Life with Epilepsy

Happy Thursday everyone! This spring weather we’ve been having is quite the opposite of what we’ve hoped for and expected … but we’re Clevelanders — we can endure (most) unpredictable weather that comes our way!

I haven’t been on lately due to some personal life events over these last couple of months but I am finally able to sit down and write. When I was blogging the last time and going to post this entry, I was wrapping up the weekend and looking at what has been going on in my life and upcoming things on my schedule. I remember feeling dread when I realized my neurologist appointment was coming up. Going to the doctor’s office has never been an issue … but a neurologist appointment is a whole different story.

So since I had been talking so much about how significant epilepsy has been on my life, I might as well share how it all began:

February 9th, 2012 is a day I will never forget — it was the day that I found out that I have epilepsy under the most fearful circumstances. While driving home on the highway from my internship in downtown Cleveland, I start to see the world black out and shake. Next thing you know I wake up in an ambulance heading to the hospital. I was drowsy, confused and scared — being in an ambulance means some really bad has just happened!

After some CAT scans and hanging out at the hospital for a few hours, they come to find out that I have a cyst in my brain … which is pretty much located in a place that is inoperable.

GREAT, right? Also, I would rather them not operate on my brain thank you very much. So I decided that I would just have to live with it.

Most of that first year was spent trying to cope with it’s role on how I make decisions in my every day life and the possible consequences. I had to start taking medicine, which was odd seeing as I was never concerned about serious illnesses prior. I had just turned 21; it felt like my new and exciting social freedoms had been taken away. I was angry and ashamed for who I now was. Although I have been relatively open to share my story, I have been filled with embarrassment (less so than I did earlier on). Questions that I ask myself constantly — “How am I going to make it through a day without feeling embarrassed about epilepsy?” “Will I ever meet someone who will love me and want to be with me no matter what baggage I carry?” “Am I still able to do things I once was able to?”

Some examples of limitations that I now have are — Not being able to join the military. I was planning to enlist and become an officer but I can’t because it is a risk on others if I were to have a seizure. Scuba diving is out of the question because I could die in the water and potential risk to others as well.

I felt hopeless, lost, depression, anxiety and began to self destruct by not taking my meds and make any changes and ignore this new addition to my life.

People try to understand how I deal with every single day, often asking “How did you even survive the accident?!” (which mostly just shows up on their face/s) or “What is it like having epilepsy?” or even “How does it feel to have a seizure?”. I tell them this — I believe it is more than anyone can explain … it’s can only really be understood if you experience it. Epilepsy just becomes a part of you, it is not all of you. That is something I struggle with believing myself to this day but it won’t happen over night.

Since my decision to figure out how I want to live my life, I wonder how much I actually do know about my condition. Looking back on the last 6 years, I realize that I never was as good about taking care of myself as I should’ve been. One take away from this process is that education is power and when understanding and learning more about the things that play a major role in our lives, the better we can live a fulfilling and happy life. And this is something I am trying to figure out for myself — what is the equation to my lifestyle with epilepsy? Meditation? Exercise? Diet? Loving myself more?

By the way — my neurologist is amazing. She has been a great support and helping me move forward with my condition. And over time, I’ve come to realize that there are more people that know or personally are epileptic in the world that are able to openly talk about which certainly has put my mind at ease.

I hope this post has been helpful from a more emotional point of view. If people could read and comment on Facebook or on this post I would greatly appreciate it! Maybe even ask some questions you’d like to learn about epilepsy.

Thank you, enjoy the rest of your week and have a great weekend 🙂

 

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Because I said I would …

Have you ever started out a new year with the intention of spending more time with your family, loosing weight, quit smoking or whatever you may be motivated to work on? Have you ever said you would do it, but then three months go by and you still haven’t started or accomplished that intention?

… so you decide to give up and try again next year …

Trust me, I’ve been there many times.

This year, as I begin exploring the question “how do you want to live your life?”,  has led me to other questions:

“What fulfills my life in order to live it the way I want to?”

and

“How do I hold myself accountable so I will accomplish my intentions?”

The first answer that comes to mind is the volunteer service I participated in with my local community. Volunteer service has been an integral part of my life for a long time, from volunteering with my church in soup kitchens to planning and leading alternative break trips in college. While I have been able to find many ways to express my passion for service, the most important avenue through which I have engaged in volunteer work would be through the non-profit organization, because i said i would.

In late 2012 my friend, Alex Sheen, founded because i said i would — a non-profit that is “dedicated to the betterment of humanity through promises made and kept”. The origin of it’s founding, however, is an unexpected one. On September 4th, 2012, Alex’s father died of small cell lung cancer. Shortly after, Alex was asked by his family to give the eulogy of his father’s life at his memorial service. In his speech, Alex spoke about how although his father was an average, everyday person, he was committed to keeping the promises he made. Alex then passed out what would be called “promise cards ” for the first time and offered to send these cards to anyone, anywhere in the world at no cost.

As a result, because i said i would has grown to make an impact on not only across the United States, but around the world. Since it’s founding, over 8 million cards have been mailed to 153 countries and these numbers continue to grow. Because i said i would has become a vessel for people to understand the importance of making and committing to their promises and share their stories.

Being involved with because i said i would has not only been a rewarding experience to  support a friend of mine, but it has also allowed me to become a part of the organization’s community. Some of the ways I have been involved include traveling with Alex to speaking events across the country and volunteering at the headquarters to put together promise cards that are mailed to thousands of people. Seeing numerous individuals committed to their promises inspired me to start making my own promises; one of my first and more personal promises made was when I decided to improve my health, which meant taking care of my epilepsy. One way I conveyed this desire was to run two half marathons and one full marathon.

Along the way, I found that promises may not go the way you expect them to and possibly transform into something more.  I achieved my promise to run races and improve my health but it grew when I chose to raise money for the Epilepsy Foundation and educating family and friends about epilepsy. What I have also learned is that there is no right or wrong way to any promise … they can be short or maybe they continue on for the rest of your life. Even after committing and keeping my promise, I still struggle with epilepsy every single day.

As I look back on when deciding to make and keep promises and how far I have come, I am reminded that I am the only one who lives my life and I remain accountable for my own promises and life decisions … not anything or anyone else.  I hope to move forward with this as a promise to myself on this well-being blog journey.

What about you? What are your stories of previous promises made but never kept that you would like to commit to and achieve? Maybe you have never made a promise and would like to make one or two?

To learn more, click here: http://www.becauseisaidiwould.com

To watch an about YouTube video, click here

You can also follow them on Instagram (@becauseisaidiwould) and Facebook.

 

Thanks for reading everyone, have a great rest of your week!

How do you want to live your life?

Hi, I’m Claire. I’m a 27 year old girl from Cleveland, Ohio but certainly global citizen works too. I’m a straight up blonde (yes one of those toe heads when a child) with my very own clone (aka identical and very beautiful herself 🙂 ). I’m a light hearted, compassionate person with a stubborn and sensitive side, an epileptic for nearly 6 years resulting to becoming a runner aspiring to live more healthfully and mindfully. I often dream about traveling and believe that serving is one of my strong suits. I’m someone you’ll find singing in the car every single time and more importantly can make a pretty damn good cup of coffee full of TLC.

Being the age I am, I am proud of all the accomplishments I have made so far in my life. But I find that I have come to an interesting point– when pivotal events society expects us to undergo in our lifetime begin to happen. These include relationships turning into engagements, marriage, having babies or fur babies, new home owners and career oriented achievements. Although I am happy to see many friends and family members reach these experiences and flourish, I find myself here … with none of them fulfilled.

So why am I not experiencing them like they are, shouldn’t I be?!

2018 has been a year I did not expect to start the way it has. It decided to slam the brakes on my comfortable and relatively happy life that I thought I knew what direction it was heading. But here comes insecurity, doubt and the realization I have been stressfully eager to “catch up” with everyone else arrive all at once. These thoughts and emotions have now led me to cross roads, major decisions to be made and much change to come in my life. And honestly, change is not a thing that comes easy to me. It’s times like these we must go places inside ourselves that are not necessarily welcomed with open arms. Where difficult questions are and the truth of their answers no matter how hard they may be to accept reside. One question I’ve had to ask myself is even a struggle to say out loud sometimes … you know what that question is?

“How do you want to live your life?”

Uhhhh like, can someone just answer that question for me? Or wave a wand or shake a magic 8-ball and take care of business?

It’s something I’ve allowed myself to ignore for a long time, but what I have slowly come to realize (and with the support I have in my life repeating that question to me often) that it’s not the anticipated life events that I am lacking or need to fulfill to find myself, but it’s the lack of fulfilling love and respect for myself. Anyone or anything can come and go in your life, but you are the only one that you live with until the very end, so you must love your whole self and be true to who you are. No matter how hard, painful or sometimes even lonely the journey may be, that I certainly do not want to look back on my life and regret anything I did or did not do to fulfill my aspirations, dreams and passions. No person’s path is the same on this planet and we all need to stand tall and follow our own with truth and love.

So while exploring and finding MY answer(s) to this question, I figured I should just start writing/blogging. It is a promise made to myself to write as much as I can this year (which is something I will explain in my next post). My goal is for this blog to be a vessel to express myself and promises I make and keep, my thoughts and with hope of people relating and sharing their stories too.

Here’s to day one of my well-being story, it’s time to heal and learn to truly love myself 🙂