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.

culture shock.

I left home at the age of 18 to live in Singapore for 4 months through my college's international program. There were 10 of us Americans from all over the US preparing to embark on an opportunity of a life time. And it was. Our first week together was spent in the states as our university prepared us for the experiences ahead. With an eagerness, our new "family" listened daily as Dr. Rousealow -or pronounced as Wousalow because she couldn't pronounce the "r" sound-lectured about culture shock and what it would be like returning home. I know now that those words "wouds" didn't do justice for what we would live the next 4 months or even prepare us for our attempts to integrate back to the states. We had to experience it for ourselves. Til this day, words aren't adequate to describe what we faced. Although it's a memory, it's a part of me. It molded me. The good and the bad. It's become me.
FA has also become a part of my life. This past weekend was The FA Energy Ball. I knew I had to go. I was invited by Dr. Z and her team to present on the patient panel. From there, an invitation to a Ball. Although, getting all dolled up is not my gig, I was honored to be asked.

The plans to travel down to Tampa was a challenge. In my mind it wasn't an option not to go. I had to be there.
Just like my time in Singapore and the impact it had on my life, my words can't do justice the impact this past weekend has had on my life. Finding words to verbally communicate what it was like to my family and friends is nearly impossible. I know it's shaped me. I know it was powerful.
It was simply amazing.
The passion and dedication of the team of people to find a cure for FA is astounding and quite frankly contagious. The fund raising ball had 850 people in attendance and they even had to turn people away.
Two years. Two years, is the time line given when they speak of a cure for FA. 2 years!! That is crazy but so is the God I serve. He totally can do it.

So, thanks Dr. Z. Thanks, Kelly. Thanks, FARA. Thanks, mom and dad. Thanks, Cherie, Christy and Lauri. Thanks, friends.
2 years, a cure.
Did you hear that FA?
A cure.
Although I don't have Dr. Wousealow's notes to aid in the "culture shock" I am feeling this week, I lean into the hope I have in trusting that future generations won't hear the diagnosis of Freidriech's Ataxia as I did over 10 years ago...
and yea,I'll admit, it was a blast getting all dolled up with my mom in Tampa, FL for the FARA Energy Ball.