If you asked me 5 years ago I would have said that soccer is my life and I imagine my college life being centered around soccer. At the time I was recruited to play soccer for Towson University, I was SO pumped and I thought everything was lined up perfectly. The day before signing day I was told I could not play soccer again due to my seizures. At this point in time I was devastated. I thought there was nothing worse in the world then to take soccer away from my life. Now, a semester away from graduating, I can say that I was crazy. Yeah, of course it would have be awesome to see what my soccer college life would have held for me, but I believe everything happens for a reason, and I definitely would not have been in my special education program at Arcadia University, if it weren't for my Epilepsy. Throughout this ride I learned that above all else, special education and working with children with disabilities is my dire love and passion in my life.
As I approach the ending, as well as the beginning, of a new chapter in my life I feel as though I can finally look back at my Epilepsy and really capture it and call it my own. After all it is my story. It's very much a part of me. The relationships I have made and deepened, the passions I have found, the experiences and journeys that I endured, all stemmed from my own path, a path that was unwillingly changed, I don't want to say for the better, but certainly for a thrilling ride that I love to call my own ride. I am now graduating with a duel certification in Early Childhood Elementary Education and Special Education, both of which allow me to go after my deep passion of working with children with disabilities and that I would not change for the world.
Last night I was reading a book called The Spark by Kristine Barnett. It is a true story about a woman who explains her sons story through her eyes. Her son has Autism and the story is absolutely beautiful. Reading last night motivated me to write about my story. After all every one has a story and everyone enjoys and lives through their own beautiful, sometimes crazy and unexpected, but nonetheless beautiful ride.
Monday, January 6, 2014
Sunday, December 29, 2013
In Need of Public Opinion
As the national youth council meeting approaches, I find myself thinking about restructuring/reprioritizing YC projects based on goals. Re-evaluating our mission to have the greatest national (and international) impact is essential in the upcoming year. A communication network between youth councils seems key. I also want to make sure money being spent is being put to its best use. Once again public opinion is considered in depth! So for those of you reading this post, I want to hear your thoughts and ideas! Please comment if anything comes to mind… such as a fundraising idea you’ve toyed with or lack of youth support in your community.
On a festive note, there is nothing quite like the excitement of heading home for the holidays. Struggling through finals week, as horrible as it seemed, reminds me of those youth that never really got the chance to excel academically due to their epilepsy. Of course the number of people in this group is small compared to all people that have epilepsy. Nonetheless, it made me realize that Youth Council is about more than just socially supporting youth with epilepsy… it is about defeating the condition as a whole. And we won’t stop fighting until there is a solution for every issue caused by epilepsy.
On a festive note, there is nothing quite like the excitement of heading home for the holidays. Struggling through finals week, as horrible as it seemed, reminds me of those youth that never really got the chance to excel academically due to their epilepsy. Of course the number of people in this group is small compared to all people that have epilepsy. Nonetheless, it made me realize that Youth Council is about more than just socially supporting youth with epilepsy… it is about defeating the condition as a whole. And we won’t stop fighting until there is a solution for every issue caused by epilepsy.
Thursday, December 26, 2013
Holiday Greetings
Belated Christmas greetings! From everyone in the National Youth Council, we hope you have a beautiful holiday season, and we look forward to trying out some new projects on this blog and through twitter! Eat up those cookies and be merry!
Tis the Season - Belated Holiday Greetings
Tis the season for love and family! Cookies are baked, ugly sweater is made, shopping is done, and presents are unwrapped... :) Life is wonderful! I have been blessed with a beautiful year and am thrilled to be spending the holiday, and ringing in the new year, with great friends and family. Happy Holidays!!
Love.
Sam D
Hi everyone! A few weeks ago I celebrated Chanukah, or "Thanksgivukkah" as it was known to many. It was a great holiday, full of love, Chanukah cookies, and pumpkin pie. I may not celebrate Christmas, but I still love this time of year. It's a time to be joyous and to forget the troubles in your life. For me, it's another time that I am particularly grateful for my family and friends who have supported me through everything. Whether or not you celebrate Christmas, celebrate this time of year. Happy Holidays and Happy New Year!
Love,
Sam G
Love.
Sam D
Hi everyone! A few weeks ago I celebrated Chanukah, or "Thanksgivukkah" as it was known to many. It was a great holiday, full of love, Chanukah cookies, and pumpkin pie. I may not celebrate Christmas, but I still love this time of year. It's a time to be joyous and to forget the troubles in your life. For me, it's another time that I am particularly grateful for my family and friends who have supported me through everything. Whether or not you celebrate Christmas, celebrate this time of year. Happy Holidays and Happy New Year!
Love,
Sam G
Wednesday, December 18, 2013
Realizing the Role of Fear
The following post may seem a bit, well, morbid. That’s because I believe firmly in the power of truth. When I talk about epilepsy I do not sugarcoat the hard parts, nor do I exaggerate or over-dramatize the easy parts. I like to tell it how it is. Most of the time, I talk about how much I love having epilepsy. It has been a significantly positive factor in my life, teaching me new things about myself and making me grateful for all the blessings in my life. While I would certainly never wish epilepsy on anyone else, I would not trade it if I could. But that doesn’t mean that I never struggle with it.
I once heard a story about a child who was diagnosed with epilepsy, asking his father, “Will I die from this?” Although rarely voiced, I cannot pretend that it has never crossed my mind. Will I die from this?
I truly do not believe that I will. Most people do not die from seizures, and my seizures are very well-controlled anyway. The thought is often on the back of my mind, but it’s rarely something I seriously consider. However, every once in a while, epilepsy brings me face-to-face with my own mortality.
Being a frequent follower of epilepsy news, I do read an unfortunate amount of stories of people who have passed away from seizures. Every story is heartbreaking, but I seem to have become somewhat immune. Recently though, one story made me break down in tears. It was about Alyssa Josephine O’Neill (or AJO), a young woman who gained national attention after she passed away from a seizure and her family began performing random acts of kindness in her honor. I read the stories about her which were always accompanied by pictures. I look at these pictures, and I see a young girl with brown hair and brown eyes, wearing formal dresses in one picture while making funny faces from a hospital bed in another. I look at these pictures and I see me.
It’s not that we could have passed for twins; we may have the same hair and eyes yet our features are very different. But I can see myself in her. I can see the girl that’s not afraid to post pictures of herself at the hospital and chooses to joke about it instead. I can see the girl that loves getting all made up and putting on a sparkly dress. I think that’s why her story hit me so hard, despite the fact that I’ve read dozens of these stories.
I shared the story of people acting in her honor because I thought it was beautiful. I bought my pumpkin spice latte for a stranger at Starbucks and had the barista write #AJO on the cup, just like hundreds of others across the country. What I didn’t do was tell anyone that underneath my admiration for this young woman, and her friends and family who kept her soul alive, I was scared for this first time in years. Scared that one day, maybe even tomorrow, that could be me. Now, a few months later, I feel comfortable sharing that fear.
I can share my fear because over the past few months, I have learned two things about fear. The first is that it is relatively useless. I take my medicine, I try to get enough sleep…the rest is out of my hands. It is pointless to spend my time worrying about such a small possibility, when I could be out enjoying my life. In honor of those like Alyssa, the thousands of people who have lost their lives because of epilepsy, I should be living life to its fullest and making the most out of every moment.
The second thing I learned about fear? Sometimes it’s okay to have it. I never wanted to admit that I was scared, but I know now that there is a difference between having fear and being consumed by fear. When you let it take over, that’s when you stop living your life. But having some fear is nothing to be ashamed of, and it doesn’t make you weak. A little bit of fear is normal and is part of what makes us human. It’s okay to be afraid, as long as you stay away from its grasp.
I once heard a story about a child who was diagnosed with epilepsy, asking his father, “Will I die from this?” Although rarely voiced, I cannot pretend that it has never crossed my mind. Will I die from this?
I truly do not believe that I will. Most people do not die from seizures, and my seizures are very well-controlled anyway. The thought is often on the back of my mind, but it’s rarely something I seriously consider. However, every once in a while, epilepsy brings me face-to-face with my own mortality.
Being a frequent follower of epilepsy news, I do read an unfortunate amount of stories of people who have passed away from seizures. Every story is heartbreaking, but I seem to have become somewhat immune. Recently though, one story made me break down in tears. It was about Alyssa Josephine O’Neill (or AJO), a young woman who gained national attention after she passed away from a seizure and her family began performing random acts of kindness in her honor. I read the stories about her which were always accompanied by pictures. I look at these pictures, and I see a young girl with brown hair and brown eyes, wearing formal dresses in one picture while making funny faces from a hospital bed in another. I look at these pictures and I see me.
It’s not that we could have passed for twins; we may have the same hair and eyes yet our features are very different. But I can see myself in her. I can see the girl that’s not afraid to post pictures of herself at the hospital and chooses to joke about it instead. I can see the girl that loves getting all made up and putting on a sparkly dress. I think that’s why her story hit me so hard, despite the fact that I’ve read dozens of these stories.
I shared the story of people acting in her honor because I thought it was beautiful. I bought my pumpkin spice latte for a stranger at Starbucks and had the barista write #AJO on the cup, just like hundreds of others across the country. What I didn’t do was tell anyone that underneath my admiration for this young woman, and her friends and family who kept her soul alive, I was scared for this first time in years. Scared that one day, maybe even tomorrow, that could be me. Now, a few months later, I feel comfortable sharing that fear.
I can share my fear because over the past few months, I have learned two things about fear. The first is that it is relatively useless. I take my medicine, I try to get enough sleep…the rest is out of my hands. It is pointless to spend my time worrying about such a small possibility, when I could be out enjoying my life. In honor of those like Alyssa, the thousands of people who have lost their lives because of epilepsy, I should be living life to its fullest and making the most out of every moment.
The second thing I learned about fear? Sometimes it’s okay to have it. I never wanted to admit that I was scared, but I know now that there is a difference between having fear and being consumed by fear. When you let it take over, that’s when you stop living your life. But having some fear is nothing to be ashamed of, and it doesn’t make you weak. A little bit of fear is normal and is part of what makes us human. It’s okay to be afraid, as long as you stay away from its grasp.
Wednesday, December 11, 2013
Give Us Some Feedback!
Epilepsy Awareness Month has officially come to a close. Nonetheless, we continue to raise awareness and take strides toward providing support to youth and their parents struggling with some aspect of their condition. The next big thing for National Youth Council is our annual meeting in January. During this meeting we will be discussing tons of new projects and goals for 2014. I personally may not be able to make it to the meeting due to my medical school studies, but I will at least be able to be on a conference call to contribute. This upcoming meeting will truly set the stage for what National Youth Council accomplishes this year. I am excited to work with my friends and colleagues on developing a plan to connect local youth councils from across the nation into a common, supportive network. This is definitely one of our primary goals. Also, we're looking at new members, leaders, projects and feedback systems. Speaking of which, we'd love to hear your feedback and ideas. If there is any particular issue that YOU feel needs addressed in regard to youth with epilepsy then please feel free to let us know as we are looking for more ideas. For any problem/idea you've been contemplating let us know by tweeting @EpilepsyYC or messaging our Facebook at "Youth in Epilepsy". We'll put on our thinking caps and certainly do our best to cover the most prominent issues mentioned. Until then, enjoy your holidays!
Wednesday, December 4, 2013
Timeout from Finals
The weeks for finals and exams have arrived. Of course, it is a dreaded time of year, and it certainly played a role in the reasoning for why this post was delayed. I have been reading every textbook in site, and the projects seem to appear out of nowhere. As soon as I finish anything, ten more obligations appear, and the stress increases.
I realized about about two seconds into writing this post this week, that writing this post was exactly what I needed to be doing all along. Yes, I committed to writing a post this week for the group, but I truly needed to write this post just to recenter my mind and unwind a bit from the havoc of the week.
All around me are things that I am truly grateful for, and I have been missing out on many of them, since my focus has been down in the books. In no way am I saying that studying is not a worthy cause, but we all need a few small breaks here and there. Study for an hour and then go take a half an hour to do some yoga, talk to friends, catch up with someone, or just breathe. I am wrapping up a ten hour day, so I am going for a quick run the minute I walk in the door.
Take time these next couple of crazy weeks and breathe. It is the holiday season, a time for family, friends, and wonderful memories. Try not to let the exams, projects, and finals keep you down.
Tweets @EpilepsyYC and let us know how you are keeping the stress at bay!
Best wishes!
Maureen
I realized about about two seconds into writing this post this week, that writing this post was exactly what I needed to be doing all along. Yes, I committed to writing a post this week for the group, but I truly needed to write this post just to recenter my mind and unwind a bit from the havoc of the week.
All around me are things that I am truly grateful for, and I have been missing out on many of them, since my focus has been down in the books. In no way am I saying that studying is not a worthy cause, but we all need a few small breaks here and there. Study for an hour and then go take a half an hour to do some yoga, talk to friends, catch up with someone, or just breathe. I am wrapping up a ten hour day, so I am going for a quick run the minute I walk in the door.
Take time these next couple of crazy weeks and breathe. It is the holiday season, a time for family, friends, and wonderful memories. Try not to let the exams, projects, and finals keep you down.
Tweets @EpilepsyYC and let us know how you are keeping the stress at bay!
Best wishes!
Maureen
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