Today is Purple Day to support those who have Epilepsy worldwide so bring out your purple shirts and show some love.
In honor of Purple Day and those that struggle with seizures, my sister and I have decided to share her story and experience with seizures. For me, I just wanted to share my experience and what it was like witnessing her first seizure because at the time I didn’t even know what was happening and I feel like a lot of people probably feel the same way when they first watch their loved ones go through something like this. So here it goes…
I can’t remember the exact day, but it was in early November of 2002, my sister was in her Freshman year of college, I was a Sophomore in High School, it was a weekend and sometime in the late morning early afternoon, and I was siting in the front room of our family house and my mom went downstairs to the basement to do laundry and all of a sudden I hear my mom yell for my dad, all I heard was “ART! ART!” I honestly can’t remember where my dad was at the time, I think maybe outside, so I ran to the basement and went down the stairs to see what my mom wanted and I see her trying to hold my sister up and almost carry her at the same time, and when my mom saw me she told me to run and get my dad, to tell him to call 911. My mom had this look on her face that I never seen before, she was scared and worried and trying not to freak out in front of me at the same time. I ran upstairs and got my dad, he was in the front room by the time I got back upstairs and I told him mom said to call 911, that something was wrong with Jackie and that mom needed him downstairs right away. At the time, I’ve never seen my dad move so fast in my life. He grabbed the house phone and ran down the stairs.
I remember being frozen still in the front room scared to move. I had no idea what was going on and I was terrified because something was wrong with my sister-my big sister- who I thought was unstoppable and that nothing bad could ever happen to. My sister and I used to fight a lot, I mean we’re siblings so of course we bother each and get on each other’s nerves, but I always looked up to her and she was always this bright person that I knew I could always count on.
I saw my dad coming up the stairs, not too long after, carrying my sister and he laid her on the couch in the front room and that’s when the ambulance started showing up. I remember my sister had this blank stare and she was loopy and not really responsive, she was talking gibberish basically and her movements weren’t controlled, like her arms were just loosely hanging off the couch, her head was slowly swinging back and forth, she had no real control over her limbs. I noticed she had one sock on and one off and I remember going to grab her another sock while the paramedics examined her. When I got back to try and put her sock on she was moving her feet around and she started laughing thinking it was the funniest thing ever, while I was trying to put her sock on. It was like we switched roles that day and I became the big sister and she was my little sister-it was surreal. The paramedics were asking her questions, like what her name was, if she knew what day it was. She didn’t, she thought it Thanksgiving or close to Thanksgiving and then after a while she started to back track and remember that we didn’t have Thanksgiving yet, but the whole time she had this goofy blank look to her face and she was smiling and just being silly really. The paramedics took her after that and my dad went in the ambulance with her while my mom drove us to the hospital.
I’m gonna take a moment here, and clarify something. I look back at that moment, and it’s crazy to think that what was happening to my sister was a seizure. I had always thought that a seizure was when a person starts convulsing and shakes and you have to hold them down and stick something in their mouth so they don’t bite their tongue off. That’s what I always thought a seizure was up until that point. I had no idea until the doctors told us later, that my sister had a Non-Convulsive seizure. I had no idea that that was even a thing, and that is why this is so important to spread awareness and knowledge about this subject, because I’m pretty sure I’m not the only one who thought this at the time.
Ok, back to the story…
So by the time we got to the hospital, my dad was fuming and was already going to war with the doctors and nurses at the hospital. You see, at the time they took my sister to Trinity hospital, which was not a great place to be unless you were having a baby. That hospital was great if you were giving birth, but with anything else, it was the worst, which doesn’t make sense, I know. But what happened was, once they took my sister to the hospital, they just had her on a bed out in the hall, not even in a room until my dad started yelling to put her in a room to get treated and looked at. When we got in the room, they had the IV bag laying flat on the window sill, which means there was no fluids getting into my sister’s system. By chance, my dad noticed an EMT walking by that he actually knew, and when that guy came into the room he saw the IV bag and got super mad, and grabbed a hanger from the room closet and fixed it so that the IV bag can hang properly to let the fluids flow until he could get someone in there to hook it up correctly. After this, I remember my dad yelling at the front desk people to get his daughter transferred to the Munster Community Hospital, that she was not staying here. He used some very colorful language that I will not repeat here but sure enough I think within an hour they had her out and she was on her way to a better hospital. Since then, I’ve heard that Trinity hospital has gotten better, that they have all new staff, but at the time, it was the worst place to be.
Once we got to the new hospital, they did an MRI and the results came back that my sister had a Juvenile Pilocytic Astrocytome (JPA) Tumor on the left side of her brain. Apparently, it grew to the point where it put a lot of pressure on her brain and that’s what ended up causing her to have the seizure that day. There has never been any major health issues with my sister up to this point. There was never any symptoms that she had that made us think, “hmm, I think something is wrong…” It just happened. Looking back now, my mom remembers my sister that week being unusually sleepy and and kind of out of it, but she just thought that is was stress from her classes at school. We know now that wasn’t the case. One of the signs for JPA is headaches, lethargy or drowsiness, which are not very telling of something as serious as a tumor if you think about it, especially for an 18 year old, and my sister loved to sleep so it didn’t seem out of the normal that she was tired.
This next part, I don’t even know where to begin or how to tell it…let’s just say this is where my dislike for insurance companies started. In 2002, once a child turned 18 they were no longer covered by the parent’s insurance, not like today, where insurance companies now cover dependents until the age of 25 or 26 I believe. And just to give you a background, my dad works for the city of Chicago and has great insurance, but it didn’t matter, they would not cover my sister because she was 18 years old. So here was my sister needing surgery on her brain to remove a tumor and the insurance wouldn’t do anything to help. So my parents were fighting with the insurance companies and her college, because they said her school wasn’t accredited, that they were missing one credit, which they were in the process of getting, but it didn’t matter. So my parents had to get Cobra insurance, pay the premium and $300/month, so she would be covered to have the surgery until her school could get the credit they needed. I know it sucks and it’s very confusing. I don’t understand it all myself, I was kept out of most of it while everything was happening. I had to keep going to school and after school everyday, I went straight to the hospital to be with my sister but I never really knew what was going on, I just tried to be with my sister.
The day of her surgery, I went to school because I had a test to take in Biology, which seems trivial when you think about what was going on that day, but I think I just did it to try and take my mind off the surgery, but it didn’t really work. I left school after the test, my dad’s parents picked me up and took me back to their house until my sister was out of surgery. The doctors said they were able to remove 80% of the tumor but that 20% of it was still attached to her brain and they couldn’t remove it. She was in ICU after that for a couple of days for observation, and they had shaved off some of her hair where they could operate and when they bandage came off, she had a huge horseshoe shaped scar where they operated. I would tease her to make her laugh and say it was good luck. My sister wasn’t in the hospital too much longer after that. I don’t remember much after that either, I don’t remember the holidays or anything. I just know that I watched my sister go through something major and that she would have to deal with this for the rest of her life. We had switched roles forever. She will always be my big sister, but I have definitely taken a very protective roll over her. She will always have to be on seizure medication, and we as a family will always have to watch over her and make sure she’s never too stressed because that can cause a seizure, and we have to make sure she is taking care of herself and going to her appointments and it’s something that my brother-in-law definitely has to monitor and help with. This is something that has impacted my whole family and we had to all come together to be there for my sister.
While writing this I had to ask my mom about telling this story, and what she remembers compared to what I remember, and she offered to write her piece, so here is my mom’s story of what happened that day:
“It's funny how I can't remember what exact day this happened. I can remember that it was right around the Holidays in 2002. It was a lazy Sunday that started like any other Sunday. Kids were home and for some reason Jackie's boyfriend at the time was over. That kid was always over. He liked being around us I guess. I remember yelling up the stairs at Jackie to start her laundry. She came down with the hamper looking very tired. I was making beans in the pressure cooker and told her that I'll meet her downstairs to help with the laundry. A few minutes passed by and I noticed that Jackie hasn't came up the stairs yet. I went downstairs to see what was taking her so long and to put the pot of beans on the stove that I had downstairs. I put the pot on the stove and turned around to look at Jackie to see her wandering around the basement as if she was looking for something she dropped on the floor. I was talking to her, asking her "What are you looking for??” She just had this weird look in her eyes. She was mumbling and just wandering around aimlessly. She was starting to scare me. I didn't know what was happening. I was thinking, "Is this kid high right now?” Then all of a sudden her right side of her body just went limp. Thank God that I was next to her that I caught her, otherwise she would have fell on the concrete floor. I started yelling up for help and for Arthur (her dad). Deanna came down and I told her to call 911 and get her dad. Our life changed in that second. The following days and weeks where challenging to say the least. As a mother it was very humbling to have no control of the situation. All I can do was pray! It was in God's hands now. My faith was truly being tested. He was building us up for the battles to come. Needless to say she had the surgery, it went very well. The recovery was slow but good and things finally went back to a new normal. She's a constant reminder to me of how precious every moment is with your children as your life can truly change in a second. We will never be out of the woods. But my God is greater than the tumor and he has big plans for her. She managed to finish that semester, graduated from college, started her own business , got married and had children. Even though they told her that she might not be able to and God is not finish with her yet!”
I know this is just one story, but there are a ton of people out there that have to deal with seizures a lot more than we do and they have to struggle with that balance of living with seizures everyday. My heart goes out to those families, because I only got a glimpse of it when my sister had her seizure and it was truly scary and life changing, and I can’t even imagine what they must go through. I will forever be thankful that my sister was able to come back from it, she is fierce and brave and I am so proud of her! I am blessed that I get to continue to make memories with her, I love you sister!