I started having seizures just a few months ago at age 47 in connection with hormonal shifts. It seems my brain is getting better at it... they are increasing in frequency. I have gone from being a busy, productive member of my family and community, to being unable to even carry my grandchildren (they are infants and I could drop them). Now my family tiptoes when I have to go lay down because I'm having "episodes." They are constantly asking if I'm "okay" which is so thoughtful and caring. But things just aren't the same. The worst is "waking up" on the floor and seeing my husband and son's concerned expressions. It is so hard on them! My husband spends almost all of his spare time researching potential solutions, in between looking at me with sorrow. I just wish I could disappear. Meanwhile we are racking up medical bills with no answers in sight.
Surprisingly, I don't mind stopping my life. I have lived a full life that has been rich with experience. I don't mind disconnecting from all of the groups and friendships I have had because I can't bear the expressions after I have one of the seizures and I don't want to be a problem in public. I don't mind staying home (I can't drive and florescent lights are one of my triggers... and those lights are EVERYWHERE--- who would have known that someday I would be wistful of walking at Costco seizure free?) But I do mind my husband looking disappointed because I'm having seizures "again". You should see his face. He reluctantly told me how he had always valued how strong and active I have been and now he feels like he's lost me and he's alone. The whole thing is not fair to my family. And I can't control it at all. I try to stick my room when I feel one coming. But I don't always feel them coming. I try to stay out of the way and I don't tell them I am having them if I can avoid it. But it doesn't work. Sometimes people are around when I have them. Meanwhile, I am completely aware that things could be so much worse in thousands of ways. I am incredibly blessed with an amazing family and husband who care. And it is awful to see people I love feel trapped by something that I can not control. How do you help your family cope? How do I survive feeling like the weakest link?
Surprisingly, I don't mind stopping my life. I have lived a full life that has been rich with experience. I don't mind disconnecting from all of the groups and friendships I have had because I can't bear the expressions after I have one of the seizures and I don't want to be a problem in public. I don't mind staying home (I can't drive and florescent lights are one of my triggers... and those lights are EVERYWHERE--- who would have known that someday I would be wistful of walking at Costco seizure free?) But I do mind my husband looking disappointed because I'm having seizures "again". You should see his face. He reluctantly told me how he had always valued how strong and active I have been and now he feels like he's lost me and he's alone. The whole thing is not fair to my family. And I can't control it at all. I try to stick my room when I feel one coming. But I don't always feel them coming. I try to stay out of the way and I don't tell them I am having them if I can avoid it. But it doesn't work. Sometimes people are around when I have them. Meanwhile, I am completely aware that things could be so much worse in thousands of ways. I am incredibly blessed with an amazing family and husband who care. And it is awful to see people I love feel trapped by something that I can not control. How do you help your family cope? How do I survive feeling like the weakest link?
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