How many of you have thought about sharing your personal journey, but you weren’t sure where to start? There are a growing number of virtual communities giving voice to so many living with chronic illness or disabilities.
I have been so honored to share my story via multiple outlets, in hopes of spreading epilepsy awareness, while educating & inspiring others. I want to talk about an organization that is doing just that – sharing stories of achievement, success and overcoming challenges, despite living with a chronic illness or disability. YOOCAN
“Yoocan is the the world’s #1 empowerment site for people with disabilities and their families to share their personal story in a safe community, search for activities and organizations, meet new friends and get feedback from people who truly care. Yoocan is a free community with access to more than 1 million people from over 100 countries around the world, and growing every day.
In July 2008, my nephew Erez was born with a rare disease and complex cognitive and physical disabilities. This was the beginning of an emotionally challenging journey for our family. It brought us together in many ways, but it was hard as we needed to adjust to a new way of living. Like Erez, there are over 1 billion people in the world living with some kind of cognitive or physical disability, striving to live a better, inclusive life, and fulfill their dreams.
We created yoocan to be the leading empowerment source in the world for ideas, tips and solutions to make your life better and more inclusive. “
YOOCAN reached out to ask if I’d be interested in sharing my story via their platform. (DUH! I LOVE SHARING MY STORY!) I jumped at the opportunity to reached a wider audience in hopes of inspiring others.
Once I signed up (It’s totally FREE!), I became typing my story and uploading photos. It was such an easy process to sign up and create my story via YOOCAN. Not only was it easy, but it also allowed me to view so many stories of triumph, bravery and determination. I was so inspired by the stories I read, from every day people like you and I, that I wanted to share the organization with you.
I encourage you all to visit YOOCANFIND.COM to read stories submitted by others and to post your own story of living with epilepsy! (Side note: I really NEED to purchase one of their cool t-shirts!)
And, last but certainly not least, I want to share my YOOCAN story with you! *If you’ve read my story on Able Finder, this is a bit different. I don’t like to copy+paste my story, so I rewrite it each time I share.*
“MY FIRST DOCUMENTED SEIZURE
Shoveling gummy worms into my mouth like I hadn’t eaten in days, I happily rode in the back seat, traveling to the beach for the day with my dad and stepmom. Looking forward to spending time with my dad and enjoying the seabreeze, we strolled down the oceanfront together, feet in the sand and wind in our hair. Then, suddenly & without warning, everything went black. I called out to my dad,”Dad, I can’t see anything. Everything is black. I can’t see you! What’s happening?!” My dad, a paramedic at the time, went through all the typical medical questions, and walked me over to the beach shower to cool me down – thinking I had overheated. I don’t remember too much about the tests that followed that day, but I do remember the diagnosis – “Hypoglycemia.” I was told to keep a piece of candy in my pocket, and if I felt like my sugar was dropping I should eat the candy. Ok, easy enough…
BEFORE A PROPER DIAGNOSIS
The following years, proved to be more than hypoglycemia. I found myself navigating symptoms of something I did not yet know about… blacking out, dizzy spells, convulsions, disorientation. Only a handful of episodes happened, but never enough to catch the culprit. I remember waking up in the middle of the night to get something to drink, only to awaken to my grandmother standing over me asking if I was OK. Another time, I gave blood my senior year of high school and promptly blacked out – which was again chalked up to hypoglycemia. Finally, my freshman year of college, my dorm roommate found me unconcious and lying on the floor, after my morning shower. Still thinking this was all hypoglycemia, I kept on going with life and thought nothing more of it.
A HUSBAND’S WORRY TURNS TO ANSWERS
Then, it happened. I was 25 years old, a senior in college, and it was finals week. Since I was studying Fashion Design & Marketing, my final consisted of designing and constructing my own collection. Needless to say, I was beyond stressed! I remember getting up from the table one evening after finishing my dinner, and taking a step to put my plate into the sink. The next thing I remember is my husband staring down at me with fear in his eyes while exclaiming,”Oh my god! I thought you were dead. Your eyes rolled back in your head. What happened? What was that?!” I was confused, at a loss for words, and my head was throbbing. I had blacked out, falling face first onto the hardwood floor and was concussed. My husband immediately took me to bed and kept a close eye on me until we were able to see a neurologist. (We were unaware of the concussion at this time.)
FINALLY, A DIAGNOSIS
After seeing a neurologist, I was told I had a concussion. He told me that the concussion symptoms should subside soon, but to make sure I get some rest & take it easy. (Take it easy, during finals week?! Who was this guy kidding?) Immediately after explaining the concussion, he told me that I should make an appointment for an EEG to check my brain activity. Why not, right? I wanted to make sure I was OK after such a nasty spill. So, I scheduled the EEG for the following week. Anxious, confused, sleep deprived and worried, I showed up for my EEG. Wires, glue, a cold table and a nurse that lacked any sort of personality surrounded me, but I knew I had to do this. I fell asleep and let the monitor do it’s job. Once my EEG was complete, I couldn’t help but anxiously await the results. My neurologist called and asked my husband and I to come into his office. I was worried the news was bad, since he wanted to discuss my EEG in person. We waited for what seemed like forever, and finally the doctor came into the room. “You have Juvenile Myoclonic Epilepsy with generalized seizures.” I shrugged and said,”OK.” Thinking I would get more answers, but the only answers I received were in the form of a prescription pad.
NEVER GIVE UP
After being diagnosed, I was offered a job in California, using my newly obtained degree. I had not yet realized what my diagnosis meant for me and my life, but I did know that I wasn’t going to let a little thing like epilepsy stand in the way of everything I had been working so hard towards. I accepted the job and moved across the country 2 weeks later. After moving, my medication started taking its toll on my body, mood, & personality. I wasn’t the same person. I lost my drive, my determination, my joy and my life. I wasn’t living… I was simply existing. After 2.5 years on medication, I made the decision to stop taking pharmecuticals. I know this isn’t the best decision for most people, but I couldn’t continue living my life in that state. I began researching anything and everything I could get my hands on, in regards to epilepsy, and tried many natural methods of treatment.
LIVING PROOF THAT IT’S POSSIBLE!
I am happy to say that I never gave up & conquered my career goals by age 30! I had my dark moments, as most people with a chronic illness do, but I kept going. I worked really hard to overcome anxiety, depression, and the mentality that I wouldn’t be able to achieve my goals because of my diagnosis. Every year gets easier… I am now 35, and I am living my best life! Since achieving my goals in the fashion industry, I have moved on to a new chapter of my life. I am now teaching art classes for children, and it brings me so much joy! It is also very important to me to raise epilepsy awareness and educate others about the illness. In 2016, I started Life Elektrik, which is a virtual community via social media platforms & LifeElektrik.com. My goal is to educate others about epilepsy, support those living with epilepsy, and be an advocate for the epilepsy community. The virtual community is growing, and I’m so grateful to be on this journey, meeting others with epilepsy.
A CLEAR MESSAGE
My story and message are simple… Nothing can hold you back in life, unless you give it power. Be the power, and keep moving forward! We are all so special, and life is truly a gift. Live every day like it’s your last, and cherish every moment. Don’t let anything hold you back from acheiving your goals, and always remember to stay humble and help others. I believe in you, and I know you can achieve anything!”