ice=joy

I love this photo. To me, it portrays so much more than Delsie being her cute self in the coffee shop at my place of employment. I was laughing when I snapped this shot and I snicker every time I look at it.
See, Delsie knows exactly what she is doing. She ain't no dummy. She loves ice. I mean LOVES it. Frozen water speaks to her in ways that produce the wagging of the tail and smile on her face. Just the mere sound of the shaking of ice in a glass, causes her stop dead in tracks and hone in on the location in case one is "spilled". ICE translates into another three letter word for Delsie: JOY.
So on this particular day after I filled my cup cappuccino and started to head up to my office for the day, I realized Delsie was not by my side. This was her pose. A solid statue planted next to the ice machine. Waiting expectantly and hopeful for a passer-by to notice her and "drop" a few cubes her way.

This morning I read, "Our human tendency is to feel trapped by visual situations. But circumstantial evidence is not the truth of a matter. It is deceptive. God's assessment is always the truth of every situation. And it doesn't include our being trapped by superficial appearances."

These past few weeks, I felt trapped. I didn't ground myself in the truth. My eyes were fixated on the current circumstance. This deception led me to believe the lies. And my body got the best of me. I admit that I wasn't patient in my waiting for the ICE or more importantly the JOY. It's all around us.

Coffee shops or friends visits, emails or phone calls.

Similar to Delsie, I will wait expectantly and HOPE for a cure for FA.

Until then, a lot of tail wagging will happen.
With D and me.

"Life is not fair."

A friend of mine invited me over for dinner the other night. They have five kids so it was noisy. And I relished in every scream, cry and laughter. I welcomed the chaos. I soaked in the opportunity to help with their homework. I even confessed that I had no clue how to solve the algebra problem of a sixth grader. Yikes. A bit embarrassing but none the less, very true. It confirmed the fact that numbers are a foreign language to me. I simply don't understand it.
Similar to life. I don't get it.
As soon as their homework was complete, we all moved to the family room. This time it was their seventh grader that stumped me. I don't remember exactly what we were talking about but whatever it was, it prompted him to tease his mom by saying, "I know, life isn't fair." He went on to say, "But God is fair. Right?"
I was thankful he was looking at his mom while waiting for a response. I waited too. I had no idea how I would have answered him. I still don't.
I am sure theologians or devout Christians are squirming in their seat reading this. But more times than not, I am like the people of Israel in Exodus 16. I grumble. I doubt. I question whether or not God provides everything I think I need. I want more. Similar to the people of Israel who weren't completely sure God would provide the amount of manna (food) that they thought they needed.
If I am honest, I would answer Trent by replying with a bit of arrogance, "No. God is not fair. Look at my life. It's not suppose to be like this."
I. Want. More.
But it's times like these that I need to savor those moments that God reminds me He is there. FA and all.
On Friday my friend from out of town and I went to our favorite restaurant. After we were seated and Delsie resumed her position under the table our waitress came and sat at our table. "I have never had this happen before but a man came up to me and handed me forty dollars. He told me that he wanted to pay for the table with the dog."
A tear streamed down my face as I realized although I may not understand algebra or this life with FA, God is there in those moments.
Even in my grumbling.

bucket list

A few years ago the hype was all about the movie, "Bucket List". Honestly, I don't remember the details of the movie. However, like most who saw it, I was prompted to dream about the things I wanted to accomplish before I die. Last year, my oldest sister and brother in law, Cherie and Rob made it possible for me to check off one of things on my bucket list. A motorcycle ride in a side car with Delsie.
It was a moment I would never forget. Delsie loved it. A few times I choked up from emotions that were overwhelming. A memory to cling to when times got tough. Mission accomplished. Check mark on my list.
This year, our kind, new friends called again to see if Delsie and I would be interested in another ride. Cherie didn't have to ask me twice.

Today, Delsie and I traversed through the beauty of the fall colors in the 70 degrees October day. It was breathtaking. Simply amazing. I loved it. I think Delsie did, too.

As much as I dread having ataxia, it's moments like these that I am thankful. Having FA forces me to make a "Bucket List" and having it, blesses me with people like Richard and Karen with motorcycle rides in a side car.


I anticipate the day I can make a huge check mark next to the words on my list "A cure".

a letter to FA.

Dear FA,
I am not a huge fan of you. Not in the least. I am tired. Extremely tired. I hate that my sister told me that I looked tired. "I can not stop yawning." I replied. "Yea, those black bags under your eyes are telling", she said.
FA, you are responsible for those unwanted bags. I am pointing the finger at you for the fall at two in the morning on my bathroom floor. Jokes on you as I didn't injure anything. But you threw it right back at me when I realized the challenge I had to get back in my wheelchair.
Totally your fault, FA and I am not at all happy about it.
And FA, you're to blame for making everything so exhausting to accomplish. A trip to the grocery store to pick up some decaf coffee and cat food is greeted by a stranger, a stranger gawking as I exit out my van with Delsie. The first thing that comes out of her mouth are the words, "You're still getting around?" You did this to me, FA. It's your fault that I am made to feel different.
You are behind the dumb comments but are rooted in the desire of people to ignore you. But you make it impossible for me or anyone else, for that matter, to ignore. I want to scream mean things at you. I would love to throw my kitchen chair at you. And the whole time laugh in your face as you remain defenseless. That's what I feel like your doing to me.
I hate you, FA. I really do.
And I think that's okay. It's this angst in my life that causes this tension. A discontent to force me to fight. A reality of carrying the bags under my eyes with a sense of pride. It is because of you that I respond to ill timed comments from strangers with grace.
FA, I loathe you. But you are not me. You are this unwanted thing in my life. I can't ignore you but I can stand firm in my faith that one day, your diagnosis will be a thing of the past.
And maybe, just maybe, Lady GaGa won't feel the need to kiss me because you are with me. The day will come that that "it" will kiss me for my good looks...
sooner than later, I hope. These bags are getting heavy.
Your #1 enemy,
Holly

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.