Wow. Looking back, I have not had a chance to write a blog post in over a year. But because after NMO Patient Day a couple of weeks ago, and Erin, Jenna, and I finally had a reunion without the men, we talked about our defunct blog and how we should try to resurrect it, as many had originally sought information and empathy here.
NMO Patient Day is a conference of sorts, sponsored by the Guthy Jackson Charitable Foundation, and held for one day once a year. It’s a chance for NMO patients from all over the world to gather in one place (always L.A. As that’s where GJCF is located) and meet each other and have access to physicians and clinicians and others working towards not only a higher quality of life for those living with Neuromyelitis Optica/NMO, but a cure.
Erin, Jenna, and I’d met at 2010’s Patient Day, and because we live in Denver, Toronto, and Houston respectively, and because we all live very busy lives, it’s hard for us to catch up, let alone update this blog regularly. But after speaking at this year’s Patient Day about my journey on “MasterChef” and what it means for the bigger picture to me and my fellow NMO-ers, I thought I would drop by here and say hello…
It’s funny because a year ago, I was terrified of public speaking. A large percentage of the public polled say they fear public speaking more than death. Well, I don’t know about that. But I do know that I’m the kind of person that likes to challenge myself. And that means, whatever it is that causes me discomfort or fear, I tend to put myself in the situation, face it head-on, and try my best to conquer it. That goes for skydiving, snowboarding, going on national (and now international television) to compete. And now, it means speaking before large crowds.
Because I am blind, and because I still cannot read Braille as quickly as I used to read print, I don’t take any notes up to the stage with me when I speak. Instead, I have to memorize bullet points in my head and hope that I hit upon all my key points and in a cohesive order. I never like to rehearse my talks because I feel it takes away from the casualness of it all—and I prefer to keep it casual, not just because that’s my style, but because formality scares me even more. (There’s something about formality that breeds an expectation of perfection.)
But here we were, a couple of weeks ago at Patient Day, and it was probably my twentieth speaking engagement since last year. I still get nervous: my body temperature still drops, my mouth still gets dry—but at least I don’t want to puke anymore. It’s all about the little progresses, right?
Thank you to all who made NMO Patient Day happen, either by coordinating or attending it. I’m glad I met more of you, and I’ll try to put a voice to the name for next time.
And if you didn’t get a chance to attend this year’s Patient Day, stay tuned to the GJCF website—the video should be posted soon.