• September 21, 2014

Cove resident to start support group for debilitating disease

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Posted: Friday, February 28, 2014 4:30 am

Susan Ayres’ life didn’t flash before her in an instant. The accident wasn’t an all-consuming earth-shattering experience that changed her life forever. It was a hit from an impatient driver at a train track that propelled her car into an adjacent parking lot.

Ayres hit her face on the steering wheel and a lifetime of remembrances disappeared. The assistant principal and doctoral candidate vanished. The extrovert became a hermit and had to rely on her husband for her memories.

Four bone grafts, a tumor removal and two years of catatonic seizures later, Ayres realized she had to live with trigeminal neuralgia for the rest of her life.

“It’s a little-known thing that’s referred to as the ‘suicide disease,’” she said. “It’s the worst pain known to man. I can no longer drive, it hurts to eat, blink, drink, breathe, the pain is so bad.”

Trigeminal neuralgia is a nerve disorder that causes stabbing or electric-shock-like pain in parts of the face. It is caused by pressure on the trigeminal nerve from a swollen blood vessel or tumor.

After the accident, the blank stares from friends and strangers who didn’t understand her disease drove her indoors until volunteering saved her life.

“I grew more determined and it forced me to get out and meet people again,” Ayres said. “Now I want to help others better understand the disease. I want to start a local support group and reach out to other sufferers. I want to create more awareness and encourage people to learn about the disorder.”

Ayres is the vice president of the Copperas Cove Noon Exchange Club. She is on the Library Advisory Board and is a member of Friends of the Library.

The one lesson she learned from this whole experience: “You can’t always tell by looking at someone what’s wrong with them,” she said. “Someone may look perfectly fine and park in the handicapped spot, but you don’t know what they’re suffering with, so don’t judge them.”

For more information on the disorder go to fpa-support.org/. If you’re interested in joining a support group, call Ayres at 254-542-5165.

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