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.

Cinderella?

I have adorned the nick name Cinderella these past few days with trepidation as well as pride. I am making plans to attend the FA energy ball. (Link is on the side)
The trepidation is the lack of transportation down to Tampa. Plans are up in the air and I leave in two days. A bit intimidating, to say the least.
On the flip side, there is extreme pride when I think of being involved in this fight to win the war of finding a treatment or cure for FA.
So I guess I come by the name Cinderella honestly. I imagine she felt a bit overwhelmed as her step sisters made it nearly impossible to attend the ball. She didn't give up and nor will I. Although her dress was waved by a wand and she rode in on horse and buggy, I will wear my Goodwill gown and wheel in my chair eager as she was, for a prince. And for me, a prince would be nice but a cure would be the best...before the clock strikes midnight, here I come USF.

strangers.

We were complete strangers. That is, until this weird, invasive and all encompassing thing called Ataxia entered our lives. Which certainly was not invited. We all wanted this "guest" to know that although it had invaded our lives, it was not going to control us. It is strange how something so awful, so obtrusive can be the very thing that "ties the bind". Ataxia is a common thread in our lives but it is not who we are. Ironically, without the diagnosis, I would never have loved Becky and Deb like I do now. A six hour road trip to see each other wouldn't become a memory. We wouldn't talk for hours over decaf coffee or order KFC and eat at the beach, laugh at our failed attempts at love or cry together knowing this intruder of Ataxia robbed the life of someone we loved.

All of us were strangers.

Or what about the stranger who saw me stuck in my driveway during one of the many blizzards this winter when I attempted to roll my trash can out to the curb? He must have spotted me and turned his truck around, only to push my 300 lb. wheelchair in the garage. I hardly uttered the words "thank-you" when he hopped back in the cab of his truck and drove off.

He was a stranger to me.

I attended a funeral of an older man, Fred, who died of cancer. Fred touched my life. He loved Jesus and everyone who knew him, knew that. We shared many conversations on the phone, some that lasted more than an hour, before he died. I grew from Fred's wisdom and admired his faith. I miss our talks. I sat in the back pew in the chapel for his funeral. I sat next to a lady I had never met before. Fred's songs he chose to be sung at his funeral hit me hard. I wept. I couldn't control it. The lady next to me gently placed her hand on top of mine and squeezed some love into me, reminding me it was going to be okay.

She was a stranger.

I flew out to California to visit my friend. And my flight out there was delayed. This made my layover in the Minnesota airport a total of 5 minutes. No small feat for a girl on a scooter that has speed of a tortoise, with a service dog that poops in the carpeted terminal and has to go the distance from gate A to gate Z. Fortunately, the plane waited for us. The ENTIRE 757. I discovered that my seat was GA- the middle of the aircraft. It was at that point when a man seated in the aisle seat of first class tapped me on the shoulder and said, "have my seat, I'll take yours." He wouldn't take no for an answer and proceeded down the airplane. Miles down to seat GA. So there I sat in first class and treated like a queen.

A gift from a stranger.

Maybe my life is filled with unique situations but I am not convinced, as I once was, that we are surrounded by strangers. These people tell me otherwise, in those divine moments, they became my friends.

So as much as I hate you, Ataxia, I embrace you.
And the moments I shared this weekend with Becky and Deb will forever be etched in my mind.
Although FA has taken away a lot from me, it has given me so much more.
And for that, I am thankful.