Having the right mindset makes all the difference. For Shar McPherson, the change in mindset came when she was 9 years old and moved in with her dad. She was no longer told her disabling “disease” would hold her back, and instead heard she could do the same things as every other kid.
She’s taken control of her life in many ways, one of which is her ability to advocate for herself and the epilepsy community. Shar became involved with EFMN in 2016 after undergoing surgery to help her seizures. That experience made her want to share her story and help others.
In early 2015 when Shar was attending college in Minneapolis she was hospitalized and missed two weeks of class due to cluster seizures. After showing proof of this to her professors she still received a failing grade instead of an incomplete. She went through the proper channels at school to have this reversed but saw no change.
“It was at that point I knew I needed to talk to someone who could make a greater impact and get the school educated regarding epilepsy,” says Shar.
Attending her first Advocacy Day at the Capitol she met with her state senator John Marty who offered a solution: Shar could draft a letter that Senator Marty would then edit and send to the school. This teamwork, only made possible by Shar’s willingness to share her story and ask for help, led to a moment she loves sharing.
“After my surgery I returned to class to finish out my A.S. in Human Services. When I received my accommodation letters for the summer I learned staff had to take an epilepsy education class after they received a letter from someone at the capitol. I was so happy that Senator Marty not only listened to my story but took action.”
Advocacy for Shar is more than just a single day spent talking with her representatives at the capitol – it’s a year-round effort. She regularly attends EFMN’s Adult Connect Groups and talks about the importance of self-care, which in her eyes has a direct relationship with advocacy.
“I talk about epilepsy in my classes and through my course work. I also talk to people about how important self-advocacy is for our own health care needs.”
The fellow advocates who were in the room with Shar and her senator at last year’s Advocacy Day at the Capitol can attest that she encourages others to be open about their needs and ask for help when necessary.
“It’s important for people to meet with their representatives because you are the only one who can tell your story. If we don’t speak up, the stigma and lack of awareness will continue. My advice is to be persistent and come with your own agenda and be ready to tell your story,” says Shar.