It was matte black and smooth. Protective, but not bulky; stylish, yet simple.
It took him awhile to find it:
David Julian poses on a bridge in his Santa Ana neighborhood. Julian wears his helmet most of the time because of epilepsy seizures and to raise awareness of the disorder. He heads the Epilepsy Connection which does education and advocacy.
PAUL BERSEBACH, THE ORANGE COUNTY REGISTER
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The perfect helmet.
A few months ago, David Julian, 44, of Santa Ana, strapped his new Nutcase brand helmet to his head and walked out of the store.
And it's been on ever since.
He's even decorated it. Bright, glittery stickers spell out phrases like "epilepsy" and "seizures suck."
Julian has epilepsy, and his seizures strike often enough that he needs to protect his head. So he wears a helmet; partly for protection and partly to raise awareness in the world about his mysterious condition.
And awareness is raised. Consider:
Places Julian doesn't wear his helmet: his bed; the shower.
Places Julian does wear it: At home. At work (when he can go). Doctors appointments. The pet store. Everyplace he goes after getting ready for the day.
He wasn't always so public about his epilepsy. Julian was 16 when he was diagnosed, following a gran mal seizure (a seizure in which the entire body convulses; his lasted 12 minutes), and, at first, he tried to distance himself from the disorder.
He told just one friend about his condition. And when he went to parties, he'd throw the alcohol he was given into potted plants, booze being less-than-excellent if you have a propensity for seizures.
"Nobody wants to be confronted by something that makes them weak," Julian says.
Now, 28 years later, Julian is the founder of the Epilepsy Connection, a nonprofit that raises epilepsy awareness and advocates for a cure. He helps host fundraising events and lectures, and his nonprofit recently raised $600 to buy a seizure monitor mat for a baby in Florida.
Far from being distant from epilepsy, Julian's lifelong battle of acceptance has left him immersed in his disorder.
Somehow, he has learned not just to accept his epilepsy, but to embrace it.
???
Marianna Watkins, Julian's mother, remembers a time when her son was in the seventh grade and couldn't get out of bed, his body ached so much.
But he didn't have a temperature, so she sent him on his walk to school anyway. Julian didn't complain. He'd rather push through than give up.
"Later, we realized he'd had a gran mal seizure in his sleep," Watkins says.
Along with the possibility that Julian could, at any time, die from a seizure-related injury, there is also the fear that he could die from SUDEP (Sudden Unexpected Death in Epilepsy). SUDEP is a condition in which people with epilepsy die without a clearly defined cause. Fairly underresearched, SUDEP is not well-understood.
Julian's early adulthood was filled with depression and, he says, denial. After a violent seizure that left him hospitalized, Julian remembers coming home and debriefing with his mother and girlfriend. He was so frustrated that he punched a sliding-glass door, yelling, "My life is over. Why do I have these seizures?"
It was at this point that Julian began to accept his condition. "I decided, it is what it is," he says. He came to understand epilepsy and coexist with his weakness.
And things started looking up.
He met a woman online. He moved to New Jersey. And, at 28, he got married. With the birth of a daughter three years later, Julian had to think about more than just his condition.
And, for 11 years, Julian was seizure-free. To this day, doctors don't understand why his seizures were under control during that time.
But one thing was sure: Julian had a family to take care of.
???
Seizures are like earthquakes, says Ron Watkins, Julian's stepfather. They strike without either warning or compassion.
Because of that, the phrase "epilepsy awareness" ? which appears on Julian's helmet and various bracelets ? serve double duty as a public service message and a hint to strangers who might offer to help if he has a seizure.
"He is always prepared for the next earthquake," says Watkins.
But nobody can prepare for that first tremor.
When Julian's daughter was 3, Julian experienced a role reversal of sorts. On an airplane, his daughter had her first seizure. And Julian, the parent, saw epilepsy in an entirely new ? maybe even more frustrating ? light.
"I understood what my mom feels, what her heart does when I have a seizure."
His daughter, now 13, remains unaffected by the brief dip into her father's world. But the same could not be said for Julian. Something about the experience changed him.
"All the sudden, he saw that the world was bigger than just him having seizures," says Marianna Watkins.
Julian's seizures returned in 2006 and, soon after, he and his wife had divorced. Over the next year, he managed to cope with his seizures while living alone.
But one event left him hospitalized for three and half weeks, and his absence from work caused him to lose his job. With no income, insurance, or support system in New Jersey, Julian was helpless.
He had to choose: He could live in California with his parents' help, or stay in isolation and potential danger but live closer to his daughter.
In 2007, he chose a life of support.
Or it chose him.
???
"I'd better have a seizure while I'm wearing this helmet... at least one," says Julian, on a video taken with his cellphone.
Once his helmet became a staple of his daily attire, he started filming himself as he walked home from work.
Documenting the phenomenon and uploading it to YouTube was a way of raising awareness, but also a way of fighting the stigma.
"I couldn't care less about people saying something about the helmet," he says. "I want people to speak up and out about epilepsy."
Julian started speaking out when he came home to California in 2007. Later that year, with the help of Facebook, he founded the Epilepsy Connection as a resource for epilepsy-affected individuals.
These days, Julian is truly consumed by epilepsy. He manages his nonprofit, raising awareness and offering support. He attends doctor's appointments to try to get his seizures under control. He trains his epilepsy alert dog, Miss Chevious Allie Poochino (Allie for short). And, in order to be able to continue living independently, he sends a text message to a family member whenever he does something potentially dangerous ? such as getting in the shower or walking down the stairs.
But can an all-consuming epilepsy lifestyle be healthy?
Perhaps it takes a certain type of person to embrace weakness.
"This is my outlet" Julian says. "(It's) my evil, and everything for me."
If you'd like to contact David Julian, email david@myec.org.
Contact the writer: kstorch@ocregister.com.
Source: http://www.ocregister.com/articles/julian-375137-epilepsy-seizure.html
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