“This is Me”

“This is Me” is a series of short, personal videos that members of our community make about their experience with rare neuroimmune disorders. Sharing these stories amplifies our members’ voices, empowering us to advocate for increased resources and research. As a community, our stories are the most powerful tools we have.

Allen Rucker and his wife Ann-Marie talked about their experience with Transverse Myelitis in a “This is Me” video earlier this year: “I was in mourning for a long time. I lost half my body. I lost my legs.” Allen explained. “This was not anything I expected.” Ann-Marie noted. “You work hard and everything will fall into place. And it didn’t.”

But Allen and Ann-Marie didn’t give up: “We realized this is our reality and we began to change our reality,” Allen said. They turned to humor: “I actually think our humor kept us together. There is a lot of dark humor that comes from dark events and if you can laugh at it, that is the best laugh in the world,” Ann-Marie noted. Allen explained his post-traumatic growth like this. “The truth is, you have a lot more grit than you think you do.” You can watch Allen’s story here.

Shekita, a member of our community who has been diagnosed with Neuromyelitis Optica Spectrum Disorder, shared why she thinks it’s so important for our community to share their stories: “Whether I touch one person or a million, advocating is my passion, and helping others with early detection is the primary goal. I spend a lot of days suffering. I hope that my story and journey can help others who may be going through the same thing. In the end, I believe collectively, we will find a cure for NMOSD. What we do today, drives the outcome tomorrow. Ultimately, this is why I’ve chosen this path,” Shekita said.

We would like to thank the many members of our community who have opened their hearts and lives to us by sharing their stories and recording their videos. To share your or a loved one’s story, click on the appropriate link below and sign up to record your video. We are so grateful for your willingness to help us continue to strengthen our community.