One of the questions I am most often asked by other GBS fighters is, “How long until your face went back to normal?” It’s been a year and two months since I was diagnosed with Guillain-Barre Syndrome and most people can’t tell that half my face and most of my body was paralyzed. But I can still feel it, my doctors can still see it and I am very self-conscious about it.
Before GBS I didn’t wear much makeup and most days I didn’t wear any makeup. I was very secure in my appearance, but as a former beauty queen, that wasn’t exactly difficult. I was always happy to take pictures because I was extremely photogenic. I have the Miss Photogenic awards to prove it.
Now I find myself dodging photos and the attempts of my friends to capture me in their snapchat stories. I can feel the tightness in my left eye, my face twitches often and when I’m tired or stressed it’s easy to see it in the asymmetry of my face.
After I was able to walk without any assistance, my next goal was to get my face back. My neurologist referred me to a Bell’s Palsy specialist. As my facial nerves began to heal, the twitching in my face was constant. The treatment for this is usually botox but after some research the BP specialist informed me that botox might trigger my GBS again so that was obviously out. He gave me facial exercises to do in the mirror so I could re-train my brain how to move my face. I still do this often because it helps cut down on the facial twitching. Basically make a bunch of silly faces in the mirror (10x each) like puckering your lips, smiling, raising your brows, sticking your tongue out, opening your eyes wide, and any other facial movements you’d like to add. I also try and give myself a good facial massage whenever I’m washing my face and applying moisturizer.
I’m hoping that eventually the left side of my face will feel normal like the right side of my face. But when all else fails, I just throw on some sunglasses because the sun never sets on a bad-ass.