Tuesday, August 26, 2014

Ice buckets and Christmas lights



When I was 18 years old, my grandfather died from ALS.  By the time he received a diagnosis, he was given only 6 months to live.  It was fast and furious.  ALS is a horrible disease to experience...and a horrible disease to watch.

With all of the ice bucket challenges over the past month, I have had flash backs to the 18 years of knowing my Grandad, as well as the 6 months of watching the cruelty of ALS.  I am glad more people know about ALS...and I wish more people knew my Grandad.

Grandad was always on time.  He took pride in being awkwardly early to any event.  He loved ice cream, Reese Pieces, Wrigley's gum and Lifesavers...with plenty to share.  Speaking of sharing, he loved giving to those in need.  I could ask him for anything.  He had a great smile that went ear to ear.  And his frown was a full face scowl that he did without even noticing.  He was meticulously organized and loved routines.  He kept the TV schedule from the paper in the exact same spot for years...and was livid when someone moved his schedule.  His car was his baby.  Looking at it, you would think you were in for a nice smooth ride.  But Grandad was the worst driver.  He drove with his left foot on the brake and his right foot seemed to have a nervous twitch on the gas pedal that made the car jolt back and forth.  He adopted a skinny mangy mutt named Casey that became the fattest most spoiled dog you could imagine.  Grandad had a meticulous lawn and a garage full of tools, all organized to perfection.  But I rarely saw him use any of them.  He was not the handy type,  except with toy trains.  He had the most amazing train set up I have ever seen in a home.  He bought conductor hats for the grandchildren and we would sit on our stools and watch in amazement as the trains zoomed on the track.  Pure joy would be on my grandfather's face as he ran the trains for us kids.  He would drop anything to run the trains for us.  Every Thanksgiving he took all the grandchildren to the movies...it was his special treat.  My favorite memory is from Christmas.  Grandad would borrow or rent an 18 passenger van and pile all of us in for a tour of Christmas lights.  He would drive around town for an evening, showing all the grandkids the best lights in town.  I vaguely remember having popcorn for the ride.  It was a highlight of the Christmas season, and it was all thanks to my Grandad.

And then came ALS.  Slowly, as if working from the tips of his fingers to the inside of his throat, the disease took it's toll.  At first he could clumsily pick some things up, and walk through the house with a walker.  They built a wheelchair ramp to the house, and he would still go to church.  Quickly things changed.  When he couldn't stand anymore, he began to loose so much weight off of his already frail body.  He would sit in his wheelchair, his recliner, or his bed...and would want to change positions often.  The inability to move even an inch was causing horrible bed sores all over his body.  I could pick him up and move him from one venue to another.  He couldn't have weighed 100 lbs.  He slowly lost the muscle strength to eat normally.  I would give him tomato slices and he would have to spit out the peel because his body couldn't digest it anymore.  For a while he would still play cards...and my grandmother would help move the cards for him.  But then it got harder for him to communicate which card he wanted to move.  Even though ALS doesn't attack your brain, he was losing all channels to bridge us to his thoughts and desires.

The night I said goodbye to my grandfather was one of the hardest nights of my life.  I had spent the summer living near him so that I could see him more and it was time to head back to college.  He and I both knew that he wouldn't make it until my next school break.  I stayed as late as I could that night.  I didn't want to leave.  And when I did, he smiled at me.  His big ear to ear smile.  He let me know that he loved me.  And we both cried.  I cried the whole way home and the entire 12 hour drive the next day.  My Grandad passed away 2 weeks later.

I am thankful for his life.  I am thankful that he loved the Lord.  And I am thankful that I got to spend that summer with him.

I am also thankful for this sudden awareness of ALS.  And thankful for my cousin's challenge.  Though a rare disease, ALS is a very cruel disease that is 100% fatal.  I am donating in memory of Thomas Franklin Liverman Jr.  I hope his battle is one of the last battles with ALS.