International Ataxia Awareness Day

I was in a meeting this week in which the person sitting next to me pulled out a sticky piece of paper and wrote on it while I was talking. For a split second, I was distracted wondering what he wrote. As the meeting wrapped up, I forgot that he wrote something. He grabbed the sticky and said, "Before we end, I need to tell you what I wrote down while you were talking." My heart sunk as I thought back in ways I may have offended him during our brief time together. I gazed over the hand written note that read, "Be around courageous people." He proceeded to explain that he was drained emotionally and physically until he spent this time with me. Tears filled my eyes and I wanted to throw up in hearing this daunting compliment. I simply uttered the words "thank you". Me? Courageous? Immediately I reflected back to the heart wrenching movie, Shindler's List, where the character Oskar Shindler agonized that he could have done more to rescue the Jews out of the concentration camps.
Ironically, today marks International Ataxia Awareness Day and I feel like I am doing nothing. I am still in my pj's at 4:30 in the afternoon and will only change out of them to put on a clean pair. I remember 7 years ago being in the Mayors office and having him acknowledge this day as Ataxia Awareness Day. I went with Al who was afflicted with cerebellum ataxia and his wife, Julie. They knew his death was looming. Two years later, I was attending his funeral. Listening to his grand kids remember him and being acutely aware of ataxia and how it robbed yet another innocent victim. Four people in my ataxia support group have died from ataxia. I only ran the group for two years. I could have done more.
So when I read that note, I felt like I was going to rip it to shreds. I am not feeling so courageous. I am off the "high" of the symposium and ball for FA. I even forgot the excitement of a possible cure in 2 years. Instead, I am recognizing the struggle of FA and how it makes me different in this world.
I know I can do more.
Happy International Ataxia Awareness Day.
and cheers to a cure.