Susan’s Story

The morning after my only child, Matthew, was born, I had a stroke. To save my life, doctors performed emergency brain surgery. I thought my stroke was horrific. However, nothing could have prepared me for the horror I would experience next.

I had my first seizure only days after my discharge and had another brain operation for a brain abscess. I finally returned home when Matthew was three and a half months old. However, the seizures continued.

Years of medication roulette followed, causing debilitating side effects. Matthew would call out, “Mommy,” and my husband, Bill, would respond. It was devastating to be in such a brain fog from the medications that I could not hear my own son’s calls.

Despite medications, my seizures became stronger and more frequent. After three years of attempted seizure control, doctors recommended two more brain surgeries. I decided the chance of living seizure-free was worth the risk. After surgery, I had to learn to walk for the fourth time in my life. I was eventually discharged with surgical strips affixed to my bald head. I looked like Frankenstein to my three-year-old son, who asked Bill, “Why is she with us?” It was heartbreaking to become so terrifying to Matthew. Worse yet, I was home only a few weeks when the seizures returned.

Epilepsy has robbed me of control over my life. The anxiety level in our home is palpable. We walk on eggshells each day, not knowing when the next seizure will strike.

Now a teenager, Matthew may never have a mom like other moms. I hope that someday soon he will have a mom without seizures.