Editors’ note: In recognition of Purple Day® on March 26, Clare Karlovec shares how epilepsy has affected her younger sister and their entire family, and why Purple Day® is so important to raise awareness about epilepsy and support those with seizure disorders.
The first seizure I remember my little sister Julia having was in our family’s parked car in the garage; Julia was two years old, and my twin sister Allison and I were seven. My mom had just wrangled all three of us into the minivan, with Julia in her car seat, and we were about to set off for our piano lesson when we noticed Julia making noises and her body shaking. At first, we thought Julia was being funny to try to get our attention, but then we noticed the worry our mom had as she quickly jumped out of the driver’s seat and rushed to Julia’s side. Since then, that worry that our mother expressed was transferred unto us; the brief moment that we had thought she was being funny had completely vanished, and we worried about every seizure and the possibility of more ever since.
Epilepsy became a part of our lives. Our parents tried to educate me and Allison as much as possible about what epilepsy was, and what to anticipate when Julia was going to have a seizure. Julia’s seizures became less terrifying to us as we started to know what to expect and how to handle it. We had brochures pinned to our kitchen refrigerator underneath smiley-faced magnets about the different types of seizures and how to respond and help her.
We watched as Julia tried many different medications, taking many pills at a time, to find the right combination and dosage to manage her epilepsy. Her medicine would work for a couple of months and lessen the number of seizures she had, but oftentimes its affectivity would decline and the number of seizures would climb up again before she had to try a higher dosage or new medications. Allison and I would make a fuss about having to swallow a Tylenol, so seeing Julia take six pills at a time really put things in perspective for us. Suddenly a tiny Tylenol didn’t seem so bad.
We listened to her talk about how she felt like she was different and not accepted because of her epilepsy. We knew that Julia was having a difficult time accepting her epilepsy because she felt so isolated. Even though Julia may have felt alone at times, we made a constant effort to prove her otherwise by sticking by her side, believing in her, and supporting her in anything that she wanted to do. We were constantly worried about her safety, and always wanted to be as protective as possible, maybe sometimes “too overprotective” as she likes to say.
What our family’s journey with epilepsy has taught us is that spreading epilepsy awareness is so important. It’s surprising how limited people’s knowledge about epilepsy and seizures is. I’ll never forget about the time Julia had a seizure at a restaurant during dinner, and a woman at a nearby table exclaimed, “Put a spoon in her mouth!” These kinds of comments demonstrate how most people don’t know what actions to take when someone is having a seizure. Once you know what to expect and how to react to someone seizing, you can handle the situation more easily, and in turn create a calmer environment for the person seizing to regain consciousness in.
Julia has amazing strength and courage that she sometimes doesn’t even realize she has. I admire her for facing many physical and mental challenges along the way with such determination and the willingness to keep trying. Her epilepsy may make her different, but she certainly does not let it limit her, or stop her from enjoying life. I continue to be inspired by her.