Thankful Thursday - Carrie's Story

Perhaps the best way to speak about how Empowering Epilepsy has impacted my life is through an episode that happened to me on November 6, 2023 that changed my life.

I stopped by the Empowering Epilepsy office, unannounced, in a very vulnerable state, and Leigh “rescued” me. She stopped what she was doing and focused on me. Empowering Epilepsy, as I told Leigh, is my safe space. Having a place with information and resources fully accessible in-person and virtually, and available to different demographics (age, for example), and especially having Leigh, who had the foresight to start this organization, is a God send.

Empowering Epilepsy has provided me and my family with the information and support we needed to understand the type of epilepsy I have and a place to “belong”. Leigh, with the information she provides; the in-person and virtual workshops she provides with the top experts from around the country and world speaking to us, including those from Cleveland Clinic; the opportunity to meet and talk virtually and in-person with individuals experiencing seizures regardless of their origins; and the empathy and support she gives, has been there for me (and I am sure for others) and helped me when I needed help. She continues to be in my corner quietly, gently and lovingly “nudging” me forward as I continue to be involved with Empowering Epilepsy.

I LOVE, LOVE, LOVE my Seniors With Epilepsy Group monthly meetings. They are my new family and friends.

I feel empowered; embracing my condition and not letting it not define me or limit me (I call that my new normal); and I am moving forward more boldly to help change the conversation about epilepsy. I am now sharing the information with my church which is a national historic landmark in the heart of Cleveland Clinic’s Main Campus, with my doctors, and others with whom I come in contact, giving them the information and inviting them to join us at Empowering Epilepsy. I carry the Empowering Epilepsy card in my purse and hand them out.

As now a 72 year old African American woman, wife, mother, grandmother, and now a great grandmother, I do not see many patients and providers who look like me. And, we, in the Black Community and overall in this country, do not talk about epilepsy like we talk about Alzheimer’s, Breast Cancer, Heart Disease and other medical conditions and financially support those efforts. Through Empowering Epilepsy, Leigh has supported me in being able to tell my story in my community and elsewhere; to epilepsy and other providers as a panel member at a medical conference (LIFE Conference); along with other encouragement as I seek to gear up to help Empowering Epilepsy reach out to the underserved and the underrepresented communities.

Below is a copy of the message I emailed to Leigh from my encounter with her on November 6, 2023:

Leigh, Thank you for extending your kindness and generosity to me when I stopped in earlier today. I am very appreciative of how you received me. I felt I was in a safe space.

Currently, I am transitioning to new epilepsy medication, trying to better understand my diagnosis, and seeking written information to share with my family, especially with my husband who is my main support person. Since my husband and I were near your office this morning for another appointment, we came by to see if the Center was open, and if it was, to pick up the literature you had suggested that would be helpful for me and also for my family.

Today begins the fourth week of the medication transition and I am obviously still adjusting. And yes, I do wish to have a conversation with you at a mutually convenient time. May God continue to bless you and the work to which he has assigned you! Blessings!

Carrie

Cleveland Heights, Ohio