An inside view of suffering
Jane didn’t even wince as the nurse undressed her wounds and cleaned with antiseptic. She couldn’t feel the pain. At least not that pain. Not the pain we expect. Not the pain she hadn’t felt for so long, the pain she missed to feel.
She felt a different kind of pain. One which she had learnt to hide with her unnerving smile and the thoughtful, deliberate, practiced way she answered questions. She had had enough time to practise. I could tell. As I asked the questions; some pointed, some vague, she would smile, look at me, and ponder. Sometimes no answer came.
She had heard these questions enough times in the three years since the accident. They had been three long years.
I mean, the actual year on the time-scale. Not the kind of year in which time is quickened by busy schedules and social gatherings. Not the sort of year which sees your suffering truncated by a milliard everyday concerns. No, the year in which each minute, each hour, each day drags along as you lie crippled, contemplating your painfully reduced circumstances, constantly gnawed by the uselessness of time, coming to terms with the pointlessness of such a reduced existence. Your mind wanders from a nostalgic past when you could walk, to envying those who still can, to bitterly fantasizing over a future that will never be. You are frozen into a persistent present, locked in place and time. Depression corrodes your sanity faster than pressure ulcers eat at your body.
The nurse did the wound care delicately, pressing here, swabbing there, careful to neither damage viable tissue nor leave puss behind. She too was well practiced. Before I was born, she cleaned her first chronic wound – she never can let me forget that. Yet even for her, these were among the worst. They dug deep into her tissues, eating away skin and muscle to expose the bone beneath.
Pressure ulcers, caused by prolonged pressure on the skin for those unable to turn, are the most dangerous affliction for people with spinal injury. They contribute to the greatest burden of morbidity and the highest cause of death for paraplegic and the elderly. But most importantly, they are a symptom of social problems. They indicate that that person has no social support, that they are left alone with no care at all. I needed to know how bad this was for her.
That meant asking questions. Asking questions as only a doctor can. For a while, she just smiled and gave generic responses. I prodded patiently. I lowered my voice to a near-whisper; that soft voice that projects concern, the kind which evokes empathy. I allowed the silence to linger, to rule over that vast distance that exists between any two people on a first encounter. If I could let silence weigh heavily on whatever it was that separated us, it would surely break it, destroy it so that we could construct a new platform for interaction. I had to do all that, to put in time, like one no longer under the clock. To immerse myself into her world – a world paralyzed, immobile, liberated from the tyranny of the clock. It is a strategy a doctor must employ when dealing with someone whose world has collapsed onto itself from prolonged suffering and sheer lack of love and hope. How could she open up when she’d forgotten how it felt to be cared for? How could she open up when even her own body, and mind, have turned against her – who she still is, who she believed herself to be? And most crucially, of what use was it when there was no hope of recovery?
Hope. It makes you walk down a dark, narrow tunnel for what lies at its end. In promising something, however slight, hope makes us vulnerable. But even hope succumbs to too much suffering. Not even hope can survive irreparable damage to the core of our humanity. Most people share their suffering because they hope some solution will be found. Not so when one is fully aware of the permanence of their loss.
Perhaps she could open up if she felt that my concern was genuine, not merely the required act of a duty-bound doctor.
A quiet, patient insistence was my only choice. This would need time. As I had learnt from encounters with chronically ill patients, time is the wondrous remedy. What wonders time can do? Didn’t time organize the universe after the big bang? Doesn’t it deliver a grown tree from a seed, a grown man from a child? Won’t it heal wounds, physical and emotional? Won’t time bring down the wall toward a meaningful doctor-patient relationship?
It did. Weeks later, with her physical wounds slowly healing, Jane’s hard self-protective shell weakened ever so slightly, allowing a glimpse into the insides – the bitter memories, the unfulfilled wishes, the bitterness. On a slow afternoon, I emerged from the ward to find her bathing in the warmth of the western sun, chatting with other patients. I greeted them on my way, but she rolled her wheelchair and held me back, pointing toward the empty outdoor bench. I looked at her, then the bench, then at her again, her face dominated by that smile meant to persuade, to win over. I allowed myself the luxury; to sit on a bench, let my aching feet rest, and listen to the tale of a life beleaguered.
“I knew it was going to happen. There was no other way that the journey would have ended. We had boarded the wrong bus. If you board a bus with a driver from hell, he will drive you straight to where he’s from. He was driving well past the legal speed, swerving precariously, overtaking impulsively. Someone, a young man with a foul tongue, sent him a verbal missile. You see, we are advised to speak out against reckless drivers. It is necessary, they say, to save you from him. But its effect, in this case, was the opposite. We all bowed our heads and prayed. It didn’t take long for the inevitable to happen. Through the guardrail, past the trees, down the slope. The impact must have been deathly violent. Most of the commuters never raised their bowed heads. Death took them as they prayed to be saved from it.
“I think I heard the impact on the guardrail, felt the jolt, and then it was all dark. A void.
“I woke to the miles of tubes and wires and the alarming bleep of ICU machines. They told me I had been there for several days already, comatose, feeling nothing, hearing nothing, remembering nothing. It was terrifying, that return to reality. I wished I had remained in that other world. I still wish there was permanence to that liberation from depressing memories, from pain, from senses, from this side of life to which I am confined. I wondered how I would live. What was it to re-enter life this way? Wouldn’t death have been the merciful way to go?
“I remained in the hospital for a long time. My life had been transformed, the lower half of me no longer part of the feeling, moving body I’d hoped I would inhabit all my life. It’s shocking to know you are not entirely yourself, that a part of you has become a liability. Reality is turned on its head. It’s like waking up to find two suns in the sky, or say, half of the one we know. What a shock it could be. What a shock it is, to be one day yourself, and the other a being you cannot recognize, let alone accept.
“It’s easy, of course, to understand the physical loss of a paraplegic like me. As for the rest of it, no one can fathom. You can no longer be whole. You are no longer free-to move, to be. Your life is severely abbreviated. You lie there, replaying the moments of your past, mulling over what could have been. You live in a perpetual past; a clock stuck at a moment when your world stopped. It is a kind of prison. Bitterness and self-pity eat away at your being just as physical pressure digs sores into your paralyzed, benumbed lower half.
“In its absence, you gain an understanding of why the ability to move is an essential quality of being alive. It is a defining quality of human wholeness. It is the very essence of freedom. To lose it is to lose access to everything life is about. It is to be denied the experience of the fluidity of life. All aspects of you are fixed in place and time. Every day is the same. You live in a persistent present; a frustrating monotony interrupted only by memories of a past you can no longer count on. To think of a future only depresses you.
“The worst thing for people like me is the disintegration of your social and professional life. The people who once were a part of your life go on to their pursuits, leaving you behind, forgetting you. Not even family is immune to the ravages of constant dependency. You wear people out. Soon you find yourself completely alone. And thus begins the real suffering, mental torture of the sort you cannot imagine. It is a descent into a dark existence from which only death can save you.
“Why would I want to talk? What can I expect from it? Can I ever hope to be understood, even by a doctor?”
“No, I can’t.”
“I have seen enough of them. I have told more than I should have, expected more than they could offer. And left, each time, with nothing except my pain.
“It’s always better to hope for nothing because then you cannot be disappointed. But that means accepting your circumstances. It means accepting that which is unacceptable. It means to be acquainted with the darkness of a meaningless existence.
“But it’s hard, you know, to edit hope out of your life. A human being is wired to hope, to expect – from oneself, from one’s body, from society, from nature, from life. All have failed me. Worst of all, I feel I have failed myself. It’s irrational to think so, I know, but it just won’t go.
“It is not easy for any human being to accept the help of another, even what one is a helpless paraplegic like me. Suffering hardens us. You go through so much, and you learn to harden yourself because being vulnerable makes you suffer more. When you’ve lost everything, lost the love and care of those close to you, you learn to hate yourself. You learn to if others deny you love because of your reduced circumstances, deny you the care that anyone in your shoes would want, self-hate takes over. You hate yourself, you hate life, and you hate everything. It is like retreating into a concrete bunker, shutting out the rest of the world and vegetating. But when a little caring, genuine and enduring is shown to search a person, it defeats the need for that bunker. I mean, the care you have for us patients means a lot more than the healing wounds and lungs. It has allowed some of us to rediscover a side of our humanity long lost due to pain and neglect. We leave this place soon, determined to find ways to live meaningfully, suffer meaningfully, because if one person can find us worthy enough to care for day and night, we should find a worthy purpose to live for in spite of, even because of the circumstances life has dealt us.”
She choked back tears. She turned her head the other way and let the tears flow. Her stoic self had cracked. I knew I could treat the wounds on her back, the ones on her heels too, but not the ones deep within her being, not the ones from which those tears came. Where I had seen my limits as a doctor, when I had reached the edge of the accessible person, she had deciphered through my attempts a call to a better experience of suffering. She had put it across so well, enough to help me understand the inexhaustible power of empathy at a time when I didn’t consciously strive to be extraordinary in my work, or life.
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