Holly's Hope

2012, let's begin.

2012-01-01T09:21:00.005-06:00

It's the first day of 2012. There is something about the new year that sounds enticing. The possibilities seem endless. Life appears approachable. I feel a little more courageous to face what is ahead. I welcome change instead of run from it. I long to be closer to the One who created me...it all equals HOPE.

...and then FA enters the picture. Shamefully, 2012 quickly loses its appeal. I am consumed by its uncertainty. Fear muffles any form of courage I muster and change means progression of this stupid disability. I shy away from Him. The One who is everything. The Alpha and Omega, the beginning and the end.

Last night I was surrounded by friends who allow me to be me and more importantly, love Him. So refreshing and so fulfilling. Without them knowing, they made FA smaller and helped me look to the new year with excitement.

FA is in my viewfinder but it's not the only subject in my snapshot of this life here on earth. 2012 is here and so is FA. But it's not forever.

"Do not despise these small beginnings, for the Lord rejoices to see the work begin"...Zechariah 4:10

2012, let's begin.

I'm okay.

2011-10-14T20:28:00.010-05:00

This past week I bumped into someone that I hadn't seen for over ten years. "HOLLY! Hi."
Uh oh- I had no idea who she was although she did look vaguely familiar. I have tried to handle these awkward situations with grace. I simply replied to her, "Help me remember our connection again?" She did and I remembered. I smiled and said, "Sure enough! How have you been?" At this moment her face dropped and she grabbed my arm, "Well, I am doing great but it doesn't look like you are doing too well."
Welcome to my life.

This morning, I had to say good-bye to Delsie. Our lives are going to be changed forever. And because of MY fear of separation, I have been struggling. I can't cry and talk and my dad has trouble hearing-not a good combination. He asked me if I wanted to say good bye to Delsie before I left for PA. Through my tears, I did it. My dad is oh so sweet for watching her for 3 weeks while I meet Barkley. Just like everyone who is encouraging me with hugs, prayers, notes, candy, texts and donations....it's so overwhelming. And so very humbling.

I wish I was quick enough to respond to my old acquaintance, "I am doing awesome. In fact, the best I've ever been." Instead, I left our conversation a bit stunned but believing in my heart without a shadow of a doubt that on the outside, I may not look okay but on the inside, my cup overflows.

2 Corinthians 4:16
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.

This time tomorrow, I'll be hugging Barkley good-night.

Yea, I'm okay.

I love and hate FA.

2011-10-02T17:49:00.008-05:00

I love this photo about as much as I hate it. It makes me remember how hot it was this summer. I loved it. I hate that it's the past and as I pulled the hood up on my sweatshirt and turned on the heat this morning, I started thinking of the past. And then I saw this photo. I love it and hate it. I went camping this summer with my family and not just for a night- the whole entire week. 10 days. In a tent. In 90 degree weather. And Michigan humidity. With my entire family. My mom and dad. My 3 older sisters and their husbands. My 9 nephews and nieces. And Delsie. Delsie and me. I remember when I first returned as a team with D, I was determined to walk on this very beach with just her aiding me. And I did. That's my Delsie. Here I am, 10 years later making another memory with her. Maybe my last one camping with her. So I hate this photo, too. I can't rewind. FA has progressed. I can't walk. I am in a wheelchair. And now Delsie is retired. Oh, how love this photo. Oh, how I hate it.
11 more days until I meet Mr. Barkley for the very first time. It's surreal. I can't believe I am at this point. Not really knowing how to feel. One minute I am elated and so excited with the addition of Barkley. The next minute I am completely overwhelmed and totally uncertain with my decision to pursue a successor dog. This week a friend of mine told me it was probably similar to the time in her life when she was preparing for her second child. She went on to tell me the anticipation was much worse. How I hope she is right.

Then I snap out of the funk of regrets and look at photos like these of my nephews and nieces...and smile. We made a memory. Me and D. She gave me my life back that FA tried so desperately to take away from me. I won't have it. Delsie won't allow it. And now Barkley will join in the fight and tag team with us. Delsie is retired. My palms are sweating as I type those words. I can't look back. I need to look forward and trust that God has my back. Barkley is my successor dog. I have been so consumed with the preparation that in a bizarre way I forget I have FA. Seriously. That's weird, I know. But I have been carrying on as if my life is normal. And nothing about having FA is normal. I found that out Saturday morning as my forehead caught my fall on the bathroom tile. Shoot. I have FA. That's right. That's why I have been blessed with Delsie and soon, Barkley in my life. Every fall is humbling and a bit terrifying as I live this life on earth with FA. I don't pretend to get it. It hurts. A lot. Both physically and mentally.
But I crawl back in my wheelchair. Cry a bit. Shake it off. And know in spite of this love/hate relationship with FA and a goose egg on the forehead, I am not going to let it win.

Ready or not, here I come Barkley.

a letter from Delsie

2011-09-08T12:38:00.003-05:00

My friend set this page up on facebook. I love her for loving me.
http://www.facebook.com/#!/pages/Hollys-Hope/163325103746738
T minus 36 days until I meet Barkley.
or if facebook is not your thing, here is the letter from Ddog:

Hey everyone!

This is Delsie. For the past month I've heard my mom, Holly, talk about retirement. Apparently, I no longer have to work. And rumor has it there's gonna be a new dog in town!

Along with the excitement I've seen her stress about the transition and cost involved getting Barkley, her new service dog. I'm turning 13 years old in December and looking forward to a life of luxury; ie., sleeping at home while Holly's at work, chomping on ice and soaking up the attention from you, all the while watching the new dog figure this gig out. However, the finances are the tough part. I teamed up with Holly's friend, Tiffany, and as my last heroic deed before retirement begins we need your help to raise funds for Barkley.

A service dog from Canine Partners For Life costs $24,000.00. Yes, folks, that's how much I'm worth. :) However, Holly only has to pay $2,500.00 for Barkley and the 3 weeks of training and costs associated with getting a new service dog will run about $5,000.00. You can check out the awesome organization I came from and where Barkley is at www.k94life.org.

You can be a part of this team effort to raise the needed funds to continue helping Holly fight the debilitating, life shortening and degenerative effects of Friedreich's Ataxia. Friedreichs is a neuro-muscular disorder. About 1 in 50,000.00 in the United States have FA. Most people diagnosed with FA require mobility aids such as walkers or wheelchairs or service dogs like me! Or BARKLEY!

Tiffany reassures me that my last 10 years of service has changed Holly's life, making it possible for her to live independently. As a service dog, I have kept her encouraged and motivated to do life as we fight this awful disease together. I am honored to pass the torch on to Barkley, Holly's new service dog, as I begin my retirement as her pet.

I would love to have you join me and Tiffany raise the money needed to make Holly and Barkley's partnership possible. Holly is the best mom ever! Even though I won't be able to physically help her any longer, I want to do my part. You can help!!

Here's how: Your donation can be tax deductible by writing a check to
Central Wesleyan Church by October 1, 2011
446 W. 40TH St.
Holland, MI 49423
Write "ATTENTION HOLLY LEBLANC" - make sure her name is not on the check (you can send an attachment or write it on the envelope)
*For a tax deductible receipt you must make sure the check is written out to Central Wesleyan Church*

Your support means so much to my mom. I love seeing her with her friends, like you. I can not wait to finally love on you and show my appreciation.

On behalf of her human and canine best friend, thanks for taking care of my mom.

licks-n-wags,
Delsie

any questions?

Email: tiffanymanderson@gmail.com

in just one year.

2011-08-23T17:39:00.004-05:00

This time last year I was in the last minute preparations to attend the FARA energy ball in Tampa, FL. Just one year. A blink of an eye but what seems to be a life time ago. A weekend surrounded by people who are passionate about finding a cure for this disease. A diagnosis that causes people to wonder what is wrong with me. A disability that makes me feel alone; different. I fight against feeling pitied or patronized. 1 in 50,000 people have FA. And I am the 1.
The year brought several new lives, as my friends gave birth to healthy children. 4, to be exact. I've been to a couple of weddings and a handful of funerals. One of my friends moved to Arizona and visited after she settled in. I spoke at a Women's conference. My parents dog died. My oldest nephew got his license and drove over. I directed a play at a local high school. I bought a trike. I applied for a new service dog and have begun to retire Delsie. A good friend of mine received a new heart while another friend finds out if he is a candidate for an intestinal transplant. A year. And I have FA.
This time last year, I was on a high. I was euphoric. I believed there would be treatment or even a cure for FA in 2 years. One year passed and one more to go...life goes on.
I desire to be engulfed with this passion to find a cure. I need to be desperate. Sold out to the cause. And fight like crazy to live a full life on the hope that FA will be a thing of the past. For a year, 10 years, or for however long it takes.
Cheers to the 2011 FARA energy ball. Thank you to those who haven't lost the zeal. It is my hope that the wrath of Hurricane Irene doesn't touch you. But if it does, just as Delsie, my mom and I did when we got caught in the rain last year, may you still dance.
And while you dance, let's make it one step closer to a cure.
Next year, at this time, I can't wait to write three simple words: They found it.

bursting with 8 X 10 pride.

2011-08-14T13:39:00.009-05:00

The first thing that goes through my mind when I think of Barkley as my service dog is, "I can't believe I am doing this." And yes, it seems lately that is how I begin my conversations with God. Seriously, I cant believe I am doing this again.
The pastor I was listening to this morning, started his sermon with Psalm 62:7-8. "My salvation and my honor depend on God; he is my mighty rock, my refuge, trust in him at all times, O people; pour out your hearts to him, for God is our refuge." The pastor went on to say this passage had nothing to do with his sermon, he just felt like he needed to share it. I am so thankful for this guys obedience because I needed to hear it.
Since the news of my match with Barkley and the confirmation of Delsie's retirement, I have been a bit nostalgic. Okay, a lot nostalgic. I know the dam of emotions is going to break any moment. This is affirmed by my friends text, phone calls and emails this week asking how I was doing.? I think I am doing okay. And this morning I was reminded that God is my refuge. I can pour out my heart to him- he gets it. Even when I don't.
I apologize if you have crossed my path this week as you quickly had to humor me with interest as I flipped through five 8 X 10 photos of Barkley I received. It is mortifying as I think back to the staff at Delsie's vet, the assistant of where I maintenance my wheelchair and the worker at the pet store- to name a few victims. "Delsie is retiring. Let me show you the photos of Barkley." Keep in mind, I hauled out five 8 X 10 photos. Seriously. Mortifying.
I find myself thinking through every situation in anticipation of Delsie's retirement and Barkley's arrival. It's overwhelming. It's a bit absurd and totally crazy.
But so is living with FA. It's a daily battle not to grow with discouragement and frustration. I force myself to choose the things I have gained through the diagnosis of FA and not the losses. Believe me, I don't always succeed with this- it can be overwhelming, a bit absurd and completely crazy. But scripture like Psalm 62:7-8 is there to get me back on track and reminds me to trust in him at all times...especially the times I can't believe I am doing this.
Ready or not, here I come, Barkley.
Did you know Delsie is retiring? Let me share some of the 8 X 10's I happen to have...

passing the torch...

2011-08-08T20:43:00.006-05:00

I remember my sister seeing a guy in the airport using a service dog for balance and she saying to me, "Look, Howard, that might work for you too."
and boy, was she right.
Delsie helps me more than I could have ever imagined as I live with the effects of FA. Going out to train with Delsie was one of the hardest things I have ever done but the most rewarding. She has been my Christ with fur on for over 10 years. She has been so faithful and has worked so hard. Delsie is 12 1/2 and has been "telling" me in a few different ways over a few months that she would like to retire. Service dogs are expected to work 8-10 years. She has done her job. It's time for Delsie to retire.
Believe me when I tell you that this has not been an easy process. But it is all about her now. She has made it all about me for 10 years. She deserves to be pampered as a pet and hang up the harness.
And now we welcome a new member to our family. A 1 1/2 year old black lab named Barkley. Today I was informed by CPL that a match was made for me with a successor dog. In a home full of estrogen, we anticipate, a boy.
My mind is racing and my heart is overflowing with emotions. After months of the application process, I am once again fighting FA head on.
Me, Delsie and Barkley.
FA doesn't stand a chance.

Nelly, Debbie and Bertha.

2011-06-07T10:12:00.006-05:00

This photo is random. No significance other than I love my Ddog. She makes me smile. And lately, she seems to be the only thing that makes me laugh. Delsie and Jimmy Fallon. Truth be known, I want to clone the guy. He is hilarious. But, alas, I digress.

It is pretty revealing that the first thing out of my mouth is Delsie and Jimmy Fallon. What is that verse? Matthew 15:18, "But the things that come out of the mouth come from the heart, and these make a man 'unclean.' This may be a bit of stretch but bear with me...

Lately, I have been Negative Nelly. Debbie Downer. Boring Bertha. If your name happens to be Nelly, Debbie or Bertha take no offense. I am the one who is adorning the adjective. Me, "Happy" Holly.

I tend to go through seasons. And although I LOVE -with a capital L. O. V. E.- this season in the weather, my attitude could use some adjustment. I fully acknowledge it but can't seem to snap out of this one. So, I ride the wave of discontent and hope it crashes into the shore soon.

Lately, I have had no motivation or passion. I feel as though I am just taking up space. I retreat in my home after work and go for walks with Delsie. The good thing is that my feet aren't freezing! I am not part of anything to find a cure for FA and it's killing me. Literally. It's not often that sentence can have double meaning.

This weekend I thought I would listen to what I tell my clients and force myself to do things. A hard place to be when you don't feel like it.

Friday I hung out with a good friend all day. Totally what the soul needed. As part of my many errands that day, I stopped to get Delsie weighed and nails trimmed at her vet. One of the staff members asked me if I was Holly. I am sure she was looking for Happy Holly. For a brief moment I thought about responding, "These days it's Nelly, Debbie or Bertha depending on my mood." Instead, I nodded and given my attitude, I didn't want to have a conversation. Before I knew it, the staffer went on to thank me for speaking at an event her daughter was a part of. I had no idea what she was referring to but as she went on she got all choked up and had a hard time talking. "My daughter will remember your story forever. When she told me about it, I could tell she'd been changed. And when she talked about Delsie, I knew it had to be you. Thank you for telling your story."

Wow. Negative Nelly can make a difference?

Saturday was another gorgeous, hot day. My sisters are camping at the beach all week. Although every ounce of me wanted to veg on my couch all day, I knew it would be best for Debbie Downer to be with the family. They love me for who I am, right? One of my sisters and I decided to lay out and read by the pier. So, with her weener dog, Libby, and my black lab, Delsie, in tow we made our way to the perfect spot. Walking on sand with FA is a little bit of a challenge. Because it was the beach and hot, Delsie didn't have the walking harness on. No sooner did my sister and I take a wobbly step, did a guy dressed in Sunday attire come. He gently offered assistance and ran off. Not a big deal to him but such a blessing to us. As we were leaving an older gentleman in a cherokee jeep was watching my efforts getting back to my wheelchair. After I plopped down and began moving, he yelled out the window to Debbie Downer, "Keep it up!" with his fist gesturing in the air.

Sunday, I met some friends for lunch at a restaurant not far from my house. I decided we would walk as temperatures like that are few and far between in Michigan. On my way home I caught a SUV out of the corner of my eye, pull in an empty parking lot next to my route. I confess I turned the volume on my ipod louder and stayed focused on the sidewalk ahead. "Please don't talk to me, please don't talk to me..." I caught a lady running after my chair with a Bible in hand. Uh oh. I stopped for fear of her passing out and took out my ear buds. Shamefully, I think I inhaled. "I can't remember your name but I read about you in the paper." Should I tell her it's Boring Bertha? "I'm Holly." By this time she was crying and must have been nervous as she was shaking. "I have to be obedient and tell you this. Some people may think you are handicapped but you are not." She squatted down to awkwardly find something to write on as she had a pen. The only thing she had was a napkin as she pulled it out, another one flew across the parking lot. Her hands were still shaking and she opened her Bible. She wrote on the crumpled napkin Psalm 84:11b.
The napkin is sitting on my table. And I have read that verse every day since I met Ann. When I opened up my Bible, that is the only verse highlighted on the page.
I long for my walk to be blameless and my adjective to be Happy again. Oh yea, and a clone to Jimmy Fallon knocking on my door, would be great.

the ying and yang of life.

2011-05-24T09:57:00.004-05:00

I always find it a bit ironic when I read a previous post en light of a recent event. And this is no exception. "Time heals all wounds"...it's been just short of 3 weeks that we had to say good-bye to my parents dog, Jasper. The wound is still there and time keeps passing. I am sure my wound is not as deep as my parents. None the less, Jasper is gone. And it hurts. Like crazy.
This photo was taken just an hour before she died. Jasper had quickly developed a tumor in her stomach. In a week time span she went from a "frisky" 12 year old to acting like a sick 84 year old. She was miserable. Couldn't eat and rapidly declined. It was time to say good-bye.
I am not sure why but I have a much easier time knowing a humans dies than a dog. It's weird, I know. But so very true.
Delsie and Jasper are the same age. So every step Delsie makes, I am thankful. I usually plug Delsie's ears when I say this but Jasper may have been smarter than Ddog. She would have made a phenomenal service dog. My parents spoiled her rotten. She was a high maintenance dog. And beautiful.
It's now time for me to end this post. I feel an ugly cry coming on and it won't be pretty. I can't talk about Jas to long without losing it.
Time. It's a strange thing. Hated and loved the same.
Just like FA.
You were loved, Jasper. Heaven has a good one.

anesthesia and cliches.

2011-04-24T18:56:00.005-05:00

Time heals all wounds. I never say this cliche. It's a lie. One of those statements that place an unnecessary amount of pressure on someone who is grieving.
And in grieving I mean, a broken heart, a gut-wrenching pain that you can't explain. A hard core kick in the stomach that leaves you speechless but an ability to cry at the drop of a hat. And yes, I am talking out of my experiences.
A friend who died of a brain tumor; another one lost a brother to cancer; a classmate who was involved in a freak accident and as a result is now unable to walk as over 90% of his body suffered third degree burns; a boyfriend that was suppose to be forever, ended the relationship; a mom diagnosed with breast cancer; a couple loses their 2nd child because she fell 2 weeks before her due date; and just yesterday, I attended a memorial service for a friend that I knew since 7th grade. He committed suicide. He was only 38.
FA? Really?
So, yea, I don't say time heal all wounds. Because when you're the one doing the grieving, time feels like your enemy. I would love to "pause" the happy times and simply press "fast forward" during the times that hurt like crazy.

Time does help move you toward a new normal, though. This is the case with my snoz. Time did foster the healing. I am on the other side of the surgery. Yep, I was right, the crack I heard required surgery. And today, I was able to sneeze and not feel like I would pass out from the pain.
I am able to laugh as I go through the photos and even take pride in one of my mantras-this, too, shall pass- and it did.

I was a little baffled when this photo, along with MANY others, showed up on my camera. "Mom, why did you take all these? I look ridiculous!" My sweet mom replied, "You kept asking me to take photos." I have absolutely no memory of this. It's a good thing that I have proof that I did get dressed before I left the hospital. Some of the photos show me that one of my sisters stopped in. And that night my other sister and her family brought over Chinese to celebrate my dads 72nd birthday. Otherwise, I would not have believed it. Those were some good drugs.

It's true, my nose healed but the urgency to find a cure for Freidriech's Ataxia remains. There are times that I do so desperately wish I could press the fast forward button and skip the pain this disability brings but then I would miss the times I want to press pause to inhale the joy...just like the anesthesia.

He chose me.

2011-04-11T11:25:00.019-05:00

First things first. I'm still here. And I still have Friedreich's Ataxia. FA took the back burner these past few months- and I LOVED every minute of it. This past weekend, it got sick of being ignored and made its presence known. FA is still here. And still very much despised.

I had the honor of directing a play for a local high school. Another thing to scratch off my bucket list. Believe me, I was in over my head from the moment I agreed to the job but as with absolutely everything in my life, God provided over and over. I wish I had the time during the grueling time up to the production, to brag on Him for His faithfulness. He was there. Big time. And it was a blast to be a part of it. I still can't believe He chose me. The students certainly made me proud, I hope I made Him proud.

And yes, whether I like it or not, He chose me for this dumb disability. After a couple of weeks of trying to recover from my obsession with this show, I fell. Hard. In my bathroom. And broke my nose. I think. I heard it crack.

My friend who was waiting for me didn't realize she was waiting to accompany me to the ER that evening. Three hours later and four stitches on the snoz, I was sent home to wait for 5-7 days for the ENT to determine surgery. I think the surgery part is inevitable. Did I mention that I heard it crack?

So instead of my new favorite appetizer plate at New Holland Brewery, we settled for Chinese take out on the way home while picking up my prescriptions and the movie, 127 hours. Which help put my pain in perspective, I might add.

As my friend helped me back in my chair and wiped the blood she said, "I don't know how you do this, Holly."

He chose me. I have to remind myself. That doesn't mean I like it. Or even understand it. I hate it and don't get it. But thankfully what I do love and overwhelmingly comprehend is that He chose me and therefore provides friends who pick me back up and wipe up the blood.

Earlier that day, Mary Jo and I spontaneously found "Terratrikes" in Kentwood that I have been researching and dreaming about when I think about riding a trike. It was a riot. And a complete success of a trip. I found the trike I want. With the smell of Spring in the air, I amready to build my leg muscles. And I can even do that with a broken snoz.

FA is relentless. I found out Saturday night when I slipped and cracked my forehead open. With a broken nose. Seriously?! Thanks to my sister who came over and cleaned the "crime scene" and victim up and spent the night, FA is finding its place again. On the back burner. This chic says, bring it on. I ain't going down with out a fight.

But at least wait until my nose is healed and the lightening bolt on my forehead closes up...

In the meantime, I wait. I wait for a cure for FA.

The swelling to go down.

The black and blue bruising to begin.

And I won't give up.

"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up" Galatians 6:9

not long now...

2011-02-13T18:46:00.008-06:00

I think we made it. The worst part of winter hopefully is over. My friends facebook status' are filled with comments about the snow melting and photos of the sun that was missing the past couple of months. The last few days I ventured out without a coat and just the six layers of clothing. I have even gone without my gloves and my hands did not suffer from hypothermia. I can not wait for the sound of the birds chirping outside my bedroom window. Soon, this dreadful winter will be a thing of the past.
And someday that will be said of this dreaded disease. FA will be a thing of the past. I have to believe it. I can feel it in my bones. Just like the promises of Spring.
Winter is hard. A challenge for the able-body. But for someone like me with FA, it's next to impossible. Parking in snow covered parking lots are a nightmare if you depend on that open space to lower a ramp for a wheelchair. If parking is possible the prayer is that the sidewalk to the door is shoveled. Once you enter the destination, the fear of the door to the van doesn't freeze shut while you're inside. If all of this is accomplished, it is guaranteed that your limbs have froze due to the lack of circulation in a wheelchair. The joys of winter.
I looked forward to a new wheelchair. Once again, winter has won that battle. After getting stuck twice in my new duds, I gave up and plopped in my old chair... until the birds begin to sing.
So, I will wait. Again. Always. I will wait...
This photo was shot before the major snow fell. Me and my chair. And a co-worker attempting to be funny. And Delsie? Just waiting patiently, as always.
I should take lessons from her on waiting. You think I would have this whole waiting thing down pat. I don't. I'm not very good at it.
These long winter months are proof of that...not long now...
Spring and a cure- how cool would that be?!

the new.

2011-01-01T10:22:00.005-06:00

Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here!

2 Corinthians 5:17

Happy New Year. A fresh start. A different beginning. A hopeful perspective. A clean slate. Promises made. Goals set. Looking ahead. A new year.

I have never been one for resolutions. I honestly can not think of one resolution I made for my life. Don't misunderstand me, I am a HUGE proponent of striving for accomplishments. I love when I discover change in my life that only injects a healthy dose of reality. I like new. In fact, I welcome it.

A new coat of paint. A new candle scent. A new book. A new layer of snow. (did I just say that?) A new hair style. A new puppy. A new coat. A new address. A new dollar bill .

A new wheelchair.

Yup, it has been five years. And my insurance affords me the opportunity for a new wheelchair.

Let's be honest. I have mixed emotions.

It will be "fun" to sport the new wheels. I will enjoy the better shock system. The blue color will provide a sense of freshness. I look forward to a "clean" chair. The horn will hopefully be a bit more intimidating than this poor excuse of a sound. I am confident that this change will prompt less visits to Harry, my wheelchair mechanic. And I welcome the change.

A new wheelchair. That means it has been five years.

That's the part that is painful. I have been in a wheelchair for five years. I have lived with FA for over fifteen years. It's ever changing. Both physically and emotionally. And they have been dramatic changes. Physically and emotionally.

It is easy for all the "fun" of the new wheels to be tainted by the irritation of doing life in a wheelchair. Of living with FA.

And this defeats the happiness of the new year. So instead I will focus on the possibilities that this new year brings. I gaze upon this photo that my friend Becky took shortly after the clinical study with Chantix and I smile.

It reminds me that there will be a cure soon. It is a photo that shows me that soon, that wheelchair will be left in the dust, for good.

...the old has gone, the new has come.

Until then, look out for my sporty new chair. It just may come with a fog horn.

intent vs. will...or both

2010-12-10T09:42:00.007-06:00

It seems as soon as the first snowflake falls until the sound of the birds chirping outside my bedroom window, I force myself to breath. The task of inhaling oxygen and exhaling the toxins in my body is daunting. Painful. A reminder that I have been diagnosed with this thing called ataxia. A rare neurological disorder that is debilitating. A disease that will shorten my life. The "is" and "will" of FA. The present and future. The now and then. The intent to breath and the necessity to keep breathing. Therein lies the tension. The intent vs. the will.

It's so tough when I don't feel I have the two. Or even one, for that matter.

The smallest thing happens, like last night, when I am struggling to take Delsie's harness off for the evening and we bump heads. Well, more like the top of her head rams into my nose. That's all it took for me to stop breathing. As I wiped the blood dripping out of my nose, I screamed through my empty house, "I hate my life."

I forgot the intent. My will of selfishness dominated. It was embarrassing, really.

After I stuffed my nose with Kleenex, I turned on my kettle for some hot water for tea. I pout as I pour the hot water all over the counter. The spill burns my hand. My intent to fill my mug with decaf tea instead creates a mess for me to clean and makes it difficult to breath. "Are you kidding me?!"

My pouting turns into wailing. My house is empty with the exception of Delsie and Phoebe staring at me wondering why I am not breathing.

Snow falling. Christmas lights. The most important day of the year. But I can't breathe. My intent and will to live with FA gets blurred with every cute Christmas card of my friends adorable families that comes in the mail. I can't breathe.

Ingrid Michelson is my buddy these days. I play her song over and over. She reminds me to Keep Breathing.

The birds will chirp again outside my bedroom window. I just need to be intentional to wait it out through the snowflakes. So, Delsie, Phoebe and I will wait. Intentional to be faithful in the winter.

Although I miss my monthly visits to FL, I am hopeful that something, something, something is around the corner...all I can do is keep breathing...and wait for spring...

"tootie"

2010-11-18T12:47:00.005-06:00

I didn't know that I wasn't really breathing. Until yesterday when Delsie's vet called with the result from a biopsy. "Holly, it's great news. The growth was benign oil glands." I literally felt my body release all the tension as I exhaled. Who knew a pimple could provide such joy.

Last Monday, Delsie had an "emergency" surgery to remove a growth that developed rapidly by her mouth. She did fine. And Dr. Bader takes such good care of her. Me? I was a wreck. It has been over nine years since Delsie has been by my side. Nine of the fifteen years that I have been living with this dreaded disability.

Anxiously waiting for me to see her after the surgey confirmed the fact that she makes life do-able for me. She helps me breath. Everyday. With FA. I can breath even though I have FA. Thanks to Delsie.

Going out to train with her for three weeks in PA, was one of the hardest things I have done. But by far, one the most rewarding things in my life.

It is true that as she gets older, the gas she omits underneath my desk at work can actually burn my nose hairs. What a minor thing to compared to her "job" that helps me face the challenges of FA.

Every night Delsie jumps on her toddler bed next to my bed. We prepare to sleep for the night as I massage her and sing,
"You are my sunshine,
my only sunshine,
you make me happy,
when skies are grey,
you'll never know, Dels,
how much I love you,
thanks for helping me live,
one more day."

I love you D-dog.

and thanks FA, because of you,
I have her, my pretty girl.

ice=joy

2010-11-05T09:49:00.002-05:00

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."

2010-10-27T17:47:00.006-05:00

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

2010-10-09T20:20:00.010-05:00

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.

2010-10-02T16:01:00.005-05:00

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

2010-09-25T15:02:00.006-05:00

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.

2010-09-02T19:46:00.006-05:00

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.

2010-09-02T17:08:00.001-05:00

Cinderella?

2010-08-24T09:24:00.007-05:00

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.

2010-08-17T19:38:00.003-05:00

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.

depressing = amazing

2010-07-31T10:22:00.007-05:00

Lately, I seem to be fixated on getting older. And I confess that this thought process embodies a huge amount of fear. It certainly didn't help matters this week when I was with a good friend and her daughter at Walgreen's and was asked by the cashier if I was her mom. And she wasn't referring to my friend's 2 yr old daughter either...she was pointing to my 30 year old friend. That, according to my calculations, would mean I gave birth to my friend at age 7.
Depressing. To say the least.
I have reached that point that I am no longer looked upon as a sister with my younger friends or mistaken for being in college. Most of my friends have children who are turning double digits.
Seriously. Depressing.
I am Aunt Holly who looks at my oldest nephew, Alex, with tears in my eyes reflecting on the memory of teaching him to crank his arm in the air while bellowing "whoot, whoot" when he was only 1. He's going to drive next year.
Majorly depressing.
On the way home from the bank this morning, I saw an elderly lady walk out of her home. I almost slammed on my brakes to offer her assistance but quickly realized there wasn't anything I could do. So instead, I selfishly thought about my own life. And the following came out of my mouth as my eyes were fixated on this lady completely hunched over and walking with a cane,
"Oh God, I can't live like this for that long". Fear immediately set in and I thought what life must be like for Doreen. (no idea if that is her name but it fits)
"Please. Please. Don't let me live as long as Doreen". It is clear that she can't lift her head when she walks. Her body is in a L-shape.
But the thing is, Doreen may be perfectly happy. Totally content. Completely at peace. And thoroughly enjoying her life.
And that is what I am striving for. It is true, I may not always live in that moment. But the thing about being a grandma is the fact that I have lived enough life that I can appreciate it.
Having FA is hard. But so is life. And we all live it. It's what I do with it, is what is most important.
I have been asked by my favorite peeps down at USF if I would speak during the symposium in Tampa, FL on August 26 at the energy ball for FA. The doctors who are doing the cutting edge research for FA will be there. And Wings of Mercy has once again, offered to fly me down to Florida.
So all these things that feel depressing are being molded into something that is amazing.
Just like Doreen, I will keep plugging along...

playing hooky.

2010-07-21T08:55:00.011-05:00

I played hooky from work last week. That is what 90 degrees and 99% humidity in Holland, Michigan, will cause. That and a phone call from a friend with a boat. “Do you have to work this afternoon, Holly? We are taking the boat out and would love for you to come.” That’s all she needed to ask. Before I even hung up I was composing an email to the business office inquiring about the number of vacation hours I had left. It wasn’t a hard choice. Spending a sunny afternoon in a small, dark office with no windows or, enjoying the sound of water hitting the bough of the boat as we motor across Lake Michigan with a summer breeze in my hair? Hmmmm…let me think. I did the math and subtracted the four hours from the time I have accumulated for vacation. For such a time as this. Life is short. And I am diving in.

Growing up, I always heard the “older” people in my life tell me that when I get “older” time will go fast. They weren’t kidding. I am “older” now, and it’s flying by. I don’t want to miss it. I refuse to watch it pass me by from the sidelines. I don’t want to be just a spectator. I want to live like Donald Miller’s friend in his book, “A Million Miles In A Thousand Years”, I want to be IN the parade of life and not just watch it from the curb. I am the main character in my story and God is the author, I just need to surrender my will and be obedient to His will.

Although spending a day on the lake is high on my list of favorite things to do, it's not that easy. Without her knowing, she paid me a huge compliment just by her invitation. She told me that she debated whether or not to even ask me. She didn't know how I would be able to get on the boat but then she told me, “You’re Holly, for Pete’s sake!” I have no idea who Pete is but she is right. I am Holly, who uses a wheelchair and a service dog named Delsie, to get around. But a phrase I often repeat is, “If there is a will, there is a way”!

My will to get out of the office was going to make a way for me to get this 107 lb. frame of a body that has no sense of balance or any kind of coordination, off the dock and hoisted over the wall of a 24 foot power boat. Not to mention coercing my 89 lb black lab service dog who despises swimming, mind you, into the watercraft. What black lab doesn’t like water, anyway?

Needless to say, we did it. I was seated on the back bench as we made our way through the channel with hopes of encouraging Delsie to cool off in the water. I could have been in a commercial for the saying, “Life Is Good”. At that moment life was good.

Meanwhile, my friend’s athletic teenage daughter wanted to go wakeboarding. I was thrilled. I had never seen this sport in person. Water skiing, yes, but never witnessed a person securing both feet tightly into boots that were locked into a single board. My ankles hurt just thinking about it. This was going to be impressive. She popped right up on that board and we took off. For 20 minutes she breezed in and out of the wake and all the while maintained balance. She would even get “air” each time she hit the wake. Those jumps were followed by whoops, hollers and applause from her mom and me. She even tried a new trick that required moving the board horizontal to the boat as it pulled her. I am sure there is a name for it. In my book, it's called, amazing. Her athletic ability was stellar. She made this wakeboard thing look simple and for a brief moment after watching her, I thought perhaps I could give it a whirl; it looked easy enough.

I was enthralled watching this teenage girl live life so effortlessly. She was having a blast! I totally wanted to put on a life jacket and dive in the water to slide across the waves on a wakeboard, just like her. As I snapped back into reality, I remembered that walking by myself is not even an option. Seriously, Holly, snap out of it. But this time it was different for me. What normally would have fostered anger and jealousy in my mind became a moment in time of pure delight for me.

She was all smiles as she gracefully pulled herself back in the boat. “Did I get high in those jumps?”
“Yea, you looked awesome!” We were both beaming from ear to ear with excitement. I offered her a high five, “Thanks for doing that. It was so fun to see.”
And the honest thing is, I meant it. Although I wasn't the one doing tricks on the water on a board behind a boat, I dove in. I enjoyed the moment. I was happy that I was inhaling fumes from the motor of a boat rather than hearing the beep of another email alert on my computer at work. I was free. I was making a story.

The following day, I realized I might have gotten into my character a bit too much. In the morning when I attempted to turn on the light switch in the rest room, an intense pain shot through my upper arm. I actually thought, “I'm sore today from wakeboarding.” What the ?!?! I can't even walk, how the hobs did I wake board?! It wasn't until later that day while at work, I reached for something across my desk and felt once again, the tightness in my arms. This time I smirked and shook my head. I may not be able to wake board or walk, for that matter, ever again. But I certainly can be IN the moment. I can feel the waves. I can smell the air. I can touch the water. I can even sensationalize the aftermath of wakeboarding. Some may call these symptoms of a hypochondriac. Or label it Munchausen by Proxy Syndrome-maybe even people think I am a bit wacky. But I am choosing to be IN the parade. I don't want to let it pass me by.

In hopes of playing “hooky” again, I am entering this contest to help me write a better story for my life. For such a time as this.
I don't want to be just the girl with big hair, in a wheelchair and a service dog. I know there is more to my story than being in a 2 X 2 office with no windows. Who better to help me figure that out than one of my favorite authors, Donald Miller?! Life is short and I am diving in. And maybe visiting Portland, Oregon along the way..no swimming, Delsie, I promise.

www.donmilleris.com/conference

Living a Better Story Seminar from All Things Converge Podcast on Vimeo.

signs.

2010-07-14T10:10:00.010-05:00

But me, I'm not giving up.
I'm sticking around to see what God will do.
I'm waiting for God to make things right.
I'm counting on God to listen to me.
Micah 7:7

Five years ago one of my sisters made me a sign when I moved into a new home that says, "never ever, ever, give up!" She hung it above my kitchen sink. And three years ago I moved it to my new home and placed it above the kitchen sink again.

For five years I see this sign. I read the words. And I carry on with my daily routine. Nothing changes in the way I do things because I read this saying. Or so I think.

I go through seasons in my life. Some really good and some really bad. And that sign still hangs above my sink. "Never, ever, ever, give up!"

I am traveling through a season in my life in which I love to read. I think I have four books open right now. I become so engrossed with what I am reading, I confuse the story with reality. I love the warmth of summer, my deck, a beverage and a good book. Pure delight.

In one of the books I am reading, the author quotes a passage from Micah 7:7. And I think of the sign above my kitchen sink. "Never, ever, ever give up!"

Believe me, there are days that I want to. Like the other day when I slipped trying to get a shirt that was hung on the top of my closet and while going down, caught the pocket of my pants on the joystick to my wheelchair which projected it forward wedging me further in the bottom of my closet floor.

"Never, ever, ever give up!"

That doesn't mean I didn't scream and cry. Okay, I wailed. I allowed the tears to fall and my frustration to run its course. I took a deep breath and hoisted myself off the ground.

"Never, ever, ever give up!"

Nothing is really happening. I'm not involved in a new treatment. I'm not flying in a private plane each month. I'm not doing anything.

Or am I?

I'm not giving up. Not ever.

I guess that's something.

Thanks for the sign, Christy.
..."I'm sticking around to see what God will do"...

*disclaimer: this photo has nothing to do with this post. I just like it. Two guys kissing me? Hello!
But seriously, Brad and Brian and their wives are huge cheerleaders in my life. They make me feel as if they are in my corner and they won't let me give up. Never, ever, ever.

inspiring...

2010-06-29T10:07:00.004-05:00

Yesterday a good friend and I were chatting. About me getting a trike.

And then I began dreaming. And haven't stopped.

www.rideataxia.blogspot.com

I am sure that is what Kyle did.

Thanks, Kyle for fighting for a cure for FA.

And riding a cool trike, too.

Maybe someday we can meet halfway...

the wait and see game.

2010-06-24T10:03:00.005-05:00

As each day passes, I am so keenly aware of how my life seems to be all about the wait. And then I'll see.

The wait and see.

You think I'd be a pro at this game. But a game is usually fun. Unless you're like my dad and despise board games. At times, FA can be fun. Almost feels like a game. And although I don't consider myself a competitive person, I want to win this game.

You're going down FA!

I want to play this card. The symposium of FA.
http://www.curefa.org/EnergyBall/
Thursday, August 26
USF
Tampa, FL.

I desire to sit amongst the smart people who are "rolling the dice" as they find a cure for FA. I hope to thank the people who own Park Place and Boardwalk as they sacrifice fiscally for the advancement in research of FA. I am willing to risk the humidity and travel for the sake of getting the "out of jail" card.

Because at times, FA makes me feel like a prisoner in my own body.

So I wait and see...

and pray and HOPE.

questions...

2010-05-20T10:29:00.004-05:00

I'm still able to walk. It's been two months off of Chantix. And thanks to my photographer friend, Becky, she was able to capture this "miracle" through her lens. Truth be known, I didn't know how it would go. The whole walking thing. The photo shoot was a blast. (www.beetreephotography.blogspot.com)
"Becky, don't freak if I fall. I'm use to it."
I didn't! I'm sure Becky was relieved, as was I...and quite happy.
The fact that I am still able to walk with Delsie causes me to ask some questions? Which admittedly, leads to worry and before long I am taking a ride on the slippery slope. I was awake at three in the morning with tears dripping down my cheeks. And eventually sweat seeping out of my pores...at three in the morning.
Did something switch over in my brain during the study? Did the Chantix re-wire things? Will it last? Will it get better? Will it get worse? Is this it? My life- this- is this it? FA. Will they find a cure? Am I doing enough?
Panic starts to set in. So I attempt to take a deep breath and realize this is nothing I can control. I must embrace the journey. Seek the hope. There is always hope in the journey. And these photos remind me of that.
Thanks, Becky. For that gift. I am drinking it in...and hoping for a full night of sleep tonight.
I have been on the supplement for two weeks. I am feeling like talking is easier again. I am not thinking about forming my words. And just maybe the vitamin is protecting my heart, too.
But the supplement is not the only thing that is protecting me with this FA...God totally has my back. Every. Single. Day. 3 AM or 3 PM.

who's keeping score?

2010-05-05T09:51:00.007-05:00

I was in a busy mall with one of my brother-in-laws the other day. It is not often that we hang out. It was eye opening to him.
"I totally feel famous walking with you, Holly."
"Believe me, Robert, they are staring at Delsie not me."

I am okay with this. The stares and comments are not directed at me. Delsie is beautiful. She's intriguing. And certainly something to be in awe of. She takes the pressure off of me emotionally and physically. We have been a team now for nine years. I have been in a wheelchair four of those nine years. I know the questions and comments and can even predict the passer-by who is going to gawk. It is typical for kids to stop and watch and say, "COOL, DOG!"

That is, until this morning. A boy about 9 yrs old was getting off the elevator as I was waiting to get on. Once he stepped out into the hallway and I moved forward, I could feel him staring. "Here we go," I thought, preparing for the typical questions. As Delsie and I turned to push the button of the floor we needed, the boy was stopped and staring wide-eyed at us. I tried to brake his stare with a "Hi." His stare broke as we made eye-contact. His eyes were wide and his mouth hung open as he exclaimed,"COOL, WHEELCHAIR!!"

This observation warmed my heart and made me laugh. The elevator door shut and I looked down to see if Delsie felt jilted this time. I think she's okay with it.

The score remains: Delsie: 7,678 Wheelchair: 1

the "laugh" wall.

2010-04-29T17:20:00.006-05:00

I'm dying. I know, we all are, sooner or later but today, I am feeling the urgency of the "sooner." That's the part of Friedreich's Ataxia that I don't think about. Or simply put, I don't allow myself to think about. But the reality is, this diagnosis is suppose to shorten my life. Research states that my heart may give out or I'll develop diabetes that will eventually wear me out. The studies of FA have shown that my vision and my hearing will deteriorate. I'm dying. Plain and simple. And I feel the urgency of this dumb disease that has progressed thus far in my life. I have FA and I'm dying.
Perhaps this thought process was triggered by the Hearst parked in the parking lot of my place of employment this morning. The back end was open and curiosity got the best of me. I quickly perused the parking lot to see if anyone would notice me making my way to sneak a better peak. It was empty. But my mind immediately transported me to thoughts of my own coffin being hoisted into the open "station wagon." I think it was all down hill from there. By the time I reached my office and turned on the computer, my funeral was planned and I envisioned the songs that would be sung and friends who would attend. Morbid, I know. But true.
Reality is I have FA and I'm dying.
It has been studied and approved that a specific supplement would be highly effective in treating the symptoms that come with FA. I have known this for several months but was instructed not to take it until the study with Chantix was over. I have left no stone unturned as I made attempts to find the cheapest way to afford this supplement. A med that will not only protect my heart but has proved to improve speech and coordination of those with FA. FA that is killing me.
My efforts feel in vain as the urgency of this disease seeped into every fiber of my being today. I bit the bullet and ordered 6 bottles of this supplement that will only last me 6 weeks for $200. As I clicked the mouse to submit the order for a vitamin that may help me talk better or aid my ticker to tick, I realized how irritating FA really is. I didn't have the option to buy designer jeans with that money. A choice that has been taken from me yet again.
I have no control over FA. But what I can control is what I am going to do to fight against the death grip it may have on me and so many others with this diagnosis. It's not going to suffocate me. I won't let it. I know it's big. So much bigger than me but so is God. FA is nothing to Him. I have to believe that. It helps the urgency of days like today. Knowing full well that I am dying.
We all are.
FA or not.
Last night, a friend helped me finish hanging photos on my "laugh" wall. As I type this, the faces of friends and family are reminding me it's going to be okay. Death is a reality and a treatment or cure for FA will soon be one, too. And I'll spend time making a point to laugh along the way.
Enjoying my life in death.

Another...

2010-04-17T20:39:00.005-05:00

Another clinical study. Another whirlwind experience. Thursday, my friend and I embarked on a road trip to Ohio State University in Columbus, Ohio. A six hour trip that turned into eleven hours as the Goodwills on the way screamed our names.
I knew what was going to be involved in the test. I was uncertain how I would react. Simply said, I am glad that I have a year to forget about it. OSU was impressive and those involved on this particular study were great. This is a clinical study that examine the heart of those effected with Freidriech's Ataxia. And that would be me. Ignorance is sometimes bliss. And that statement applies in this situation.
A team of researchers/nurses/doctors and technicians "worked" on me for 3 hours. I began the test by adorning the infamous hospital gown, performed the studies neurological tests, met the cardiologists and poked for two IV's that came out of the same arm. I was wheeled back to the MRI room and another team introduced themselves and quickly became captivated with Delsie.
After I was completely strapped down on a narrow stretcher, I panicked as my nose started to itch. The table slowly moved me in a tube up to my ankles. If I just lifted my head from the table, my nose problem would be solved as it would be squished. I then panicked feeling that I had to sneeze. And then my shoulder started to itch. Another hour in this MRI- I thought I would have to squeeze the emergency ball they placed in my hand to pull me out. The contraption across my chest didn't help along with the instructions to hold my breath and then relax. RELAX?!
It was at that point that I started envisioning myself laying in an open meadow. This was a mental challenge more than anything else. A nurse came out to holler down the tube that medicine was going to flow to make my heart race. For four minutes. In a tight tube. I started to pray for my friend who is waiting for a heart transplant. This was a cinch compared to what he is going through.
I couldn't have been more relieved when I heard the nurse tell me they were done. Once again, Delsie was a trooper.
And more Goodwills on the way home.
So, this visit is done for this year. I will endure the same thing once a year for the next five years. Over that time, my heart will be studied and compared to other FA patients. And I wait. And hope. That some day there will be a cure.

Memories

2010-04-12T19:37:00.005-05:00

Before this journey becomes a thing of the past, I scroll through the photos and remember. Or laugh. And in this video, I am doing just that. The plane is very "bumpy" because we are preparing for the flight home from FL to MI for my last visit to USF last month.
I need to remind you that this is one of my sisters who is petrified of flying in a small plane. When we were on the tarmac anticipating the take off, there was a flapping sound on the exterior of the plane that freaked her out. FREAKED OUT. She wanted me to tap the pilot and draw his attention to the noise. (that is what she is saying, "get Matt"! Followed by her pointing.) I was laughing so hard, I almost wet my pants. Her eyes and labor breathing say it all.
And watching this video, makes me laugh.
Here's to memories.
Last week was my last official phone call with USF. In the conversation, I reported that I felt like I was still doing well. I was thrilled to say that I haven't fallen since being on Chantix. Jokingly, I said that since I said that, I would fall.
And I did.
The next morning getting out of bed.
Nice.
My focus now is getting on a supplement that will protect my heart.
And I continue to be hopeful that this fight to find a cure for FA is not over.
There is always hope.
Even with a flapping noise on a tarmac.

a little set back.

2010-04-06T11:24:00.006-05:00

I'm still here. I'm not giving up. It's not done. This fight. This stupid FA. I know I have this thing. These past two weeks don't let me forget it, either. What would be a minor "hiccup" for someone becomes something major for a person with FA. And unfortunately, that's me.
I have had Delsie (my service dog) for 9 years and she has never been treated to an ambulance ride. That all changed two weeks ago, Monday. Without boring you with the unnecessary details; we were in and out of the hospital a couple of times as they discovered a cyst on my ovary that apparently became twisted. People. I pride myself on my high tolerance to pain but this was like no other. Delsie was incredible, as usual, and impressed the paramedics and hospital staff with her professionalism. I, on the other hand, was a miserable patient. This photo was snapped without my knowledge from my mother after I was completely comatose from the pain meds...nice. And she becomes my "mother" instead of the enduring name of "mom" in a time such as this- causing a slight chuckle when I become aware of a flash in the ER room.
Thanks to a "mom", who never left my side, I have returned to society. Although my trips to FL and USF are over for now. I am hopeful that this journey to find a treatment or cure for FA is only just beginning.
If you have been following, you may remember I have agreed to a study for FA patients on their heart at Ohio State University. That test is next week. Time flies and life continues and so does the hope for finding a cure for FA.
I am completely off Chantix for two months now. I am having more trouble talking again. And I cried me a river yesterday. Oh wait, can't blame that on the Chantix just my pity party that happens every now and then...

"it's her turn now."

2010-03-21T10:11:00.008-05:00

In a time like this, it seems better to ask for forgiveness rather than permission. This is a video I shot on our landing in Tampa. Brecken asked if landing was scary. Listen close to my sister's comforting reply, "yea." This traveling thing is not my sister's gig. She often jokes that she doesn't leave Zeeland. And it's not a joke. She doesn't. So, I commend them for doing it. They were scared beyond belief. You will notice Christy's barf bag in position. If only we were so lucky about 10 minutes prior to this video. Although Brecken enjoyed the treats we packed for the trip, her nerves did not. And the treat bag quickly became the barf bag along with Delsie's back. And all I could do was laugh and gag a little...poor Breck.

the end to the beginning.

2010-03-20T19:44:00.005-05:00

My last visit for this clinical study was last Monday. My sister, Christy and her daughter, Brecken conquered their fear and joined me on this trip. So many memories were made and A LOT of laughter. But the question remains: now what? I am confident that this is only the beginning. A hope to find a treatment or cure has just begun. I have a peace about it. I trust Dr. Z and her team completely. I don't have the answer to what happens next because I don't know. And I am okay with that. I really am. But not knowing doesn't not equate apathy for me. I hate FA. Hate it. Especially these past couple of weeks of going backward physically. A blatant reminder that Chantix was aiding me in this fight with FA. I am aware now of how much this dumb disease has taken from me. I know I am different. We all are. But I am learning what it means to embrace the journey. In a bizarre way noticing that this difference can be a blessing. Not that I would ask for this but that I will use it. For Him and for others diagnosed with FA, for Dr. Z and the other researchers who are dedicating their time to find a treatment or cure for FA. So, yeah, I could ask for a prescription for Chantix and be done with it. But it is far from over. This is so much bigger than me. I look forward to making more memories and laughing A LOT more. I am sure there will be tears, anger, doubt and certainly questions but it's just the beginning.

2010-03-20T19:39:00.001-05:00

barf bag, anyone?

2010-03-12T10:27:00.003-06:00

September I embarked on a journey. A journey that was full of unknowns. Like the journey I have been on with FA. Full of unknowns. I have learned to embrace these. Sometimes with complete fear and at other times, with confidence. Strength that only comes from Him. So, being a part of this clinical study has been incredible.
I have been off Chantix for the past month. This morning was the first time I noticed the struggle of FA. I freaked a little bit as I almost fell.
Sunday I travel down to FL for my final visit. I am praying that I don't feel the finality. Hopeful that this is only the beginning. But it's unknown. The next step. The only thing I do know is that I'm not giving it up. Looking forward to my visit to USF and seeing Dr. Z and somewhat anxious for what's ahead. Probably not as anxious as my sister who is joining me on this trip. When I asked each of my sisters to join me on a trip she replied, "I don't know if I can do it, Howard. I almost barfed when I saw your photos of the plane." She can do it. God is always there in the unknowns. In FA and small planes.

on the horizon.

2010-03-09T08:34:00.006-06:00

My mood has totally changed. I don't think it was the Chantix that made me depressed. It is the lack of sun in West Michigan. I am a therapist and have taken the liberty of diagnosing myself with SAD. Seasonal Affective Disorder.
I am completely enjoying the sun. My curtains are wide open. The sounds of birds chirping wake me up. The piles of snow melting. I think we made it!! Spring is almost here!
I can not wait for the day that this season of finding a treatment or cure for FA is over. I have been in the winter season of FA far too long. I can remember when the journey began and I was in my sisters house walking with a glass of ice water. The family was all there. I walked from the kitchen to the family room and stumbled a little; the water went flying and the tears began. I think I screamed that time. I was scared of what was ahead. We all were. My mom just held me and my sister, Christy, cried while Lo filled my cup with water. Cherie, stood there with a hand to offer me up off the ground. The awful season.
But it's a new day and the sun is shining. Spring is almost here. And just like this sunrise on my deck a few years ago, the treatment for FA or even a cure is in the horizon!
And in the meantime, God has blessed me with an amazing family and awesome friends to travel through the seasons.

the waiting room

2010-03-05T09:00:00.006-06:00

This is an "after the action" shot. As I was waiting for my blood to be drawn at the lab last visit, I had to wait outside of the waiting room. It was packed as only two of the technicians decided to show up to work that day. I wasn't annoyed by that. I actually felt bad for them- totally out of their control. What irritated me was this man who stopped an inch away from me and Delsie and proceeded to talk to D. The whole waiting room was quiet and people were bored as they were waiting for their name to be called. So when this man started a rather loud one-sided conversation with Delsie, I knew I had to take advantage of this "teachable" moment...I had a captive crowd.
As this man made an advance toward petting Delsie, I tightened her leash toward me and said, "I'm sorry, sir, please just ignore her. She is working and can not be distracted." The entire waiting room heard me. I wasn't bashful in my response. And he wasn't bashful in his response either. He bent down to pet Delsie as he probably thought her wagging tail was an invitation. His back was to the on lookers and I noticed some were shaking their head in disbelief. I felt pressure now that I had to follow through with my original lesson. "Sir, please don't." I tugged Delsie toward me and commanded her to look at me. He stopped only because he finished telling me about how he used to have a black lab that lived to be 15 years old. By this point, I was bothered and felt bad for Delsie. My friend was in the waiting room chuckling as she tried to get the exchange on camera. Thus, the after shot.
I am very similar to this man. Although I am not distracting faithful service dogs, I must be annoying God with my ignorance to His faithfulness. I have one last clinic next Monday. No plans of a flight down there as of yet. I'm starting to panic and forget that He is faithful if I just be still and listen. Something this man wasn't very good at and something I am struggling with as well. I am not letting God do His work. Instead, I am distracting my thoughts with the negative ones and wanting my plan. You think I would have understood this by now. I have lived with FA half of my life. ( my stomach just dropped when I wrote that) I can just picture those in heavens waiting room, shaking their heads and thinking, "she doesn't get it". And I don't. Not at all. The lump in my throat is a good indication that I am sick of it. All of it.
But I must wait. Just like that day in the lab waiting room. I just hope I don't fall asleep and miss it.

POP!

2010-02-28T11:09:00.002-06:00

If you fly with me, you will see me strike this pose often. Anything to get my ears unplugged. After I land, I tend to adapt to one ear open and the other totally clogged. I forget about this nuisance until a couple of days being on land and I yawn. Suddenly the plugged ear opens and I hear life on the loud decibel.
It has been about week off the drug and I am very aware of how nauseous I was while taking it. The bizarre dreams have stopped as well. I adjusted during the time I took the drug and now being off, I notice. I spoke at a women's conference yesterday and did not have to struggle to get the words out. I don't think I slurred. It felt good. Little things that I lived with and now I am aware of...slight improvements. So I can completely handle looking like a freak flying and almost puking cuz it's for a good cause.

#2's and wrappers

2010-02-23T21:02:00.004-06:00

We were well into the leg of our journey on our trip home from Florida last week when my friend began pointing at my neck. "You have something in your hair, Holly." Immediately I regressed back to my high school days and remembered the times that my "so called" friends would sit behind me in class and see how many #2 pencils they could hide in my afro. It wouldn't be until I laid my head on my pillow for the night did I discover them. I would laugh and shake my head, knowing this game was providing entertainment for a rather boring Civic class. Quite frankly, I was happy to be of service. This kit kat wrapper had wedged itself into a lock of curl on my head and as I attempted to dislodge it from the bomb of frizz (no small task, especially with FA!) I thought back to when I ate the candy bar 3 hours earlier! It was there that long.
Yesterday was my last day to stop the drug Chantix. I have to admit I am rather leary of what that will mean. Although it is nice to not endure the nausea and bizarre dreams, I am scared for the future of finding a treatment or cure for FA. I am fighting internally with my thoughts of finality.
But just like back in high school, I need to trust that He has some #2 pencils tucked away. And just like the wrapper from my favorite candy bar, His plan of a treatment or cure of FA is adhering itself to the right people and both will be displayed at the right time!
The ride may be long and the "game" may not be quite so entertaining like 6th hour Civic class but we will get there with His grace.
I believe it. I have to.
and so thankful I can be of service...

basking

2010-02-18T19:01:00.008-06:00

My pastor always ends his sermons by quoting Ephesians 3:20-21 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at within us, to him be glory in the church in Christ Jesus throughout all generation, for ever and ever! Amen!"
Gulp. Reading these words and thinking about these past seven months, I would never imagined my life at this point. But that's just it- I can't imagine, God totally can. As this study is nearing the end, I was fretting over the completion and panicking that this would be all in vain. I feared that my passion in finding a treatment or cure for this stupid disease would wain and my life would go back to "ho-hum". But God is the one to make it happen, I am along for the ride. For three days, I was letting Him know my concern and basically questioning his plan. No answer. That is until the phone rang from Ohio University. They are doing a 5 year clinical study on the heart and FA patients and asked me if I would be willing to be a part of it!
Listening to the details, I was a bit speechless but agreed to be a participant. My first visit will be in April. The words MRI, IV contrast and 4 minute racing of the heart were thrown around. In my mind, all I could think of was "wow, God, you do more than I ask..."
Admittedly, I have been freaked out with the news about my heart as I discovered from Dr. Z the urgency in protecting it from the damage in the progression of FA. But according to His power He gets it. Why can't I and trust His plan is amazing and far greater than I could ask for?.
Mom and dad, if you're not keeping up with my blog, a stranger in cyberspace may know this before you, I realize that. I've been trying to process it all and attempt to keep up with God! It's always better when I do. I'll just sit back and soak up the "son".

2010-02-17T13:53:00.002-06:00

while I'm waiting...

2010-02-11T10:31:00.005-06:00

This is the view from my family room window. Delsie and I are going nuts. Honestly, Delsie seems content, it's me- I'm trying to be patient. For what? The hope of waking up to the sound of birds chirping and the smell of fresh cut grass. I can't wait. Fresh air. Neighbors. Beams of sun. Reading a book outside. Breathing. Feeling my toes again. Taking a shower to cool off. Sprinklers. Flowers. Bare feet. This, too, shall pass. My mantra.
Patience. Am I peaceful in the waiting?
I am scheduled to speak at a women's conference entitled, "In the Spirit of Peace" at the end of this month. Pressures on and time is ticking away. My prayers begin with a plea for God's direction and then end with ways He could provide hope for me. Me, me, me....wahhhhhh.
Wow- selfish. But He is so patient. Just waiting for me to get it.
I have a LONG ways to go but I do know having FA has forced me to be patient in areas I know I would have taken for granted in the past. I live life in slow-mo compared to the "norm" and yet, this way of doing life is normal for me.
I am not sure where this study will bring me or the hope of finding a treatment or cure for FA. The fight is not over. In some ways, it has just begun. There are days that life seems to be in slow-mo. Freezing. Grey. Numb. Drab. Boring. Winter.
But there is hope. Spring is around the corner. A treatment or cure for FA is rounding the bend too. I can't give up. So I prepare for my next visit to FL this weekend. After that, I taper off the drug. I am dreading it but I must be patient.
He always is.
and He will help me find the peace in PAtiEnCE.

attitude of gratitude

2010-02-06T11:04:00.007-06:00

People come and go in our lives. For some, that is okay. And others, we miss. These three people entered my life and more importantly, have a place in my heart. Every month I look forward to seeing them. I enjoy hearing about their lives. Each time I learn something new about them as people. I like them.They are passionate about their job. Committed to find a cure for this Ataxia thing. I am still working through my disappointment that they didn't include me in the memo about wearing black and white last month. This is a photo of my team at USF for the clinical study during my fifth visit. (from left to right) Kelly, Dr. Z and Laurie. I can call them friends now.
Another "blessing" during this dreadful disease. A little nugget of gratitude that God gave me in this journey. Gifts, like friendships, are all around. I just have to choose to look at them. At times, it seems so much easier to go down the slippery slope and focus on the bad. But in the end, that causes more harm than good.
On my last visit, Dr. Z ran into the room where I was being tested and gave me a big 'ole hug. She has an ability to make me feel cool that I have FA when she goes though the neurological tests and we chatted like I was her only patient. After Dr. Z left, I said to Laurie, "Wow. She spent a lot of time just talking to me!"
Without hesitation, she replied, "Well, she likes you a lot."
The feeling is mutual. She's not just my doc, she's my friend.
Despite the fact I wasn't included in the memo.

no place like home

2010-02-04T22:20:00.007-06:00

USF. I never knew this place existed seven months ago and now it's a part of me. A big part of me. A huge chapter in my story.
Kind of like Freidriech's Ataxia. I had no idea this disease existed until my diagnosis at age 20. And now, I wouldn't know life with out it. Mind boggling.
Having a disability has taught me to live in the moment. I haven't always succeeded at it. Especially these past couple of weeks as I am anticipating "the end."
The end of this study. The end of private planes. The end of memories made with family and friends. The end of improving physically. Worse yet, the end of the hope of finding a cure or a treatment for FA?!
"Thanks for participating in the study, Holly. Good luck in the future."
Then USF, Dr. Z and this clinical study escapes my life as quickly as it invaded it?
Chapter done. Book closed.
The thought sends chills down my spine and my heart drops to the floor with disappointment. I am scared this book will just sit on the shelf and collect dust.
This month is my 2nd to the last visit to USF. I am in a rhythm of taking Chantix that is common ground. So common that I can even forget to take the pill. I am losing sight of the big picture. Collecting dust.
I need to regroup and "keep my eye on the prize", as they say. I have no idea what that looks like. But that is when I need to remember that I had no idea what this study would look like and now it feels like home.
God is writing my next chapter. The book isn't closed. I just have to be obedient and turn the page.
There was hope...there is hope.
And it feels like home.

bittersweet

2010-01-27T20:26:00.006-06:00

I am surrounded by things that don't make sense. Life hurts. Many, many things that I can't wrap my mind around. Tears that fall and no one to catch them. Questions that are asked and shoulders are shrugged. Prayers that are made and just silence is heard. That's life. And in a bizarre way, I think that's what makes it so bittersweet.
I have been told a lot that I am going to have a lot to talk to God about when I see Jesus face to face. I just shake my head and smile, "I don't think it will matter." I won't feel the bitter. It will be sweet.
But now I live with the bittersweet of Friedreich's Ataxia. And this visit I heard some sweet news. I hope D. Z doesn't read this blog. This neurological thing is beyond me so I will attempt to describe how I understand it. FA is a progressive disease. It moves from the spine into then into the cerebellum. Although I detest the progression, I am thankful for the timing of it all. Through this study, it has been determined that Chantix is proving to be beneficial for those in a certain window. If I would have been "new" with FA, I probably wouldn't have noticed a change while taking the drug. If I had progressed with the FA, I more than likely would have been too late to feel any benefits. I am in the window! I am responding to Chantix.
This study is way beyond my intelligence to wrap my mind around but my tears are caught and the prayers are heard.
A reminder that it's all in His timing. The window. How sweet it is.

got my back.

2010-01-23T13:39:00.003-06:00

It always takes me awhile to process the trip. It's a whirlwind. Hard to believe I actually can say I've been to Florida this week. When we landed in Tampa flight attendants and workers at the car rental would communicate politeness as they stated, "Have a great vacation." Little did they know they would see us the next day. And they did and recognized me- I'm just a tad bit noticeable.

As the study is coming to an end, Dr. Z is thinking about the future. My efforts to encourage her to say that I had to relocate to FL didn't happen. Bummer. She did say that she wants to flush the medication out of my system again at the end of March. Bummer. At this time she will begin a medication to protect my heart. I was disappointed thinking of how awful I felt when that happened before. It took me a minute to actually hear the words, "protect my heart." She was mixing me up with someone else. I pride myself that my heart has not been effected from this dumb disability. Pride. Gets me every time. It is inevitable that my heart will be effected by FA. Bummer.

Once again, I am so grateful that I am part of this study. Without Dr. Z, I wouldn't know to take the necessary steps to protect my heart. Yea, there are bummers along the way. But God has my back and He is protecting me. All of me.

2010-01-22T12:04:00.001-06:00

Florida or bust.

2010-01-19T20:00:00.003-06:00

On days like these that appear so bleak-grey, dark and cold, I have to remind myself that there is green grass under that white stuff.Or brown grass if it's my backyard. The winter blues have set in. It's official. I would love to transform into a bear and hibernate under my electric blanket for the winter. Wake me up when these drab, winter months are over.
Everything is more of a challenge with my disability during the winter. So tomorrow, not only am I looking forward to blue skies and a little vitamin D, I am anxious to connect with Dr. Z.
On my visits, I am encouraged. I don't feel like a fish out of water. This clinical study has provided me with purpose. I feel like I matter. I must persevere. Not just for me but for others who hopefully won't have to deal with the effects of FA.
A friend from high school sent me an email today. His words wouldn't escape my mind. He said it so well: ..."I realize too that so much of life is our reactions to the unpredictable - because almost all of life is exactly that - unpredictable."
Unpredictable.
FA is certainly that.
That is why I am making my 5th visit to the clinic tomorrow. It's where I belong. And we all want to belong. In the white stuff, green or brown grass. And did I mention the sun?

...as the pages turn

2010-01-11T20:02:00.002-06:00

It has been 6 months since this journey began. I visited the clinic 4 times and have 3 more to make. In the beginning, everything was new and the support was overwhelming. I had no idea where this was going to take me. I still don't. And I think that's okay.
I am committed. This disability has taught me to persevere. To wait. For clear skies. I am continually challenged with my patience. Being faithful in trusting that the wait will be worth it. In this life AND eternity.
This month was no different as I prepare for my 5th clinic. After many emails back and forth with Wings of Mercy, a secured flight is not available. My oldest sister, Cherie, has done her magic again and found a commercial flight leaving out of Chicago next week. It will be a whirlwind doing the airport thing but I am committed. Just as much as the 1st visit.
I have been asking everyone if my speech sounds clearer. It is a riot seeing and hearing people's reaction. Talking is much easier for me. That's a bonus. And this past week I should have fallen at least four times. I didn't. I was able to catch myself. Major bonus.
So I keep lookin' up. For the clear skies and even the storms.

one step for mankind..

2010-01-08T15:49:00.004-06:00

It's kicking in! This past week I noticed improvements. I forgot what it was to WANT to walk. The past couple of days, when I walked (with D on one arm and a friend on the other) I had the ability to carry on a conversation. Something that was impossible to do before this drug. Every ounce of effort and energy I had was directed toward concentration for my next step. If any of you have assisted me with walking, you are well aware of how unpredictable my gait was. If you were brave enough to help me, I pulled and yanked while creating a challenge for the "abled" bodied person to maintain balance. As I was leaving a gathering last night with a friend that has known me from kindergarten, we both marveled at my stability and the ability to talk while we walked! Cool stuff! Slight improvements! Probably not even noticeable to a stranger but gains none the less! Now if I can call the plans to fly down for my January visit a success, I'd breathe a bit easier. Still haven't heard anything from Wings of Mercy. The window for me to be at clinic is the 14th, 19th or 21st. Trusting He sees the bigger picture and the knows exact details needed to make that happen...waiting. Not only for the Florida sun but the big 'ole hug I am going to give to Dr. Z.

in His time...

2010-01-05T10:59:00.004-06:00

It's not often that I look back on life and think of what could have been. As soon as I do that I am on what I call the slippery slope. The "what if's" consume me. I believe the lies. And I ask "why me?' The slippery slope. It's ugly. So dark, so depressing, so hopeless.
This journey has been just that. A journey. Full of questions, tears, anger. The losses were overwhelming.
When I was diagnosed with this weird thing called ataxia, I would never imagined that I would be disabled. I didn't think that my life would be done in a wheelchair. I didn't see myself as single in my 30's and no children to call my own. I certainly did not have high hopes to drive a mini van.
My dreams were a bit different. I am suppose to be living in Tennessee with my adoring husband. And after a career in teaching, I would stay home with our loving twins. A boy and a girl: Jade and Jake. My vehicle would be a JEEP to transport the kids. I'd be active in our church . Life was going to be good.
But life IS good. No, it certainly isn't what I thought it would be. But I am finally at a place when I can say that is okay. It hurts at times. Shoot, it really stings sometimes. But those are the times that I take a little ride on the slippery slope and focus on MY desires, not His.
Today the slippery slope is tempting. I am choosing to ride the tide of prayer. And acknowledge His grace, His provision, His plan.
In my plan, I never dreamt that I would obtain my masters in counseling. That was His plan. And he provided Delsie just in the right time to walk across that stage and receive my diploma. I need little reminders, like these, that He will take care of me.
Yesterday I found out that the pilot originally scheduled for my trip in January is not able to fly me to clinic. The "window" for my study at clinic is the 14th, 19th or 21st. So, I pray, trust and wait...for His plan, not mine.

staying the course...

2010-01-02T10:53:00.004-06:00

On Thanksgiving I was able to walk on my own with Delsie. I felt great. On Christmas I was back to being severely ataxic. I felt exhaustion. I was off the pill for three weeks. We don't know if it was placebo or Chantix. We will never know.
The second half of the study began and I have been on Chantix for three weeks. It requires increasing the dosage slowly. The past couple of days I have noticed that it is easier to talk. I don't feel back to where I was with balance before going off medication. The bizarre dreams are returning. And today is the first day I feel nauseous.
Today, the start of 2010, I will remind myself of our favorite saying a friend started, SLOW AND STEADY WINS THE RACE.
In everything. Ataxia, relationships...and in the new year!

Happy Birthday, Delsie

2009-12-22T15:53:00.005-06:00

Pretty Girl. D-Dog. Toots. Tootie. Delsiemeister.

9 years ago this beautiful, black lab came into my life. And changed it. For the better. Forever. I wouldn't even be involved in this study if it weren't for her. She is my Christ with fur on.

Today is her 11th birthday.

Every night when she hops onto her toddler bed for the night, I sing to her. "You are My Sunshine". And she is. Happy Birthday, Delsie.

I love you further than to the moon and back.

My best friend, Tiffany, wrote this essay for a contest describing her excellence as a service dog. It honors Delsie so well and worth sharing:

Blue skies. It's what I think of when I see her face. I have this photo of her standing on the Santa Monica Pier looking out into the blue horizon (or at least looking at a seagull perched on a pole- what do I know?) Her black shiny fur glistening in the sun, her long pink tongue peeking through a strong set of white canine teeth. She is panting from the heat but is utterly content with her mom by her side. Her mom is holding onto the leather harness, that is strapped to her lean and muscular back, steadying herself for the picture. Funny. They are both smiling. Who says a dog can't smile? And who would have thought a dog, this dog, had the power to heal, to change a life? This life. Her life.
The day Delsie came into Holly's life she rolled back the dark clouds of Friedrich's Ataxia. Friedrich's Ataxia is a degenerative disease that disables fluidity of movement, balance and muscle control. The ability to walk becomes a major undertaking. Simple daily routines require effort beyond belief. But not beyond Delsie's belief nor beyond her scope of support.

Delsie is trained to provide support and balance for Holly. The excellence she displays in patience and loyalty alone surpasses anything a human could provide. She is trained in many daily life skills to help Holly face each day with courage and independence; opening and closing doors, pushing elevator buttons, retrieving household items like the phone, a dropped pen or cup, a book across the room and the list goes on. She even knows how to pull clothes out of the dryer and how to go stealth in restaurants and movie theaters (you should see the way people jump when she comes out from under a table or when she makes her way out of a theater isle!) She is trained to help Holly stand if she happens to fall. And one of her specialties is knowing how to lick away tears of frustration and sadness after bad days and long nights. For the last eight years Delsie has served faithfully with nothing but love and devotion. While all these things are amazing accomplishments for a canine partner, I have to confess, it's the deeper level of her support that blows me away.
We enter this life with hopes and dreams. When we are young the world and all it's glory is at our fingertips. We anxiously plunge toward independence never once imagining the very freedom we live and breath can be taken away in just a moment, a dark moment, in time. But it's amazing how in Holly's life what was taken has been handed back with the help of an amazing dog. This amazing dog. Delsie. The hope and independence, the courage and the comfort, the companionship and peace that comes from this four legged friend makes Holly's independent life beautifully possible.
Blue skies. That's what I think of... when I see her face.

committed.

2009-12-20T19:35:00.004-06:00

The dreams are back. I'm on the real deal. I finally made it down to clinic for my December visit and it was well worth the wait. My sister, Lo, and her oldest son joined me this time. The jet that took us through Wings of Mercy was unbelievable.
I stood on my own again for over a minute and walked down the hallway. When I crossed over the finish line I asked for my time. "Holly, you walked and now you're concerned with how long it took you?!" Maintain perspective and dream big! Just gotta figure out the balance with the two.
We joined a few doctors on the elevator to the clinic. One of the doctors said, "you're back already?" It took me by surprise as I didn't recognize him. "Let me guess" I replied sheepishly, "you were in the hallway when I bawled?"
"We all did", he said.
And that is one of the many reasons I am so glad I am part of this study.
I'm not a number. I'm a person. Someone who has FA. Hoping to find a cure.
They are committed to me and a cure.
I am on Chantix now. For the next four months.

2009-12-20T11:55:00.001-06:00

almost out of letters

2009-12-11T10:36:00.009-06:00

Still planning. Flights postponed. Schedules rearranged. Again. I'm having an "I can't do this anymore" moment. Tears are flowing and my patience is running thin. I copied part of a devotional down the other day from James McDonald. When I read it, the words practically jumped off the page...

"God did not cause the horrible events in your life, but you need to embrace the fact that He allowed them. God could not make a world in which we are free and at the same time guarantee that everyone would choose Him. So the world is broken and bad things happen. But God promises that He will be with those who love Him. He will bring us through the fire, and we will come forth as gold."
Don't misunderstand me. Running into hiccups with flights down to Florida for this clinic would not be classified as horrible. I get that. Hopefully I can keep perspective. But, at times such as these, I feel like having FA is horrible. And I am sick of it. So weary.

I am purging today. My selfishness. It's selfish, I know. The "why me?!" moment. This, too, shall pass. I know that. Even if I have to hitch hike.

plan ?...

2009-12-09T10:14:00.003-06:00

I think I am working with plan "L" now. Plan B was a week ago. But God is still working. Disappointments and all. I am suppose to be on my way to clinic. To begin the drug of Chantix. Instead, I am hunkering down in the blizzard of 2009. The pilot has kindly offered to fly me Sunday and as usual USF, was more than accommodating to see me Monday.
"I'm Leaving on a Jet Plane"...soon. Just not today.
It's a snow day.

falls.

2009-12-06T09:15:00.007-06:00

I am not sure why I use to take photos after a fall. I have a lot of them. I fell quite a bit. There was a time that the staff at the ER knew me by name and loved it when Delsie would visit. There were a lot of ER visits. Staples, X-rays, broken bones, bruising...it comes with the territory. It accompanies the diagnosis of FA. I hate it. But at the same time, I marvel at the resilience of my body. I always seem to bounce back. My body does at least. Kind of. The progression of this disability has been so gradual. The subtle loss of things is tormenting.
I had forgotten what it feels like to feel stable. Stable enough to get out of bed without falling. The balance to transfer in the bathroom without crashing on the bathroom tile. The ability to not have to think about the placement of my feet or the formation of words are foreign to me. Life was exhausting. I felt like I would be a "shut-in" in my 30's.
How quickly we adapt to things. After I fell in the bathroom yesterday, I was acutely aware of how my body was improving, slowly yet gradual. The war wound from yesterdays fall was minimal. It won't be noticed by those who pass. But I cried. I always do after a fall. Except the wailing was different. Normally my screams are motivated by utter despair, anger and a feeling of hopelessness. Followed by a towel to wipe off the blood or ice pack to soothe the broken bones. The fall yesterday came with screams and plenty of tears. But this time, my crying was filled with hope. And the only desperation I felt was the urgency to get back on the drug. There is hope. I can feel it. Physically and emotionally.

never fails.

2009-12-02T21:18:00.008-06:00

My sister is excellent at finding the deals when it comes to cheap flights. After receiving my email plea for help, she came to the rescue. As well as the flexibility of my other sister who is scheduled to join me this trip. And the support of my parents forking over their credit card for a "loan" for a commercial flight. It is obvious that God has opened to many doors for me to be involved in this study-I'm not quitting. So through the support of my family and friends ONCE AGAIN and a little more planning, plan B has formulated.
In the past I would have lost a little sleep over this- who am I kidding?- I normally would have been up all night but my fight to sleep was credited to Phoebe, my kitten and not the lack of transportation to clinic next week. Instead, I had a calmness about it and was confident God would provide.
And He did.
He always does.
Just like He did when my 5 year old niece started asking God that her Aunt Holly could walk again.
I sent my family an elated email after my third trip to the clinic in which I walked 50 feet and stood on my own for over a minute. I attempted to describe the feeling and was in awe of the miracle that took place. My sister read the email out loud as my niece listened.
Without hesitation my niece replied, "Our prayers work, mom."
They sure are.
They always do.
Even in plan "B".

gulp.

2009-12-01T16:44:00.004-06:00

Yesterday was my first day to not take any pills. For two weeks. Until I return for clinic on the 10th of December. Until I received this email from Wings of Mercy today:

Dear Holly,

I may not be able to fill Dec or Jan. We had to suspend fuel reimbursement until the FAA gives us our ruling, which looks really good, in 60 or so days, but until then it’s a no for giving pilots that $ back.I wanted to give you a heads up in case you need to buy plane tickets. This time of year can be so costly.

Guess it's plan "B".
I just wish I knew what that was...

Memorizing Romans 15:13 this week- "May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit."

Go figure.

holy discontent

2009-11-25T17:26:00.006-06:00

Flying back from my appointment at USF on Monday, my friend and I were discussing -okay, yelling over the planes engine, the happenings at the appointment earlier that morning. It was all so overwhelming- it still is.
She reminded me of a conference we attended together four years ago in which the speaker asked us to write down what our "Holy Discontent" was in our lives. "I wrote your name down, Holly. I hated that we were watching you waste away. I felt like we had to do something."
Tears streamed down my face as I realized God knew she would be the one to witness the miracle in the doctors office that day. I was so overcome with a sense of God's love for me as I thought of so many of my family and friends, like she, who believed in me and encouraged me to hang on. There is hope. There always is hope.
And I felt it like I never had before when I was asked to run through the series of physical tests they challenge me with each month. The first month certain things that were asked of me to do were impossible. Physically impossible and emotionally discouraging. A holy discontent.
This visit, although it is still not known if I am on Chantix, the tasks I had to perform were do-able! I can not remember the last time I stood on my own without any assistance. To the "abled" bodied person, the above video may seem minor but as FA has robbed my ability to stand, this video means so much. I was even able to steady myself when I felt I would lose my balance. If that weren't enough to believe in miracles, Dr. Z gathered a team of doctors to witness me walking 50 feet with just Delsie!! The feeling was so bizarre to me, physically and emotionally, I didn't know if I was going to throw up or cry. Thankfully, I cried. No, I wept.
I know we still have a long way to go for the cure of FA but I don't think my friend is as discontent anymore...
I am walking and standing on Holy ground.
AMAZING!

2009-11-24T22:23:00.001-06:00

the difference a day makes...

2009-11-21T15:57:00.005-06:00

I continually have reminders that I am different.

Some days I just want to scream from my wheelchair, "Are you kidding me?!!" Yesterday was one of those days.

I ran errands in the morning and met a friend for lunch. The restaurant was busy and tables were pushed together to accommodate the large parties that gathered. As a result the aisles were quite tight- even for an "abled" bodied person to walk through. Now picture me in a wheelchair and a large dog navigating the oblivious crowds. Or not so oblivious. This is when frustration comes into play for me. As soon as I approach a table to pass by to make my way through the cramped quarters, people stop talking and stare. I stop. I can't squeeze by. "Surely, they will move. Just be patient." Nope. Still staring. I am stopped. "ARE YOU KIDDING ME?!!" I take a deep breath, smile and ask the person if they would mind moving so I am able to pass by. A reminder I am different.
After lunch I recognize that I am a little more sensitive and inhale a bit with the hopes that my exhale would relieve my bad attitude. Not so much.

I was as equally angered when I was at a different location to meet with another friend for coffee. As I made my way to the restroom, I assessed the situation and realized the location of the bathroom was not designed by a person in a wheelchair with a service dog. If it weren't for a full bladder, I would have held off until I was home. "You can do this, Holly. Besides, those girls will help you." After two failed attempts of keeping the door open so Delsie would be able to pass through, I knew it would be impossible. I glanced over at the two girls figuring they were deep in conversation, not aware of the predicament I was in. Nope. They were staring. Not moving. Just staring. "ARE YOU KIDDING ME?!!"

Another reminder that I am different.

But it is because of this difference that I am part of this clinical study in the hope of finding a treatment or cure for FA.

So, I have the bad with the good. We all do. I just happen to be in a wheelchair with a service dog.
I am different.
And I am glad that we all are.

Oblivious and all. Frustrated and blessed. Hurting and humbled. I'll keep pressing on.

Tomorrow I leave for my third clinic.
It's fun being different.
Even with painful reminders.

feelings or faith

2009-11-15T18:46:00.002-06:00

A new day. New possibilities. And finally a new post. As time goes on, the "newness" of my involvement in this study doesn't feel so new anymore. I'm not on a high, conversations don't center around it, monthly trips to Florida seem like the norm and there are days that I almost forget to take the pills. I have figured out when is the best time to take them to avoid the nausea. Still don't know if it is the real deal...and that's not for me to figure out.
I have been fighting a major cold/cough these past few weeks and have become quite the hermit as I prepare for my third trip to clinic Sunday. It hurts my ears to even think about the pressure flying in the plane.
When I don't feel well, everything is HUGE to me and doing life is difficult. I get more frustrated with FA and the effort it takes just to function.
So tonight, I have to go on faith and not feeling...keep pressing on.

says it all...

2009-11-09T19:08:00.003-06:00

A common question I have been asked after a trip to Florida is,
"Are you exhausted when you return home?"
It's been said a picture is worth a thousand words:

I almost fell out of my chair from laughter when I scrolled through the photos the next day.
(check out the mirror behind me)
Thanks, mom.

baby steps.

2009-11-01T18:00:00.005-06:00

Before Delsie came into my life, FA robbed me of the ability to walk. I wanted to walk as long as I possibly could. I was frustrated being in a wheelchair, knowing that I had use of my legs but absolutely no balance. When Delsie entered the picture eight years ago, she made the impossible possible. She got me out of a wheelchair and kept me walking for four years.
Although she is 10 yrs old and the FA is still progressing, together, we adapt. I wouldn't be able to do life without her.
So on my last visit to the clinic I was asked to walk 25 feet again. My first visit to the clinic, I was not only helped by Delsie but two other people were there practically holding me up as I attempted to make my way down the hall 25 feet. Delsie literally had to brace herself against the wall to support me as I was quite unstable.
Don't get me wrong, I wasn't running the hall but I did it! Just me and D this time! Okay, I needed to be assisted shortly after my body struck the pose of the leaning tower of Pisa. But it felt different and reminded me of the day I walked with Delsie for the first time.
Who knows if it is all mental. Time will tell and more work to be done in the treatment and cure of FA.
We're getting there.
One foot in front of the other.
Leaning and all...

2009-10-28T21:05:00.001-05:00

A-MA-ZING

2009-10-28T19:40:00.004-05:00

I sound like a broken record. If Delsie could talk I am sure she would tell me to find a new word to describe my 2nd visit to the clinic. I can't. It was amazing.
This journey is amazing.
I am so humbled to be a part of it.
Tonight I was stopped downtown by people who had read the article in the paper.
"How is everything going?"
"Amazing!", I replied.
I think I saw Delsie roll her eyes.
As we finished the conversation, we said our good-byes and my friend said, "The Lord be with you."
"Oh, He is."
His hand is all over this story.
And it is amazing.

bitter or better?

2009-10-24T19:32:00.004-05:00

I am not sure why I doubt. I struggle with controlling things. I tend to expect that life will turn out the way I want. You would think I would catch on. I live each day with this thing called FA that is rather demanding. And at times, very annoying. I don't have control over the progression over this disease. And I am ashamed to admit that often, I feel defeated. But what I do have control over is how I will react to my circumstances. A good friend of mine challenged me when the diagnosis was new. "Holly, you have a choice. You can choose to be bitter or you can choose to be better."
I attempt to choose the later.
Every day I am reminded of this choice. God gives me little glimpses of who He is and how He continually has my back. This Friday was no exception.
I meet with a few of women every other Friday for a writing group. One of these woman had just joined. We don't know each other that well. My trip to the clinic tomorrow must have been mentioned the last time we met. When I arrived Friday she handed me a gift bag, "This is a little something for your trip."
That, in and of itself, was so thoughtful. I was extremely touched. But when I opened the bag when I arrived home, I was brought to tears.
Each and every gift in the bag was filled with details by someone who really knew me. Right down to my favorite Kit Kat candy bars!
She also included a note that included Hebrews 11:8. "By faith Abraham, when called to go to a place he would later receive as his inheritance, obeyed and went, even though he did not know where he was going."
Abraham obeyed and went.

And by faith, I leave for my second visit to the clinic tomorrow.
Day #33 and God reminds me that someday it will be better. I may or may not witness it here but I am okay because He'll provide the Kit Kats. I just need to obey and go.

...and away I go...

FA and football.

2009-10-18T11:08:00.005-05:00

I often wonder how my nephews and nieces process everything with their Aunt Holly and this thing that makes me "do" life with a dog and wheelchair.

They get it.
Life.
They so get it.

My sisters and brother in laws are raising incredible kids.
I think FA is a breeze when I consider the responsibility of raising children in this world.

I picked their brain after a Sunday lunch ( 4 of them weren't there) and here is a part of our conversation.

Sorry to interrupt the football game, Ken.

Day #27 and no major side effects. Super tired and FREEZING...a result of Sunday afternoon and living in Michigan. I am looking forward to my clinic visit next week-maybe I'll thaw out.

this, too, shall pass

2009-10-15T22:06:00.011-05:00

Don't worry. This is not a plug for the H1N1 vaccine. Nor is it my intention to make you squeamish at the sight of needle. Frankly, I am quite fond of needles. Needles that carry an injection of B12.
It all began a year ago when my friend and I were struggling with the afternoon lull. About 3:00 during the day, I wanted desperately to crawl under my desk at work and take a little siesta with Delsie on her dog bed. She asked me if I had ever heard of a B12 patch. Thus, began a round of blood work to determine if I was in need of such a vitamin in my body. The tests results showed that I was extremely low in B12 so my doctor wanted me to start injections of it. And now, I would drink the stuff if I could. I had no idea how bad I felt before I started this treatment. It is to the point that I recognize it is soon time for another injection. No more afternoon lulls and the sound of Delsie snoring under my desk makes me smile with joy and not green with envy.
So, after my scare with Dr. Z last week and my overall sluggish feeling, I realized I was past due in my dose of B12. The next day a friend gave me the shot and within an hour she noticed that I perked right up. Dr. Z phoned me and during our conversation noticed the improvement it made in my speech alone. Phew.
I am still on the course. On Tuesday, I have increased to 2 pills in the morning and 2 pills at night. I have reached the maximum dose and I am on day #22. Dr. Z told me that day 20 the side effects may kick in.
I am not going to lie, I have twinges of doubt and tugs with fear. But I want to do this. I need to do this. For those living with FA or those not yet diagnosed. We are all in this thing together. This thing called life. And if in this life, I witness a treatment or even a cure for this annoying disease than my moments of tears and my bouts with anger will all be worth it.
Tonight, I cling to His promise...
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes on not what is seen but what is unseen. For what is seen is temporary and what is unseen is eternal." 2 Corinthians 4:16-18
Day 22 and I am still living with the effects of FA.
But it's only temporary.

digression...

2009-10-11T21:50:00.004-05:00

Friday night around the dinner table with some of my friends, the discussion began with expressing our love for PINK and her song, "SO WHAT".
Somehow it progressed into this...or should I say digressed?.

For lovers of PINK, watch at your own risk. I do not do her justice but my friends re-write of the lyrics are brilliant. This is a "cut" version so I posted the lyrics below.
I love my friends and their creativity.

This video is both mortifying and hilarious - kind of like living life with FA.

Na na na na na na na
Na na na na na na

Na na na na na na na
Na na na na na na

She's got this sucky thing
called Friedreich's Ataxia

she's in a clinical study
down in Florida

At first when she took the pill
she had some weird dreams at night

Dr. Z's the bomb 'cause
she's helping her win the fight

(2x) Na na na na na na na
she's gonna win the fight

so what
she's in a wheelchair
she'll run you over
and she's got big hair

Guess what, she's having more fun
Although she can't run
she's gonna show you for sure
there's a cure, don't ignore,
it takes time, so...

so what she's in a wheelchair
she'll run you over
and she's got big hair.

Delsie's her best companion
she takes her everywhere
God is her main support
without him she wouldn't dare

She flies on Wings of Mercy
she gets to take a friend
after 8 months of tests
she'll make it to the end

Na na na na na na na
she's gonna win the fight

God's always there
he always cares
he gave it all
though it's not fair

He gave her life
She'll give her all
He's always there
she'll never fall.

FEAR

2009-10-08T21:08:00.007-05:00

I hate bad "Ataxia" days. They are difficult to explain and even endure. I often say "this, too, shall pass" and one day it will. Maybe it won't be until the day I look Jesus in the face. Most of the time I am okay with that. But tonight, Day #16, is a different story.
I am scared for the first time since this whole study began.
This week, Tuesday, I increased the pills to 15mg, only after I fell while getting ready for work. If it weren't for Delsie and my stubbornness I would have been the perfect candidate for the commercial- "Help, I've fallen and I can't get up!" It was down hill from there-my spoon full of yogurt had a life of it's own and became next to impossible to bring it to my mouth. My co-worker and I laughed as she witnessed the whole thing. I knew it was a bad ataxia day. Later on that day, enjoying a Beach Bum ice cream from Captain Sundae, the Ataxia struck again and my dessert landed on my lap. A couple of hours later we discovered hot fudge dripping down my office walls. (Today I spotted my nephews face to be covered with a left-over blob of chocolate I missed in a family photo I have framed on my desk) It was a bad Ataxia day.
I have lived with FA long enough now to relish the time of night when I can crawl in bed and tell myself, tomorrow will be a new day. I lived through another day with FA.
On Wednesday I felt nauseous all day. Not much of an appetite. This is not unusual for me. A week from now I could consume more food at meal time than the food my three brother-in-laws eat, put together!
So when I answered the investigators questions today, it sent a little warning flag to Dr. Z. She called me tonight and my fear kicked in. Not because of her but because the words, "long-term effects" and "awful side effects" were thrown around. The severity of this clinical study became a reality to me. Two of the seven patients in the study responded great on the drug and noticed improvements. Three people had the adverse effect and were told to stop the drug. The "damage" is irreversible. I, however, am on the fence as the bad Ataxia days aren't necessarily a cause of the drug- I could be on the sugar pill for Pete's sake! (who's Pete, anyway?)By the end of my conversation with Dr. Z it was decided I would stay on this course until we determine if it's a cycle thing and has nothing to do with this drug. If the bad Ataxia days far outweigh the good ones then we will discontinue the drug. At this point, it is a mystery why some patients respond well and others get worse.
It's not a question of why Dr. Z is who she is, wired the way God designed her. She knows her stuff and I have complete trust in her decisions.
Tonight, my selfishness is in the way and I am not trusting the process. But as Beth Moore shared in my Bible Study this week, God doesn't take you "from" without a "to"...
So, "from" a person with a degenerative disorder called FA "to" a person with a little hope of a treatment or cure for FA, I won't give up.
My feelings scream for me to quit but it's my faith that tells me otherwise.
Day #20 is when the drug (if I am taking it) should kick in. Let's hope I am one who responds well to it.
I am anxious to call it a night and remind myself of the acronym False Evidence Appearing Real
has no place in my life.
Tomorrow is a new day.

puff the magic dragon

2009-10-05T19:57:00.004-05:00

Day #14 of taking 10 Mg of placebo or Chantix and nothing feels different. The investigators called again today and by the time I finished answering the list of questions, they ask every phone call, I question if I am really depressed. I'm not. No worries. But answering tons of questions asked in different ways, whether or not you want to harm yourself, makes you second guess your sanity or even fret if this will soon present itself.
So the story my co-worker shared with me about his 10 year old son and this study gave me a moment of comic relief...
The article in the Holland Sentinel is cut out and posted on the bulletin board in the office that his father and I work. This week end his dad was doing some work in his office while his son was waiting for him. As he was waiting he read the article about me and the clinical study.
He was a bit perplexed and walked into his dad's office and said,
"Dad, I didn't know Miss Holly was a smoker."

From the mouths of babes but a mind of an adult. A 10 year old comprehending the word "cessation".
I think he was more baffled that I took smoke breaks than the potential of curing FA.

my pouch.

2009-09-30T21:26:00.011-05:00

Every Tuesday at Bible study we have a time of prayer. One of my friends prayed specifically for my first clinical down to Florida. Her words went something like this, "Lord, help Holly to know she is more than Friedreich's. Allow the people she comes in contact with to see that, too."

Fast forward six days later down at the lab for blood work during the second half of the tests...we enter the waiting room at the lab. Being in a wheelchair, I barely can see over the high counter. My eyes connect with a not so friendly nurse, in which I only can see her eyebrows. . "Hi. I am here for blood work" I say, while practically lifting my rear from my chair and extending my torso in hopes that she is able to see my face. My feeble attempt was in vain as she hardly looked up from what she was doing and instructed me to sign the clipboard.
Another nurse called me back in the room to draw my blood- phew-Miss Crabby Pants won't be taking her anger out on me with a needle. The rooms are small. So me, a wheelchair, my friend, the nurse and Delsie all attempted to squeeze in. Being the polite dog she is, Delsie laid behind me and was half in-half out of the door.
It didn't take long for me to realize this nurse was going to extract my blood with a normal size needle. I quickly told her that although my veins look juicy, a butterfly would be needed. Thus enters Miss Crabby Pants who is the only qualified nurse in the lab to use a butterfly.
As she enters the tiny room, she lets out a disgusted sigh while putting on her latex gloves. It is apparent that she is not pleased that a dog is in her way and she steps over Delsie.
"Excuse me, pouch!" she mutters and then realizes her blunder and says to me without a smile, "I didn't mean to say pouch, I meant to say pooch."
I looked up at Miss Crabby Pants and shrugged my shoulders, "tomato, tamoto?...who really cares?!"
It was at that moment that I became a person to her and not just another patient. And she became someone to me. We laughed together and from that moment on, our encounter was something bigger than Freidriech's Ataxia.
All because of a prayer from a friend.

So thanks, my friends, for praying and encouraging me on this journey-I couldn't do it with out you.
It's so much bigger than me...
It's day #9 and I increased the pill to two times a day instead of just one. Time will tell...

patience...

2009-09-27T21:31:00.004-05:00

The mind can play tricks on us. Day #6 on Chantix and I should be out training for my first marathon. Yeah right. It has been interesting to not only wonder myself if this drug is going to have some benefits but answer peoples questions of how I am feeling.
Do I notice anything different? The short of the long answer is "no". But patience is a virtue- so we've been told. Psalm 46:10 reads, BE STILL AND KNOW THAT I AM GOD. In everything. Even after 8 months of this trial and I feel no significant improvement. That doesn't mean that Dr. Z has not made strides in a cure or a treatment to FA- I am just humbled to be used in this way. Don't get me wrong, it would be incredible to answer the question, "How are you feeling, Holly?" to simply hop out of this wheelchair and run with you. But for now I am trying to be still and really know He is God.

news clip

2009-09-26T12:09:00.006-05:00

Even though this disorder as progressed over the past 17 years and I have lost the ability to walk, in my mind I see myself as a completely "normal", physically fit person.

Last summer I cheered my sister on in her fist marathon in Indiana. I was perplexed after the 5th runner smiled at me and said "Hi" and thanked me for coming. Seriously, did I have a booger hanging out of my nose?! Was my fly down?! Why do these runners keep singling me out?!! By the time the 20th sweaty, panting runner acknowledged me, I had one of those OPRAH "ah-ha" moments. These marathon runners saw me different- I quickly became a girl in a wheelchair with a service dog. It was, and is, a fact that I wouldn't run in a marathon with them and maybe for that moment, they gained a perspective and got the 2nd wind that they needed to get through the race.

I forget that I am in this dumb chair and have a beautiful black lab to help me "do" life. So, when News 3 called yesterday to do this story, I fought back my pride and did it. As I watched this clip last night, I battled the tears as I was able to see so clearly what FA has taken from me.

Well, sorry FA, I want it back. You can't have it. You are not going to win. I hate what you have done and are doing.

So, the game is on...

Day #5 on Chantix. I will slowly be increasing to a double dose next week. The investigators called yesterday and asked me a battery of questions:
Sleeping? yep.
nausea? nope.
suicidal thoughts? nope.
depressed? nope.
but I will say I have had some BIZARRE dreams.

disappointments and expectations

2009-09-25T15:54:00.006-05:00

Get-togethers at the LeBlanc house tend to be a bit insane. Being an aunt to my nine nephews and nieces is one of those things in my life I am extremely proud of. I have to be honest and say my heart grieves that I have not added to the count of grandchildren with children of my own. (yet?) But the moments with my sister's children are priceless and warm my heart.
Like the other day when we gathered as a family before our meal. As always, Pata (my dad) asks if anyone would like to pray. With our heads bowed and hands folded, my six year old nephew, Jagger, begins,
"Dear God, thank you for this day and help my Aunt Holly to walk again."

Just as it did then, my eyes fill with tears. I acknowledge that life is filled with disappointments.
BUT it's
Day #4 on Chantix and I am chosing to be filled with expectations of what God is capable of...right, Jags?

At least for now no side effects...phew.

Day 2 and an inch...

2009-09-23T19:31:00.009-05:00

This is my notebook filled with the protocol for the study the next 8 months. Each patient has their own, which is about 7 inches thick. Not being a detailed person, this kind of thing freaks me out. Thankfully, this is for the team to fill out. I just take the pills. And I got confused by the that. "Is it kit #4 bottle #1 that I need? or is it kit #1 bottle #2?!!" Oh boy- I may be a chain smoke after this is all said and done.

We finally arrived at our hotel in Tampa about 10:00 Sunday night. TGIFridays was attached to the hotel for people like us without a car. After an entire day without eating or drinking, it was a welcomed meal in our empty stomachs. I slept maybe an hour (okay, it felt like an hour) and we hopped on the shuttle to the clinic at USF. It's HUGE. So big that they transported us in a golf cart when I needed to go to the lab for blood drawn. (Delsie was a champ!)

The clinic was 4 hours of a battery of questions from subtracting the number 7 starting with random numbers. Um, math is not my strong point. (just ask my Algebra teacher in 8th grade!) After being completely humiliated and feeling dumber than a bed of rocks, I had to perform a series of mouth exercises and speak certain words timed as they gathered a baseline.

I then met Dr. "Z"-the one who is writing this study and jumping through all the red tape. Not only do I love her for that but I just want to be her friend. And there are not many neurologists that I would say that about. (no offense if you happen to be a neurologist) She spent an hour with me - her bed side manners are to die for- she is phenomenal. Tests were comprised of rubbing my heel up and down my shin (that was about as good as my math skills), touching my finger to my nose and then her finger tip and moving my toes and fingers up and down. She wanted to see me walk and asked if I used a walker. I pointed at Delsie and replied, "you're looking at her." She was kind enough not to say, "I'd like to see this" but she didn't need to as her face said it all. After walking 25 feet down the hallway with D, she admitted her disbelief and recognized how well Delsie did (slippery floor and all) That's my girl!!

They filled out an inch of paper work on this visit-only six more inches to go! I have taken 2 pills - Chantix or sugar pill, who knows?- and at this point, I don't really care. I am so humbled and honored to play a part in what may be a treatment or cure for FA. All because a man with ataxia wanted to stop smoking, noticed improvements, told Dr. Z, she listened and did something about it. So now, 'lil ole me, with a dog and big hair may help eliminate for someone else the losses that accompany FA. What a tremendous gain. What a gift I have been given in this journey.

"however"

2009-09-22T19:19:00.004-05:00

After our first leg of the flight when we were on the runway ready for take off, something happened to the plane. I am sure Myra (my friend who went with me on this trip) can tell you EXACTLY what happened. I, on the other hand, stress out in other areas.
(urine sample, anyone?)
I think my circulation is finally returning...

2009-09-22T18:51:00.001-05:00

a quick update

2009-09-21T18:56:00.002-05:00

I am sitting in an airport in West Virginia waiting for our plane to be fueled. It is hard to believe I only left yesterday morning. This trip has been amazing in so may ways. I think of how my pastor ends every sermon with Ephesians 3:20. I have lived this verse out from the kindness of our pilots to the appointment with Dr. "Z", who is writing this clinical study.
The pilots just came back with dinner...and the plane is fueled.
I could get used to this private plane stuff.
I will post photos soon.
Thanks for your well wishes and prayers.

preparation

2009-09-18T15:37:00.004-05:00

Trying to prepare my heart and mind for my trip on Sunday...what???? Seriously- what does that mean?! I know enough about me that planning for things stresses me out. I do better to just do it. Someone asked me today, "how do you take your garbage out?" I just do it. Or if it's overflowing, I call a friend to help. So, preparing my heart and mind seems a tad hypocritical to me. "If there is a will, there is way" tends to be my motto.
The transportation issue down in Florida isn't completely resolved. However, my uncle reassured me that I would be able to rent a car for $25 if it is a 24 hour period. Ah, that's more like it.
My bags aren't packed but I am getting excited to begin this 8 month journey.
Tomorrow I will focus on my service dogs, Delsie, day off in hopes to raise money for the wonderful organization she came from, Canine Partners For Life.
And then my fight to eliminate this disability will begin...as if it hasn't already. I think I may be FA's worst enemy.
BRING IT ON! This chic ain't going down with out a fight.

cricket, cricket, cricket...

2009-09-16T01:17:00.000-05:00

I envy people who are deep sleepers. I am not. And stress plays itself out for me in the night or should I say morning. Every situation becomes magnified and after being awake with the chirping of the crickets, for what seems like hours, I shake my head in disbelief that I burned the midnight oil worrying about such matters.
Last night, it was providing the right type of condiments on a sundae for guests and now tonight it is transportation once I arrive in Florida.
A good indicator that I am stressed.
So, here I am. Posting at 2:45 in the morning, up with the crickets, listening to my dog snore next to me and longing to be a woman of faith that God will provide. And He will. Sleep or no sleep.

In the wee hours of the morning when all normal people are in REM, (or if you are a Le Blanc girl, you're cleaning the kitchen floor or doing a load of laundry) I am going over the options I have once I arrive at the airport, to travel the 9 miles to the hotel. Yes, 9 miles.

Option #1: A taxi that would be $50 one way.

Option #2: a super shuttle for $74 round trip.

These options seem ridiculously insane to me. I would put my power wheelchair in high gear and "walk" the distance. However, since I travel with my manual wheelchair the speed in which I go, would bring me to the end of the airport terminal by the time I would need to be at the clinic the next day!

Oh, how I long not only to be a deep sleeper but to be a person who doesn't worry about condiments or transportation. It will all work itself out...
I think I would rather be mopping my kitchen floor or doing a load of laundry but this dang FA makes it nearly impossible to endure chores like these when I am awake, let alone semi-comatose and completely stressed out.

And now my lap top battery is blinking low and Delsie is awake now, too.
I will pick up some reading material with the hope that I will drift off to sleep. And when the crickets stop chirping, I think I'll phone the University and ask if someone would pick us up.

Everything will look brighter when the sun rises. Just when I fall into REM and Delsie starts snoring.

ready or not...

2009-09-14T17:51:00.000-05:00

This is really happening.
What have I done?

Just got off the phone with the pilot who is volunteering his time and plane for my first trip to FL. So Amazing.

A Cessna 411. 4 1/2 hour trip. Leaving from Tulip City airport at 10 AM this Sunday, September 20. Clinic is on the 21st and we'll fly home that night.

Am I hopeful? Hopeful for a cure for this disorder? I must be. I don't think I'd go through this "rigga-ma-roll" for nothing.

And He provides. He gives me the hope I need.

Right when it's happening...

fly, fly away

2009-09-11T12:11:00.000-05:00

Every flight I need to go by faith that a pilot will sign up for the particular visit to the clinic.

This is the case for the trip on the 21st. I am at their Mercy...

Wings of Mercy, that is.

10 days and counting for a pilot willing to fly down to Tampa, FL.

...just need faith as small as a mustard seed.

This is nerve racking.

...and away we go...

2009-09-10T20:41:00.000-05:00

Back in the saddle again...an email from the clinic:

Here's a tentative schedule of your visit dates. We'll try to stick to them as best as possible.

9/21; 10/26; 11/23; 12/10; 1/18; 2/15; 3/8

The second sentence freaks me out.

One day at a time.
*sigh*
Moment by moment.

Now if I can figure out how to stay down there January, February and March...FA and winters in Michigan do NOT get along.

hot off the press!

2009-09-09T11:24:00.000-05:00

This is a reply email from the administrator at the University of Florida as I sent an email today asking for any updates...

Hi Holly, The board met on Friday and yesterday to finalize the changes. We submitted it to our campus review board this morning and urged them to approve it as quickly as possible. I'm hoping no more than two weeks. We will let you know asap when we find out it's approved so we can finally get you in.

So, I am not forgotten. How quickly I tend to forget that.

And being the nosey person I am, I asked if she was able to share what changes had to be made. Quite honestly, I feared that maybe they needed to shave my hair off and cut my head open or maybe one of the participants committed suicide. (just wanted to be prepared!)

Here is her reply to my curiosity:

Hi Holly, The changes just have to do with checking in more often on the phone at the beginning of each phase. Basically we just get to bother you more often. :)

Seriously.

And where is that scripture that says, "do not worry about tomorrow..." The fro remains!

By the way, as I am eating humble pie, "The Eye is on the Sparrow" is playing on my iTunes.

so I wait...

2009-09-06T22:19:00.001-05:00

Everything seemed to be happening with out a "glitch"- that should have been my first clue. I had the dates of the clinical and the schedule of when the investigators would phone me to record the findings. My good friend, Lynne, joined in on the excitement and agreed to fly down with me for the first clinical scheduled for August 31. I was matched with a pilot and the hotel room was reserved for the night. Wings of Mercy was planning to fly us home on the 1st of September.
That was until I received this email from the University of Florida one week before I was scheduled to leave:

Hi Holly,

I have some disappointing news. Unfortunately we have to cancel your appointment until a later date. The study investigators met yesterday and determined they wanted to make changes to the study and until those changes are approved we can't enroll anyone else. This means we have to cancel your appointment on Monday and when we get approval, we'll reschedule you. We will be able to reimburse you for the travel expenses you already paid for this flight, just send us a copy of your receipt or confirmation. I am very sorry about this. It certainly wasn't expected.

This news was a kick in my gut. I was shocked how violently I reacted. If you know me well, I can not talk and cry at the same time. This was evident in my first phone call to my parents after I received the above email. My dad answered the phone. "Dad, they called off the study!" It's something about the sound of your parents voice that bursts the dam holding back the tears. "WHAT?!", my dad replied. And that's all it took for the dam to break. "Holly? Holly?!" At this point I attempted to form words between my sobs. "Holly, I can't understand you. I'll tell mom to stop by."
Click.
I don't blame my dad. My reaction surprised me. At that moment I was weary of the fight. I was disappointed that the study was postponed for sure but more than this study, I was sick of Friedreich's Ataxia.
So after a day of allowing this "glitch" to defeat me, I woke up the next day with a reminder that "His mercies are new every morning. Great is His faithfulness."
I'm not going down with out a fight.
And so I wait...

a mountain that is an ant hill...to Him.

2009-09-05T16:48:00.000-05:00

While I got accepted to the clinical study in Florida, the hurdle of transportation was lingering. I honestly didn't even think I would be this far in the process so I knew I needed to keep pluggin' away. God can move mountains, I kept repeating to myself so I knew He could get me down to Florida once a month for 8 months. I was at a cook out with some of my close friends and I hesitantly told them about the clinical study. "But it's in Florida and I have to get down there once a month." I think I expected them to agree with my dilemma and allow my doubt to take root. Instead one of me friends replied, "Holly, look into Wings of Mercy. That is why the exist. You are the perfect candidate." I looked around the table hoping to lock eyes with someone who showed any signs of doubt but instead all of my friends were nodding in agreement. So, another round of phone calls and emails and a packet of application; I waited.
In two days I was told that Wings of Mercy accepted me for a year of free flights down to Florida. Unbelievable.
He does move mountains.

He makes me wanna be...

2009-09-02T21:29:00.000-05:00

I went into full gear for a solid month. Endless phone calls, emails and doctor visits. In the phoning process I discovered the clinical study in PA was full. My curiosity got the best of me and I called down to FL. The study allows 16 FA patients. 8 ambulatory (can walk without assistance 25 feet) and 8 non-ambulatory (which obviously was me). Before I knew it I was "pre-screening" over the phone with the administrator at University of Florida. Answering the easy questions, do I smoke? have a history of clinical depression? am I taking any medication? Not known for being a good test taker, I was pleased to hear that I passed.
Wait! Passed what? What did this mean? I soon discovered that it meant I had to pass the formal screening. Blood work (TONS of it) EKG, echo cardiogram and a visit to my primary physician. The game was on and I was in "do mode" to pass this screening. Not really sure why but it was a challenge to try figure out all the insurance stuff and make all the doctor appointments. But I did it. And then I had to wait for the researchers to say I passed. And I did.
Wait! Now what? This meant I was accepted into the clinical study for FA at the University of Florida.
I felt a little dose of hope. There may be treatment or even a cure for those diagnosed with FA. A little dab would do me. A dollop of hope.
I didn't stop to breath and think of the ramifications of it all until one of my best friend wrote this in her email when I told her I had no clue what I was doing but I got accepted in a clinical study for FA:
"I am so proud of you, Holly. You are brave to do this..."
It was at that moment the tears began to flow. Not because I felt courageous but that God answered my plea in my boredom. My life, lil' 'ole me, may help find a cure for this awful disease that has robbed me of so much. But one thing I know and am confident of, FA is not going to steal my joy. Just like the song, BRAVE by Nicole Nordemon, "I think I just let go".

and it begins...

2009-08-31T21:06:00.000-05:00

I was told that being bored was a sin. I was a HUGE sinner. I felt like I had no goal, no purpose...I was stagnant and felt like I was taking up space.
I started praying. I didn't have a clue what I was praying for and or even knew what I desired. I just felt things had to be different. I was growing weary of the "ho-hum" of life.
That all changed on the 1st of July when my sister, Laurie, sent this email that was forwarded to me that read, "Howard, did you see this?"
Four words that would answer my prayers pleading for direction. Things were (are) about to change and hopefully for the better. That is my hope. Not only for me but for those diagnosed with Friedreich's Ataxia in the future.
And yea, my sister's call me Howard.
Don't ask.