3.9.21 Finish Well

Philippians 1:21 “For to me, living means living for Christ, and dying is even better.”

Y’all have met my friend Steve Martin here, HERE, and lots of posts on social media. His wife posted yesterday letting us know that he is comfortably transitioning to Heaven. Their faith in God’s divine grace is pouring through each post, comforting those around them even during this time of uncertainty and heartache. Steve’s candor, humor and humility through his fight with ALS has helped many find peace in their own lives, myself included. I cannot imagine living without faith, without the promise of an eternal life with my Savior. Steve and Chisa are strong examples of “Finishing Well” which is how he ends his posts.

To honor my friend and continuing to send his family all of the love support, I’d like to share with y’all some of my favorite posts from Steve. I hope you find joy and encouragement in his words.

ALS – A Lost Smile – Amazing Love Story

“Is it hard for you to smile now?” Chisa asked me the question recently and I realized that it was true. I answered her with a single blink, meaning “yes”.

As the motor neurons in my face continue to die, it has become increasingly difficult to do things such as opening my eyes, closing my eyes…and smiling. I can still do it, but it’s not easy. When someone is taking a photo, I’m always thinking, “Hurry up and take the picture already! I can’t hold this smile!”

After losing arms, legs, and speech, you may think that it’s no big deal to lose the ability to smile. That’s not the case. Although I can still smile when I think about it, the natural smiles accompanying daily life are seldom there. I still FEEL the same, but I don’t show joy on my face as much. You can guess who this affects the most: Chisa and the kids.

I can’t DO things or SAY things to express appreciation. And now, it rarely shows on my face. It’s not easy to care for someone who doesn’t smile or give some positive feedback. That’s why dogs are more popular pets than earthworms.

And that’s where this becomes an Amazing Love Story. Chisa, Liana, and Daniel continue to love and serve me with very little appreciation. That’s a Jesus-kind-of love that is more meaningful than chocolates in a heart-shaped box.

‘Let this mind be in you which was also in Christ Jesus…’
Philippians 2:5

Last week, a friend with ALS took his own life with the assistance of his doctor because he no longer wanted to suffer. He sent me a message on Tuesday night to say goodbye. My purpose in sharing this isn’t to start a debate on physician-assisted death, but to raise awareness of the horrors of this disease. I hope you’re not tired of my “ALS Awareness” posts. If I were you, I probably would be.

ALS is horrifying, brutal, relentless, awful, incurable, stressful, terminal, dreadful, evil, and any other negative adjectives you can think of. It’s not the only terrible disease. I just read this morning that the man who was the Sweet’N Low magnate committed suicide because he was suffering from Parkinson’s disease. The suffering from debilitating diseases like ALS and Parkinson’s is unbearable.

What started as an “awareness” post, will end as a “thankfulness” post. ALS is unbearable for me. It is unbearable for Chisa. Chisa has carried much of MY burden, and I’m so thankful. Many of you have helped to carry our unbearable burden too! Thank you to everyone who has prayed, worked, encouraged, cooked, fixed, gave, and helped. We couldn’t do this without you!

‘Bear one another’s burdens, and so fulfill the law of Christ.’
Galatians 6:2

ALS is a terrible, horrible, no-good, very very very bad disease. Nevertheless, I thank God for allowing it into my life because of the good he has brought about through it. I HATE ALS, but love how God has used it in my life, in my family, and in those who are walking this difficult road with us.

Daniel loves to read Calvin and Hobbes to me. He often comes into our bedroom in the morning while Chisa is doing my range of motion stretches and begins to read. Then Chisa brings me to the bathroom. Daniel sits on the floor by the bathroom door and continues to read. It’s his way to spend time with me without tiring me out. I don’t even have to speak. I just laugh once in a while so he knows I’m listening!

I realize that most of you don’t have one of these fancy Trilogy breathing machines, but if you do I would recommend that you do NOT do a humongous sneeze while wearing the mask.
It’s snot fun.

A priceless moment.
It had been months since I had given my wife a hug.
Using the elevator function on the power wheelchair, Chisa lifted me to a standing position.
Then she held me close so that I wouldn’t fall down.
Liana came and gently lifted up my arms to Chisa’s back.
I was hugging my wife!
Liana grabbed my cell phone to get a photo of this special moment.
Suddenly… 😮

Don’t you think it’s cruel to give trick candles to a guy that has ALS? 🤔Liana said, “IF HE CATCHES ON FIRE, HE CAN’T DROP AND ROLL!” 😂🤣🔥🔥

Everyone has been so excited about fall, fall, fall. So I fell.😁

I highly recommend these cozy poodle blankets for afternoon naps…

About 50% of people with ALS (including me!) have a strange symptom called PBA. It can cause sudden and uncontrollable crying and/or laughter. In my case, I might giggle at inappropriate times or I might cry when I don’t feel very sad. The other day a friend gave me a hug, and I responded by sobbing loudly for about 5 minutes! Sometimes I even laugh and cry at the exact same time! PBA isn’t the worst symptom of ALS, but it can be a little awkward and embarrassing at times.

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