When I first decided to start blogging, I had no idea exactly what direction I wanted to go. I knew I wanted to first explain to my family and friends exactly what seizures and epilepsy were. But I also knew I wanted to invite the public in and share that you can still live a “normal” life, whatever normal is these days. In one of my first post I stated that my seizures returning in my adult life were not by accident. I strongly believe God had a plan with this return and He is the one guiding me to where He ultimately wants me to be. Have a seat, take this walk with me and let me explain.
As some may know, I had my first seizure when I was 2 weeks old. Yes I was just an infant, fresh out of the womb. My mom explained to me what happened when I had my first seizure. She had just finished feeding me a bottle. She was holding me in her arms and all of a sudden my body tensed up, the heels of my feet were touching the back of my head. My aunt who is a nurse rushed in the room, hit me in the back and all of the milk came back up. After a few minutes, my muscles relaxed and I was back to normal. I was then taken to the hospital. Mind you, this was 28 years ago. Methods are much different now with first aid. I cannot begin to imagine the feelings my mom felt or any parent who has to watch their child go through that. Or hear a doctor explaining “Ma’am your baby has a neurological disorder.” To this day we still do not know why I have seizures. My mom believes it’s because I had a complicated birth and was deprived of oxygen for a period of time. She had an emergency C-section, I apparently was coming out the wrong way. Yes I have always tried doing everything out of the ordinary from the beginning. I was up in the chest cavity, trying to escape out of my mother’s mouth LOL! We always knew I was destined to be different. Throughout my childhood I continued to have seizures. Convulsing on the bathroom floor while my older cousins were babysitting me, chewing my tongue, even in school having my absent seizures with the staring spells.
I had my last grand mal seizure as a kid. I was seizure free for 20 years. Well I still had the staring spells which I think will never go away. Last year in March 2013, the seizures returned. This time as temporal lobe seizure, TLS. In previous posts I talked about how scary it was for me and still is. I never really talked about my epilepsy with anyone except close family and select handful of friends. I then got back on my spiritual journey and found God again. I knew I could not do this alone. It was other things happening in my life that led me down this path as well.
I have this strong passion for giving back so I started mentoring kids. I was matched with a little girl, and found out her dad also suffered from epilepsy. The program I went through had no clue I even had epilepsy. Coincidence? I think not. Because of my doctor placing me on heavy driving restrictions I had to put the mentoring on hold until we got these monsters under control. I promised myself I would not let these things defeat me.
I then got back in touch with my old college roommate Samantha whose daughter was diagnosed with epilepsy. Now Sam and I were pretty cool back in college. Let’s add the fact I pretty much saved her life 🙂 We laugh about it now but we all know my photographic memory and the fact that I can get your entire life story, DOB, ancestors name and DL number just from having a 5 minute convo with you, haha, is what strengthened that bond. My friends call me paranoid but I call it very cautious in this crazy world! I told Sam that we were roommates for a reason. No neither one of us could have ever imagined that her baby girl would have epilepsy but I was placed in her life for a reason and now we know why. I fight for Hallie as well!
Fast forward, I decided to branch off my photography company Changing Focus and start Changing Focus: Epilepsy Edition. I had no idea on where to start. I prayed on it and asked God to order my steps and if this is His plan for my life just be my guidance. Yea, Be careful what you ask for. I had no idea how that simple prayer was about to change my life.
I then stumbled upon The Epilepsy Network on Facebook. By the way, GO LIKE IT NOW!! I learned so much from it and got so much insight there. I saw that Tiffany Kairos was the founder of the Epilepsy Network. Through one of my many brainstorming sessions I wrote her name down and put it in my bible. On 11/3/2013, I sat on the balcony with my cup of tea and got ready to type up my first blog post. I had just started my twitter account @CFEpilepsy and guess who tweets me?! Tiffany!! I almost had a mini heart attack LOL yes Tiff you were a celeb in my eyes. I remember saying to her “We crossed paths for a reason.” WE did not talk after that. I continued to pray on everything I’m doing in this area and then here comes Mich with her own epilepsy story. We too talked on twitter about American Horror Story and she introduced me to others who have an epilepsy story. Then guess who was one of those people, Tiffany. Look at God!
Tiff, Mich, Saz all have epilepsy and Ang is a mother of a son with epilepsy. These ladies, in such a short time, have made such a huge impact on my life. We talk pretty much every day about any and EVERY thing, I call them my purple ladies. We are all epilepsy advocates and will take this world by storm. They are my inspiration and remind me to never give up this fight. God gave them to me to keep me on this journey. While it’s so great having family and friends who support you, it’s even greater to have people who know exactly what you are going through.
This is why I know my seizures returning were not by accident. God is giving me what and who I need for each phase in my life. My journey is nowhere near over. I am so glad I have such amazing people to share it with. Join us in this fight to let the world know that Epilepsy is real and we will find a cure!