Richard Davis remembers what life was like before Congress passed the Americans with Disabilities Act in 1990.
“My first thought at a new job was, ‘Are you going to fire me?'” said Davis.
Some did. He was even deemed ineligible to attend college in those days, not for any academic reason, Davis said, but because the college told him they were not trained or equipped to treat a person in the midst of an epileptic seizure.
Today, Davis, 51, uses art to inform the general public about epilepsy. His paintings were awarded first second and third place at this year’s Florida State Fair.
Davis has had epilepsy since he was hit by a car at the age of 9.
“The bad seizures started when I was 13, and they’ve been like an off and on thing,” he said.
Davis conveys the damage seizures cause to an individual and the mind through artistic representation, portrayed through Davis’s book, “The Unpredictable,” and his paintings that serve as a catharsis to the pain, depression, anxiety, reduced vitality, and insufficient sleep he experiences during treatment.
The association between epilepsy and depression is especially strong with more than one of every three epileptic people being affected by the mood disorder, according to the Epilepsy Foundation. People with a history of depression are three to seven times more likely to develop epilepsy, the foundation reports.
Although these mood disorders are a symptom of epilepsy, as they are also with arthritis, heart problems, diabetes and cancer, it was not epilepsy that caused Davis’ most recent disturbance, he said.
“I went to the hospital last April because of swelling of the foot, and when they ran tests they found that I had a major blood clot in my left foot, and had to stay in the hospital for a week for them to inject thinner for the blood for the next nine months,” Davis said. “While there they ran tests in the chest, stomach, and pelvis to make sure there were no other clots.”
Instead, three doctors came into the room, Davis said, and told he and his wife, “The good news is, you have no other blood clots, but you do have cancer.”
“My wife and I were in shock, and my first question was, ‘Where?'” Davis said.
The doctor told him he had cancer on his right kidney that had to be removed within three weeks.
Davis’ kidney was removed, he said, and the cancer in it was a silent kind. Had it not been caught in time it would have spread throughout his body quietly until it was too late.
“While going through this process of healing and no work, I sat down to work on paintings to help the mind heal my worries and fears,” Davis said. “I decided in November to see when was the latest date and what were the roots for the State Fair in Tampa, and found it was in December.”
Davis won first, second, and third place in the competition this year for three paintings he completed during treatment, according to the Florida Fair Authority, titled, “Civil War Battle,” “Artillery Cannon,” and “Lighthouse and Ship.”
Having gone through his bout with cancer, Davis has come to see his life-long struggle with epilepsy in a new light.
He is even more focused on using his art to educate his audience about epilepsy as has been done during campaigns about other diseases, he said. Davis wants people to know how to assist during an epileptic seizure. Most important is to “guard the head,” he said.
“You go through this and really want people to learn, to be accepted, and for people to be educated,” Davis said. “I think it’s been an opportunity to say, ‘I know what you’re going through with this cancer diagnosis and these surgeries.'”
Lack of knowledge about proper seizure first aid exposes affected individuals to injury from unnecessary restraint and from objects needlessly forced into the mouth, the Epilepsy Foundation states. Some people with epilepsy do not even know they have it, having been told they have a “seizure disorder” instead.
This unfortunate euphemism arose because of the historical stigma associated with epilepsy, which is something the Epilepsy Foundation has fought to dispel.
Davis said what he’s trying to get out to the public is for people not to feel embarrassed and ashamed for people with epilepsy, but rather encourage awareness of the illness in order to help them when suffering a seizure as commonly as one would help someone choking by applying the Heimlich.
“People just need to learn to overcome this embarrassment they have and accept us like any other kind of ailment or disease that they can visibly see,” Davis said. “I’ve had people who were scared, afraid to help me so the first thing they did was call an ambulance when I didn’t need an ambulance, but just for someone to look after me until my brain came back to normal.”
Davis gets primarily petit mal or atonic seizures, which cause blackouts but no visible shaking, and grand mal or generalized tonic-clonic seizures, which also cause blackouts, but are accompanied by visible shaking.
The latter is what the Epilepsy Foundation attributes to the leading, non-medical problem confronting people like Davis with epilepsy: discrimination in education, employment and social acceptance.
Davis recalls being at work or school when a strong “aura” would strike, or warning that an impending seizure was about to occur. Often, he said, he would utilize what little time he had in that moment before the seizure to hide and avoid embarrassment, rather than tend to his safety.
“People today are afraid of everybody else suing them, and I hate that,” Davis said. “We’ve always felt unwelcome. It’s not the ignorance of people, it’s that they don’t want to learn because they’re too scared, shied off. They didn’t want to hurt me, and didn’t know how to help me, and when I get all these mixed emotions from people, somebody has to say something.”
Davis said he was an art teacher at Burean Academy, a private school in Tampa, when his seizures worsened. He had brain surgery in 2007, which soon turned to meningitis, he said.
“I’ve had brain surgery twice, the first being seizure-free the first year, and when my son passed away (from seizures) I had a lot of turmoil that year from all the stress,” he said. “People with epilepsy are very embarrassed, ashamed and closed in, and when I met with (others with epilepsy) and talked to them I thought, ‘Somebody needs to speak out for us.'”
Davis’s converted the shame and fear he felt into strength, and applied it to the cause of epilepsy education and awareness.
Epilepsy is the third most common neurological disorder in the United States after Alzheimer’s disease and stroke, according to the Epilepsy Foundation, and is equal in prevalence to cerebral palsy, multiple sclerosis and Parkinson’s disease combined.
Epilepsy is not a single entity but a family of more than 40 syndromes that affect 2.7 million people in the U.S. and 50 million worldwide, according to the foundation. It strikes most often among the very young and old, although anyone can get it at any age.
In the U.S., it currently affects more than 326,000 children under 15 and more than 90,000 of them have severe seizures that cannot be adequately treated, the foundation states.
Memory is an essential component to one’s perception and development, Davis said, which is constructed through sensory input, affect, and repetition in motor function.
It is among the regions of the brain impacted during an epileptic seizure, Davis said. For example, a friend of his with epilepsy suffered a seizure so severe he went from having the capacity of a 25-year-old to that of a fifth-grader, Davis said.
Davis has had his fair share of seizures, as well, and draws on his years of memory to produce art. He said he fears a day when his seizures might become more prolonged and severe as was the case with his friend, depriving his brain of oxygen and effectively killing off those memories, and his ability to produce art.
“It’s the one thing if we really think about it, we can’t have replaced,” said Davis. “It’s your personality. That’s you.”
Davis said he views epileptic seizures comparatively to a computer when it freezes: unsaved information and memory is often lost, requiring the machine to be rebuilt or reconfigured.
“We have only so many neurons in the brain, and during a seizure those burn,” he said. “The doctor in Tampa said to me, ‘Some day you should write a book, because you’ve had more seizures than we have names for.'”