BERLIN — Vickie Roy is working hard to raise awareness of epilepsy. She has written a book, “One Step At A Time” about her daily life with epilepsy.
Every year, she contacts the governor’s office and requests the governor issue a proclamation for Epilepsy Awareness Day, which is on March 26.
People are asked to wear the color purple to draw attention to the 50 million people around the world and the estimated 2.2 million Americans living with epilepsy.
Roy said the first governor she asked was Gov. John Lynch.
After she called, the governor’ office called back to get more information. A few weeks later the requested proclamation came in the mail.
This year, she sent Gov. Chris Sununu a copy of her book, and he sent her a signed note with the proclamation.
Epilepsy is a neurological disorder in which the brain activity becomes abnormal, resulting in seizures or periods of unusual behavior. It is not a disease or psychological disorder.
There is no cure although more than half can be controlled by medication and 10-15 percent can be eliminated by surgery.
Julius Caesar, Charles Dickens, Thomas Edison, Socrates and Neil Young are among some of the famous people with epilepsy.
Roy said she was born with epilepsy and growing up in Maine she said she had a hard time in school. At one point, she said the school tried to claim she was unfit to be in a public school but her doctors said she was as normal as any other kid.
“I got treated better by the students than staff,” she said.
Roy eventually would leave school to go to Job Corps and earn her GED through the program.
In 1991, she moved to Berlin, where she lives with her husband, Ray, and son Travis.
Roy had a temporal lobectomy performed in 1997 and she went from having 12-14 seizures a month to about one every six months, which she called a major accomplishment. But her doctors were not satisfied and several years later they did a vagus nerve stimulator implant. With medication, she is now seizure-free.
Finding work has been hard for Roy, which she attributes to employers reluctance to hire her after they discover she has epilepsy.
She also does not drive.
Roy notes with pride that she home schools her son. She is also a self-taught artist, and sells her wood burnings at farmers markets during the summer.
Her mission now is to educate people about epilepsy and eliminate some of the misconceptions about the disorder. She said people should not panic if they have seizures. Rather, she recommends they take time to read about epilepsy. Her book is available on Amazon, Kindle and Nook, and as an audiobook.