Epilepsy has really done a number on me this month. I’m taking more medicine but still no seizure control. Nothing new but no less frustrating. My goal was to blog every day in November since it’s epilepsy awareness month. Playing a little catch-up today.
I ran 26.2 miles for the Epilepsy Foundation of Greater Chicago in October with my beautiful, wonderful guide Monica Lee. I cannot thank Monica enough for making me feel safe. Not to mention Monica is an awesome running partner and friend. I’ve never had trouble during a race and I was lucky to get through October 8th without a seizure. I could breathe during the Chicago marathon since Monica was there and knew what to do. These days if you see me running, there is a good chance a friend or family member is following me in a car or on a bike. I can’t and won’t run alone but I also can’t and won’t give it up. I need it.
I had something come out of my typically TMI mouth this week that I want to share. I respect those who do not want a condition like epilepsy – anything involving their physical or mental health – to define them. Some people don’t have to and no one should. At the same time, I let this condition define me many years ago when I chose to continue working in TV news, having seizures on the job. Now I’m choosing to let it be who I am and I’m grateful for your support. Click here to watch the PSA airing this month on the CBS affiliate in Chicago.
In November, I hope you see more purple, the color of our cause. I try to add purple year round to my phone case, a bracelet and my wallet, I’ve even added 
fingernails and (what’s left of) toe nails to the display. I often wonder, though, who knows what the purple stands for. Does anyone outside the family understand the condition? Even those close to me have trouble at times. Epilepsy sits on the sideline because it is mysterious and inconsistent. It should be, given that it comes from the brain, the most complicated part of the body. Then there’s the fact that the community is afraid of seizures and those diagnosed are often afraid to admit it. I don’t blame them.
I had a seizure in front of my son recently. I told him at bedtime that I was proud of how he handled himself and I reminded him I’m grateful it’s me, not him or his sister. I pray every day for those who have to fight this for their kids. He responded by saying he wouldn’t go to school if it was him. The honesty was sweet but it also broke my heart. There are children who have epilepsy, dealing with medication, side effects and the fear that they might have a seizure every single day.
So it was especially touching when my son, who has witnessed and helped me so much over the years, saw the Green Bay Packers quarterback Brett Hundley 
talking about his sister’s battle with epilepsy before a recent NFL game. Yes, we are Packers fans living in Bears country, so imagine my football boy relating to the Packers QB! Click here to watch the Brett Hundley interview. Listening to Brett talk about his experience made my son – made all of us – feel less alone. My kids are brave, strong and proud… but I know they would do anything to have me free again and I hope they’ll join us in the fight to make it possible.
Please click here and consider a donation to the Epilepsy Foundation of Greater Chicago. The non-profit serves kids and adults, saves lives, and helps people like me survive.
Seize the Day with Sarah 