Personal: Meeting Aunt Rita and Uncle Tommy
Watching the Reagan funeral.
A strange episode of life yesterday. I met my Aunt Rita and my Uncle Tommy. For the first time. I think I was almost a teenager before I ever even heard of this sister and brother of my Mom's. My Mom's side of the family carries a potential genetic flaw, a disease called PKU (short for something chemical that I can't remember) that results in an inability for the body to process a certain amino acid. The cumulative effect of this amino acid getting into the body is a progressive mental retardation. A damage-preventative therapy exists now, which is great, as my little cousin Jessie has the disease, but with the following of a special diet she has escaped the effects and is now a fabulously cute and intelligent little girl.
But this therapy was not worked out at the time of the mid/late forties when my aunt and uncle were born: only by the early 1960s. By being fed a normal diet, their mental capacities were destroyed. In later life, they were permanently committed to a state institution when their care became beyond the capacities of their family. And therefore I had never seen them, or for many years even heard of them.
But yesterday I got that chance after having been in Milwaukee for a follow-up appointment with my surgeon ("You don't even look like you had surgery!") and then a stroll with my Mom and my aunt Pat through the Public Museum's "Quest For Immortality" exhibit--the largest touring exhibit of Egyptian artifacts ever in the U.S.; even bigger than the Tut exhibit I saw when I was a kid. When we left town, we headed not back toward Madison, but to the state institution.
Rita had been in the hospital for a few days with pneumonia. She was sitting in a wheelchair when I first saw her, away from the other patients in a room with a television on tuned to cartoons and rain falling softly on the windows overlooking a pleasant, tree-filled yard. She was trembling in a way that puzzled everyone, and her eyes and head moved constantly, as every new sound and movement drew her attention. Mom and Pat instantly began talking with her like you would with a very small child, and indeed, Aunt Rita has a mental age of something around one year. I found it difficult to know how to talk with her. Mom and Pat were used to her, having lived with her for years as a child and then continuing to visit her here as the years go by. But it was tough to do baby talk with someone who, despite the slack of severe mental retardation in her face, still looked like an aunt of mine. When I asked her if she was looking at the rain, she said "Rain!" loudly and slowly as she looked outside. She was also able to say and wave good-bye to me later on, and at one point gave me a high-five and laughed. And that was really the extent of my interaction with my aunt.
My uncle Tommy, as I was warned, was much more distant. He lived in a different building (Rita had been in the infirmary). He walks quickly, in almost a stalk. He was brought in to the room where we were and immediately sat down and would not look at us. Mom and Pat remarked on how still he was. We sat with him for a time, and a few words were spoken by us, but he remained distant, which I'm told is normal for him.
And that was pretty much it. I could see my grandfather, who I never knew since he died when I was one, in his face. It was just such a sad thing to see lives that had been so limited, had been so deformed. They were still infants. And I realized that an infant is cute and precious at one year old, but so sad at 58. I tried to see past that, though, and look at the child-man and child-woman who still just needed to be loved. But it was all kind of overwhelming.
A strange episode of life yesterday. I met my Aunt Rita and my Uncle Tommy. For the first time. I think I was almost a teenager before I ever even heard of this sister and brother of my Mom's. My Mom's side of the family carries a potential genetic flaw, a disease called PKU (short for something chemical that I can't remember) that results in an inability for the body to process a certain amino acid. The cumulative effect of this amino acid getting into the body is a progressive mental retardation. A damage-preventative therapy exists now, which is great, as my little cousin Jessie has the disease, but with the following of a special diet she has escaped the effects and is now a fabulously cute and intelligent little girl.
But this therapy was not worked out at the time of the mid/late forties when my aunt and uncle were born: only by the early 1960s. By being fed a normal diet, their mental capacities were destroyed. In later life, they were permanently committed to a state institution when their care became beyond the capacities of their family. And therefore I had never seen them, or for many years even heard of them.
But yesterday I got that chance after having been in Milwaukee for a follow-up appointment with my surgeon ("You don't even look like you had surgery!") and then a stroll with my Mom and my aunt Pat through the Public Museum's "Quest For Immortality" exhibit--the largest touring exhibit of Egyptian artifacts ever in the U.S.; even bigger than the Tut exhibit I saw when I was a kid. When we left town, we headed not back toward Madison, but to the state institution.
Rita had been in the hospital for a few days with pneumonia. She was sitting in a wheelchair when I first saw her, away from the other patients in a room with a television on tuned to cartoons and rain falling softly on the windows overlooking a pleasant, tree-filled yard. She was trembling in a way that puzzled everyone, and her eyes and head moved constantly, as every new sound and movement drew her attention. Mom and Pat instantly began talking with her like you would with a very small child, and indeed, Aunt Rita has a mental age of something around one year. I found it difficult to know how to talk with her. Mom and Pat were used to her, having lived with her for years as a child and then continuing to visit her here as the years go by. But it was tough to do baby talk with someone who, despite the slack of severe mental retardation in her face, still looked like an aunt of mine. When I asked her if she was looking at the rain, she said "Rain!" loudly and slowly as she looked outside. She was also able to say and wave good-bye to me later on, and at one point gave me a high-five and laughed. And that was really the extent of my interaction with my aunt.
My uncle Tommy, as I was warned, was much more distant. He lived in a different building (Rita had been in the infirmary). He walks quickly, in almost a stalk. He was brought in to the room where we were and immediately sat down and would not look at us. Mom and Pat remarked on how still he was. We sat with him for a time, and a few words were spoken by us, but he remained distant, which I'm told is normal for him.
And that was pretty much it. I could see my grandfather, who I never knew since he died when I was one, in his face. It was just such a sad thing to see lives that had been so limited, had been so deformed. They were still infants. And I realized that an infant is cute and precious at one year old, but so sad at 58. I tried to see past that, though, and look at the child-man and child-woman who still just needed to be loved. But it was all kind of overwhelming.