In The Upside of Irrationality Dr. Dan Ariely describes an experiment that tests how people respond when the meaning of their work is diminished. The test condition is referred to as the Sisyphusian condition. The two main conclusions of the experiment are that:
- people work harder when their work seems more meaningful;
- people underestimate the relationship between meaning and motivation.
This epic myth and Camus' interpretation resonate with me as the parent of a severely disabled child/adult. Meaning is crucial to the ongoing commitment to care and to care with enthusiasm and commitment. That care is clearly similarly analogous to rolling the rock up a hill, to making great progress and strides forward and to have the rock slip back down. We balance increased comfort, increased development, increased presence with consecutive regressions...respiratory difficulty, spasm, contracture, rigidity. The pendulum swings back and forth as scoliosis diminishes, hips sublux; as hips normalize feet rotate. Today breath is normalized, tomorrow it is shallow and raspy, the next day, normalized. Steps forward and steps backward. The persistence of the journey must continue. Our commitment to his therapy must be unwavering despite the soul weary residuals. The force on the rock cannot be mitigated by circumstance. Our meaning comes from the "work." Nothing else matters.
In that daily effort in which intelligence and passion mingle and delight each other, the absurd man discovers a discipline that will make up the greatest of his strengths. (The Myth of Sisyphus)
And, so, as parents of severely disabled children, meaning comes not from getting on with our lives; it comes not from making sure that we have a life; it comes not from closely knit circles of family and friends. Nor does it come from great literary contributions to humanity, nor from scientific discovery, nor the accumulation of money and possessions. It comes not from curing our son or daughter nor from having the world appreciate the "miracle" of our child, nor from teaching others the value of caring and the sins of indifference. Meaning does not come from our advocacy or our advice to others; it comes not from sharing our wealth of accumulated knowledge of disability. Our meaning comes from the unwavering, unceasing rolling of the stone up the mountain, day after day, year after year for as long as it takes. We have a privilege of meaning that so few others have the opportunity or desire to pursue.
| The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They had thought with some reason that there is no more dreadful punishment than futile and hopeless labor. The Myth of Sisyphus The Myth of Sisyphus. |
| Opinions differ as to the reasons why he became the futile laborer of the underworld. To begin with, he is accused of a certain levity in regard to the gods. He stole their secrets. The Myth of Sisyphus The Myth of Sisyphus. |
We have the privilege of stealing the secrets of the gods ...that the belief of the gods was that there was no more dreadful punishment than futile and hopeless labor and their belief was wrong. There is wonderful and powerful meaning which accompanies the rolling of the rock. The gods were wrong and it is parents who daily care with passion for their disabled children that have proved the gods wrong. We have discovered meaning and daily battle never to lose what we have gained and learned. Our lives are our meaning because we have chosen our work with a fierce determination. As Mary of Magdala spoke in her gospel, "...know ye not that ye are all gods?"
I see many people die because they judge that life is not worth living. I see others paradoxically getting killed for the ideas or illusions that give them a reason for living (what is called a reason for living is also an excellent reason for dying). I therefore conclude that the meaning of life is the most urgent of questions.The Myth of SisyphusAbsurdity and Suicide
We are the privileged...the parents of the severely disabled. We need not search for meaning. It has been given to us as a gift. We simply need to accept it. What others struggle a lifetime to decipher, we have been given in an instant. Embrace of the gift is all that is required.
