Our Champions
Redefining Independance
Living with ALS often means redefining independence, but it doesn’t mean losing purpose. This month, we’re honored to introduce Gillian Grindstaff, a member of Her ALS Story, who shares how creativity and community have helped her navigate life with ALS. Her story is a powerful reminder that while ALS may change what’s possible, it can never take away the ability to inspire others.
A year ago, my diagnosis of ALS arrived almost like a mythic prophecy: a description of how, and roughly when, I am likely to die. Like many transformations, it was so unimaginable as to feel nearly imaginary.
I surprised myself and a lot of people around me when I announced that I wanted to put on a play. I knew nothing about production and I hadn’t been on stage since I was 15. I work as a research mathematician. This was not a realistic plan.
I reached out to the only people I knew with experience, the Oxford People’s Theatre, and they immediately took the ball and ran with it. In less than eight months we raised over $20,000 and created a play from scratch, weaving my story in with six tales from classical Roman mythology that felt as visceral, arbitrary, and absurd as what I was going through. Metamorphoses was brought to life in front of sold-out audiences by a brilliant and generous community theater cast of 35 performers aged 11-93. We’ve received fantastic reviews, and I’ve been asked to speak about the project and experience in public interviews and international conferences.
I’m now in the next stage of progression, unable to find enough ingenious ways to manage daily life on my own without the strength to walk, dress, or write on a chalkboard. I miss my independence, and I’m scared of what’s next, but I’m proud to still be able to think new thoughts and create something beautiful. I could not have done this play on my own – so many people contributed their skill, creativity, energy, and love to making it the best it could be. This ragtag community theatre troupe made me feel uniquely supported and accepted in my rare condition, as I’ve transitioned from merely ill-fated through increasing disability. That’s what I want for myself and for all those living with ALS: to be able to connect with others and live out a brilliant life that they couldn’t have done alone.
Gillian Grindstaff
