OK, sooo I decided to write about my lifelong struggle with epilepsy. I was diagnosed with epilepsy at around age 5 or 6, and was shuffled to many different doctors. Some said that I would probably outgrow my seizures as I got older. Well, it's 42 years later, and I still have them. LOL.. Anyhoo, I have both petit mal and grand mal seizures. The grand mal ones are very, VERY scary to go through, and each time I went into one, I remember thinking "God, please let me live through this".
I had grand mals rather frequently as a kid, and practically every day at school. I remember thinking that I must be the only one in school who had epilepsy, but another girl with my same name, also had them too, though I don't remember her ever having them at school. One day after a big seizure at school, I gave a note to my classmate Amanda, and said "you probably think I'm weird". The kids would always stare at me during and after a seizure, never quite knowing what was wrong with me. Anyways, Amanda's response to me was, "I have a cousin who has seizures".. That made me feel somewhat better, knowing I wasn't the only one in the entire world who had them.
I have been on nearly every seizure med there is: Tegretol, Dilantin, valproic acid, to name a few. Nothing worked very well for me, and since I HATED taking them, I used to hide them downstairs in our house behind the stairs and in back of a small fridge my dad had down there in his bar.. Needless to say, that probably did me irreparable harm, but what kid likes having to swallow huge pills twice a day? LOL
When I was real young, I'd take naps and my mom said I'd wake up groggy, drooling and sounding like Polly Parrot. She's a nurse and even she didn't know what was wrong with me. There was never any rhyme or rhythm to when my seizures happened. They happened at home alot, and alot at school. But I don't recall ever having one while I was at friend's houses, or staying overnight somewhere.
Fast forward to 1997. I was 27 years old, and still having grand mal seizures on a regular basis. Doctors say some patients can tell when a seizure comes on, that they'll have a metallic taste in their mouth or see an aura. I had no warnings whatsoever before my seizures hit. I'd be fine one minute, then BAM! I'd be flopping around on the floor. I met a neurologist who promptly put me on Keppra and Lamictal. FINALLY I had some meds that worked!!!!
My grand mals are fully under control, although my petit mals, or "startle seizures" as I call them, still happen nearly every day.. My neurologist has adjusted my meds many times since, but they still occur. The startles always happen out of nowhere. Sometimes it's when the phone rings, or a car horn blares, or someone slams a door. I can't express what a pain in the butt it is to have them all the time. Incredibly annoying to say the least. But I figure it's a small price to pay, to not have the grand mals anymore. The petit mals usually are just a few minutes, then I'm okay. But sometimes it takes up to an hour, before I can talk coherently and form a thought that is fully connected. Again, frustrating because what I WANT to say comes out as unintelligible gibberish. I was on the phone one time with my sister, and had a petit mal, and it was over an hour before I could talk coherently again. And she stayed on the phone with me that entire hour.
For anyone who has never had a seizure, they are scary. Very scary, and annoying and frustrating. Whenever I had a grand mal at home, my bladder would let loose and soak my blankets, clothes and mattress. As I grew older, my bladder held during seizures. Thank goodness.. lol
If you're wondering what I've learned from having epilepsy, well, that's an excellent question.
I have learned compassion for those who have it, and I've learned not to think that a person is "different" just because he or she has seizures. I am grateful that my seizures are no longer anywhere near as strong as they used to be. I wish they were gone entirely, but I have accepted the fact that probably won't happen in my lifetime. As far as blessings that epilepsy has brought me, let me think...... I know that having epilepsy gives me a unique story to share with others.
If it helps them, that's awesome. I think I have been blessed with compassion, and understanding of how others feel when they have a seizure. I have been blessed with knowing what to do if I'm with someone who has a seizure. It's been said to hold the person down, or put a spoon in their mouth. That is absolute rubbish. A person cannot actually swallow their tongue. All you have to do is turn their head to the side, put a pillow or something under their head, and dial 911. I have been blessed with the ability to explain to others, why a person is having a seizure, and that they WILL be okay once the seizure is over. I don't know why I still have seizures, but I do know that God has a plan for me, and it includes epilepsy. I used to think that my seizures made me a freak. Now I know differently. I used to think "why ME, Lord". And the answer came, "why not you".
I know a few people here have epilepsy, but I never see them speak about it. So maybe my WHY, is so that I can share my story with others. Thank you, Lord, for my seizures. They have made me stronger and given me a purpose to serve You. Thank you for my excellent typing skills, my knowledge of computers and excellent spelling skills so that I can convey what I want to say to people.
Be blessed, everybody. And thank you for reading my latest testimony. Your encouragement and support mean more than I can say.
