Thank you for visiting my site. This November I'll be participating in the NY Marathon to raise awareness for Epilepsy, a neurological condition that affects more people than Parkinson's, M.S., and Cerebral palsy combined! 6 of 10 people living with Epilepsy have no known cause, and 1 in 26 pp will develop Epilepsy in their lifetime. Unlike other neurological conditions, there are no high-profile individuals willing to come public about his/her condition. The lack of media coverage and education leave many Epileptics "in the closet", feeling too ashamed and embarrassed to "come out".
I never thought I'd be in the position to "come out", but after having 3 seizures in public and 1 in front of my children, I realized public awareness begins with those who have it.
I had my first 2 seizures at age 17, and like for many, the cause was unknown. While it went dormant for 15 years, I had a "breakthrough" in 2004 during the most stressful time of my life. Since then, I've had one every year.
About a year ago, I had one in front of my girls. We were en route to their school, and while I remember hearing them cry in fear, I was physically and verbally unable to quell it. "Is mommy going to remember she's our mommy when she wakes up ..is she dead?” were their unanswered questions.
As I wearily gained consciousness, I assured them I was ok. The traumatic memory is forever engraved in our minds, and while we're still experiencing PTSD, the family dialogue has begun. It’s hard enough for me to understand Epilepsy, let alone explain it to young children. I told them having a seizure is akin to rebooting a computer. ALL brains have electrical activity, but my “hard drive” can crash under certain extreme conditions. Intense stress and fatigue are my “triggers,” but they vary from person to person. I’ve been fortunate to have them infrequently compared to many, and I’ve met families whose children’s lives depend on finding a cure and/or an effective drug immediately.
While I can't guarantee my children it won't happen again, the cat is out of the bag. The word "Epilepsy" is engraved beyond the medical bracelet and into their reality. Gone are the days of me telling them my medication is a vitamin, gone are the days of me telling them a 3 day EEG is an "intelligence test" and gone are the lies justifying my inability to drive like “other” mothers.
In running the marathon, I hope to increase awareness for the condition that affects so many. I would've never "come out", had it not been for the seizures I had in public.
To those who witnessed mine on their Southwest flight, and to the client who witnessed one in our first-time meeting, please know I am beyond sorry, devastated and embarrassed. I feel terrible for the fear and confusion you endured and sorry for your experience. I assure you, having one is equally scary.
As of now there is no known cure, but for the fortunate, medications can arrest the seizures. Unfortunately, while I continue to try different drugs at various dosages, I’ve been unable to arrest them completely. Until then, my family and I live every day in fear of the next one. Your tax deductible contribution will support the research necessary to find a cure, and at a minimum, advance current drugs to a point where they prevent seizures without causing dizziness, weight gain/loss, psychosis, forgetfulness and (possible) birth defects. While this is MY story, it pales in comparison to the millions who experience frequent seizures multiple times an hour, a day and throughout the year. I run to reinforce the need for awareness, and in doing so, raise money. Epilepsy doesn’t have the social acceptance like other neurological conditions, therefore millions live “in the closet” too embarrassed and ashamed to “come out”. Together, my hope is we can raise money and break the silence.
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