Love Notes and Managing Epilepsy
UCB Advocates, Melanie and Greg, walk us through their daily routine when it comes to managing epilepsy and a number of Melanie’s other conditions. They also discuss some of the tough and triumphant life events that strengthened their relationship.
Greg: I started dating Mel when I was in the 7th grade. She’s 4’10”, and I had the locker below hers. I wanted to switch lockers so she wouldn’t have to reach up to the top one. She said “no,” and that she was going to get her boyfriend to say something to me. (She thought I was picking on her because of her height.) I told her, “I’m going to marry you one day.” Well, that worked out! It’s been fun.
Melanie: We’re goofy. We send little love notes during the day. “How are you doing, baby?” We let each other know that everything is okay, you know what I mean?
Greg: Usually, it’s text messages in the morning to find out how she’s doing and making sure she’s not overwhelmed by the day. When she texts, I can tell if it’s a good day, mediocre day, or a bad day.
Melanie: I have to have the same routine every day especially with the memory issue. Sometimes it’s hard to remember what I ate. If I’m reading a book I can’t remember the previous chapter I read. I deal with temporal lobe, complex partial, simple partial, and generalized tonic-clonic seizures. After those tonic-clonic seizures goodness, I feel like I’ve been through a marathon. From my head to my toes, it hurts so bad.
In addition to epilepsy, I live with diabetes, high triglycerides, migraines, and pancreatitis. I have to take 17 pills a day, not including the insulin shots I take. “Have to have this on an empty stomach.” “Got to take this before food.” “Have to take this one after food.” The medication is really complex, so I write on my mirror with a dry erase marker. I have a checklist each day.
Greg: When she wakes up in the mornings, everything has to be in order. Bathroom, meds, coffee. But if you switch it up—meds, coffee, bathroom— her day is totally ruined. The other day, I called her while I was away. I joked with her, and she simply replied, “I’m overwhelmed.” I could tell in her voice. “I’ve got to go to a service tomorrow; I’ve got this doctor’s appointment,” and she rattled off the rest of the to-do’s that weighed on her. I said, “Stop. Relax. Forget about everything else, then take one thing at a time. If you get it done, great! If not, don’t worry about it.”
By the time I talked to her, about 30 minutes later, she had calmed down and her personality was totally different. The “overwhelming” part triggers the seizures. I also have to watch her blood sugar. I’ve noticed that her low blood sugar is another trigger. If her sugar is low, and she has a seizure at the same time, I won’t know how I’d get either medicine in her. So we definitely watch that.
Melanie: When he leaves, I have another helper at the house with me. My husband rescued this dog he found in the snow. I was afraid of dogs, so I called my husband, not knowing he’d put her in our yard.
Greg: Mel called me while I was out and that’s when I told her about the dog. A little later, I asked about the pup, and Mel said, “Oh! She’s on the couch with me, and she told me her name is Chloe.” But get this one day, Mel was walking around near the top of the stairs, and Chloe knew something was up. Chloe stood between Mel and the stairs and pushed her back to the wall, as Mel had a seizure.
Melanie: Chloe is not a service dog. We didn’t train her at all. When I have that “buzzing feeling,” I sit or lay down, and make sure I have some water and my telephone. By that time, Chloe is already near me, and if I have a seizure, she lays on top of me. She literally blocks the stairs.
Greg: That dog won’t leave Mel’s side. She will paw Melanie like, “It’s going to be okay. It’s going to be okay.” It’s really touching because I don’t know Chloe’s background at all.
Melanie: We’ve seen some things as a couple that have drawn us closer together.
Greg: A few years ago, I fell 35 feet and broke my neck. I broke the same bone that Superman broke before he was paralyzed. My daughter came here, thinking it was the last time everyone was going to see me. Melanie was upset because she felt like she wasn’t going to be able to take care of me, but she was my rock. It was like she was able to put everything away to come take care of me. Now, I’m able to walk. That’s just one of the things that made our bond stronger.
Melanie: My faith in God is so strong. I lean on my husband, my family, my sister, but God is number one. Then, our daughter got into a car accident. She shattered her pelvis and couldn’t walk for a while. I couldn’t be there due to seizures, and as a momma, that killed me.
Greg: It took a lot of persuasion, but I convinced her to let our daughter’s mother-in-law help out.
Melanie: Since I couldn’t be there, I got my daughter these Wonder Woman bracelets you know, the ones that deflect flying bullets? I told her when she encounters something tough, just hold up your hand and “peww pewww” to your troubles and your challenges. I guess it’s the same in my case with living with epilepsy and the other stuff I’m dealing with. “Peww pewww!”
