ALS perks

This might offend some of you. I’m going there, Reader-land!

I have so many things on my mind right now, a lot of it negative, and then something funny happened which I wanted to share, which led to me thinking about the positives of having ALS.  It’s not morbid if it is me saying it.

Having ALS is like having walked on the moon.  For comedian Brian Regan, walking on the moon is the ultimate pick up line.   Now, replace it with ALS.  Oh, you have sore muscles?  My muscles no longer respond to my brain.  Oh, you have diphtheria?  I don’t know what that is but I’m going to not be able to walk, like ever. Oh, you have three years to finish your PhD?  I have three years to live.

Top that!

And then you get fast pass for your Disney visit.  Test Track over and over? Yes please!

I don’t have to drive anywhere.  I like driving, so this is not a perk, but at least I get to avoid long sore road trips. download (1)

Picking my nose is an acceptable and important practice.  Especially since I have to ask Mel for help, I can’t hide it.  I’m a proud picker… Like Luke!

Bathroom visits become an adventure again!  I hear Luke singing and playing and using his imagination… And I have to as well, because bathroom reading is right out!

I get to see and hear from family often.

Dinner always comes with beer.  I am supposed to keep my weight up, and, well, beer!

I get to hear everyone’s conversations because I can’t talk.  If you’re visiting, I can hear you, muahahahaha!

I get an unvarnished look at the reality of this life, and this death that we all progress to every day.

I get to think, and enjoy the quiet, if I don’t have YouTube running.

I get prayers from many people, some of whom have never met me.

I get to pray for them back.

Everything is slower, time is slower, to allow for thought.

Mostly I get to think, and ponder, and weigh and judge the realities of this world, with all of the history, incongruity, and downright evil of some of humanity, and contrast with the spiritual world.  Right now my Facebook and everything is aflutter with rebuttals of some old British dude trying to convince children to be atheists because Christianity is wrong, condemnations of the Amazon synod, cheers for throwing out idols, anger that trump is president, condemnation of all things considered masculine , condemnation of all things feminine, anti abortion, pro abortion, and on and on and on.  I have to see all that. We all are seeing all that.  I get to chew on it longer because I can’t rush around anymore.  And it’s a passing thing.

That is right, passing.  If you are given the chance to stare into the face of death, you see that all of it is noise, and passing, if we keep our eyes on what really matters.

“There, peeping among the cloud-wrack above a dark tor high up in the mountains, Sam saw a white star twinkle for a while. The beauty of it smote his heart, as he looked up out of the forsaken land, and hope returned to him. For like a shaft, clear and cold, the thought pierced him that in the end the Shadow was only a small and passing thing: there was light and high beauty for ever beyond its reach.”

― J.R.R. Tolkien, The Return of the King

Tolkien was a master of the archetype.  Not so the Dune series.

I get to see my nieces and nephews grow up, and some of them even ask me questions as if I were smart!

I get to see how my illness affects my kids, and how they grow from it. IMG_0441

I get to experience a love so powerful that the storybooks don’t dare to print it, a love that cares for me and expects nothing in return, agape love, from my Melanie and kids.  The marriage vows, how we forget that they are vows for life, and Mel lives the sickness and health part daily.  You don’t find that in any princess story.  Only the Gospel, I think.

I get to sleep in while everyone else has to get up.

And finally, the whole reason I started writing this post.  I get to fart whenever I want!

Seriously, last night I frightened poor Sadie the dog!  She learned the hard way to sleep at the foot of the bed!  “What is going on!?!?” IMG_0406

3 thoughts on “ALS perks”

  1. Love it, Joe! And I love the illustrations you choose. Joseph and I had a nice discussion on your email today. You’re helping to keep my adult children in close contact with me! Win win!


  2. Enjoyed this post, Joe, especially the picture of Mel. I don’t know if that’s a current picture, but if so, she has grown even more beautiful than when she was in high school. I think it’s the peace that settles around her eyes and mouth. Those eyes, they seem to be gazing at something far away. God bless you both, and your kiddos.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s