Thursday, July 11, 2013

My Grandpa didn't know what FSHD was...didn't let it stop him

Let me introduce you to my Grandpa Vance. He was my Mother's "Daddy". I've heard stories my entire life about all the things he did. He was an entrepreneur, carpenter, salesman, role model, volunteer, business owner, mentor, farmer, fisherman and much more. He never let anything stop him...not even FSHD.
My Mom told me about how he built the house she grew up in as well as at least 3 others. He also built a dam in the creek behind their house by hauling huge rocks one at a time and setting them into place. He built a giant outdoor fireplace out of granite blocks. He did all of this without the help of a forklift or a bobcat. He did it all with his bare hands and also while having FSHD; a form of muscular dystrophy.
When I look at the picture from the newspaper, I can't imagine how he was able to pick up and load 50-60 pound pumpkins to take to  the market. He must have had incredible inner strength to deal with the limitations of FSHD. I have a feeling that he didn't let anything limit him.

I have often thought of him as I too have FSHD and have learned to overcome the difficulties of this disease. I have said to myself many times, "If my Grandpa can build a house, I can certainly climb these stairs."
 I wish I could have spent more time with him, but unfortunately he died in a car accident when I was 9 years old. He probably didn't know he was an inspiration to many and I am sure he didn't know he would still be inspiring me 40 years later. I am in awe of what he accomplished in his 65 years, with or without FSHD.

So when people said, "You have what your Grandpa had", I hope they are right!

This is one of the many houses he built.

This is the dam he built...amazing!

He also knew how to have fun.

Thanks for reading my blog. Feel free to share this post. To learn more about this disease and the fight to find a cure, click on this link or go to

1 comment:

Norm Bennett said...

That's pretty awesome Phil!

I forgot you had a blog until Mom told me you wrote about Grandpa Vance.

I'll have to keep better track of what you're posting.

Keep up the writing,

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Special people & places

"Ashokan Farewell" by Jay Ungar

"The Third Day" a short story by my daughter Cagney Bennett

"The Third Day"

It was raining outside.

The raindrops covered everything as though they were cleaning, washing away the sin of the earth. He came to my door. The rain had covered him like a blanket. It hid his tears, his grief. But I could see.

We didn't speak. I stood in my doorway and him on the porch and we looked at each other. I don't know when, but I started to cry. Sobbing, for the entire world to see. I wanted to make him understand. I just stood there and watched him. He nodded and slowly put out his hand. I reached mine across the threshold, to grab him and pull him to me. He was gone.

I can't sleep.

I keep all the lights on and sit on my bed. When I close my eyes, I see the same scene. Playing over and over in my head. My mother tries to comfort me, but she doesn't understand. She can't comprehend the guilt I am feeling. She tells me,

"You need to move on. It's not healthy to be so upset over something like this. It happens. And you've got to keep living. Just remember the good things."

I don't answer her when she tells me this. I pretend not to hear. I stare at her, letting her glimpse my pain. Finally she gets exhausted over this battle and leaves me in my grief.

And it's only the first day.

The next day my mother tells me I have to go to school. Being with my friends will make me feel better. I go to my first class and I feel that all eyes are on me. Even if it isn't true. My friends give me sympathetic looks and hugs all day. Those comforting throw-away words are said in my direction through out the day. I don't listen.

At the end of the day, my best friend grabs my arm and pulls me aside.

"You look like crap. Seriously, I don't mean to be blunt but, wow, I'm seriously worried. Do you need someone to talk to? I'm here to listen. I bet you have a lot of stuff to get off your chest." I tell her I don't want to talk about it.

"Here's another alternative. Try writing. It'll help, I swear. But I want you to call me and talk whenever you want. OK?"
I nod in her direction and start to walk away.

"Wait! I gotta know, will you go?"

I don't answer. I just keep walking.

Luckily the house is empty when I get home. I go upstairs to my room. Lying on my bed is a picture that I've never seen before. It is me and him talking with our heads bent towards each other. His arm is around me, pulling me closer. And I'm smiling contently. Where did this picture come from? I feel tears in my eyes start to fall. Can't think about it. Don't think. Please don't think.

I drop the picture on the bed and go take a shower. I turn the water as hot as it will go. Perhaps in hope of scalding me. Let my pain be compared to his.

After my shower, I go back to my room and put the picture under my bed. I sit on my bed for a while and then get a notebook.

Dear you, You took my heart and I want it back. How dare you hurt me like you did...Dear you,I miss you. I love you. I'm sorry. I want to hold you once more...Dear you, One day I hope you receive this letter. I want you to understand the pain. How much I ache for you. I can't even write the anguish I feel. Why can't we be together? I miss everything...

I throw the notebook across the room in disgust. There was no hope in letting out my hurt by writing. I'm not ready for it. I fall back on the bed and wearily close my eyes. Sometime later, my mother comes into my roomand covers me up, but I don't try to fully wake up. Let me sleep in my dark abyss.

And it's only the second day.

When I wake the next morning, it is raining. I have an intense feeling of déjà vu. My mother comes in with two pink roses.

"Do you know what you're going to wear? I have a couple ideas. I thought you could take these roses. You can do whatever you want with them. Do you want me to come with you? I'd be happy to."

I shake my head and thank her for the roses. She gives me a hug, causing my tears to start again. After she leaves, I attempt to find something to wear. The clothes blur together and finally I grab something black and put it on. With my hair up in a bun, I don't look like the girl I used to be. Pain has etched lines in my face and the black dress makes me look paler than I already am.

As I leave the room, for some reason, I grab the picture from under the bed and take it with me.

I am standing in front of the box. The only thing that remains of him on this earth is this box. I watched it be lowered into the ground.

"Dear you, "I say quietly, "You are the earth and the sky to me. You are the air that I breathe. You brought my cold heart to life with your love. Not a day will go by that I will forget your smile, your touch, your words. I will never stop saying praise to God for bringing you to me. I've lost my other half.Good-bye.Love, me"

I set the pink roses and the picture of us on the coffin. I let myself cry one last time. Then I walk away.

And it's only the third day.