Dinah has Prader-Willi syndrome (PWS), caused by a random deletion or mutation of chromosome-15, which is typically not inherited. PWS affects one in every 10,000 to 30,000 people worldwide. At birth, they have weak muscle tone (hypotonia), difficulty eating, poor growth, and slow development, resulting in a high infant mortality. They have distinctive facial features like a narrow forehead, almond shaped eyes, and a triangular mouth. They are also typically small in stature, have small hands, and feet. If they survive infancy, during childhood they develop an insatiable appetite resulting in chronic overeating (hyperphagia) and food hoarding often resulting in morbid obesity. People with PWS have significant intellectual impairment, low IQ (in the range of 40-60), and learning disabilities. Most suffer from temper outbursts, stubbornness, and compulsive behaviors like picking at their skin. PWS people require a lifetime of care and supervision and while life expectancy continues to improve, the average age is forty, more often dying of complications that result from morbid obesity.
Dinah fits the general profile of a PWS person, except for two anomalies. What had further complicated Dinah’s situation was that she had suffered from pneumonia and a 108-degree temperature at nine-months-old. My mother had kept Dinah breathing using CPR while my dad drove them to the nearest hospital over an hour away. Some doctors have speculated that the high temperature and lack of oxygen caused brain damage, subsequently effecting Dinah’s future ability to form words and sentences. Still, Dinah has beaten the odds of survival due to PWS and her lack of ability to communicate effectively. Leading to the second unusual aspect of her life, as I write this in 2016, at sixty-one Dinah is the oldest known living Prader-Willi in Arizona.
In 1998, while at ArtWorks in Tucson, Arizona, Dinah created a piece of art she titled Blue Jesus. It is an 8x10 linocut print. She carved her childlike stick figure of Jesus on the cross, onto a large piece of rubber-like material. From that carving, one print was made and I have it. Jesus’ head is oval as is his mouth. His eyes are somewhat square in shape. The eyes and the mouth are hollow; there are no pupils, neither are there teeth, just simple shapes. The trunk is a square box, out of which the arms extend at odd angles. The bottom half of the trunk in distended from which the legs jut, neither equal in length nor width. The arms and legs are not in proportional balance with the trunk. The way Dinah drew the figure it appears to be androgynous. Her sketch of Jesus makes him look misshaped, strange, odd, broken—disabled. Around the cross, she carved out, what look like, tears drops radiating upward from the cross. When the ink was applied, Jesus became aquamarine blue and the tears drops, dark red. Our eyes are drawn to the center of the painting by the contrast of the colors, as if it were a mandala.
I think Blue Jesus is Dinah’s self-portrait. Her art speaks for her, if only we can listen to what she and Blue Jesus have to say. Sometimes when my sister is trying to tell me a story, I simply don’t understand what she’s saying. If she gets weary of trying different ways to help me figure out what she’s trying to tell me, she’ll say, “You no hear me.”
In Jesus’ parable of the Lazarus and the Rich Man (Luke 16:19-31), I think Jesus might be feeling a bit of my sister’s pain. At the end of the story, Jesus says almost in frustration at not being listened to, “Even if someone were to rise from the dead, we wouldn’t listen to them.” I wonder if Jesus were still roaming around the earth today, 2,000 years old, would we listen to what he would have to say? Or would he simply be a freak of nature and someone we’d become so comfortable seeing that we’d stop listening? Like yesterday’s news as it were, no longer a novelty.
Today it seems that those who profess to be Christians don’t pay much attention to Jesus’ teachings. Jesus’ statement that we should love our enemies seems to be long forgotten. Most of Jesus’ teachings are difficult to follow, if at times, impossible—I imagine for most, much easier to ignore. For what seems to be the majority of those who call themselves Christians, it appears to be more convenient to worship Jesus, which he never asked us to do, than to follow his teachings—like love our enemies.
I wonder if Jesus were blue, would that make him interesting enough to listen to? Or would we find Jesus saying to us, “You no hear me?”
Amazing Grace Redux | Cyndi McCoy
6 days ago