Welcoming SRNA Program Associate Ireland Thomas

Hi there! I’m Ireland Thomas, and I’m joining SRNA’s team as Program Associate: Communications and Community Programs. I’m so excited about this role and I see it as a huge next step in my journey as a patient and advocate.

Some of you may know me, but others may not. I’ve had Neuromyelitis Optica Spectrum Disorder (NMOSD) since I was 6 years old, and I just turned 22. Growing up with a condition like this is a bit different than getting it in the middle of your life. I wouldn’t call myself more or less lucky to have been diagnosed when I was young, but I don’t have much of a “Life A” of pre-diagnosis to miss. All I really have known is the “Life B” of having a rare condition, and I’ve spent my whole life trying to reconcile with it.

This pursuit of reconciliation with my experiences drew me to writing. Writing was the one medium that made me feel as though I could fully articulate all the things I had gone through. Unfortunately, I have always had a very good memory, even in childhood, meaning I recall every hospitalization, every IV blowout, and all the sleepless nights where I stared at the ceiling attempting to will my NMOSD attacks to never happen again. I remember it all, and although I wish I didn’t, writing saved me from being lost in the memories. Rather than allow what happened to spiral around me like a song on incessant repeat, I wrote it all down. The years of chronic pain, the misery of repeated hospitalizations, and the torment of living in a body that seemed as though it was always out to get me spilled onto the page and freed up some mental space. I felt free.

Considering how beneficial I found writing, I decided to go to college early at 16 to develop this skill. I graduated in December 2023 with my Bachelor’s degree in Creative Writing, and I will be returning to school this Fall to get my Masters in Fine Arts. The sort of shapeless mess of grief that so easily filled the page became more structured through this education. I was able to juxtapose my worst moments with my best moments, and I was able to show the ways my illness impacted me in a way others found engaging and informative. I knew then what I wanted to be doing with my life; writing my story, and helping others to learn to write their own stories.

Being part of SRNA is the best way for me to continue to hone my skills, and to help articulate my personal story and the stories of other people. SRNA is an organization that aligns with my values of connection and community, and acts as a great connector to similar disorders. Growing up alongside it, it feels as though SRNA has helped to forge us all together as one big family, when we otherwise would’ve been relatively orphaned.

I will continue to pursue my dreams of writing my story and helping others to articulate their own story, and I’m grateful to be doing that through SRNA! Working for the organization has been my dream job for years, and I feel so excited for my future, helping to serve the community.