Kevin's Tribute To "Our Friend Steve"

By Kevin

Hello everyone. It’s been quite a while since we’ve posted and MUCH longer since I have. Ok, so this is only the second post I have actually written on this blog. Jane is much better at this kind of thing than I am. But to quote one of my favorite movies of all time:

Jimmy : "I got something to say."
Man : "All right, say what you've gotta say."
Jimmy : "I don't know if it'll make any change, but I figured it's time for me to start playing ball."
-- Hoosiers

The past year has been tough on our family. I don’t know about you, but where we live, there’s been this nasty flu-like virus that’s got quite a few people concerned! If you don’t follow the local news like I do, google "coronavirus", or "COVID-19" if that doesn’t give any results ... you’ll see what I mean.

I have two things I want to share. The first follows from Jane’s previous post about her "friend" Steve. Steve had ALS, and sadly passed away late March. He regularly would post on Facebook to a group dedicated to ALS. It’s a group where those affected by the disease (either having ALS, or as caregiver, family or friend) can ask and give advice, vent about the hardships, and share comfort from encouraging remarks. Steve was always a courageous, positive, encouraging, and funny presence. I know this because Jane would share his posts with me, generally followed with some quip about how I should get on Facebook, join the group and follow along. I’ll tell you a secret. Facebook's not really my thing. I got enough people talking at me already.

Steve first made me laugh without uttering a single word or posting a silly picture. Jane simply mentioned his name. Steve Martin. ... Now, if you’re confused as to why this might have struck me funny, you likely also won’t understand why I’m clarifying that, No, it’s not the "condo made of stone-a" Steve Martin. If you’re not of a certain age and/or still lost, google that and you’ll see what I mean.

Now ... here’s where I’m going to start stepping out on a limb. I’m going to *actually* open up a bit, leaving myself vulnerable after a lifetime of introversion and privacy. Steve's posts were always very inspirational, and a testament to his unwavering faith in God. I want to share his final post that he wrote himself, and that his wife submitted on his behalf posthumously.


Dear family, friends and random people,

I have an important announcement to make: I AM HEALED!I AM FREE FROM ALS! Thank you for being a blessing in my life throughout this difficult journey. The journey continues for Chisa and the kids, as well as for each of you. May God give each of you joy in the journey and grace for each day. I will leave you with a little poem that I wrote for this occasion. Yes, I read too many Dr. Seuss books.

Love, Steve

HOME

I can jump
I can eat
I can sing
I can walk

I can move
I can dance
I can breathe
I can talk

I am home
I am healed
I am free
I am whole

I now have
So much more
Than ALS stole

The race has been finished
My journey is done
Please don’t say, “He lost his battle“
For indeed, I HAVE WON!

'I have fought the good fight, I have finished the race, and I have remained faithful.’
2 Timothy 4:7

#FinishedWell


Steve's final post moved me. And in a direction that I ... I honestly didn’t see coming. Now I’m really moving farther out on that limb. Steve didn’t bring me to God. I had it out with God long before I got ALS. What Steve showed me, was that I didn’t have to hide or be embarrassed to share my faith. I didn't have to hide the story of how I came to truly believe after spending most of my adult life as a skeptic ... or as barely a lukewarm Christian if that. That story is for another time. The second thing I wanted to share was my "tribute" to Steve and first post after joining the ALS group on Facebook. For the record, I’ve had a Facebook account since 2010. I’ve only ever had 5 friends, including Jane, and less than 10 posts the last of which was in 2011. The following was my resurgence on social media (so to speak).


Hello. My name is Kevin. [...] I am honored to be among the "random people" to have appreciated Steve's humor, compassion, inspiration, and faith. I found myself lacking to do any justice to a real tribute. So, then I thought of an idea Steve might have appreciated. What if Shel Silverstein (poet) had ALS? I am NOT a poet, AND I know it! But the following, I wrote, at first, in a simple effort to honor Steve, when it turned into something more for me. So thank you to everyone here for what you do and I look forward to coming out of my shell and giving back to the community. I hope you like it.

My arms and legs do nuthin but twitch.
My head and back continue to itch.
My voice is a mess.
My hands are worth less.
Yet I laugh 'till I've busted a stitch!

I laugh at the drop of a hat.
Then cry since I cannot stop that.
My PBA
Ruins my PB & J.
No worries about getting fat!

I can’t feed myself anymore.
Sneaking chocolate was a hobby before.
Now I’m spoon fed,
And I choke on my bread;
But still dread that feeding tube more!

A night’s sleep would be fantastic!
My legs do a dance since they're spastic.
I dream of sleep,
To sleep to dream;
Lying awake in an itchy panic!

My shoulders are constantly sore.
I can’t sleep on my side anymore.
The muscles I’m losing,
Not by my choosing,
Are complaining like never before!

My limbs are now filled with lead.
I sleep in a hospital bed.
A recliner on wheels
Never quite feels
As cool as it did in my head!

Now I feel like a burden to family;
Needing help to go pee is not manly.
I've abandoned my wife
For the rest of HER life,
And three children whose lives I'll miss madly.

I cry so hard in my rage.
Sympathies cannot assuage.
Saliva builds up,
My throat closes up;
Breathless panic starts throbbing backstage.

I rest in the arms of my wife,
Simpering -- reflecting on life
I apologize,
She wipes my eyes,
And loves me knowing my strife.

Her love takes ahold of my soul.
A reflection of God's face to extol.
A peaceful repose,
Our vows I suppose;
A broken life starts to feel whole.

My whole family shares this disease.
It’s not just me it grips with unease.
The notes of our fears,
Chords of grief in our tears;
Our tender chorus of harmonies.

Family and friends share their love.
The whispers of Him from above.
I find calm
From this soothing balm,
I feel undeserving of.

I'd spent my life wrapped in pride.
No room for religions inside.
Success was my own
With no need to atone;
Being good on my own was my guide.

I had found God before ALS.
That was critical to His success,
Lest I dismiss
His existence amiss;
Anesthesia to those in distress.

I found myself open to Grace.
Consolations -- He filled in the space.
The void overflowed
With love that was showed;
The fear and despair He'd displace.

Now the veil of tears, has lifted.
A joy for everyday life, has been gifted.
Though easy to lose
If I were to choose,
To turn my back on the help He enlisted.

So I chase the life right before me
Instead of the death that’s prescribed me.
Embracing the laughter,
And any tears thereafter;
A concentrated form of what would be.

Now with perspective altered,
Acknowledging those times I faltered,
I look upward
No longer covered
By blinders of fear or despair haltered.

Look! A new day has dawned!
I laugh because my dog just yawned.
My daughter helped me eat,
Wife slippered my feet
We've bonded to infinity and beyond!