Today, April 11th, is my little sister's first birthday in heaven. To honor this, I wanted to share my own Epilepsy journey...
My sister and I learned about Epilepsy around the age of 8 and 6. Casey hadn’t been paying attention during kindergarten and tended to roll her eyes at me over dinner, as younger siblings do! My family had coined these short lapses “zoning out”. Well, it turned out that zoning out was when Casey was having a seizure! A diagnosis of Epilepsy quickly followed. Casey began taking Depakote daily and the zoning out stopped immediately. Besides a yearly EEG, which as older sister I was TOTALLY jealous when Casey got to stay up all night and I had to go to bed, I never thought of Epilepsy as a big deal until my junior year in college.
Casey had decided to become a Hawkeye like I had two years earlier. I was SO excited to have her at the same school as me. It was the first weekend of the school year at the University of Iowa in 2003. That Sunday morning I got a phone call from my sister’s boyfriend begging me to meet him at the hospital as soon as possible. It turns out that Casey had missed a few doses of medication, and that partnered with a lack of sleep and alcohol had triggered a grand mal seizure.
I don’t really remember how I got there so fast, but I do remember walking into her room and seeing a goofy smirk across her face. Casey was so confused and disoriented, but even in that scary moment she was still smiling. A few months later I would find out that Casey had no real memory of that entire day, but we liked to joke about it because she was wearing my sorority sweatshirt after getting cold and somehow it never made its way back into my closet!
After a few more seizures in college, Casey began to identify what her triggers were. By 2009 she had quit drinking, monitored her sleep to assure she got 8 hours, and knew to keep out of the heat for long stretches of time. Her Epilepsy was completely under control. This was also around the time where she began being active with the Epilepsy Foundation of Greater Chicago and our family participated in our first Epilepsy walk.
By 2009, I had wrapped up a Master’s degree and Casey had finished up her Bachelor’s degree. We were both working full time in the Chicago suburbs. In October I bought my first home and welcomed Casey in as my roommate. Living together as successful young adults was so much fun! Not only were we related, but we were also the best of friends.
After living together for a few years, I kept climbing the corporate ladder and with each promotion I saw a new city. I moved to St. Louis, followed by Nashville, and finally landed in Austin. During this time Case was having a few breakthrough seizures, although she was conscious during them. The doctors adjusted her meds, but when that didn’t solve everything they recommended VNS.
Casey had a Vagus Nerve Stimulator implanted in the spring of 2016. She had worked out an entire system by late summer of 2016 with when and where to use her magnet. The VNS was really incredible in the way that it helped with her anxiety. She told me that there were times where she couldn’t tell if it was a panic attack or an aura, but that the second she set off the VNS she felt relief. She even beat me to the top of a steep trail in Yellowstone with her magnet strategically clipped to her shirt, hanging over the VNS!
Casey had some challenges with Epilepsy in 2016, and I wanted to make her Christmas present extra special. When she unwrapped her gift she had to spell out letters and solve the puzzle.
The second she figured out what it spelled, she burst out crying. It had been a dream of hers to attend the National Walk for Epilepsy. I had the entire weekend planned. We were flying out to Washington DC, staying at a cool hotel, seeing the sights, but most of all going to a walk that supported something near and dear to her heart.
The 2017 National Walk was a blast. We met up with Casey’s old nurse, friends from her days volunteering at the Greater Chicago Epilepsy Foundation, and built new friendships with other participants.
2017 also saw my sister finish her Master’s degree and relocate down to Austin to live with me! Within a month of living down here, she had a great job, great friends, and had met the love of her life, Will.
But, 2017 will now be the worst year of my life. You see, I left town for a business trip on Tuesday, August 1st, 2017. I gave my sister a big hug, a kiss on the head, and a few good natured digs on my way out the door. I didn’t know that it would be the very last time I saw her sweet, smiling face.
Casey laid down for a nap that afternoon and never woke up. Even though her Epilepsy was under control, it took her in the end. She passed away from Sudden Unexpected Death in Epilepsy.
Her memorial service was beautiful. Everyone got a purple balloon that they carried as they walked around her favorite lake. At the end of the walk they let the balloon go with a prayer for Casey.
My sister, Casey Elizabeth Cordova, spent a lot of her adult life working with the Epilepsy Foundation to #EndEpilepsy. Did you know that 1 in 26 people will be diagnosed with Epilepsy during their lifetime? Casey did. In fact, this sweet, smart, goofy girl had Epilepsy herself.
Her time was cut short on August 1st, 2017 when she was taken by Sudden Unexpected Death in Epilepsy (SUDEP). Upon her death, we (The Cordova's) decided that the SUDEP Institue would recieve donations from Casey in order to study SUDEP further. SUDEP takes 3,000 to 5,000 adult lives EVERY YEAR. It is vastly understudied and underfunded.
Any donation you make to my page or Casey's Crusaders will be put towards the Epilepsy Foundation to further their research on SUDEP, its causes, and finding a way to stop these senseless deaths. It will also help the SUDEP Institute learn more about SUDEP, why it happens, and the genetic links. I want everyone who has a sibling living with Epilepsy to be able to hug and kiss them each and every day.