Beauty

      In a recent sermon our pastor was discussing what heaven will look like based on what the Bible tells us. He spoke to how we use the word beautiful to describe things and people we find aesthetically pleasing. Before the concept of aesthetics even existed the Greeks came up with the word beauty or kalos, to explain God's greatness in early translations of the Bible. So if you think about it we definitely over use the word beautiful to describe things we find nice to look at it. 

      Living with a terminal illness like ALS is a mind fuck. I drive around day to day in my wheelchair focusing in on small details in the world around me that I never used to even notice and questioning why and how they came to be. When I dwell on that thinking and why I'm focusing in on such "meaningless" things I know that it's because I'm trying to avoid thinking about my immortality and End Day. Those thoughts consume you and makes it almost impossible to be happy, even with the faith I have in God.

     ALS brings darkness and dispare if you don't consciously make the choice to invite beauty into your life. You need to focus on the details. For me, I'm blessed because I have Michelle in my life. Her hair down to her toes are stunning and her beauty alone makes me see past my diagnosis. Her smile picks me up when I'm stressed, her laughter and silliness relaxes my nerves, her kisses give me strength. We watched the lunar eclipse together Sunday evening and were taken aback by the power and beauty the moon displayed. I noticed every swirl in the clouds, beams shining from the moon and warmth from Michelle's fingers intertwined with mine, and for the evening I forgot that I had ALS and was consumed by God's beauty. That's Grace.

20,000 Thank You's

      I woke up Monday feeling like the Sahara Desert was in my throat and a waterfall of snot was dripping from my right nostril. The miserable cold that all the students have had latched onto me and wouldn't let me go. Sneezing isn't the same with ALS. I can't bring both my hands to my face to hold a Kleenex the same and blow a massive blow to dry up the waterfall which makes things even worse. Smash-cut to the end of the day. Brendan and I had just pulled into my driveway and I was driving down the ramp as I always do when, SKEHFIBRCH, crash, my entire wheelchair is on its side, my head is on the concrete and I've got 300lbs on top of me. Brendan with Hulk strength and Flash speed was able to pull me from the wreckage and flip my chair back upright. I sat there in my driveway, bleeding from my eyebrow thinking, "what the fuck just happened?!?"

      Brendan, my hero, was able to get me back in the chair and cleaned up, where we discussed how the heck a backpack strap could cause so much trouble, before he went home. My day started horribly and ended like a train wreck. But then, however, my spirits were lifted. I had and have been checking on the Gronk's Grace Team page religiously as the Walk approaches. And I saw names on my team that I couldn't believe were there. Friends I haven't seen since Boy Scouts, elementary school friends, ex-girlfriends, distant family members, all signing up and donating exuberant amounts of money for me. I took out a fork to eat my humble pie.

      The GoFundMe support was tremendous and I thank God I have those funds to tap into whenever I need it, but the Walk money feels different. Being a part of this Team makes me proud. So many people kicked so much ass to raise this money. Kids did community service and smashed their piggy banks for these donations. Friends from all across the country even on different continents helped spread awareness for ALS and  got their peers to donate. 500+ people did the ALS Ice Bucket Challenge. I opened up about my insecurities to total strangers on TV, at bars, the grocery store, to anyone that would listen. Gronk's Grace has spread like wildfire and the support we've all raised will help many in the community with ALS. I've called us a team, squad, gang, clique, but I think at this point we should be called an army. An army that I know won't quit and won't back down or retreat until a CURE is found. I've never felt so proud to be a part of something. To victory!

A Poetic Snapshot of ALS

This comes from a guest contributor, my younger brother Kurt.

To Kris,

 

To dedicate an ice bucket challenge

Is to attribute so much more than 

A quiver in the spine.

It is so much more than a feeling,

A transitory sensation.

To dedicate anything to you

Is deeper than that.

It is more like being a root 

Among many beneath the earth

And you are the tree, an organism

With the purest cause.

 

Now like a tree

You really are an organism

With bone, nerves and blood

Like the wood, limbs and trunk,

You are all those folded proteins

And chemical signals too.

You are the cells that wither within you

And you are the synapses that strengthen your thoughts.

You are this cascading system of physicality,

But you are also grace and courage unfiltered,

Which to me makes you an angel

If they exist – And why ask?

You are here.

 

But with sickness like this, I struggle and cringe.

It would make me sulk and draw within

Were you not there to hold those doors open.

So instead I ask: what is with the genes,

Which from the earth produce growth

But so to enact the degeneration

Down the generational line.

Did I luck out or am I only keeping

My doom at bay?

But as I pretend to sit idle

In a canoe as the orange water waves

Sway me,

My soul,

Set free.

I am comfortable

To know and know not,

Because you are and will always be

Here.