The Words Beneath My Fingertips

My best friend/sister-from-another-mister, Liz, ran, for the second year in a row, on behalf of me in the CTF Cupid's Undie Run in DC. She raised almost $1,300 for NF research!   This was her last year, in mid run: She flew us down to DC so we could see her run this year <3   I wanted to get her crossing the finish line- it was all sort of confusing and fast. And I failed.  But this was her with "Teddy Roosevelt" And with me and me again! A lot of tourists took this photo too. We're pretty famous now. We are going to run with her next year! (yes, that means John, too!) I thought I took a video of the entire start of the race, but I never hit 'record'. I only have the last 11 seconds of it. Double fail. So the first part of the video is the last 11 seconds of the start of the race, and then a few seconds of the commotion AFTER the race: And so everybody knows: Liz is one of the most beautiful and generous people I ...

I have an optical glioma with atrophy (a benign brain tumor that is very very slowly eating my optic nerve), so I see a neuro-ophthalmologist every year just so my vision can be monitored. It will be very unlikely I'll lose more vision than I already have, which is a good thing, but it is good to be kept monitored just in case!  Anyway, my eyes also reveal a very common characteristic of NF1- Lisch nodules. These nodules are basically raised freckles. Every time I see my N-O, he brings in residents just so they can look at my eyes(and so they can oooh and aaahh) . For as long as he's been a N-O (which is at LEAST 30 years and he's really really really respected in his field- one of the top N-Os in the country), I have the most lisch nodules he's ever seen. I guess that makes me pretty cool! The picture of my eye shows my nodules. They can be easily seen with a flashlight or in direct sunlight. This is my right eye. My left eye actually has MORE nodules! (My righ...