Our guest blogpost this month is adapted from an essay by Dr. W. Thomas Boyce, acclaimed author of The Orchid and the Dandelion: Why Sensitive Children Face Challenges and How All Can Thrive. In this excerpt, Dr. Boyce reflects on one of his patients, a seven-year-old afflicted with a terminal disorder called mucolipidosis. The disease, slowly progressive, usually ends in death from heart or lung failure within the first decade of life.
Over the years of Blake’s short life, the unabated metabolic hoarding of carbohydrates had severely deformed and retarded him. His eyes were clouded and protruded from his face as did his tongue, like the overstuffed contents of a pastry shell too small to contain it. The gums surrounding his peg-like teeth were similarly engorged and frequently bled when disturbed. His massively swollen heart was failing, and he perennially threatened to drown in the secretions that flooded his airway. His chest and belly, glutted with a liver and spleen many times their normal sizes, had together become a single, reddened, congested globe from which four largely useless limbs projected. He was, in short, a small, grotesque tomato-of-a-boy whose appearance turned away even the most forgiving eyes.
Blake (not his actual name) also was not overly grateful for the abundant, cutting edge medical care being provided for him. I think he somehow sensed that he was nearing the end of his time, and he had decided that the sticks and pokes and serial examinations did almost nothing to allay the other torments that his disease had long prolonged. So, the approach of doctors, nurses, technicians, and all the other assorted hospital personnel was greeted abruptly with a raspy incoherent grunt and a flailing motion of his arm that meant, indisputably, “Get out of my face!”
Blake’s intolerance for the hospital and its staff, together with his unsavory countenance, made him a difficult patient for whom to care. His medical “care” was difficult by virtue of his resistance to our routines and procedures. But my own ability to humanly care for Blake also was compromised by the physical sight of him and by his stolid indifference or antagonism to my best efforts on his behalf.
One July evening, held in the hospital late by a series of unanticipated events, I approached Blake’s room at an unaccustomed hour. His young, single mom, who was at her own place of work for the daylight hours of most days, was sitting on the edge of the bed, deeply immersed in a conversation with Blake. I paused, and then settled at the door, transfixed by the scene before me in the darkened hospital room. Blake’s mom was talking to him. In hushed and comforting tones, she spoke of the day, wondering how things had gone, asking him about his new nurse, reviewing for him the events of her own day at work. As she spoke, leaning over her son, her hand stroked his forehead and hair in a mundane gesture that filled the room with her love for the boy.
Blake’s eyes, moist and utterly devoid of his stern resistance, looked up into his mother’s face, absorbing every moment, every piece of her presence there with him. Relaxed and more peaceful than I had ever seen him, Blake seemed to melt into his mother’s eyes. She stroked his round, swollen face and said to him, “Oh, my beautiful, little boy.”
Suddenly I understood what I had not understood: When this mother gazed at her bloated, dying son, she physically saw a person I had never seen. Transformed by her eyes’ willingness to see the child beyond the disease, Blake had become a different being, an individual no longer diseased and distorted, but a frightened child visibly changed by his mother’s love.
In the months since that night and since his death later in that same year, I often have thought of Blake and his mother. I have thought of how limited my vision of my patients has been, of the peculiar and short-sighted lenses through which so much of our vaunted medicine is conducted. I have thought of how mysteriously my own way of seeing Blake was irreparably changed by the experience of watching his mom truly see him and respond to him for who he, finally, was.
I have thought, as well, of Jesus and the clarity of his sight: his capacity for seeing through all the littered crustiness of a person’s life into the heart of an individual soul. I have remembered Jesus’ encounter with the Samaritan woman at Jacob’s well (John 4) and how terrifyingly he took in and captured the totality of that woman’s failed life. And, seeing the depth of her need and the desperation in her hidden thirst for the substance of life, he offered her living water, promising that whoever drinks of the water he provides will find an everlasting spring and a source of eternal life. Imagine the transformation that Samaritan woman must have experienced two thousand years ago! How the clarity of Christ’s gaze, burning like a refiner’s fire, reduced all of the complexity, ambiguity, and uncertainty of her broken past into a single vision of her greatest need, and then answered that need thoroughly and unconditionally.
I have been looked upon by the eyes of Jesus. At a time of extraordinary despair, so extraordinary that even now it is difficult to look back on it, I was gazed upon and touched by the presence of Christ in the most mundane of settings, at the most unexpected of times. Overwhelmed in those days with a crushing, killing vision of my own inadequacy for life, I found myself utterly surrounded, for a moment no longer than Blake’s conversation with his mom, by the palpable, unmistakable, and overpowering presence of God’s love.
In that moment, now many years ago, it was clear to me that I was seen for who I was and am. And that I was changed forever by the Lord’s willingness to look on me and find in me a creature worthy of his love and care.
The wonder of Jesus’ way of seeing people, such as me and Blake and countless others, is that it is a transforming vision. It is an instrumental vision that reaches into the essential character of the person and alters that character at its core. It is, miraculously, a way of seeing that is accessible to all of us and one that transforms not only the person seen, but also the person seeing.
…there is in the vision of Christ, even in the vision of Blake’s mother, a redemptive view in which all of the wonder, hope, and humanity that each of our patients bears along to us is not lost, but is seen. In that seeing there is a hope, I believe, for a better medicine. A new medicine that, along with all the helping professions, reaffirms that call for a clearer vision of the business of caring, and for new eyes and new ways of seeing.
Dr. W. Thomas Boyce, “Beyond the Clinical Gaze,” in The Crisis of Care, eds. Susan S. Phillips and Patricia Benner (Washington, DC: Georgetown University Press, 1994), 145-148. Used by permission.
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