John Paine: How a 17-year battle with ALS led me closer to God

EDITOR'S NOTE: May is National ALS Awareness Month, a time to recognize those suffering from ALS, also known as Lou Gehrig’s Disease. Author John Paine shares his emotional journey through the diagnosis of the disease that changed his life and the following 17 years, eventually coming to see himself as the “luckiest man.” This op-ed is excerpted from his book "The Luckiest Man: How a Seventeen Year Battle with ALS Led Me to Intimacy with God."

I remember how sweet everything seemed before the diagnosis, before the wheelchairs and ventilators. I recall the evening walks through the neighborhood with Margaret, holding her hand. I remember playing catch with my boys or tossing my baby girls high in the air.

So many evenings I walked the perimeter of the property at Lake Palestine, my sanctuary west of Tyler, Texas; strolled down the lakefront and through the dense woods at dusk. Even now I can hear the wind rustling through the trees and smell the honeysuckle climbing the bones of a dead pine.

I recall the thick, sweet summer air and the symphony of birds rising from the branches overhead. The last rays of light filter through the boughs of my memory, and I remember that on one such evening, God spoke to the quietness of my spirit. I didn’t understand his voice in those days, not really. I was too self-sufficient, too absorbed in my own successes and accomplishments. Even still, this was my first inkling of the tangible presence of God.

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It’s been too many years since I’ve walked that property. I cannot lose myself in the woods or feel the fight of the bass on a taut line anymore. I cannot hear the squeals of my children or grandchildren on the trails or see the sunlight filtering through the pines.

And though you may be tempted to consider these memories a sort of scourge or plague, they aren’t. They are a gift. They serve as the backdrop for the sweetness I’ve learned to recognize since those days. The truth is, in the days before my diagnosis, I caught only momentary glimpses of life’s beauty; today, I’ve learned to experience the eternal beauty of an intimate connection with family and God.

If I’m honest, before my diagnosis I carried so much noise with me, even on those days I spent at the lake. There, in my personal sanctuary, my mind often stretched to a thousand corners, to the next business venture, the next gala, the next Bible study I’d teach, the next family problem to fix.

I filled every spare second, even those quiet lakeside moments, with mental gyrations, hoping to set up another success or to procure another business or property. Even when the evening sun danced across the water like a million twinkling stars, when it collected in Margaret’s eyes, I was so often somewhere else. If you asked, Margaret might tell you I didn’t know how to turn off my drive for success and affirmation. She might have told you I didn’t know how to be present or be content.

Margaret may have been the only one who saw through my striving, who knew how all that striving kept me from true intimacy. She may have known that all the Bible studies I taught, all the money I gave, all the church problems I fixed had little to do with God. So much of it was all for me, for my need for validation. And now, I understand Margaret wanted true intimacy with me, my attention, my mindfulness. She wanted that vulnerable, no-fences kind of marital oneness. And didn’t God want those same things?

Over the last 17 years of living with this disease, I’ve come to understand the gift of intimacy that’s produced by God-designed dependence, and it’s been life’s greatest gift. I’ve found myself at the mercy of those around me — my family and friends.

And when I was forced to stop and take a long look at the downward trajectory of my life, I realized that my previous notions of self-sufficiency and importance were fabricated from the cloth of my own wounds. Life is about finding our validation in God’s unrelenting, uncompromising, unconditional love. This is the lesson I learned only by coming to terms with my own disability and death.

There are a hundred ways to say the same thing. You could say that your past doesn’t define you, or that the future isn’t something we’re promised. The more spiritual among us might cite the scripture about storing up treasures on earth (“you fool,” Luke 12:19–20).

But let me say it this way: the only certain gifts granted by God are found in the intimacy of this very moment. These certain gifts are found in intimacy with the people right in front of your nose, in intimacy with God as he speaks love straight to your heart.

When all else fails, tell the truth — I suppose this has been the motto of my life since that fateful day. And so, consider this truth: every day of my life is spent in physical pain, in paralysis, but even still, my life is full of joy and a sense of fulfillment. These emotions come from this truth of all truths: I know the heart of God toward me; I know what it means to have true intimacy with God. And oh, this intimate love of God — this is the true stuff of life.

The pain of my disease doesn’t negate the fact that I’d not trade any of it if I had to give back the beauty of my present life, the intimate connection with God I’ve learned to enjoy. I wouldn’t trade this intimacy for an eternity of walking with Margaret in the woods near Lake Palestine, or for the opportunity to chase my squealing grandchildren through those woods, to catch them, to hug them one by one.

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I don’t believe it requires suffering to know the full love of God; instead, I think it requires a simple act of unbecoming, of falling into the truth of God’s deep desire for you, regardless of your own accomplishments or false successes. If you can find your way into this sort of unbecoming, I bet you’ll come to discover the gospel about yourself — you are wholly, unconditionally, and completely loved. Only by this discovery can you experience transformational, intimate oneness with God.