A couple of months ago I wrote my story, my epilepsy experience, for a school survey. One of the questions asked how our significant others or parents deal with this. Call me selfish but before that I haven't thought about what it was like for my parents when I lived at home, or my husband whom I live with now...
My mom used to wake me up every day for high school. She'd come in my room with my pills in one hand and a drink of water in the other. Every night before I went to bed she would ask me if I took my medicine and if I didn't I got scolded. "How hard is it to remember to take your medicine?! Do you have a death wish?!" At the time I saw her as a nagging mother but now that I'm older I see that she was worried and concerned.
My mom also picked me up from school when I was having partial seizures. One time it was around lunch time and I was trying to eat my lunch in the car. Every time I picked up the food to take a bite my arms would have tremors and I'd drop the food back onto my lap. I remember my mom saying, "Quit that! It's freaking me out!". I knew she was only half joking because she knew I couldn't help it, but after that remark I just laid the seat back and tried to sleep.
I was dating Jim when I had my last seizure. Kevin and I were living in an apartment with him in Deland. I had lost my insurance and couldn't afford my medication. I tried to avoid my triggers: stress, computers, sleep deprivation... But I needed my medicine. I called my mom to tell her I felt a seizure coming on and I was worried because I was home alone with Kevin. She said she heard the phone drop and called out for me, but when I didn't answer she hung up and dialed 911.
I remember hearing a knock at the door so I opened it. Men (it was the paramedics) came in and started talking to me and asking me questions but I couldn't understand any of it. They took Kevin and I to the hospital in the ambulance. Kevin was brave, not freaked out, and curious about what was going on.
My mom called Jim and he met us at the hospital. The doctors gave me my medicine through an I.V and once they were pleased with my levels I was discharged. They also gave me a prescription so I could buy my medicine. As I didn't have a job my mom was going to pay for it but Jim held up a hand to her then handed his card to the pharmacy, "I'll pay for it," he said. He told me later that he'd always find a way to pay for my medicine. Whether he has to sell his video game systems, video games, or our t.v because all those things can be replaced. I, however, cannot be replaced.
I have not had a seizure since that day and Jim has kept his promise. He keeps looking after me just as my mother did when I lived with her. He'll open the medicine cabinet and if I'm getting low he'll tell me to call the doctor or call my prescription into the pharmacy. He too asks me if I took my medicine in the morning and at night. What I saw as annoying growing up I now see the love and concern behind it.
Growing up I thought that epilepsy was only hard on me. After all it's my life that changed, right? No. My parents had a seemingly healthy daughter for fifteen years then their world was turned upside down also. Like me they worried where my next seizure would take place. I have no doubt that they still worry but hopefully my thoughtful, caring husband has put their minds at ease.
Some days he worries too much. It's illogical since I'm on my medication and haven't had a seizure since 2008, but fear of losing a loved one can cause a loss of rational thinking. He used to call me five times a day and if I didn't answer every call he'd come home in a panic. Now I try to text him through out the day or call him first so he knows I'm okay.
So what I gather from watching my husband and my parents worry about me is that loving someone with epilepsy is just as scary for them as it is for me. I worry that one day my meds won't be enough, that maybe I'll have a seizure while driving, or in the shower... Things my husband, reassures me, that he's thought about and worries about too.
As a mother of two handsome boys, now I worry about my sons inheriting this disorder. However, it is highly unlikely. I know I wouldn't love them any less. It would just make me worry about them even more.
Epilepsy. It changes the life of not only those who are diagnosed, but everyone around you too. So take heed: living and loving someone with epilepsy is not for the faint hearted.
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