Nelly, Debbie and Bertha.

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.

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.

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.

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...

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.

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

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...