Section 37
DO YOU REALLY WANT TO LIVE?
“Would you kindly see her, Ravi? But be prepared for a shock.” With those words, I was requested to meet a seventeen-year-old young woman whose story is tragic and in some ways terrifying. But it is at the same time a triumphant story of a human spirit that has conquered a sustained indignity. Her parents are European. She is a young Chinese girl, born with an extremely rare birth defect that is known by the medical name of harlequin ichthyosis.
Harlequin ichthyosis is a severe genetic skin disorder. Infants with this condition are born with very hard, thick skin covering most of their bodies. The skin forms large, diamond-shaped plates that are separated by deep cracks or fissures. These skin abnormalities affect the shape of the eyelids, nose, mouth, and ears, and limit movement of the arms and legs. As the name would suggest, the skin resembles the scales of a fish, and as the skin is produced at an abnormally high rate, the constant shedding gives it a pinkish-red hue. Combined with the disfigurement of the features, the sight can be quite terrifying.
As they came into the hotel lobby, I met the lovely couple who adopted this little girl when she was only three. They are writing her story in a book. It is one of the most incredible situations I have ever seen with my own eyes. We all know that every life is a story. Sometimes the story takes on bizarre twists and turns. Seldom do we choose to make a tragic story part of our own lives. And when we do, we often underestimate how deep the anguish can be.
Our lives are shaped by others literally from birth, and even the best of intentions can result in the most unexpected of hurts. Each of us starts off with a minimum of understanding, needing a maximum of input. We gradually reach the middle stage of childhood when the input into our lives is both from others and from within ourselves. We process more intelligently all intimations of reality, both from our own promptings and from our experience. Finally we become adults, with a sovereign will and the awesome responsibility of making our own decisions. But every now and then a strange thought occurs to us: Are we really ever completely our own person or have we been conditioned in ways beyond our own imagination?
I have pondered long and hard the question of why people turn to God. I remember a woman from Romania telling me that she was raised in a staunchly atheistic environment. They were not allowed to even mention the name of God in their household, lest they be overheard and their entire education denied. After she came to the United States, I happened to be her patient when I was recovering from back surgery. When I had the privilege of praying with her one day, she said as she wiped away her tears, “Deep in my heart I have always believed there was a God. I just didn’t know how to find him.”
This sentiment is repeated scores of times. More recently, I had the great privilege of meeting with two very key people in an avowedly atheistic country. After I finished praying, one of them said, “I have never prayed in my entire life, and I have never heard anyone else pray. This is a first for me. Thank you for teaching me how to pray.” It was a gripping moment in our three-hour evening, and it was obvious that even spiritual hungers that have been suppressed for an entire lifetime are in evidence when in a situation where there is possible fulfillment.
Although I agree that the problem of pain may be one of the greatest challenges to faith in God, I dare suggest that it is the problem of pleasure that more often drives us to think of spiritual things. Sexuality, greed, fame, and momentary thrills are actually the most precarious attractions in the world. Pain forces us to accept our finitude. It can breed cynicism, weariness, and fatigue in just living. Pain sends us in search of a greater power. Introspection, superstition, ceremony, and vows can all come as a result of pain. But disappointment in pleasure is a completely different thing. While pain can often be seen as a means to a greater end, pleasure is seen as an end in itself. And when pleasure has run its course, a sense of despondency can creep into one’s soul that may often lead to self-destruction. Pain can often be temporary; but disappointment in pleasure gives rise to emptiness… not just for a moment, but for life. There can seem to be no reason to life, no preconfigured purpose, if even pleasure brings no lasting fulfillment. The truth is that I have known people who in the peak of their success have turned to God, and I have known others, drowning in pain and defeat, who seek God for an answer. Either extreme leaves haunting questions. God alone knows how we will respond to either.
This struggle between pain and pleasure, I believe, gives spirituality a more defined goal. People in pain may look for comfort and explanations. People disappointed in pleasure look for purpose. Dostoyevsky defines hell as “the inability to love.” I think that is a pretty close description. But this is where, I believe, the West has lost its way and stumbled into the New Spirituality. We had what it took to experience pleasure, but in the end, what we experienced took from us what we had in terms of value. Pleasure disappointed in the West, and in our boredom, we went searching for an escape in the strange or the distorted, rather than looking to what God has clearly revealed in the underpinnings of the Christian faith that point to the person of Jesus Christ.
When we indulge in pleasure to the point that it destroys the value within us, the ends to which we will go, both spiritually and pragmatically, lead us into the quicksand of our own pursuits. Looking into the face of one born with a deformity may cause fear or revulsion within us and the desire to look away, but plundering pleasure to the point of creating spiritual deformity within the soul causes us to run from ourselves. We understand so little how to define life’s purpose because we have chased pleasure for pleasure’s sake and have come away empty.