“Not every condition is always visible.”
I live with Epilepsy. I have lived with this condition for going on 7 years this December. I was diagnosed with this condition in 2008. Four short months after marrying my husband, days before both of our birthdays, and 2 weeks before Christmas. I had one previous seizure at the age of 16 yet no other seizures than that one single seizure. They had come back full force. I had to make a big change in my life. I had to rediscover a new kind of normal. I had to get comfortable with taking medications every single day at a specific time. I took time off of work to recover, then went back to work but soon discovered that I needed to take more time off of work to recover and readjust to medication and life with epilepsy. Medications in the very beginning most certainly dragged me around and beat me down with the side effects.
Most people might take into assumption that because I look happy and healthy that there’s absolutely nothing wrong. Here’s the thing. For the most part, I am completely happy and healthy except for that one minuscule problem. That bump in the road. Epilepsy. When it’s not causing me seizures, auras, when the medication side effects aren’t awful and frustrating, life is amazing. I love to grab hold of the best aspects of life by the hand and live it because I’m so thankful to be alive right now and I want to do everything in my power to treat my body right. Even when the storms of life are happening, I do my best to keep a positive perspective.
The most challenging moments of living with epilepsy are when I run into moments when I’m doing so well and I hit a bump in the road. It’s in those moments I’ve gotta be my own coach. I’ve gotta be my own lifeguard. You can have all the family and friends in the world which are the greatest ever but the bottom line is you have to stand yourself up when you’ve found yourself fallen down because it’s so easy to beat yourself up and believe your own lies.
I hear so often you shouldn’t Google your own diagnosis, you shouldn’t self diagnose etc. etc. well, as far as I’m concerned, I think it’s okay as long as you’re careful about it. As a matter of fact, I recently read about a man who was named Visiting Professor of 2015 for taking his health into his own hands. Check out “e-Patient Dave” to learn more.
I’m very blessed to have this work area here that we do in which we are able to advocate for epilepsy through my husband and I’s organization The Epilepsy Network (TEN) and the website in which I’m able to blog often about my journey with epilepsy here. I couldn’t imagine not doing these amazing things.
Every single day I must take 10 pills and two vitamins. Gotta keep my body healthy! In regards to alternative treatments, yes I am open however, I do my own research thoroughly and I always have discussions with my neurologist before-hand.
If I had to choose between having an invisible condition or a visible condition, I would choose either or to be quite honest because I am not afraid to speak out, educate and advocate for epilepsy. Epilepsy is slowly growing in greater strength of support and understanding which I am so very thankful for. However there is still much work to be done here and around the world. Stigmas, fears, lack of understanding and lack support. This needs to be remedied yet.
I have chosen to make The Epilepsy Network (TEN) my full time chosen pathway. Educating and advocating is where I want to be. I’m not sure where God will lead this pathway in the future but I am trusting in Him to show me the way.
I find that the most difficult thing about accepting the reality of having epilepsy at times is having to put some really good moments in life on hold as a result of seizures, testing or anything related to epilepsy. However, it just makes me all the more appreciative when I can have a good time and enjoy the life that I have.
You know what I never thought I could do with my condition? Begin an Epilepsy Organization and a blog. I am astounded and so thankful to God for those amazing blessings right there. I count those blessings everyday.
Since being diagnosed with epilepsy, something I really miss doing is taking long drives at evening time. I used to take drives when the sun was just setting. I would park my car and just watch the sunset. I didn’t have that great of a car, but it took me where the sky was most beautiful. It looked like the whole canvas was on fire. I never wanted to leave. All before I ever knew epilepsy was coming for me. It was really hard to give up driving. I gave up driving on my own. Law enforcement didn’t tell me to. Doctors didn’t tell me to. They recommended it but they weren’t going to force me. I just knew that it was the right thing to do. I held onto my drivers license with the hopes that one day epilepsy would just walk away and never come back. I still believe with all my heart one day it will.
I’ve picked up a few new favorite hobbies since becoming diagnosed with epilepsy. I’m making an attempt to learn how to play bass guitar which seems very hard but I love a challenge. Photography is another love that I’ve always held near and dear to my heart. I have plenty more time for that these days which is great. Crafts are way too much fun. You can get lost in Pinterest let me just tell you that right now.
So many times, I’ve thought about this and you know, if I could have one day of normalcy. One day without epilepsy, as if epilepsy had never ever been here at all I’d probably get in the drivers seat with my husband, drive to a great location to watch the sunset and enjoy a glass of champagne. That would be so wonderful.
Epilepsy has taught me so much. Epilepsy has taught me not to take a single moment for granted. To be kind to everyone you meet. To be selfless. To take life with a grain of salt. To draw closer to God. To smile more. To laugh more. To find joy in the little things. To speak positive when you could speak negative. To be good to yourself. I could go on and on. I learn new things all the time. Every day.
It truly does lift my spirits when people tell me ” You are so strong! Keep on fighting! You’ll get through this.” Thank you to those who see me in my journey, who care for the journey that I am on and believe in me as I take this journey. You give me strength.
One of my favorite Bible Passages I refer to along this journey is –
“But those who wait on the Lord shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint.” – Isaiah 40:31
When I meet and/or speak with another who is on the journey with epilepsy too, I’m encouraged to speak with them in that I like to tell them that everything is going to be okay. At first the road may be a little rocky, you may be sad and upset in discovering this diagnosis but it is not the end of the world and you have an entire amazing life to live yet. Place your eyes upon goals you want to set and overcoming the obstacle in front of you. Inspiring others walking the same journey as you. Life is still a beautiful gift.
I was and sometimes am still quite surprised at how some people will judge you when they discover that you have a medical condition. When I was diagnosed with epilepsy in 2008, it didn’t take long for most of my friends to fade out of my life, never to be seen again. Not all of them disappeared but most of them stopped calling. Stopped wanting to be a part of my life. Most of them no longer wanted to get together anymore. I was quite hurt and let down. Throughout the years, whenever word epilepsy was mentioned, a bewildered look appeared upon their faces. Shocked and confused that I could have this condition. Nervous perhaps at what to do or what to say and how to behave around me.
The nicest thing you could ever do for someone living with epilepsy or any medical condition is to let them know that no matter what, you will always be there for them. That their condition will never change the relationship you have with them. I know it certainly made my heart swell with so much joy and happiness when I heard this from my family and closest friends. Those who remained loyal and love me regardless, I am so thankful for them. Each and every day.
To know that you’ve taken the time to read this blog lets me know that you support my journey and I thank each of you for taking the time out to do so. It means so very much!