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When Epilepsy Caused Me to Forget My Husband

Imagine looking at your husband and saying, “I’m sorry, I have no idea who you are.”

Yes, that happened.

We’d been married almost five years when I had the tonic-clonic seizure. He knew something was wrong while I was in the hospital but thought it was the after effects of the seizure. I was still acting strange a week after being discharged, but I provided no explanation. He finally said to me, “I know something is wrong. You have to tell me what it is.”

That’s when I told him I had no idea who he was.

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I went on to say that I didn’t remember meeting him, dating him, marrying him or the house we lived in. He was stunned, to say the least. Then I looked at him and asked whose dog that was. He said she was ours, and I responded with, “That’s not my dog. I’ve never wanted a dog.” There are few things that leave my husband speechless. Needless to say, this was one of them.

Apparently we went on two vacations where we drove over 3,000 miles each time. The first one included Dallas, New Orleans, Pensacola Beach Island, Atlanta and then back home to Lexington. The second was in the opposite direction and included Niagara Falls, Ontario, Boston, New York, Washington D.C. and then home. I remember nothing from either of these trips. We tried looking through pictures and videos from the trips but still no memories surfaced. We looked at a picture that had myself and a girl in it. I asked him who she was, and he responded, “That’s your sister.” Now I was the confused one. I remembered that I had a sister but didn’t recognize her in the picture. This is how we learned about “memories without context.”

We’ll be out somewhere and someone will come up to me and start talking to me or hug me like they’ve known me my whole life. I turn towards my husband in terror because I have no idea who they are. These are people we’ve been friends with, worked with, went to church with, etc… He gives me a little more information to see if it will jog something in my memory, but it doesn’t. I just shake my head, and he understands I don’t remember. He then explains the epilepsy diagnosis and subsequent memory loss. The reactions vary from confusion, shock, apologetic to literal disbelief — as in they think I’m lying. What’s worse is if we meet them again an hour later, the next day, next week or longer, there’s a good chance I’ve forgotten them again.

After talking to my doctor and researching, we learned this is fairly common with epilepsy but especially for someone like me. Epilepsy takes a toll on the brain and entire body. Living with it untreated for 43 years was especially taxing. My brain was in survival mode for years. It was doing its best to keep me alive while a constant electrical storm was raging. Memories are just another thing that took a backseat in the brain’s order of operations. It was chipping away at the memories the entire time, but I wasn’t aware. So, when the climax finally came in the form of the tonic-clonic seizure, the memory bank was wiped out.

My husband kept trying to help me remember. It was stressful for him. I had the luxury of not remembering; he didn’t. He remembers everything: our meeting, dates, wedding, vacations, etc… He also remembers the day it all was taken away and the painful aftermath. Little did he know, it was stressful for me too. I didn’t remember the life we had or the seizure that changed it. I wanted to and I tried. I went through the entire human emotional cycle. I became angry, depressed and desperate. I even thought about leaving him and starting over by myself. That devastated us both, but I didn’t know what else to do. I wanted to run away from it all. This wasn’t my life. I had no idea where I was supposed to be, but I knew it wasn’t here. I wanted out.

After a few more appointments, the doctor explained that the memories were gone forever. He said we needed to let the past go and start completely over. Most men would have let their wife go if she forgot them. Not mine. He said I was worth fighting for and he wasn’t giving up that easy. So he literally asked me out on a date. I accepted. He’s even asked me to marry him again, but I haven’t decided yet. So far, all indicators point towards him being a keeper.

He tells me stories about us. Some are funny. Others are sad and scary. I like to hear them though. The memories are gone forever, but he will keep them alive for both of us. Even when he has to tell me the same stories again today because I forget he told me yesterday.

Do you have a story about your experience with epilepsy? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.