An ugly, green and orange hotel comforter; that’s not what I thought I’d remember about July 13th, 2013. Of course, that’s not the only thing I remember, but it’s the first thing I saw when I experienced “the worst pain known to mankind”.
And now here I am, exactly 5 years later, sitting in my own bed. I’ve been up for a couple hours now, but I haven’t worked up the energy to wash my hair or brush my teeth. I have to mentally prepare to do tasks like these because I know it’s going to hurt like hell. I know when I put the toothbrush to my teeth that I’m going to feel an electric shock sear through the nerve. I know if a drop of water touches my face while I’m washing my hair, it’s going to feel like I’m getting stabbed there.
It’s strange to think that it’s been 5 years; the memory of that comforter and that first pain feels so fresh. Yet, when I think about it, I’ve done a lot in the last 5 years. This post is really hard for me to write because my emotions are all over the place. Part of me thinks about how many horrible things I’ve endured – brain surgery, near-death experiences, allergic reactions, and suicidal ideations. Part of me thinks about all of the things I’ve lost and missed out on – school, jobs, volunteering, friendships, and the last few years of my childhood. Lastly, part of me thinks about all of the things I’ve gained and accomplished – the support from other sufferers, strengthened relationships, invaluable life lessons, perpetual gratefulness, and the bond I’ve made with my true-self.
This disease has taken everything from me and forced me to completely redesign my life. I spent 15 years becoming someone that, upon reflection, I didn’t really like. In the last 5 years, I’ve become someone that I’m proud of. I don’t believe in things happening for a reason, but I do believe in making the best out of the cards you’ve been dealt. Even though that first memory seems like it was yesterday, I can’t neglect to acknowledge all the things I’ve accomplished since then. I am so excited to see how far we can go in the next 10 years!
Now, we can only hope for a cure and a better quality of life for TN sufferers (and chronic illness sufferers alike), but I know I’m not waiting around for that day. Everyone has a unique voice and I think the world would be a better place if we listened to and learned from each other. It is my hope that I can offer some of my knowledge and perspective, while listening and learning from the rest of you.
Let’s make this a positive 5 year TN-versary and celebrate our accomplishments, our perseverance, and our resilience.
Dedicated To – My Support Network. Know that this is as much of a positive anniversary for you, as it is for me. I couldn’t do this without you guys!
Editor: Lindsay Fortin