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Epilepsy Advocate
Strength in numbers™

Proudly decked out in a pink and black polka-dot apron, Kristy R. stops to taste the dough she’s just rolled out on her counter. She grabs a pinch, then dusts a little more powdered sugar on the dough. “I always add a little more sugar than the recipe calls for,” Kristy says with a grin. “Bit of a sweet tooth.”

Kristy expertly transfers the dough to the pie plate, then assembles layers of fresh apple slices. She tops them with brown sugar, cinnamon and a pinch of nutmeg, and another layer of pastry. Wearing her apron over well-worn blue jeans, Kristy might be called a modern—and very Portland, Ore.—goddess of the kitchen. Those who knew her in her previous lives as a DJ with a purple Mohawk or as a successful entrepreneur wouldn’t have imagined her as a domestic maven. Yet here she is—and the apron now seems a perfect fit.

Kristy in Wonderland

Twelve years ago, Kristy played a different role: popular DJ at The Egyptian Club, one of Portland’s hip clubs. She stepped up one night when the regular DJ was a no-show. “I am really very shy, so getting up in front of all of those people was huge for me,” Kristy recalls. But that night went well, and before long she was a crowd favorite, spinning Jackson Five Motown pop and Erasure synthpop. “I even had groupies!”

As a full-time DJ, Kristy would work until 3 a.m., then sleep until midafternoon. Her success helped her save enough money to buy her own house. But not long after she signed the papers, Kristy also began to experience strange sensations: hallucinations and feelings of dread. At first she thought her new house was haunted. “My perception of the world was off,” she says. “I felt like Alice in Wonderland.”

As these sensations began happening more frequently, Kristy questioned her sanity. Then one morning, she experienced a severe seizure. Her roommate found her on the floor and rushed her to the hospital. It would take months before Kristy understood that what she’d been experiencing all those months were complex partial seizures leading up to that event. Although she was prescribed anti-seizure medication, she continued to experience seizures and began experiencing adverse side effects that were too much for her.

Another Plan

Kristy continued working at The Egyptian Club for a few more months, but the seizures and medications were taking their toll. Not satisfied with the answers she was getting from her physician, she searched online and scoured scientific journals to educate herself. It was through this research that she learned about epileptologists, neurologists who specialize in the treatment of epilepsy.

She found an epileptologist in Portland, and he helped her get a handle on her epilepsy. “He didn’t just start prescribing new medications,” Kristy explains. “He wanted to learn about the kinds of seizures I experienced and what my triggers might be.” He discovered that Kristy had multiple seizure types, including simple partial and complex partial seizures. Armed with this new information, they created an action plan. Because sleep was essential to gaining optimal seizure control, Kristy quit her job at the nightclub. Losing her celebrity status was tough, but it hurt even more to surrender her sole source of income. With support from her family, however, Kristy was able to gain the time she needed to get better.

Almost a year after her diagnosis, Kristy met Lara. It was a bright event in a tough time. They hit it off immediately, and because they shared the same circle of friends, Lara was already aware of Kristy’s epilepsy. “I don’t think she knew what she was getting into,” Kristy says, laughing. Together they decided to take a leap into business ownership and opened their first coffee shop. For the next 10 years, Kristy and Lara built their lives and their business together. One successful location led to another. “I was determined not to let epilepsy hold me back,” Kristy says. “If I needed to work 100 hours a week, I would do it.” But her ambition took its toll. Sometimes Kristy suffered five seizures a day because of the long hours and stress.

All the while, Kristy and her doctor kept searching for better seizure control with minimal side effects. Thinking surgery might provide relief, on three occasions she went to epilepsy monitoring units (EMU) hoping that her seizures could be captured on an EEG, and the source of her epilepsy would be pinpointed. Kristy was kept awake for days, exposed to various triggers, even allowed to drink alcohol, but nothing worked. It seemed she could not have a seizure in the EMU.

Finding Balance

After another unsuccessful trip to an EMU, Kristy had to accept that she was not a candidate for surgery. She did know, however, that she could take other steps to minimize her seizures and side effects.

She and Lara began to form a new plan. Lara landed a good full-time job, which enabled the couple to sell one of their coffee shops and find a full-time manager for the other. This allowed Kristy to retire from the hectic pace. “It was a real shift in perspective,” she says. “But I realized that I really wasn’t giving up anything by accepting my limitations. I’m not disabled, I’m differently abled.”

Although her journey with epilepsy hasn’t been easy, Kristy has learned how to live well with epilepsy. “If I had stayed in the club scene, I don’t know what my life would be like today,” Kristy says. “Some people in that crowd haven’t fared too well. It was probably a good thing I got out when I did.” Now, following what is perhaps her most radical transformation, as a “happy homemaker” Kristy cooks, cleans and runs errands. Her main “job” is staying healthy, and keeping her seizures to a minimum.

Today, Kristy draws on her inner DJ to overcome her shyness when she stands before groups to share her story as an Epilepsy Advocate. With her tenacious spirit and contagious optimism, she encourages others with epilepsy to educate themselves and make a plan that works for them. “I’ve had to shift my dreams,” she says. “I’m happier than I’ve been. I had no idea being a housewife would be so awesome!”

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Chris's Story: Lost and Found

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As a church pastor, Chris was accustomed to supporting others. When a life-threatening illness brought on epilepsy, he faced a humbling role reversal.