John’s Story

My husband, John, was diagnosed with epilepsy at the age of 20 after suffering a grand mal seizure. Medication controlled his seizures and he did not have another for 5 years. However, since the age of 25, John has had 26 grand mal seizures and dozens of staring episodes and petite mal seizures. He has had seizures at work, a seizure while cooking and set himself on fire, a broken nose, broken jaw, lost teeth, 3rd degree burns, and so many seizure-related injuries.

The most terrifying part of having a spouse with epilepsy is the constant worrying. I’m always on guard; every time the phone rings I fear it’s a hospital calling; every time he doesn’t answer his phone at work I’m scared to death something happened. And sometimes the fear is confirmed when his employer calls to tell you he’s been taken to the hospital.

I have been judged by other people as a “crazy” because they just do not understand the worry that comes with never knowing when a seizure will strike. One minute everything is fine and the next our lives are turned upside down and we are in the hospital. The worst part of this nightmare is the fear in the faces of our four small children as they witness these seizures. There have been days where they were afraid to go to school because they didn’t want their dad to be home alone. Fortunately, John’s employer is very accommodating and understands his disability.

John has overcome great obstacles and endured so much ridicule from judgmental people who do not understand his condition. He has a slight speech impediment caused by the epilepsy and to this day is still very sensitive about it. I just thank God that so far either myself or someone else has been there for every seizure to assist him and get him the emergency care he needs. We are forever grateful for the goodness of neighbors and others who have helped countless times. Hopefully one day there will be a cure and we will not have to live in constant fear of another seizure coming.