Recover (excerpt) by Ireland Thomas
It’s time for the Zoom meeting I’ve been anticipating all day.
I click “Join Meeting” and I steel my nerves, waiting for my interviewer to join the call. I’m fifteen minutes early–I always show early, just in case. Within a few minutes, one of my connections with the Siegel Rare Neuroimmune Association, Lydia Dubose, joins the call.
We chat for a bit. She’s a really sweet lady. Her dark blonde hair, almost the same color as mine, is cut to shoulder length. Her face is so easy to read, and the continual reassurance of her small smiles and attentive gaze encourages me to speak freely without the usual constraints of my anxiety.
She asks a lot of questions about what all happened when I got sick. She never interrupts me when I tell her my story, and that’s something that rarely ever happens. Almost always the person I tell interrupts–one time, when I told someone I started going paralyzed but we luckily caught it in time, they mentioned being sick once from the flu. I guess they were trying to connect, but having the flu for a few days isn’t really comparable to lifelong illness. This makes the connection with SRNA so much more powerful—they understand what I’m saying, and they can recognize the turmoil of hard times and join in the celebration of personal victories, and I don’t have to over-explain the smallest details that trip up those who aren’t familiar with rare neuroimmune disorders.
When I try to talk to other people about my illness, I often find they’ll tend to look at me like I’ve been talking too long, like I’m burdening them simply by conveying my personal history that they asked to know about. So I don’t talk to others very often anymore. When someone asks how I’m doing, I say I’m fine, even when I’m not, rather than get into the nitty-gritty of describing what an immune system is and does, and why it’s backfiring on me now.
Lydia and I have been talking for a while now, and then she asks a very important question.
“So, Ireland. Why do you want to be a peer connect leader for the Siegel Rare Neuroimmune Association?” Lydia asks.
A peer connect leader’s job is to take care of those with rare illnesses in crisis. It’s to have an understanding of their problem that goes beyond their doctors’ understanding and their family’s understanding by having been that person with an unheard of illness wondering how to proceed post-diagnosis.
I don’t really think too much before I give my answer. I’ve been working so hard to get back some semblance of mental health—having an autoimmune disease since age 6 can skew your perception of the world and your place in it. But I’ve finally gotten to a place of some stability, a place of luck where things are finally going my way. I get to live a life my doctors were sure I’d never get to see.
“I want to help people with rare illnesses like mine to regain their lives. I want to support them in the ways I didn’t really get support back when I was a kid. I want to fight for them–to be a voice for the voiceless, the unsung. ”
When I say those words, I suddenly know that I’ve found my purpose. I have found a future–I have spent all these years building my way to these moments, this connection.
I have a voice now. I have a life now. I have hope now.
This condition may not end, but I will do what I can to recover.
I have connection, and I have community, and I am not alone in this anymore.
Articles represent the views of the author and do not necessarily represent the views of SRNA.
