Fear of Being Alone

        The world’s oldest conjoined twins died last week at age 62. They lived most their lives in Reading, Pennsylvania, which is where my mother’s family is from. My youngest aunt is the same age as the twins, and was born with Rubinstein-Taybi syndrome, a genetic condition that was only recognized a few years before she was born. She is mentally disabled; she can speak but her conversation and ability to comprehend are severely limited. My grandmother took care of her until she was too frail to do so, then both went to live in assisted living facilities.

        Lori and George were not mentally impaired, and lived on their own starting in their twenties. Their skulls were attached at the forehead, and they shared some brain matter and blood veins but were otherwise two distinct individuals. George was much smaller, the size of a child, and rode in a specially designed stool. 

        My mother told me once that when she was taking her sister shopping, they turned an aisle in the store and the twins were there. My aunt had immediately said, “Oh, hi Lori. Hi Dori.” Apparently they knew each other from a work program they had both been part of years earlier. 

        I asked my mother if she had heard the news of their deaths, and if she remembered the story of running into them. She said she had no memory of it. I wondered if I had made it up. But The scene is so clear in my head, where did it come from? She did say that my grandmother used to brag that she knew them when she volunteered at the facility they lived in when they were young. She had tried to get my mother to work there, but my mother said when she visited she was too disturbed by the conditions. All the beds were like cages, she said, and the place stank of urine. 

        It’s fortunate that the twins were able to get out and live on their own; it seems that they had a supportive community of family and friends. There are interviews with them online, in which they talk about their lives. George aspired to be a country and western singer, and for a while went by the name Reba, ultimately identifying as a man and changing his name to George. Lori had a number of boyfriends and was even engaged once, though the man died in a car crash before they could get married. I can't help but be fascinated by the footage of them navigating the world. They come across as completely accepting their condition, and say that they cannot imagine their lives separated. 

        My aunt still lives in a small care facility in Reading. My mother takes her out shopping and to mass once a month. They always go to Friendly’s, and my aunt always orders hot dogs and mac and cheese. She is usually good-natured, but any disruption to her routine is met with childlike sulkiness. Our grandmother always claimed that she was an actual angel from heaven. I used to roll my eyes at this, but now I think it’s nice to imagine that rather than bland, shapely beings, that a heavenly host could be obese with a trach tube and a 40 point IQ, or that two could be fused together at the forehead, making us marvel at what it must be like to never be alone.