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Brain Injury Alliance of Arizona Blog

When Life Hands Her Seizures, Amy Kemp Embraces the Chaos

Amy Kemp has a unique way of putting things into perspective. Ask her about what life is like for her following a seizure, and she’ll tell you she feels “seizure-iffic!” How she got to this point, well… that’s the interesting story.

“I urge others to be aware of what they have and make it work for them. It’s empowering to know the facts of your condition and how it affects your life. Don’t let seizures impact your dreams!”

When Life Hands Her Seizures, Amy Kemp Embraces the Chaos

Amy Kemp has a unique way of putting things into perspective. Ask her about what life is like for her following a seizure, and she’ll tell you she feels “seizure-iffic!” How she got to this point, well… that’s the interesting story.

“I urge others to be aware of what they have and make it work for them. It’s empowering to know the facts of your condition and how it affects your life. Don’t let seizures impact your dreams!”

Ever since Amy was as a kid in North Carolina, she had no idea that she was having seizures. She would stare into space and lose track of time but didn’t worry about it until things got worse. Finally, when she was 15, an EEG revealed she was indeed having seizures. However, the medicine she started taking made her tired and she would sleep through her classes, so she stopped taking it.

Then, at 19, her sister was driving her back to the University of North Carolina at Pembroke. It was early morning, and she noticed the sunlight was flickering through the trees. The next thing she remembers is waking up in the hospital. “People around me were freaking out, telling me that I had a grand mal seizure,” recalls Amy. “I had dislocated my jaw and was talking funny.”

She was released from the hospital in a week but over the next eight years, the seizures increased in intensity, triggered predominantly by lights in the morning. What’s more, she had no insurance and took no meds.

By this time, Amy had two kids with another one due in two months, undoubtedly not the best time for another seizure. But since they don’t occur on a specific schedule, she found herself once more convulsing on the floor. Actually, her 7-year-old daughter found her on the floor and contacted a neighbor. “It was like that commercial, ‘I’ve fallen and I can’t get up.’ I could speak but had no idea what I was saying.”

Against all odds, this hospital trip changed her life for the better. “This amazing neurologist taught me what was going on and how to manage seizures. I learned that the time between sleeping and waking is a fragile place for me. I need to be patient and wait for light to kick in.”

So where does the “seizure-iffic” part come in?

Between the point when a seizure starts to subside and the person begins to return to their baseline condition is something known as a postictal state. This period of time can last anywhere between five and thirty minutes. When Amy is in this altered condition, all she knows is her name and believes if she closes her eyes she will die.

But following these initial symptoms, she lives in a sort of euphoria for anywhere from one day to two weeks. “Everything is wonderful and I feel like I can do anything. If I had a million dollars, I’d give it away,” she says.

Which is why her husband insists she not deal with money in this postictal state. He also can’t tell her she’s had a seizure or she’ll immediately have another one.

“My body’s in pain, but I’m on cloud nine, with no worries,” she elaborates. “I can feel my dislocated jaw, sore shoulder, ribs, and bad back, but if you ask me how I’m feeling, I’ll say I’m fine.”

Amy calls this feeling “seizure-riffic,” but it serves a greater purpose than being able to ignore pain. Her husband James believes this is her reset button. “It’s like the glitter in my brain. Hey, I can’t control it, so I have some fun with it,” Amy admits.

Truth is, she embraces her seizures by treating it like a co-worker. “I urge others to be aware of what they have and make it work for them. It’s empowering to know the facts of your condition and how it affects your life. Don’t let seizures impact your dreams!”

Now, Amy takes her meds and is fully cognizant of her strengths and limitations. “The best doctors are the ones who can teach you as well. I’ve learned what my brain looks like, what it’s doing before and during seizures, and how it affects my life.”

One of those limitations is her memory. “If a friend asks if I remember something, I’m not sure if the image in my mind really happened or I’m just creating a memory.” She can’t recall her middle child’s birth or certain vacations. To counteract this, she constantly writes notes, especially those related to work—she was recently named Director of Counseling for Kingdom Community Development Corporation, a HUD-approved housing agency.

Carrie Collins-Fadell, CEO of the Brain Injury Alliance of Arizona, believe Amy is a testament to owning her brain injury. “She lives with the reality of her seizures and accepts the accommodations she has had to made. Keeping notes, passwords and schedules is one of the keys to effectively working with the ongoing effects that seizures have had on her brain,” Carrie attests. “Her husband’s support is also instrumental in her ability to navigate life. And it doesn’t hurt that she can laugh about it.”

Amy Kemp may have fallen but she sure knows how to get up…with an amazing sense of humor, each and every day.

ABOUT BRAIN INJURY ALLIANCE OF ARIZONA

The Brain Injury Alliance of Arizona (BIAAZ) is the only statewide nonprofit organization dedicated to improving the lives of adults and children with all types of brain injuries through prevention, advocacy, awareness and education. BIAAZ also houses the Arizona Brain Health Resource Center, a collection of educational information and neuro-specific resources for brain injury survivors, caregivers, family members and professionals.

What began in 1983 as a grassroots effort has grown into a strong statewide presence, providing valuable life-long resources and community support for individuals with all types of brain trauma at no charge.

The Brain Injury Alliance of Arizona:

  • Works with Congressional Brain Injury Task Force
  • Houses Arizona Brain Health Resource Center
  • Hosts Statewide Opioid Use Disorder & Cognitive Impairment Workgroup
  • Has Statewide Opioid Use Disorder & Cognitive Impairment Response team with peer support, training, and family wraparound services
  • Facilitates Brain Health Advisory Council
  • Manages statewide Neuro Info-Line: 888-500-9165

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