to use the word “abstract” to describe his photographs and is similarly hesitant to accept many people’s common perception that living with epilepsy must be a terrible thing. He says, “I just don’t find it to be that way.”

Nick’s seizures are fairly well under control,but he still can’t drive, a fact that does not deter him. He takes taxis everywhere, however the frequent comings and goings of the taxis to his house ended up taking a toll on the lamppost he had at the end of his circular driveway.Taxi drivers kept hitting the lamppost as they backed out, until one night a driver knocked the lamppost flat.

Nick said, “I went to the manager of the cab company and asked him, ‘Could I have two doors off the cab you guys use for parts?’” The manager didn’t bat an eye and asked if he wanted them delivered. Nick said,“Yes.”

He bought a new lamppost and had the taxicab doors welded to the post, creating an unconventional landmark for police cars and other service vehicles trying to make their way in his neighborhood. He effectively fashioned a barricade made up of salvaged parts of taxis—the unwitting perpetrators of damage to his property—to protect the replacement for his hard-hit lamppost.

It is this elasticity of vision and resourcefulness that his older brother, John McCumber, a professor of philosophy at UCLA, came to appreciate in his younger brother. John was in boarding school when Nick was young and was not familiar with his brother’s seizures and the impact epilepsy had on his life. He knew his brother had a positive attitude and did not complain about his epilepsy, and that was about the extent of it. John realizes, however, that Nick’s seizures have taken him to places—not altogether negative—he could never envision. He said Nick’s seizures seem to have a “mystical dimension to them,” which has taught John “a certain amount of humility as a philosopher.” He explained that philosophers tend to assume they know what knowledge is, but his brother’s experiences with seizures have taught him otherwise. John also said he initially didn’t get his brother’s complex photographic images, but now he sees “he’s really on to things that take me quite a while to figureout.” He said, “If you’re the big brother, you’re supposed to be the teacher, but that has not been the case.”

Clearly Nick’s way of looking at things—from epilepsy, to images in front of his camera, to a damaged lamppost—provides him with a unique angle that helps topple conventional viewpoints and preconceived notions. He says, “People with epilepsy have a different perspective.”

This must be true since he has even taught his older brother, a professor trained in the logic-seeking discipline of philosophy, that there are some realities we can never define.