Joseph Cramer, M.D.: Acknowledge our hurt, but get up out of the mud
We probably all know an eternal optimist. I’m not talking about a lifetime member of the Optimists service organization. Instead, these are the people who are excited by a room full of horse manure because they know there is a pony in there somewhere.
In the book "The Religion of the Samurai" by Kaiten Nukariya, Hisa-nobu is described as “one of the happiest persons that Japan ever produced, simply because he was ever thankful .” It tells how he falls in the rain, bloodying his knees. He then pulls himself from the mud and exclaims, “I got both my legs hurt, but, thank heaven, they were not broken.’ ” He does not deny the pain. His accomplishment is to release the discomfort and be grateful knowing it could have been worse.
One sees that optimistic attitude a lot in parents of kids with limitations. There is a mom with a child who has a chromosomal defect that for many patients is already fatal. Beyond the child's lack of normal cognitive functions, he is dependent on a machine to push air into his body. Many outsiders only see the disabilities. The mom who watches over him and loves him is not blind. She knows the pain.
Still, you get that idea that, even as she falls in the daily mud of his illnesses, she seems to get up and say, “My heart hurts, but, thank heaven, it is not broken.”
This week, for a very short and privileged time, I watched over another young boy who is nearing the fifth grade. In his creation, his spinal column did not close over his lower back. With this defect, there are no nerves passing beyond that point of malformation. Without the nervation, there is no function below the deformity. He does not walk or have urine or bowel control.
Unlike children conceived and born to a family, which prompts a biological kinship, this child was adopted. The new parents knew he was not whole. However, the mother acknowledges that they really didn’t totally comprehend all the problems associated with his structural flaw. They adopted him anyway. Now the mother is in the hospital at his side as a single parent. He is on a ventilator connected to the tube inserted in his trachea. Like any kid, he loves to eat, in spite of the food falling helplessly into his lungs. He joins us one more time to treat his pneumonia. The family prayers are “Give us this day his daily breath.”
Because of his faulty spinal construction, there is limited flow of the fluid that surrounds his brain and neural chord. This impasse backs up the spinal fluid. The excess has to be drained or it harmfully swells the brain. The tubes that drain the buildup are burrowed under the skin to the abdomen. These shunts have needed revision over 30 times. His life is tethered to an OR schedule, not a parent’s convenience, not a family vacation or an individual job or even a marriage surviving.
In spite of all of this, the mother gets up and exclaims in her own way, “My heart hurts, but, thank heaven, it is not broken.”
In spite of all the surgeries and all the pneumonias and all the tubes, the boy smiles and laughs without making a sound. You can tell he feels legitimate joy. Thank heaven his sense of humor is not broken.
For the rest of us who would not qualify as the happiest man or woman in our own skins, let alone in all of Japan, it is easy to condemn the happiness of others. We doubt their sincerity. We want to slap some sense into them. We want them to feel the pain we choose to embrace.
However, if optimistic happiness is what they say it is, then perhaps we need to acknowledge our hurt but then get up out of the mud and say, “But, thank heaven, I am not broken.”
Joseph Cramer, M.D., is a board-certified pediatrician, fellow of the American Academy of Pediatrics, practicing physician for 30 years and a hospitalist at Primary Children's Hospital and the University of Utah. Email: firstname.lastname@example.org
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