About time I write a blog about the daily questions and concerns I get regarding my Epilepsy and in return, my own questions and concerns. I clearly don't have an English major or a masters in grammar so bare with me while I jump from topic to topic, some being in order and others coming as my thoughts are flooding....
Lets start with the dumbest thing I get, honest to gosh, on a WEEKLY basis..... "Oh you're epileptic? You don't seem (or look) like you would be." What in the earth does that mean? Come on people. There is nothing in anyone's appearance that would flat out tell you if they are epileptic or not. I don't walk around twitching or shaking and foaming from the mouth. I don't naturally fall and become limp without having a true seizure. Quit saying that. You sound ridiculous.
The next most common question I get is.... "Is this why you workout so much, because you're epileptic?" I truthfully don't know the true answer to this. I've always been an extremely active person and have loved working out but I know when my health went downwards on me in high school that working out quickly became second nature to me. I'm not sure if it's the escape I can get from my daily worries/frustrations with having Epilepsy, or if it's the feeling that I can somehow 'beat 'it if I'm in the best shape possible. Both are silly reasons, but both are thoughts I have every single day.
Going further into both thoughts... I do have daily worries/frustrations. Some days I wake up ready to seize the day (see what I did there). Other days I wake up with some worries about what the day will bring. I know that if I have a seizure that I should be okay, but I hate the unknown of where it could take place, who will see me, what will people think, and the ridiculous thought of if I'll come out of it. People always tell me they don't care and that they won't look at or consider me differently, BUT, I don't believe that to be true. Every single person that has encountered one of my seizures looks at me differently. Don't argue with me about that because it is undoubtedly true. Whether it's because you care, worry, are afraid, feel sorrow, pity, etc... I can see that. I can't blame anyone for having those emotions, but please, the next time you have or decide to speak to me about my seizures, do your best to hide those emotions. I don't want your pity. I don't want your sorrow. I don't want any of that. Instead, please show your understanding. Your understanding that I live one hell of a life and not one single seizure will take that away from me.
Now to my other thought.... can you really 'beat' Epilepsy? No. It's a chronic disorder. During my last MRI, my previous doctors (finally) noticed and found what they thought was an abnormality, or birth mark, that I was born with that was located in my right frontal lobe. This mark was determined to be related to seizures and therefor be the reason I was having them. After frustrations with not being able to control my seizures, we (my family and I) sought out another source.. The Minnesota Epilepsy Group which is a level 4 (best there is) group of doctors that specialize in Epilepsy. This past July, at my very first appointment, my new doctor lead us in a direction that finally made sense with my history. What was thought to be an abnormality/birthmark was said to be a scar, which would relate to my three head injuries I had the year prior to my seizures starting. Although this scar cannot be 'beaten', it is our hope that this one can be treated.
I've always wondered how it could be a coincidence that a year later, after my third head injury, that my seizures started. I was told time and time again that it was simply that, a coincidence. But if I've learned anything from going through this search for answers, never stop asking questions. Pry into the whys. Don't take the simple answers or the easy way out. I applaud doctors for what they do, know, and experience on a daily basis. However, I've encountered far too many who have simply tried to take the easy way around fully understanding my specific case. You and your doctor are a team. You've gotta work together, and if it gets to the point where you feel more can be done than already is, seek another opinion. Seek another source. Don't be afraid to get multiple opinions until things start to make sense or get better.
Now to the next four topics that frankly, just suck. These are major things I am asked about regularly and have to manage on a a daily basis. This all may get a little long but I promise you I'm being as authentic and raw that I can be. I think I owe that to everyone who falls under these topics.
Coaching with Epilepsy.... Man, this is tough. But then again, these next four topics are. Coaching with Epilepsy is a challenge. The biggest challenge for me is talking about it with my athletes. I don't know if I can truly pinpoint one thing regarding my Epilepsy that gets me the most, but if I could, this may be it. I don't know how to explain my Epilepsy without putting fear of frustrations in the hands of my athletes. Who wants a coach who may have a seizure any given day of a practice or game? Do they feel safe? Are they scared? Can they trust me to do what I need to accomplish as a coach if I'm still working on getting my seizures fully under control? I don't know. I don't know if I want to know their answers. I hope they feel safe. I hope they don't feel scared or sorry. I hope they can trust me. But, I can't blame them if they don't feel the things I hope.
Within the past year I've had two seizures at the school and I can't quite express the true frustrations I have felt. I cannot stand the thought that my athletes could, and now some have, see(n) me that way. I hope one day I find the confidence where I don't have to doubt myself or my ability while coaching with Epilepsy, but for now I I will continue to work towards it.
Working with Epilepsy.... This is very similar to coaching. Again, it sucks. Clients look at me the way my athletes do. Now most of my clients are older than me, ranging from 30s and 40s all the way to a few up near 60s and 70s. The only more noticeable difference I see is that my clients tell me they are sorry for me almost every time I have to explain to them my health. "I can't imagine going through what you have at your age." "You're too young." Common.... all too common. I know this comes from the good of their hearts but it also kills me inside. I don't want to feel those thoughts, because frankly, sometimes those same thoughts cross my mind. I don't want this either. But I know sitting back and feeling those thoughts won't do a damn thing for my happiness or my health. This was God's plan intended for ME. I was designed and built to handle this. I can do this. I'm young enough to have the physical ability to bounce back from each and every seizure I have. It may take me a day or so, but I'll do it. I want everyone I work with to realize that. This was meant for me. We all have our trials, this happens to be mine.
Family and Epilepsy... I've got Epilepsy. What that means is, my family has Epilepsy. I don't go through this alone. Every step of this path my family has felt each and every emotion with me....the fear, the anger, and even the joy of new answers/information. They feel it all. I am never alone. Sometimes I struggle to remember that what I am going through, my family is with me. I tend to lash out and take out my frustrations at my family only quickly to realize, they feel every ounce of my pain. My parents and my sister are incredible. They see the rawest form of my emotions. My dad has been my foundation, being as strong as he can to hold us together. My mom has been my angel on earth. Almost every doctors appointment and overnighter we've had, she's been by my side... staying up with me until 2am and waking up with me at 6am while embracing every frustration I throw her way. She's seen and done it all. My sister has truly been a shoulder to cry on and my person to go to when I need to talk about the things I don't want to admit to my parents. She's been my person. And last but not least, to my granny. To my granny who is now watching over me from Heaven... You have always been my rock and my angel. Although life today is not the same as it was with you here, I feel your constant presence. I know this sounds crazy, but I feel your presence through my sweet boy Leonard. I may even be insane but I talk to him daily as if I was talking to you, and though he doesn't have a voice, I feel your response. Every ounce of love and faith you instilled in my while you were here, I carry around with me. To my immediate family and all the way to my extended family, thank you. We've taken this head on from the beginning, and I know I couldn't do it without you all.
Friends and Epilepsy.... This could be long. My friends are great. I'm not as close to the friends I was with in high school, likely to do with the school path I took vs the path most of my friends took. My high school friends were/are truly great. They've been like family - in this with me since the beginning. Though I never realized this at the time, this impacted their lives more than I could ever imagine. On sometimes a weekly basis, they were running around in fear and frustrations either trying to get a teacher or to make the call to my parents to tell them I had another seizure. They experienced the beginning where, quite frankly, no one knew whether I would make it through. They visited me at the hospital. They frequently checked up on me and my health. They listened to me vent. They were also my shoulder to not only lean on but most importantly, cry on. To those friends, you know who you are, I will never be able to repay you but I hope you know how grateful I was and how grateful I will forever be for you. As for the friends I have now that didn't know me in high school, they are all equally as great. They've gotten to know my struggle and somewhat experience it with me, but they've also given me new light. Most can separate me from seizures. What I mean by that is, most people who knew me from the start knew I was the "girl who passed out." I can't really complain about that because hey, the shoe fits. I'm the girl who passed out. However, I don't necessarily like being stripped of who I am completely. I'm not only the girl who passes out. I'm the girl who occasionally passes out, but seizes (see what I did again) every single day and opportunity I have. I think this is easier for those friends that didn't know me in high school to see. But to sum up all of my friends in one, likewise to my family, I couldn't do this without you. Thank you.
Before we part ways, or before I finally stop rambling I'd like to leave you with a couple (more) things... If you have questions or concerns, feel free to ask me. I'll let you know if I don't want to talk about it. If you want information without having to go through me I highly recommend www.epilepsy.com as it is one of the best tools I have with learning about my own Epilepsy, along with understanding how others are affected by this as well. Epilepsy is confusing and somewhat consuming, but it has been the biggest blessing in disguise for me. Regardless of the frustrations and emotions that I have felt throughout this journey, my life wouldn't be anywhere near as faith-filled and beautiful as it is now.
So like always, thank You to the Man up too for giving me this life. I owe it all to You