Breaking Through the Sound of Silence
“Lani can do prayer like that. She still does. But I miss her voice.”
By Dana Bowman | Photographs by Olivia Garretson | November 17, 2015
This is how Lani Porter does dreams. She hears the voice of God, and then she wakes, grabs a pen, and draws his words. I think it is a miracle, all this late night discussion when the rest of the world is asleep. And, I am a bit envious. Lani is so very good at listening. And really hearing. She is, however, not very good at talking these days. In fact, at this point, she can barely speak at all. Lani has been diagnosed with Bulbar onset ALS, or amyotrophic lateral sclerosis. It is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. “Bulbar onset” means it begins to manifest in the muscles of the mouth, the tongue, and the face. ALS has taken Lani’s voice.
Long before this diagnosis, I approached Lani after one of the services at Lindsborg Covenant Church. She had been in the back pew, and she was smiling and laughing and chattering away with her friends. To me, the talking was just jumbled noise.
I was a tangle of nerves and sadness, mired deep in pain, having just started on the road to recovery from alcohol addiction. I had intended to dart out of the sanctuary to the quiet of my car, but then I saw her, sighed heavily, and plopped down in the pew next to her. I asked, “Will you pray for me?” Lani knew (very few others at my church did, at that point) my story. She smiled, saw the crazy in my eyes, smiled deeper, and reached for my hand. Her grasp was cool, and her words, too, were cool and gentle, like rain on the forehead. She prayed a prayer so bright with His light it felt as if layers of crazy peeled away from me.
Lani can do prayer like that. She still does. But I miss her voice.
Now, when Lani wants to talk with you, she gestures for you to wait and brandishes her phone. She types with her thumbs, punching in her thoughts, and then holds the phone out, so we can see the screen. It is cumbersome, this phone-talking, but it works. And, of course, she texts people constantly. Most of us regard texting as a quick fix, a conversation-avoider. To Lani, it is a lifeline. Just this morning she messaged me, encouraging me about writing this article. She texts me that, “Jesus is conquering Saran” and I chuckle. I wonder how she feels about autocorrect. Probably the same way that she feels about “saran,” at times, I am sure. This is how she has to do life now, after her diagnosis. I cannot help but think of it like a split screen – Lani: Life Before. Life After.
Life before the diagnosis, Lani worked in our church office. She tells me she cherished that job, and we all knew she did. I loved seeing her there. She was a beacon in our church, a greeter, always smiling over her desk. She explained, in a long email, “I loved it! My favorite part of the job was praying with people who came into the office for help. I’ve rejoiced and grieved with a good number of the people. And I and my family have been blest with the care and prayer support of this church. They are all my family. I love this church family very much.”
When I first heard about the ALS diagnosis, I had to sit down and try to think it through. Then I wept. And then I fired away at God with a slew of questions. Why Lani’s voice, God? I asked. That’s her praying voice. Don’t you know that? That voice has been spread out all over this church of ours. How could you let this happen? Why would you take away a praying voice that has anointed so many people for so many years? I received no audible answer. Lani hears God in her dreams. I imagined this would be amazing and ethereal. But then Lani told me, “I was awakened at 4:00 in the morning by the voice of God. He said, ‘What is black and white and red all over?’ I lay in bed thinking that’s a strange question! I eventually answered, ‘I don’t know, God. What is black and white and red all over?’” As I read her account, my brow furrowed. This is not, in my opinion, up to par. God seemed to be speaking from a kid’s joke book. But then Lani finishes, “In my mind, I saw an image of a bloody Christ on the cross. I said to God, ‘That’s not funny!’ And He responded, ‘I know.’ I got up out of bed and drew a simple line drawing of the image. The drawing hangs in my office where I have my devotions each morning. I see it every day. It centers me on the truth of Jesus’ love for me.” And she helps us return to that same center. We watch and learn as she motions us to come over and wait for her to tap tap tap on her phone. The messages are clear, concise, and often razor sharp. She has no time, after all, for flowery phrases and lots of commentary. She cuts to it. I ask her where the blessings are in all of this ALS stuff, and she zings right back, “The word of God is salvation, peace, guidance, healing, wisdom…… Somebody stop me…there is no end to God’s benefits!! Either you believe it or you don’t.” Lani doesn’t mess around.
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.