My Sister Has Epilepsy - By: Jessica Krzywonski

My name is Jessica Krzywonski, and I go to Louis D. Brandeis High School in San Antonio, Texas. I’m in Air Force JROTC. I want to study Neurology and find the cure to Epilepsy for my sister.

My Sister Has Epilepsy

1.      How was your sister before she got sick?

"Goodness…She’s been sick for awhile now, it’s hard to remember. I remember Amanda used to be so lively. She was always going out with friends, laughing and joking around about who-knows-what. We weren’t particularly close before Mandy was diagnosed with Epilepsy, but I suppose that all changed when she started having seizures."

2.      When did you notice your sister starting to become ill? What were her signs/symptoms?

      "For a long time, Mandy had headaches almost every day. They started somewhere around the time we moved to Texas in 2005. She would wake up complaining of a migraine and not being able to see.  Around the time the migraines came on, so did the blinking, twitching and staring. No one in the family knew what it was; we thought it was a bad habit, like nail biting. We would call her “Blinky” or “Twitchy”. I know, I know…pretty messed up of us, eh? Anyhow, there was one specific day when everyone actually realized something was wrong with her. Mandy was in 7^th grade and had been at a friend’s house. I was sitting on the floor watching T.V. and here comes Mandy being dragged inside, hardly coherent of anything going on around her. After that, it was all downhill. She started having more of these episodes accompanied by auras, then convulsions followed by brief memory loss. We honestly thought she was using drugs because of the condition she was in during her seizures. We didn’t even really know what seizures looked like at the time."

3.      What was the illness like/ how did it affect your family? Did it start fights; did it scare you, etc?

"The illness was mainly characterized by auras, migraines, insomnia, and then leading to seizures - basically every symptom I’ve ever heard of that Epileptics suffer from. She has almost every type of seizure. Because of all this, Mandy began doing half days at school, and then eventually a full time homebound program. My dad had to quit his part time job to stay home to take care of her. So you can only imagine the financial struggles my parents had to, and are still facing just to paying for all the doctor appointments, ambulance fees, medications and such. There were countless arguments between my parents about money and “How on Earth Amanda is ever supposed to live on her own?”. I even took on my parents once or twice, declaring that my two younger siblings and I needed attention too. At the time, I was only about 11 and very naïve. I grew up quickly, I’ll say that. There were many times that I thought Mandy was going to die during one of the attacks. She would turn blue, stop breathing, and yell things like, “Don’t let him take me away! Don’t let him touch me! Daddy! Save me! Who are you? What are you going to do to me?” The word “scared” is underrated."

4.      Did her sickness affect your relationship as sisters?

"As I mentioned earlier, Amanda and I weren’t very close before she fell ill. We bickered often; the 2 ¾ year age difference got in the way most of the time. I’d have to say we only began to get along after she was diagnosed with the Pituitary tumor. I didn’t understand that not all tumors were malignant.  I started cherishing my time with her, waiting on her whenever she needed me. After the Grand Mal seizures came on, I really stepped it up. Anything snide she would say to me I would just disregard because I feared something would go wrong and she wouldn’t wake up the next morning. This whole attitude pretty much carried on throughout the years.  Of course I got more mature and she started talking to me like a friend, and I did the same to her. I’m still there for her as soon as she needs me, but I don’t feel like I’m obligated to wait on her hand and foot. I guess what I’m saying is we earned each other’s trust and respect, so I want to help her. We argue sometimes but it’s never a big deal."

5.      When did your sister get diagnosed with Epilepsy?

"When I was about to go into 6^th grade, we found out Mandy had Epilepsy."

6.      What is your sister like at her best and what is your sister like at her worst?

"At her best, Mandy’s giddy and playful; always cracking jokes on someone. She might get all dolled up to go out with her boyfriend, or put on an apron and go to work cooking something insanely delicious. At her very worst, she’s on the ground having a seizure. When she wakes up, she can’t remember certain things. After a few minutes, she regains her thoughts but feels sick, so she goes to her room and sleeps for a very, very long time."

7.      What are your feelings toward her illness? Describe them in detail.

"I can’t even begin to explain my sympathy for my sister. I wish I could take on her illness so that she could be seizure-free, but of course, that’s not possible. I feel bad if we’re arguing and she goes into a seizure – that has been known to happen with Mandy. Even though it has been almost five years since she’s been diagnosed with Epilepsy, and I’ve become more educated about the disease, I still am very much afraid when Amanda has an attack. Sure, everyone in my house has been coached on how to assist her in the instance of a seizure, but we can never truly know that she’ll come out of it. We just expect and hope that she will. It makes me sad to see my older sister sick. It crushes my parents, even though she frustrates them sometimes by just being an eighteen-year-old. Mandy’s illness definitely has an impact on the family."

8.      How have you learned to care for your sister during a seizure?

"The first thing I do is make sure she’s on her side, so she doesn’t choke. I immediately begin stroking her hair, (it seems to calm her down). Sometimes she’ll reach for my hand and I’ll hold it throughout the entire seizure. We always have one of my younger siblings grab a pillow for her neck. At times I’ll have to hold her on her side because the convulsions may knock her to her front or back. If the seizure looks like it may turn into a Grand Mal, we give her Lorazepam, which basically knocks her out. If it’s a small seizure, we let her have it, then put her to bed. The only thing that we can do nothing to prevent is Mandy biting her tongue."

9.      Are there any extra measures your family/you had to take in order to ensure your sister’s safety?

"Like I mentioned earlier, my dad had to quit one of his previous jobs to take care of Mandy. Over the years she’s learned to take care of herself to a point, so he’s back in work. Before Mandy’s VNS implant, I had to stay home often to take care of her when my parents weren’t around. I remember being so stressed because I felt like I was the big sister, having to watch her and my two younger siblings. Everyone in my family gets overwhelmed with Mandy’s illness at times, but we’ve learned to handle it. A few years ago, when the seizures began, my uncle would frequently come and pick us up when Mandy had to go to the hospital. My grandma from Michigan, who has her own family to support, came and stayed with us for almost three months because Mandy was so sick. Nowadays, we do have to take a few precautions, but my sister is old enough to watch herself. She’s not allowed to lock the bathroom door, because she has had seizures in the shower before and we weren’t able to get in. No animated arguments can go down around her, because it stresses her out and every time she goes into a seizure. This next one, Mandy is responsible for sticking with – she cannot drink alcohol, much less do drugs. It counteracts her medication and can be fatal."

10.  If you could give some tips to other people with epileptic family members what would they be and why?

"Don’t get so frustrated with your Epileptic family member. It’s harder on them than it is on you. There have been times when I wish I could have a normal sister who doesn’t need so much attention, but if Mandy wasn’t Epileptic, she wouldn’t be Mandy. Now, the most important thing I can tell you is this: you’ve got to have some source of faith – whether it’s God, Allah or Buddha. You will not get by on chance that everything will be alright. I’ve dropped to my knees in feelings of desperation many, many times. My family would be in pieces without my Savior, Jesus Christ. You need a point of hope, someone to listen to and answer your prayers. It doesn’t matter if your loved one has Epilepsy, or if you yourself are a victim; you need faith."

-------------------------------------------------------

Be an advocate, share your story. Click here to learn more. - EpilepsyFoundation.org