5. Your Decision Matters to You
Wherever the providence of God may dump us down, in a slum, in a shop, in the desert, we have to labour along the line of His direction. Never allow this thought—“I am of no use where I am,” because you certainly can be of no use where you are not! Wherever He has engineered your circumstances, pray.
OSWALD CHAMBERS
We are now at the part where I wish there were no pages between us. I’d love to be able to wheel up to you as you sit at your daughter’s hospital bedside, past the beeping machines and dripping tubing, to talk face-to-face. Or be with you at your kitchen table to hear your heartache over your senile mother in a nursing home. Or just sit and listen as you lift the black cloak of depression long enough to speak.
If we were together, I’d want to talk about facing suffering: the kind that spins out of control, rips into your sanity, and tears apart your body—the kind of suffering that helpful information is powerless against.
If we were together, I’d want to peel back our defenses and confess how we both would really rather sidestep the whole process of pain. How we’d like to detour the distress and shortcut the suffering. Sure, we can say life is not something to be discarded when it doesn’t work properly or seem to have value, but it is a constant struggle to hold on to it. How much easier to bypass it all.
For several years leading up to my diagnosis of stage 3 cancer, I wrestled with chronic pain. The pain opened a frightening door to depression, and I found myself saying, “God, I can’t imagine living the rest of my life in this much pain.” At several points, I almost hoped I’d be diagnosed with some terminal condition—perhaps cancer—so I could escape my ensuing years of pain. Could cancer be, I wondered, my early ticket to heaven? Sure enough, the very day in June 2010 that I learned I had cancer, my depression disappeared overnight. I thought my earthly graduation to heaven wouldn’t be far away. But God had other plans, and I am so glad He did.
Sidestepping the Process of Pain
No thinking person chooses suffering. But we can choose our attitude in the midst of suffering.
That lesson was driven home to me years ago when I read Man’s Search for Meaning, a classic study of how people preserve their spiritual freedom and exhibit heroic responses in the face of horrible suffering. The author, Viktor Frankl, was a psychiatrist who was sent to a concentration camp in World War II, where he found himself stripped to naked existence, cold, starved, beaten, and expecting extermination with each passing day. He lost his friends and family to the gas ovens. He lost every valued possession. How could he find life worth preserving?
The book hit home with me as a young student, even though campus life was far from the terrors of Auschwitz. But Viktor Frankl’s work meant far more to me during the darkest, loneliest days of my two-year confinement in the hospital. There, lying facedown, strapped on a Stryker frame, I turned each page of Man’s Search for Meaning with a mouthstick clutched between my teeth. My tears would drop and splatter on pages where this camp survivor wrote:
We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.
And there were always choices to make. Every day, every hour, offered the opportunity to make a decision, a decision which determined whether you would or would not submit to those powers which threatened to rob you of your very self, your inner freedom; which determined whether or not you would become the plaything of circumstance.
This man was worlds apart from my vocational rehab counselor. Frankl had experienced great suffering, and so his words commanded my attention. I remember pausing to give my mouth a break from page turning, murmuring over and over, “I am not held hostage by my disability . . . I am not held hostage by my disability.” Mine was not so much a spiritual exercise as a mental effort, a first-step attempt at breaking free of the circumstances that dug their claws of control into me. I would read on:
Even though conditions such as lack of sleep, insufficient food and various mental stresses may suggest that the inmates were bound to react in certain ways, in the final analysis it becomes clear that the sort of person the prisoner became was the result of an inner decision, and not the result of camp influences alone . . . When we are no longer able to change a situation—just think of an incurable disease such as inoperable cancer—we are challenged to change ourselves.
I was challenged to change myself. But how? I felt a little sheepish that my inner decision could barely move me to smile in my wheelchair, let alone face with courage things like starvation, beatings, and gas ovens.
When I finished Frankl’s book, I realized it was an answer to one basic question, a question that in fact the psychiatrist, after he was released and returned to his practice, often asked his troubled patients: “Why do you not commit suicide?”
In other words, “Why do you not sidestep suffering?”
From their answers, it was then the goal of the psychiatrist to weave these slender threads of broken lives into a pattern of meaning. Each person, he insisted, could find valuable meaning in suffering.
I mused over the meaning of my suffering while lying right side up on my Stryker frame rather than upside down—it was easier to think hopeful thoughts facing fresh air rather than the floor! As I counted the tiles on the ceiling, I counted the few, slender, brightly shining threads of my broken life.
• I’m alive.
• I at least still have feeling in my neck and tops of my shoulders.
• I can see the moon through my hospital window.
• I’m learning that patience and endurance mean more on a Stryker frame than running twenty-five laps around a soccer field.
• My friends are still coming to see me, and the doughnuts they bring taste good.
• It’s nice to have the nurse read me Robert Frost’s poetry during her lunch break.
• I like listening to the Beatles.
• And like holding on to a thin kite string, I have hope that my situation might get better. I see it in the eyes and smiles of my family, my friends, and a few of the nurses.
• Oh, and one more positive thing—they might find a cure for spinal cord injury!
Small as they were, these slender threads tied me to life, even if I hadn’t yet decided if it was worth living. The threads were fragile, but they held me through the day and kept me connected to people. The meaning behind it all, however, was still unclear. But I knew this much: it had something to do with God.
Someone has said if you believe that the individual is supreme, then your responsibility is only to yourself since there is no God who gives us life or who awaits us in death. But if you believe that life derives from a loving Creator, then leapfrogging the suffering process must be considered within a larger context.
It was a fact that my background oriented me toward God. And my assessment about life and death was becoming a matter of conscience rather than a knee-jerk reaction to the problems at hand. The weeks passed. My thoughts deepened. And the longer I hung in there through the process of suffering, the stronger the weave became in the fabric of meaning. I was convinced God was mysteriously behind the pattern, so I took a closer look at new threads.
• My friendships are deepening and becoming more honest.
• What’s important in life are people.
• I’m learning the value of a smile.
• God is real. I can feel Him when I’m alone at night.
• There are others who are hurting a lot more than me, and I’m beginning to care, honestly care, about them.
What were once slender threads were now becoming cords. And the fabric of meaning behind my suffering was beginning to take shape. Life, I was discovering, was worth living.
Is Weaving the Threads Worth the Effort?
That’s all well and good for me. And it’s all well and good for Viktor Frankl. But a quadriplegic and a death camp survivor can’t simply paste the threads of our experiences on others who want to sidestep their suffering. What about someone like Larry McAfee, a civil engineer who was paralyzed from the neck down in a motorcycle accident and whose life was being sustained on a ventilator?
Unable to move out of a nursing home and unable to breathe on his own, Larry asked the courts to allow him to pull the plug on his ventilator and die. The court petition simply stated that Larry “has no control over his person and receives no enjoyment out of life.”
I wasted no time in writing Larry.
Dear Larry,
Like you, I’ve experienced being reduced to just existing— the basics of breathing, eating, and sleeping. Lying there, I felt as though my experience represented every human (it’s just that the rest of the human race didn’t realize they were merely breathing and sleeping—they were too busy being on their feet with a lot of distractions). After much thinking, I realized that there had to be more to life for everybody than just mere existence. And if not, then why not everybody “pull the plug,” no matter if they were disabled or not!
In a way, I felt as though Viktor Frankl were looking over my shoulder from his bunk bed in that concentration camp. He would agree that there had to be more to life than just existing, going through the motions, getting born and then growing old and then dying. But I wanted to take it a step further from the advice of the psychiatrist; I wanted to talk to Larry about God. I continued my letter:
At that point, I came to the conclusion that there had to be a personal God who cared for me and everybody else if, indeed, life was to make sense. There must be a God . . . and if not, then the whole human race should put a gun to its head if it wants to. But humans are too unique, too significant to just put ourselves out of our misery if we can’t handle suffering. No, there must be a God who cares. There must be.
As I wrote, I wished there were no pages between Larry and me. I would have given anything to wheel into his room and angle my chair close to his bed so he could see me through the tubes and machines. If we were together, I’d confess how I, too, at one time wanted to sidestep the process of pain.
And I would tell Larry that God knew exactly how we both felt. God wasn’t holed up in an ivory tower in the corner of the universe. He suffered too. Even Jesus was tempted to give in. He even sought, if possible, to avoid the suffering of the cross, pleading, “Father, if you are willing, take this cup from me.” In Gethsemane as the shadow of His death approached, Jesus felt alone and distressed with no one around who could understand. So He turned to His Father, the only one He could talk to: “And being in anguish, he prayed more earnestly.”
And then, if I could have been sitting next to Larry, I would have told him that Jesus’ decision to face the cross squarely secured a deeper meaning for the suffering of us all—more meaning than we could possibly imagine.
As I dropped my letter to Larry into the mailbox, I hoped he would find his own few brightly shining threads of meaning. But virtually the next day, I saw the headline: “Judge Rules Quadriplegic Entitled to End Own Life.” My shoulders slumped when I also read that the judge said, “The ventilator to which he is attached is not prolonging his life; it is prolonging his death.” A petition included an affidavit stating, “‘I understand turning off the ventilator will result in my death,’ signed by a shaky ‘X’ made with a pencil held in McAfee’s mouth.”
That made me, an activist and advocate, steaming mad! If that judge had been approached by a poor minority woman who could no longer endure racism, sexism, and poverty, and she wanted aid to end her life painlessly, the woman would have been refused flat-out. In fact, she would be offered support in seeking better housing and a job—and well she should! But when a person with disabilities like Larry McAfee declares the same intention, people assume death is his best option.
Back to Larry’s story. What happened next was a little confusing. For some reason, he decided not to have himself removed from the ventilator. Next, Larry was transferred from the nursing home to another facility. His story dropped out of the papers, and I was unable to hunt up his new address. I had no idea where Larry was or what he was thinking, but I kept pulling for him from a distance, praying he would find those threads of meaning for his life.
Finally, after several years, I tracked him down. I was itching to find out why he decided to live, so I called him up. We chatted for a few moments, talking about quadriplegia and pressure sores, and then I got a little more serious. “Larry,” I asked, “why did you decide not to follow through on assisted suicide? What was your reason to keep on living?”
He managed to speak between huffs and puffs of his ventilator. “Because I’m not forced to live in an institution or hospital anymore. I’m living in a little independent-living house with two other guys in wheelchairs. It’s a lot more enjoyable with a lot less pressure, less rigid. You can set your own schedule. As long as I’m not forced to live under the conditions of the state, then I consider life worth living.”
My eyes lit up. I inhaled deeply and then exhaled slowly. He was right. Too many severely disabled people feel trapped, even warehoused in institutions. Saving people’s lives and rehabilitating them are pointless goals if they are denied the right and the means to control their lives. I prodded him a bit more. “So it’s a chance to forge friendships, pursue hobbies?”
“Yeah, just to feel more human.”
“What was it like in the institution?”
Larry paused a moment. “I just existed from day to day. But here I’m able to meet people on an equal basis.”
This man sounded like he found his brightly shining threads. Slender, just a few of them, but threads strong enough to weave meaning into his life. As I listened, I kept whispering thanks under my breath. As John Donne poignantly wrote, “Any man’s death diminishes me,” and Larry’s death would have diminished me, especially me, another quadriplegic!
I dared one more question. “Any advice you can give to people who, like you and me, can’t use their hands or legs, maybe they’re in wheelchairs?”
The line went quiet, and I could tell he was thinking. “I’ll be honest. If a person, after years of trying, feels like he can’t go on, then I feel it’s within his right to . . . well, you know.”
My spirits sagged a little. But I was thankful that he, at least, felt like he could go on. And I took comfort from the fact that his decision to live had most assuredly inspired others to do the same. Just then Larry added, “But I’d tell them, ‘Don’t rush into any hasty decisions, but give things a lot of thought and time. Don’t try to conform to society. Give it time. Seek some guidance, not only from God, but from friends and family too.’”
Friends.
Family.
God.
These were the brightly shining threads in his life. Warm, caring, available people who accepted him, brought him out of social isolation, listened to his anger, helped him discover truths about himself, and encouraged him to interpret his future as a friend.
They were people who circumvented the crippling health care system that had sentenced him to an institution and denied him the self-determination to live independently. They were people who put together the concept of the little independent-living center, who recognized Larry’s freedom to set his own schedule and live as he wished. They were people who became his friends at the center and, from what he said at the close of our phone conversation, perhaps even helped him find God.
Larry learned what every hurting person who chooses life discovers: answers most often come in the form of people rather than legal rulings.
Helpful Information and . . .
People. I don’t think Larry would have made it without them. His was a burden that needed bearing. His misery needed mercy. He didn’t need an argument, a rational discussion, or placement in a suicide-prevention program. What he needed was a few people ready to give practical love, the kind of love that has its sleeves rolled up. And Larry’s friends weren’t the type to point him to an inspirational internet meme with a fancy font. They helped him to live, love, fight, breathe, and make his life his own.
Men and women said to Larry, “Choose life.”
Friends said to me, “Believe in God.”
Even Viktor Frankl said to thousands in despair, “Suffering can have meaning.”
And thankfully, these people did not wad up truths into clichés and platitudes to be tossed at us who hurt, while they stood at a distance. “Believe in God” glowed with the warm heartbeat of love that was as real as flesh and blood. “Choose life” were words spoken straight ahead with a smile that included, that invited. “Suffering can have meaning” was the comfort that gently enfolded.
Helpful information is not enough. No one comes out of despair alive without a caring friend on the other side. For, as Ecclesiastes 4:9–10 reads, “two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up. But pity anyone who falls and has no one to help them up.”
You cannot, you must not, suffer alone. It matters to the point of life and death.
Questions for Discussion and Reflection
It’s about You
You’ve spent time deciding on other people’s scenarios. Now it’s time to write your own. About you! Choose an issue—death, health, or disability—and make up a scenario with some pertinent details.
Now answer the following questions and share them with the group.
1. What impact will the medical crisis you’ve described have on you? Be honest. You know how you’ve responded to crises in the past. Use that experience to picture what would happen to you:
• emotionally
• in your relationship with other people
• in your relationship with God
2. What good do you think could come out of your situation?
3. How might you grow in your relationship with God?
4. What might you pray in the midst of your issue?