A story to never….never lose hope! It will be 19 years. I remember my very first one. At 18 years old, something wakes me up in the middle of the night, my lips begin smacking and my right arm starts twitching. It was my aura that gives me a heads up. The next thing that I remember is waking up feeling like I was hit by a truck. My brother let me know the next morning, he thought I was having a nightmare. A month later, I had another, this one my parents witnessed. They set me up for an EEG to check things out after seeing a cortical dysplasia. Little did I know that little area would have such an impact in epilepsy. At 18, a time before google, I really had no idea what was in store. It was clear by the EEG-I had epilepsy. On the ride home, I read through the pamphlets and papers about seizures, epilepsy, first aid, etc. So what now? They gave me 50 mg of Lamictal to see if that would stop the seizures. Are you kidding me? I’m 18 years old, I am unstoppable. So I did one of the worst things that I could…I skipped medicine….I didn’t need it, or so I thought. My parents wake up one night with me having a seizure. They let me know that they had to resuscitate me after I stopped breathing. It was then I learned I hurt more people not taking it.
I continued to have the tonic clonic seizures on a regular basis, like once a month I would have upwards to 9 grand mal seizures a night. My body would take days to recoup from it. One day at my workplace my seizures began and they couldn’t stop them. The doctors said they stopped counting after 100 in less than 24 hours-status epilepticus. I was put in the hospital for nearly 2 weeks. In the summer of 2003, I married the love of my life, Rebecca. We took this walk against epilepsy together. In 2007, after failed attempts at 8 different seizure medicine combinations (some taking at the same time when one wasn’t working by itself) I was eligible for the Vagus Nerve Stimulator (VNS). I was told there was a 1/3 principle- 33%-seizures would stop; 33%-it would cut them in half; 33%-there was no benefit. A risk that Becky and I talked about but more importantly prayed about. However at one of the check-ups they scheduled an EEG.The EEG showed no epileptic activity. So the doctors decided to let me know that they are un-diagnosing me with epilepsy??!! Instead of adjusting the frequency on the VNS the decided to give me meds. “Oh you had another seizure, we’re increasing your meds by 25mg, 50mg, 100mg”
Before we knew it I was taking 4000 mg of Depakote and gained 60 lbs of water weight in less than 6 months. Then one night after a massive seizure, Becky recorded it, the doctors decided to “rediagnose” me. Oy vei! In 2010, Beck and I got custody of our niece, and moved up to West Virginia to get her away from the situation that she was in. It was there that, we met an amazing neurology team that let us know they are starting from scratch. So they did, fresh records, fresh EEG’s, and starting at increasing the VNS and filling in the gaps with seizure meds. They partnered up with me on journaling techniques and yoga. It helped woo hoo!!
We get transferred to a town in Ohio…Lima, Ohio in 2012. 18 hours away from anyone we might know or even recognize. It was then we welcomed Elizabeth Jean Evans (or LBJ-Lima Bean Jean). The seizures have never stopped and sometimes Becky wasn’t around to help with swiping the magnet or protecting my head. Kayleigh, my 5 year old at the time, would tell others what was normal and what wasn’t. Where to swipe the magnet. To have your 5 year old stay so calm when I had a seizure was amazing. I began to choose to be an advocate for epilepsy. I joined twitter and I then began to see an amazing support system that I had no idea was there. I saw someone who chose not to be conquered, and she inspired my family to be loud for epilepsy awareness: Tiffany Kairos. By the time 2014 came along, we had Caroline Joanne Evans and living life with epilepsy is just life. There were times where I wanted to give up, just to be “I’m done with it” but 3 things encouraged me otherwise:
• My relationship with Christ- Epilepsy is just a testament to how when things get hard, there is a loving God that gives us hope.
• My relationship with my family – Rebecca and the girls teach others what to do. I laugh to think of my 3 year old telling people to swipe daddy’s magnet and turn on his side. But she will. Elizabeth learned from Kayleigh, now 12, on what to do if dad has a seizure
• The resources that I have been given -There are 65 MILLION PEOPLE WORLDWIDE WHO FIGHT WITH YOU. Social media has been a great way to raise awareness as well as partner alongside others who are hurting just as you are. Quiet times, yoga, journaling, and counseling are out there for you.
If I could sum up my story: Never ever give up…always #SEIZEHOPE