I have never answered “yes” faster than I did the request to be part of a local public service announcement for epilepsy. At least a private, cheering “yes!” One of Chicago’s finest crews – CBS – honored me with the role for Epilepsy Awareness Month this November thanks to contacts at the Epilepsy Foundation. Before I knew it I was chatting with the awesome hair and makeup artist and soon sitting on a stool in front of a green screen and camera. Like riding a bike for a former newscaster. I will share it as soon as it’s ready.
I had a great experience meeting really hard-working, energetic, sincere people. I even told them a part of me hoped I would have a seizure during my shoot there, just so they could see why I wanted to spread the word. I’m not sure they believed I really hoped for one, but I never did anyway. I am proud that I agreed to introduce myself in this PSA as someone living with epilepsy – sharing the video of this on air seizure with viewers and with you. The Seizure
For the first time in almost six years, I can say I took control of this. I want to share it so it can help someone recently diagnosed or even someone just wondering what it looks like. I have had thousands, countless episodes, with no control. Only others who have them can understand the terrifying feeling. In my case it’s an inability to speak when a voice in the back of my brain is screaming “No! I’m fine! Just give me a minute to come back.” This is particularly hard for someone who talks too much. The seizure I’m sharing has been viewed more than a half million times. This one prefaced every job interview I have had since I looked to get out of news. This one came after countless on air seizures that I successfully read right through (later asking a co-anchor “Did I just make sense?”) This one was so traumatic, some of the people closest to me in life have never watched.
I certainly have to take responsibility, having stayed in broadcast news with an epilepsy diagnosis. I found a positive side to the misfiring brain journey, using the TV role to ask for community support for the 1 in 26. I served on the board for the Epilepsy Foundation in Madison, WI and worked with Lily’s Fund and CURE to spread the word. I am now doing the same in Chicago where I had a record marathon raising funds for the Epilepsy Foundation here. EFGC I am already signed up for the 2017 team.
The truth is, I am tired of this community being an afterthought in the health care and fundraising worlds. Most of us can agree that the face of the condition itself, with dozens of different kids of seizures, doesn’t help. Most have unfair expectations of those of use who don’t necessarily look like anything is wrong. Everything from schools to landlords to employers to courts.
My current lack of driver’s license, much less temporary than expected, is due to my condition. I lost it between my diagnosis in 2008 and surgery in 2010 due to tonic clonic, formerly known as “grand mal” seizures. Doctors found a brain tumor and removed it in 2010, which improved medical problems and solved the license problem. Five years later, last winter, I had a surprising setback that stripped me of the ability to drive again. I can certainly hope for a license in the future but I have to make plans to function otherwise. Nothing is more heart breaking or disappointing in my effort than being told I need to “live with it.” That my driving issue is “not insurmountable” as it relates to being a single mom. It would be foolish for me to grab a set of keys and drive, so I won’t. I pray for change but can’t force a brain to stop misfiring. Seizures are certainly one of those things we can’t always fight. I refuse to allow any lack of understanding or awareness to be added to the list.
Seize the Day with Sarah 