You Don’t Look Like You Have Epilepsy
I live with Epilepsy. I have lived with this condition for over a decade. I was diagnosed with this condition in 2008. Four short months after marrying my husband. 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 assume 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, or 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. Well, as far as I’m concerned, I think it’s okay as long as you’re researching from a reputable site and discuss with your physician about the information that you’ve gathered. 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 this blog in which I’m given the ability to speak about my journey with epilepsy here. I couldn’t imagine not doing these amazing things.
Every single day I must take 12 pills to combat my seizures. 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.
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, support and funding. This has yet to be fully remedied.
I have chosen to make The Epilepsy Network (TEN) my full time chosen path. Educating and advocating is where I want to be. I’m not sure where God will lead this path 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. 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. Fitness is a love that I’ve navigated to which increases my self-confidence and releases any toxic emotions that may try to creep in. Crafts are way too much fun. You can get lost in Pinterest for ideas let me just tell you that right now and baking is something that I’ve come to really enjoy. I mean, who doesn’t like a batch of warm chocolate chip cookies, am I right?
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. 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 road and you have an entire amazing life yet to live. Place your eyes upon goals you want to achieve and overcoming the obstacle in front of you. Inspire 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 the 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 loved me regardless, I am so thankful for them. Each and every day.
To know that you’ve taken the time to read this article lets me know that you support my journey and I thank each of you for taking the time to do so.
The beginning of your story reminds me of mine. I had one seizure at age 17 and then none until five years later, at which point I had three within the first few months after getting married. What an introduction my husband had into married life with me!
Madam. But sometimes life seems really really hard with epilepsy. Because epilepsy don’t came alone. There are number of things that are attached with it. Just like alzimer Memory disorder, neurons out of control of nervous system in which basic neuron dopamine gives addictive behavior and second neuron serotonin gives big big big anger on small things third neuron norepinephrine gives big fear from everything of the world. Schizophrenia also comes. Bipolar disorder can cause suicide. Also in many areas of the world social societies don’t accept them so it makes things worst and worse. At the end loneliness comes and epileptic person have no power to overcome it. Oh i forget the side effects of epileptic medicines. Mostly peripheral Nervous system and enteric Nervous system also becomes weak. Now there’s comes an mayoclonic seizure during writing this article so i am going to ……………………
Just the title of this article itself means so much to me. When people learn that I have epilepsy, they ALWAYS say I “don’t look” like I have it! It’s as if we are happy, healthy and fun people who don’t seem like anything could be wrong with us. But it’s those moments (like the other morning) when we are pouring a cup of hot coffee and go into a seizure out of the blue! It may only last a few minutes or less… But they are scary and they drain us! However, it’s wonderful that people like you take the bull by it’s horns and fight to get rid of the stigma and educate the world! You never let epilepsy hold you down, and you’re always so positive. That’s how we all need to remember to be!
Thank you for being brave you are an inspiration. My son was diagnosed with Epelepsie about 2 years ago never saw it coming we never saw the symptoms. We are or him are getting stronger as we journey on ahead. I am so proud of him for getting back up when the episodes occur. We are not victims we are victorious although it hurt we are press forward and toward the life in Christ Jesus our Lord.
I really appreciate every word that you share with us and gives me hope to live a happier life!