‘OK Lord, Let’s Get on with It’
Although ALS has taken her voice, nothing is going to keep Lani Porter from praying for others, teaching, and rejoicing
By Dana Bowman | Photographs by: Olivia Garretson | November 17, 2015
When Lani’s disease started its full attack, she simply said, “Ok, Lord, let’s get on with it. Let me keep going.” The ALS also has kept to its predicted path, inflicting loss of speech, motor skills and mobility, as well as mind-numbing weakness.
But Lani battled back by grabbing her Bible and finding some really cool technology so she could keep teaching. Lani now utilizes a voice app on her computer and phone for almost all of her communication. She purposefully chose the British-accented option because she says her husband, Rick, likes it the best. He thinks it’s “spunky.”
Recently, I sat in while Lani taught a Bible study to two women who are not from our church. They have some disabilities of their own, and they long to learn. The process at first seems cumbersome. She types, waits for the voice app to talk, but the wireless at the coffee shop is not working. I sense her frustration, but then, she smiles. Technology isn’t going to slay us.
She draws, and gestures, and pounds away at the keys on her phone. And asks questions. And waits. We all wait.
Sometimes the waiting is simply because the question misses its mark. At times, the waiting happens because she is communicating with a broken system. But even then, there is a lesson to be learned. We wait. And in the waiting, we ponder and chew on the verses.
I find myself forgetting to take notes for my article. I find myself wanting a Bible, so I too can look up a passage. I lean in closer. The notes I take are lousy, but I gain a new understanding of meditation, and I am very grateful.
This is how it is to be around Lani. You can’t help but lean in and learn a bit more than you planned.
At church, Lani is still a picture of sophistication. She wraps herself in bright scarves, silver jewelry; she is a chic portrait. And yet, now, her disease scratches at her pride. In frustration, she admits, “I hate the drooling that it causes. A vain girl has to repent in this state!” She carries with her now, at all times, a delicately folded tissue for wiping her chin. We watch, adjust our expectations, and learn some humility right along with her.
The muscles of my diaphragm are weakened,” Lani tells me in her email. “I sure do miss singing. I have two grandchildren who haven’t heard my voice. I can’t speak the name of Jesus. I can’t pray audibly which was one of my favorite things. That riles me up in my spirit!
And there is the pain of how she imagined her life with her family would be crashing up against how life is now. “The muscles of my diaphragm are weakened,” Lani tells me in her email. “I sure do miss singing. I have two grandchildren who haven’t heard my voice. I can’t speak the name of Jesus. I can’t pray audibly which was one of my favorite things. That riles me up in my spirit!” We watch, again, and sigh, and learn about suffering.
And yet, even in the pain, her message is clear: her life with Jesus is a treasure. All of it.
“How many of us want to go through the great challenges? We love the good times, but in the bad times we blame God. His word says He is faithful. Shouldn’t we be also? I believe that the church who will bring about God’s will in the last days need to stand on His word regardless of the challenges. I am walking by faith not by sight. ALS is a big giant, but not as big as my God!”
Many months ago, right after Lani’s diagnosis and before her voice was taken, we stood and sang the ending hymn at our church service. It was a warm morning, and we started clapping, up in the balcony, belting out a rousing rendition of “Sing to the King.” Our praise band was in high form, and the Holy Spirit filled the balcony, right up to the ceiling, with joy. The chorus sailed out of us:
Come, let us sing a song,
A song declaring that we belong to Jesus.
He is all we need!
Lani stood behind us, surrounded by her family. Her clan took up two whole pews. They all belted out:
Lift up a heart of praise,
Sing now with voices raised to Jesus.
Sing to the King!
Lani was singing along, loudly, triumphantly, just as we all were.
It was one of those moments in church, fueled by love and holy fire that we will remember. We felt Him. My eyes filled with tears and my arms lifted up.
For His returning we watch and we pray,
We will be ready the dawn of that day!
More arms lift. We stomp. We clap. We sail.
We’ll join in singing with all the redeemed, ‘CAUSE SATAN IS VANQUISHED, AND JESUS IS KING!”
And that’s when I hear it. A siren-loud, “WHOOO-HOOOOOO!” from the pew behind me, and I know. It’s Lani. She just can’t help it. I laugh and cry and my hands sting from clapping, and join in the chorus with her. The balcony shakes with all of us, loving Jesus. Loving the light God has brought into our lives.
True, she cannot sing out loud anymore. But the spirit that heralded us so audaciously that Sunday morning speaks to us all the more.
Lani sums it all up the best. “Even though I can’t clearly speak I do have plenty to say! I have been digging in the word of God. And He has not disappointed me. I find treasure in there every day. You GO God! He’s so faithful.”
Olivia Garretson is a high school student, photographer, videographer, and musician who is passionate about telling stories in ways that are genuine and beautiful. You can find her chasing light across fields and faces in the Midwest at LightshaftMedia.com.