2. The Pain Is Real
The point of this life . . . is to become the person God can love perfectly, to satisfy His thirst to love. Being counts more than doing, the singer more than the song. We had better stop looking for escape hatches, for this is our hatchery.
PETER KREEFT
It has been more than ten years since the story captured the headlines, but still in the sphere of disability rights and the right-to-die movement, the name Terri Schiavo carries a world of meaning. Though much has been said about the complicated legal battle over the death of this woman who had severe disabilities, it remains confusing to many.
Terri Schindler Schiavo became disabled after an unexplained collapse and cardiac arrest caused severe brain damage. For most of us who first met Terri Schiavo through television news coverage, all we know of her is her diagnosis—persistent vegetative state (now generally referred to as unresponsive wakefulness syndrome)—and the few images her family circulated of Terri lying in a hospice bed in St. Petersburg, Florida.
And we know of the court cases.
After years of legal skirmishes over her guardianship and care, Terri’s husband petitioned the court system to remove Terri’s feeding tube, claiming it was what she would have wanted. Terri’s parents, Bob and Mary Schindler, fought hard to save Terri’s life. During the fourteen years of Terri’s disability, emotions ran high as this family’s private struggle to save their loved one eventually came under the harsh glare of a worldwide media spotlight. Reporters and cameramen rushed at this weary family as they exited courthouses and Terri’s care facility. Advocacy groups from both sides filed court briefs and circulated petitions as Terri’s feeding tube was removed and replaced, removed and replaced a second time, and then permanently removed in March 2005. From Florida courts all the way to the federal courts, Congress, and the president, the United States became an audience for the controversy of this family’s wrestling with the very real life and death questions of right and wrong in the eyes of God.
The issues were many. Was Terri really in a persistent vegetative state? What does such a diagnosis even mean? Could Terri benefit from medical advancements made during the fourteen years of her disability? Did her husband, Michael, accurately represent her wish to never be dependent on life support? In the absence of a written statement of desired care, who can make decisions for an incapacitated patient?
So many confusing pieces—it’s little wonder people finally threw up their hands and said, “Oh, let her die.” But this case was more than simply “letting” a brain-injured person die. Terri Schiavo was not terminally ill or brain-dead or in a coma; she was disabled. She was capable of interaction with her parents and enjoyed their visits. But she was under her husband’s guardianship. He believed further therapies or reevaluations would be futile. Even if authorities doubted the veracity of Terri’s state of consciousness and cognizance, reasonable doubt should have been enough to ensure she was kept alive while her case was exhaustively investigated. Even though multiple courts weighed in on her situation, there was never a full rehearing of the facts. Ironically, if Terri had been a criminal, new evidence could have been allowed for review, but that wasn’t the case. Instead, with these rulings, a woman with a severe brain injury was denied her rights, and she starved to death.
The Pain Is Widespread
The Schindler/Schiavo family and other families like them captured the spotlight because courts got involved in the decision making. More recent examples of people catching the public eye over life and death decisions include Brittany Maynard, a twenty-nine-year-old who moved to Oregon to die under the Oregon Death with Dignity Act. Both of these stories made headlines largely because of the pull on our heartstrings when we consider a beautiful young woman suffering pain and loss of quality of life.
But these people are the exceptions.
The vast majority of suicides of elderly, terminally ill, or even disabled persons occur quietly within homes and institutions, far from the media, the courts, and the public eye. These are hurting, despondent people who never make the news and only rarely your Facebook feed. These are the ones living a quiet desperation: The woman with cancer, seesawing in and out of remission. The young boy in a semicomatose condition, making eye contact, half smiling, and then drifting away again. The carpenter who broke his neck falling from a second-story window and now, abandoned by his wife, lives in a nursing home.
• Some are terminally ill but not imminently dying.
• Some are elderly and have entered the process of dying.
• Some are in a semicoma.
• Some are suspended in a persistent vegetative state with varying levels of brain function.
• Some are not dying at all. They are just plain depressed because of a mental, emotional, or physical disability.
• And many are the mothers, fathers, sisters, and brothers of these hurting people.
They would squirm in a spotlight. Probably just a few close relatives or neighbors are aware of their desperation. They feel alone and very lonely, afraid to draw too many curious onlookers into their circle of pain. But occasionally they or their families feel compelled to write about their journey of heartache and anguish. And a few of them write to me.
Dear Joni,
My sister Janet, who is twenty-three, was in a serious car accident. She had very critical lung and brain stem damage, and now, four months later, she is still in a coma, mostly unresponsive to life around her. She had a good life with friends, church, a straight-A student, a job as a physical therapist; now it all seems wasted.
If she had lost all her physical capabilities but still retained her mental ability, I could have accepted it so much easier. I’m really struggling with how God could possibly be glorified through this situation. To be honest, it is like a living death—the grief process doesn’t end because Janet is still “living” . . . I would please appreciate any helpful information you can send.
Joyce Hutt
I can imagine Joyce keeping vigil by the shadowy bedside of her sister, wondering, waiting, and hoping. But her letter captures something far more poignant. She poses an unspoken question: When, if ever, is life not worth living?
Joyce writes that she is looking to God, struggling with God. She doesn’t want to play God by the guardrail of her sister’s hospital bed, arbitrarily ruling that, yes, Janet should die or, no, Janet should live. Joyce’s sister is unable to speak for herself. Who has the right to say whether or not the life of another is worth living? Perhaps a few families like the Schindlers/Schiavos or the Maynards can bring themselves to openly ask the question and then act on the answer, but thousands like Joyce stand bewildered and confused.
My heart is gripped by her letter. Joyce has poured out personal and terrifying thoughts to me, a person she hasn’t even met. And tears filled my eyes when I read her last sentence: “I would please appreciate any helpful information you can send.”
It’s clear that Joyce and millions like her don’t want to make tragic moral choices. Instead, they want to know what is the right thing to do. They may not know how to phrase it, but they desire to understand the difference between prolonging death and sustaining life. Or for that matter, is there a difference?
How can I best help my family member who is terminally ill? Or elderly? Or dealing with a debilitating disease? Is it ever ethical or appropriate to disconnect someone’s life-support systems? If a loved one is dying, can’t we just let him or her die? Please tell me: Is there a difference between withholding medication and disconnecting feeding tubes or IVs? Show me what to do. Tell me what to say. Give me a tidy list of five easy-to-understand steps. Please, where is a neat conclusion to a painful situation? Yes, please give me helpful information.
What if I were to approach Joyce at her sister’s bedside and hand her a nicely typed list of dos and don’ts? Would that give her the tools she really needs?
What’s more, what if her sister awoke from the coma just long enough to speak her wishes?
She might want to live . . . she might want to die. She might react like the man in the following email:
Dear Joni,
I’m out of hope. [But I am wondering if] you might be able to help my husband, Ron, who was in an accident last year.
My husband is a pastor. The accident left him a quadriplegic. When he came home from the hospital, he continued to pastor from his wheelchair, but then two months later, he was back in the hospital with an infection. And there have been many infections since then and many visits to the hospital. Ron began to become depressed. He has now resigned from his church, and he does not get out of bed.
He doesn’t talk. If he answers a question, he only says, “I don’t know.” He doesn’t want to live anymore and doesn’t care about our family . . .
Beverly
What can I do? I thought. How can I reach Ron? Do I send a letter? Books? The name of a local counselor who runs a suicide prevention program? I have to do something. Yet I know it’s nearly impossible to sit down with someone like Ron to try to argue with reason and objectivity a case for “life worth living.” I’ve read the professional handbooks of counselors, and they all say the same thing: A person’s desire to commit suicide transcends reasoned argument.
So what good would ten objective arguments against suicide do to sway Ron? I could tell him about my own times of depression, but I’m no longer struggling in severe depression; I see things more clearly now, more objectively. But what does that matter to him? A huge chasm lies between his topsy-turvy emotions and my right-side-up reasoning, his frayed feelings and my coolheaded statements, his insensibilities and my sensibilities.
Still, I had to try. As quickly as I could, I called their home and spoke with Beverly. She tucked the phone under Ron’s ear. I could barely hear him breathe, and he was pretty quiet, even though I shared my story, shared some Scriptures, talked about prayer and heaven, and even sang a hymn. This man was a pastor; surely that would break through to him.
Nothing, nothing moved this guy lying there in a dark bedroom, shades closed. He only grunted at my encouragements. None of my impassioned reasoning or firsthand experience seemed to stir him.
Suddenly I had an idea. I remembered a scene from a movie. I took a deep breath and said, “Ron, have you seen The Shawshank Redemption?” Suddenly, I heard life on the other end of the phone. Maybe the abrupt change got his attention, because he answered! Yes, yes, he had seen that movie. Then I asked him if he remembered a scene at the very end where one character says to another, “Hope is a good thing, maybe the best of things, and no good thing ever dies . . . Get busy living, or get busy dying.” I got an answer there too. He remembered that scene. Then I said, “Ron, I want you to join me and ten thousand other quadriplegics this morning who are deciding to get up, get out of bed, and get busy living.”
Now, who could have predicted that a scene from an R-rated movie like The Shawshank Redemption would provide the elusive point for two quadriplegics in Christian ministry to connect? But it did, and from that moment, Ron started living again. He went on to become the national prayer coordinator for Marketplace Ministries, and he had a new ministry to hundreds of other hurting people. Ron went on to live another six or so years before complications of his disability took his life. But in those six years, he was able to see his daughter get married and to encourage many, many others.
True, people ready to check out of life, like Ron, can occasionally be talked off the ledge. But many times, rational appeals just don’t reach their target.
Helpful Information Isn’t Enough
This lesson was driven home through my old friend Ada Walker. Ada was my hospital roommate when I was first injured, and for more than a year, she and I shared a six-bed ward with several other girls. Ada and I were a lot alike. We were young, had been in accidents that left us as quadriplegics, and hated being disabled. We shared our pain, our bitterness, and our horrible fear of what would happen next, who would feed us, how we would be able to bear being dependent on others. Misery loved company back then, and Ada and I would spend long hours commiserating over cold hospital food and dirty sheets.
But that’s where the similarities ended. Over the long months of hospitalization, I noticed a change in Ada. Whenever I wheeled past her bed on my way to physical therapy, I observed the difference:
• Ada had given up. I was still fighting.
• Ada had quit. I was steaming mad.
• Ada had glazed eyes. Mine were ablaze with angry fire.
• Ada had stopped going to therapy. I went and worked hard just to prove to those jerky doctors that they didn’t know what they were talking about because I was going to walk.
• Ada saw no way out. I was ready to bust out the front door of the hospital.
• Ada sullenly shrugged her shoulders at God. I was ready to punch God in the nose.
Her roommates and I were troubled that Ada, during those long reclusive hours, was obviously plotting a deliberate and methodical suicide. Nuts! If I were to end it all, I would have careened off a high curb in a fit of explosive anger.
The numb, lifeless pall hanging over her bed told me she would give anything for pills or a razor. At that point, I was not facing the same suicidal despair. For the moment, anger fueled my energy to face each day, and suicide, as far as I was concerned, would have been a cop-out. Nobody had to convince me of the ethical, right, and appropriate action—it was to break out of that stinking hospital!
By the way, there was one more striking difference between Ada and me. Ada smoked like a chimney. I didn’t. I paused by her bed one day. She was puffing on a cigarette that was stuck in a little tray attached to a long tube, the end of which she clenched between her teeth. She inhaled the smoke deeply, as if to split the seams of her lungs. Then exhaling slowly, Ada would wait a few seconds and suck in the smoke again. “You’re going to kill yourself with those things,” I said, more than a little concerned.
Ada slowly blew out the smoke and watched it rise. “Can’t wait,” she coolly replied.
“Ada, you can’t be serious. Hey, we’re not going to let you take the easy way out,” I said, half joking as I looked around at our roommates.
Stony silence.
“Look,” I said, wheeling closer to her bedside, “your parents would really take it hard.”
She turned her head on the pillow and puffed further on her cigarette.
My friend, in spite of my best efforts to dispense helpful information, had made the judgment call. My feeble efforts at being objective fell flat. Life, Ada dispassionately believed, was not worth living. Years later, a lung infection sealed her decision.
Ada’s story is bittersweet. Bitter in that she purposefully abused her body in order to engineer an early death. Sweet in that perhaps a year or so before her death, Ada finally crossed that huge chasm between despair and hope and found life worth living. In that final year, she crossed the seemingly unbridgeable gulf from hopelessness to hope. Her topsy-turvy emotions turned right side up.
Whenever I returned to the hospital for a checkup, I always made certain to spend time with Ada. I would sit across from her, amazed. She had become one of the liveliest, most buoyant people I knew, inspiring and encouraging all of her old roommates and everyone else from the janitor to nursing supervisors.
But her spirit could not overrule the damage that had been done to her body. Not even new hope was able to short-circuit the death fuse she had ignited years earlier.
For Ada, even if information is what finally helped her over her suicidal despair, it arrived too late.
Questions for Discussion and Reflection
What Is the Right Thing to Do?
1. This chapter poses some agonizing questions for individuals and families facing life and death situations. Can you think of other questions people might face in addition to these?
2. Have you ever had to face the kinds of questions and the kinds of heartache and suffering described in this chapter? If so, share your experiences with others in your group.
3. Talk about practical ways to encourage individuals and families who face these struggles. Are there people in your life who need a word of hope from you today?