Epilepsy Association of Utah

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Seize: The Story – Chris Conner

I have never written publicly about my Epilepsy, so this might be a little rough and raw. Epilepsy has made me who I am today. I know anyone that struggles with disease also battles with that disease defining them. You are forced to live a life within the parameters of your affliction, whether that means not being able to drive, relying on medication which takes away from the person you are, or being isolated within social circles. I used to believe that Epilepsy controlled who I was going to become, what I could become. I went through high school knowing that I would more than likely never be able to drive, that I may never have a family (for the fear of passing on my Epilepsy,) and that my career would more than likely be decided by what medications I was taking and how severe my Epilepsy became. All of adolescence was spent with this mind set, I missed out on a lot of great opportunities because I fed into the belief that “I couldn’t” because of my Epilepsy. I stopped dating completely because I didn’t believe anyone could ever fully understand what I was going through and also because I didn’t want anyone to ever have to “deal” with my Epilepsy, I stopped playing soccer after ten years out of fear, fear that I would seize in the middle of a game and my peers would treat me differently. For 6 years I lived this way, until one day I was sitting in the Primary Children’s waiting room (I remember it very specifically) and I looked around me. Every child with Epilepsy there was either confined to a wheel chair, a helmet, or had such severe brain damage they were in a vegetated state barely surviving day to day. At that moment I realized how good I had it, I may never drive, I may never have a family, but I have all the opportunity in the world! All the opportunity to be whatever I want to be! Something so many of these kids would never have the opportunity to experience, choice. They were confined to bodies that void them of so many life choices which we all take for granted on a daily basis. So from that moment forward I never complained about my Epilepsy again, I never resented it, and I used it to fuel a fire which propelled me to fight for those who couldn’t fight for themselves.
I continued living life with medication controlled Epilepsy (Depakote, Topomax, Tegretol, and Lamictal.) And by medication controlled I mean four or five seizures a day instead of the fifteen or twenty I was having when they were at their worst. No matter what, I never lost that sense of purpose and determination, that “I will continue to fight because I can!” I had accepted I would have to live life having uncontrolled seizures, but I was still able to LIVE LIFE. That was what mattered. To this day there are still so many who don’t realize or understand that mentality, that there are those who never get to live, I mean live in a way where you govern your own life. Unless you have experienced affliction in a way that your basic life functions are stripped from you I don’t think you fully can comprehend or appreciate that, I had accepted that was always going to be part of my life. Then out of nowhere (and I mean out of nowhere) they finally found a focal point and surgery became an option. I remember going into the consultation with my mother and Dr. House explaining the risks involved and the possibilities of blood clots forming post op, before he could finish explaining all the possibilities I remember just saying “do it.” My mother started crying and Dr. House asked me to take some time considering everything, I told him that it wasn’t a choice, I couldn’t go through life wondering “what if” I knew I had to try, no matter what the outcome. If there was even the smallest chance that it could get me to the point where I didn’t have to live with the side affects of four medications, it would be worth it. So without going into a crazy amount of detail on the surgery, I went in and they forced my body to have grand mal seizures so they could pin point the location, they finally found exactly where the focal point was located, went in and removed it, and stapled me back up. I continued to seize for a year afterwards due to muscle memory, but eventually they subsided and now I have a seizure in my sleep maybe once every six months. Directly after my surgery the hospital approached me and asked if I would like to speak to candidates considering the surgery. I immediately declined, it wasn’t for a lack of want or desire, and it’s something I believe very few people outside of Epilepsy will ever fully understand. I felt hypocritical, I felt hypocritical because even before the surgery I had been able to live such a “normal” life compared to so many Epileptics. My epilepsy was never visible outside of the times I seized, I saw the way kids with visible side affects of Epilepsy were treated and I never had to experience that, so who was I to speak on behalf of them? But of course life had plans to change my mentality and in a huge way.
I continued to live my life for the past 5 years being grateful for the surgery and the gift I was given, but never fully grasping the opportunity I had been given. Then this past September everything changed. I work at Costco and a year ago was introduced briefly to a co-worker whose son had infantile spasms and was currently dealing with Epilepsy, I told her we should talk sometime if she felt up to it. She thanked me and it was one of those things where life just got in the way and we never addressed it further. In September of this year that little boy left this world, something stirred inside me as soon as I heard, I knew I had to go to his family. As I pulled up to their house two nights after his passing I had no idea what I was going to say, I barely knew this woman, but I knew without a shadow of a doubt this is exactly where I was supposed to be. We walked for over two hours and just talked about her little boy, that conversation will be something I take to my grave but I can tell you I had never felt such a sense of purpose as I did that night. I knew I had been guided to this woman, I knew I had been given Epilepsy for this purpose to help another individual heal. In that moment it all became so crystal clear, this was why I was given the gift of that surgery, because I could relate to the pain of Epilepsy and I could support her in her fight to continue life. They had an open speaker spot for his funeral and I asked if I could please speak, I had never met this boy but he felt like my own brother and I had an overwhelming feeling that I had an opportunity to share a message that might get through to this family in a way that would give them hope and a reason to believe their little boy lived a life of purpose. I didn’t write anything down, I walked up to that pulpit and just spoke from my heart, I couldn’t tell you what I said, but I can tell you that my words were guided by a purpose and meaning much greater than myself. Since that day that little boy has been my inspiration, he led me to this amazing family that showed me I can make a difference, I can give back, I can use the life I have been given to support others and show them that they can live, that life is beautiful and no affliction ever has to take that away from you. I now have the opportunity through the EAU to pursue my dream of showing those living with Epilepsy that there is support out there. This year I was lucky enough to be part of a cookie fundraiser put on by “Aud Cakes, Costco, and the Park Cafe.) Because of that fundraiser I was able to help give a family hope, to show a family that they aren’t alone in their time of suffering and to support the EAU who is doing that for countless of families and individuals on a daily basis.
I don’t know where I will be five or ten years from now, but I have purpose like never before. I have a focus in life and I am ready to see where it takes me next, I have been given a second chance at a life that I can make into anything I want, and I can’t think of any better use for it than lifting up others and giving that same hope and inspiration that was given to me with my surgery. I still have so much to learn and I am still so far from who I believe I can be as a person, but I have the inspiration now because of a little boy I never even met. There is no doubt in my mind that I was given Epilepsy for a purpose, and if I could go back I would do it one hundred times over. I am epileptic and I am damn proud of it! I let Epilepsy make me not break me, it was  a conscious choice and it has filled me with more purpose for this life than I could have ever imagined. I wouldn’t be in this position without the love of my family, friends, and that little boy Wyatt Anderson. They have all shaped my life and gotten me where I am now. This is just the beginning and I can’t wait to see what’s next! In closing there is a quote I would always think of when my Epilepsy was at it’s worst and it would fuel me to continue to push forward- “In life there are going to be some things that make it hard to smile. Through all the rain and pain you got to keep your sense of humor and smile for me now. Remember that.” –  Tupac Shakur

I discovered how to live life, I discovered the ability to live a full life regardless of your physical or mental situation. My life will never be free of struggle or trial, but I am in complete control of how I respond to those situations. With that knowledge I can enjoy my life no matter what the situation might be. So the greatest barrier I have overcome is the ability to enjoy life to the fullest.

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