The Luckiest Man: How a Seventeen-Year Battle with ALS Led Me to Intimacy with God

The Luckiest Man: How a Seventeen-Year Battle with ALS Led Me to Intimacy with God

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Overview

How do you experience God's intimate, comforting, tangible presence? In The Luckiest Man, John Paine reveals how he found the answer to this most important of all questions—by facing a terminal diagnosis.

At middle age, John Paine thought he knew what it meant to have a relationship with God. He was a successful businessman, a well-respected Christian leader, a Bible teacher, and—outwardly, at least—the spiritual leader of his family. He was satisfied and thought he understood what it meant to know and experience God. But did he?

John's journey into true, mystical intimacy with God began when a neurologist diagnosed him with ALS, or Lou Gehrig's disease, and said, "Go home and get your affairs in order." Seventeen years later, John tells his story, recounting the ways God intervened in his life, freeing him from all that prevented intimacy with God, even as John slipped into pain, paralysis, and further toward death.

In stunning, insightful prose, The Luckiest Man points to the God who lovingly, though occasionally painfully, drew John into the richness of friendship. In this profoundly moving memoir, John Paine reveals the secret to intimacy with God and provides hope to all who are in the middle of their own trials. They, too, will understand why John considers himself the "luckiest man."



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Product Details

ISBN-13: 9781400210022
Publisher: Nelson, Thomas, Inc.
Publication date: 11/20/2018
Pages: 224
Product dimensions: 6.00(w) x 9.10(h) x 1.00(d)

About the Author

John Paine is a successful businessman and lay leader living in Plano, Texas. He has lived over seventeen years with ALS, also known as Lou Gehrig's disease. A once active man, John now spends his days in a wheelchair, dependent on a ventilator for his next breath. His greatest passion is mentoring others and sharing the true treasure of his life with them - intimacy with Christ. In the twilight of his life, John most enjoys spending time with his wife Margaret, the families of his four adult children and seven grandchildren.


Seth Haines has experienced the grace that comes from a God who lives in mystery, who works through both joy and pain. Seth’s first book Coming Clean: A Story of Faith received a Christianity Today Award of Merit in the publication’s 2016 book awards. Seth’s poetry and prose has been featured in various publications, including In Touch Magazine, Fathom Magazine, Tweetspeak Poetry, and at SethHaines.com. He makes his home in the Ozarks with his wife, Amber Haines, and their four sons.

Read an Excerpt

CHAPTER 1

The Luckiest Man

These are the things you cannot comprehend when you are first diagnosed with amyotrophic lateral sclerosis (ALS): in your final days, you will be a functional quadriplegic; if you are one of the less fortunate ones who contracts a rarer, slower-killing, nerve-heightening variant of ALS, pain will be your lot in life; you will be unable to move your arms, legs, or head; a machine will breathe for you; you'll spend the majority of any given day in a chair; in that chair, you'll feel as if one hundred cigarette lighters are burning through your backside, your thighs, your elbows; you will be unmoving, always awake to pain, ever aware of the fragility of your life. The good doctors advise you of these potential ALS symptoms, sure. But how can you understand this kind of disability? It's a thing never understood — not really — even when you're living in those last days. Especially when you're living in those last days.

ALS — also known as Lou Gehrig's disease — is cruel. It robs you of mobility, gives you misery in exchange. It is a disease — perhaps one of many — born from the pit of hell. It comes from its fire. It brings its fire to you. It is your enemy, even if your teacher.

Welcome to my life.

It is the evening before my sixty-third birthday, and tonight we are celebrating. The family has been talking about it for weeks; the children and grandchildren are excited for the red-carpet premiere of the documentary commemorating my life — The Luckiest Man. My friends are all abuzz, and some are traveling from across the pond to take part. The theater is sold out; more than eight hundred attendees are expected, they've told me. The local Fox News affiliate is attending. The hosts of a nationally syndicated radio program are coming. It's as much attention as any man could want. It's more than any man needs.

I should be excited. I should be looking forward to it with anticipation. But as happy as I am for this event, it is sure to be a celebration of my pain. I don't know any other way to put it.

How did Fotolanthropy — a group of creative documentarians promoting inspirational stories — manage to make a full-length film of my life after only a few short interviews? I considered the crowds — how would they react to the message? Would anyone come? Then, I considered my pain — how would I make it through a grueling night?

I call Leo, my friend and full-time caretaker, to my bedside and let him know I'm ready to suit up. It's a night for dressing to kill, I tell him, smiling.

He begins at my feet, pulls my custom-made compression socks over my calves so as to slow the inevitable swelling that comes with sitting immobile for hours at a time. He then slides my legs into my suit pants, pulls the pants past my knees, over my thighs, and past my bottom. Leo removes my BiPAP nasal pillow — the mechanical diaphragm that forces oxygen into my lungs. My diaphragmatic capacity has plummeted to less than 10 percent of what it once was, and without this nasal pillow, I'd be a dead man in a matter of minutes. Working against the clock, he centers me in the webbing of a sling laid out on the bed beneath me, which is then attached to an overhead rail lift. He pushes the button, and the limp weight of my body rises above the bed. As I'm lifted, my head slumps forward while the sling pulls my knees closer to my chest. For a moment, I am a child, cradled by a mechanical arm, and in this way Leo carries me across the room. I am still not accustomed to this tenderness.

In this cradled position, even as the pain of pulling joints sets in, I close my eyes and there is Jesus himself, holding me. I can almost feel the strength of his own wounded hands. As I'm carried in the sling, I tell Jesus how much it hurts, how much I want relief. The relief doesn't come, but peace does as I hear the words of my friend.

I will never leave you or forsake you.

I am with you and will comfort you.

The wounded healer knows how to comfort the hurting.

Leo lowers me and places me in the center of my wheelchair's donut-shaped and air-filled seat cushion. Over these last fifteen years, the atrophied muscles of my thighs and bottom have left my hindquarters deflated, and my skin hangs slack. When sitting, my bones press against all this loose skin and rub against the nerves. I feel the pressure and separation of my weakened pelvic bone as it touches the chair's padded seat, then the pulling of my femurs against slack tendons and ligaments. I can feel my skeleton pulling against itself, my hips threatening to displace and my arms attempting to dislocate from the shoulder sockets. The nerves are firing up under my thighs and buttocks, and hot spots light in my backside. These are my familiar enemies. My teachers too.

Leo takes a different BiPAP nasal pillow and inserts the two quarter-inch nozzles that are connected to a rigid plastic tube in each nostril, and I fall in sync with the whir of the machine. The mask is connected to a portable ventilator that pushes a prescribed amount of pure air into my nose at the proper pressure to fill my lungs. This automated diaphragm pushes, then pauses, then pushes, then pauses again. This mobile, external diaphragm keeps me alive, but only if I fall into its rhythm, only if I breathe when it pushes air and exhale when it pauses.

Inhale.

Exhale.

Breathe in rhythm. Live in rhythm.

This is the secret to staying alive.

Leo unbuttons a starched white shirt and pulls my left arm through the sleeve, then leans me forward. My head slumps toward my knees, my neck no longer able to support the weight of my head. He pulls the shirt around my back, leans me against the chair back, then pulls my right arm through. Leo leans me forward again, this time resting my head between my knees, and he smooths the shirt against my back.

"Do you feel any creases or wrinkles?" he asks.

"None," I say, staring at the floor.

Leo pushes me back against the chair, centers my torso, and makes sure my head is square against the headrest. When centered, gravity doesn't pull me from side to side and there's little threat of my shoulders sliding from the wheelchair back, of the weight of my head slinging me from my chair. It is a task that is easier said than done, but Leo has the caretaker's touch.

He begins working the shirt buttons, then pulls my shirttail down and tucks it around the outside of my pants. My shirts are cropped so that they extend only inches below my belt line. If they extended any farther, the wrinkles would be unbearable.

The shirt fits like a tent. So much for tailor-made. We laugh.

Now twenty-five minutes into the dressing process, Leo reaches under my legs and smooths the fabric to ensure there are no wrinkles. He unzips the fly of my pants, reaches in, lifts each leg, and pulls the loose skin forward. This is standard protocol. Even the smallest wrinkle — whether in the clothing fabrics or in the skin under my legs or arms — sets the nerves ablaze. If large enough, a wrinkle can press against a blood vessel and cut off circulation. Wrinkles once taken for granted are now the instigators of great pain.

I look down at my feet; even with compression stockings, they are already swelling; the blood is beginning to pool. I know that under my stockings, my feet are purple and filling with even more stagnant blood. This swelling is a reminder that without movement, without exercise of the muscles, the heart alone cannot return the blood from the extremities. Beyond a vascular issue, though, this swelling is an impediment to style. I'd love to wear my beautiful leather dress shoes, but the discomfort would be unbearable. I opt for wider, black canvas shoes, and Leo slips them on my feet. They are two sizes too big, and the insole has been removed to afford extra room for my swelling feet — a necessity.

Leo then widens the loop of my purple tie, slips it over my head, tightens the noose under my collar, and turns it down. I feel the silk loop pulling the loose fabric taut, feel the knot pressing against my Adam's apple. I cannot remember the last time I wore a tie. It feels familiar.

Leo checks my position again, and comfortable that I'm centered and all smoothed out, he reaches for my suit coat and repeats the shirt donning process. It has taken us forty minutes. Finally, I am dressed and in the chair.

I've learned to say goodbye to the little things, the everyday things, such as dressing or breathing on my own. Leo picks up the brush, and I try to remember when I said goodbye to straightening my own hair. I can't. He brushes my teeth and takes one last look, making a few last-minute adjustments before holding up a mirror for me. My frame is thin, slight. The fabric of my suit hangs limp. My shirt collar is a little loose. My shoes are functional. My nose is covered with a breathing mask. I hear the whir of my mechanical lungs. I sound like Darth Vader.

I used to judge an unkempt gentleman. Those are not fond memories. Now I've learned not to take appearance past face value. I've learned to see myself the way God sees me — loved, even in this mess of a body.

I love you as you are, the real you, he reminds me, and I know this is true. This ever-present reminder, this sense of intimate nearness — these are true gifts. If only I'd experienced these gifts before my terminal diagnosis.

Leo removes my nasal pillow. Attached to the chair's arm is a joystick, which extends toward my lips. The joystick powers a steering mechanism attached to my wheelchair, and by this I maintain some semblance of mobility. The joystick and the nasal pillow are incompatible, though, so when I am on the move, I am short of oxygen. This life is full of trade-offs.

I set sail, charting a course through my master bedroom and down the hall past the library. I enter the formal living room, cruise past the oversized furniture and the large curio that I purchased for Margaret. The curio holds her collection of antique teapots, which are only special to me because they are of value to her. I've learned to value the things she values. I have little time left to value her.

I stop at the glass wall that looks over the lake behind our home. The sky is growing dark. Yes, heavy rains were predicted, but I didn't expect it to be this black. I turn and enter the kitchen and informal living room. With this new vantage, the western view, the sky is even more ominous. Storms are little things these days, though. I've come to know the God who speaks through them.

Margaret enters the room wearing a form-fitting gray dress and gold shoes, and the clouds seem to roll away. Diamonds frame her neck. Her hair has thinned from chemotherapy, her own fight against follicular lymphoma, stage four. Even still, she is my radiant bride, more beautiful after all these years. We are quite the pair — Paines in our pain — but just take a peek; we look good. We are in the best condition of our lives.

"Ready?" she asks.

I smile. It is my premiere night. I am dressed. I am nervous. It is time.

CHAPTER 2

Deathnosis

I t all started with a muscle twitch on the top of my forearm. On a Monday morning just like any other, I sat on a gym bench, curling dumbbells. That's when I noticed it — the quiver.

I curled the dumbbell again; the small muscle group spasmed again.

After my workout, I showered and buttoned my starched dress shirt. The tremor fluttered against the fabric. In the car, in the boardroom, on my conference calls throughout the day, the muscle shuddered. It was constant.

I considered it a minor annoyance — just a tweak, a strain, perhaps a function of too many reps with too much weight? I did notice the loss of strength that accompanied the muscle twitch, and that didn't seem to make much sense; hadn't it set in while I was curling, while I wasn't using the muscle groups in my forearm? And if it were a tweak, where was the pain?

Could it be a sign of aging? At forty-seven, I was well past my prime, after all. My body wasn't what it used to be. I decided to give my body a few days to heal. Things would sort out. Hadn't they always?

Tuesday passed, then Wednesday, and the tremor in my forearm continued, sometimes quivering to the point of distraction. During calls, I massaged my arm with my right hand. I squeezed my left hand, balled it into a fist, and pumped it to work blood into the forearm. I rotated my hand, working the muscles. But no matter how much I massaged and tried to loosen the muscles, the top of my forearm shivered against my starched sleeve. Perhaps I just needed to take a break, maybe for just a week or two.

Two weeks passed, and faithful to my morning routine, I returned to the gym, standing under a barbell. I felt fatigued and had loaded the barbell with less weight, hoping to compensate with more repetitions. I pressed the weight up, pushed it toward the ceiling, and though my right arm cleared the weight from the start, my left arm hesitated. There was the shimmy, the twitch, but where was the strength?

While the muscle spasms had been annoying, the loss of strength was concerning. I was a strong man, a competitor. I was capable and accomplished. I was mentally tough. And feeling the misfire in my muscle, I decided to visit my general practitioner. He examined my forearm, asked me to remove my shirt so he could examine my spine.

Tracing the bones of my upper back, and with concern in his voice, he suggested I visit a neurologist.

I balked. "A neurologist for a muscle twitch? Maybe I should just lay off the weights for a few days?"

"No," he said. "We might be looking at spinal compression, which can impinge the nerves. If it is, you could lose all feeling in your arm and some of the mobility. A neurological assessment is in order."

Two weeks later, forearm still aflutter, I visited Dr. Maureen Watts, the Dallas neurologist to whom I'd been referred. We discussed my symptoms, and she suggested a round of diagnostics. X-rays were taken. Additional tests were scheduled. I left the clinic, unalarmed. There were things to do, business ventures to review. I didn't have time to worry.

Another two weeks passed, and I sat again in a hospital gown as a technician wired me up to an electrical current. Adhesive electrodes were placed all over my body, and the technician sent a series of pulses into each muscle group. Every shock produced a contraction or a tingling sensation, and when I asked, she said she was measuring the speed at which the electrical current passed through my muscles and nerves.

After removing the electrodes, the technician turned to a small table where a series of needles that seemed the size of crochet hooks lay. With the delicacy of a medieval torturer, she inserted the needles into my forearms, palms, neck, and every other muscle group she could find. Again, an electronic current was introduced, and I was asked to remain still as a statue. The test produced extreme pain and discomfort as she needled me for what seemed like an eternity.

Another two weeks passed, and Dr. Watts called me back to the office and told me the tests were inconclusive. She recommended referral to a more specialized clinic, a neurological diagnostic clinic at UT Southwestern Medical Center. Even still, I wasn't concerned. It was, after all, just a muscle twitch.

During my first diagnostic visit to UT Southwestern, I met with Dr. Sharon Nations, a specialty neurologist. She informed me that the muscle spasms I was experiencing were called "fasciculations" and indicated she'd want to run her own series of tests.

I was taken to the MRI Imaging Center, where I removed my clothes and donned another white hospital gown, open at the back. A technician inserted a needle into my back and pumped my spinal cavity full of radioactive dye. With my feet strapped to a table, they tipped me upside down so the dye could creep into the upper portion of my spine. There, a magnetic imaging machine photographed my bones as the dye stretched up my skeleton. After the test, I was given no results, but a follow-up for additional testing was scheduled.

Weeks later, and months into the continual fasciculations, I returned to UT Southwestern, where Dr. Nations indicated she'd like to repeat the electro-torture tests completed by my previous neurologist, Dr. Watts.

The tests were run — more needling, more electric currents — but this time, the receptionist did not schedule a follow-up appointment. Days passed without a phone call. It was the middle of September 2000, and with only two weeks before Margaret and I were to take a cruise through the wild waters of Alaska, I called the neuromuscular floor of the hospital.

"I'm traveling with my wife in two weeks, and before I leave, I need an appointment," I said. "And let's be clear. This will be diagnosis day."

* * *

Diagnosis day came, and when I arrived, the doctors asked me to disrobe again. I was handed the all-too-familiar split-back gown.

"Why do I need this?" I asked.

(Continues…)


Excerpted from "The Luckiest Man"
by .
Copyright © 2018 John Paine.
Excerpted by permission of Thomas Nelson.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

Table of Contents

Introduction: An Invitation xi

Part 1 The Trials

Chapter 1 The Luckiest Man 3

Chapter 2 Deathnosis 11

Chapter 3 The Cloud of Witnesses 19

Chapter 4 Wounded 25

Chapter 5 More Than Xs and Os 33

Chapter 6 Who's Stupid? 41

Part 2 The Errors

Chapter 7 A Tale of Two Paines 55

Chapter 8 Who's in Control? 67

Chapter 9 Firing God 77

Chapter 10 The Study 91

Part 3 The Intimacy

Chapter 11 The Undoing 105

Chapter 12 Cosmonauts and Snake Venom 115

Chapter 13 Sneaky Theologies 125

Chapter 14 Real Paine 137

Chapter 15 Saying Goodbye 147

Chapter 16 Freedom Through Emotions 157

Chapter 17 The Standing Invitation 169

Chapter 18 Between Waking and Dreaming 181

Acknowledgments 188

About the Author 189

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