Thursday, August 14, 2008


Shouf was born special. At first, they just thought she was a difficult baby. She would scream like she was getting paid to do it. If my mother left my father in charge of the two babies (Kouf was already 15 months when Shouf was born), Shouf would pull the pacifier out of her mouth and throw it. I swear that was her way of saying, "okay, the gloves are off", then she would arch her back and scream until her face turned purple and she couldn't catch a breath. I think this is why my father left her alone in later years, he was kinda scared of her. (You go, Shouf! Yay for you! If the rest of us had known your secret, we would have done it, too!)

My parents had "Irish Twins". Shouf was born in January, 1962, Bouf was born in December, 1962. When Bouf started crawling before Shouf did, they knew they might have a problem on their hands.

The doctors started testing Shouf, but it took a couple of years before they gave a vague diagnosis. Mom won't talk about it, and I cannot find any information on the term I remember my father telling me. Whatever they called it, it meant Shouf was special.

What was happening was that something in my sister's brain was not wired correctly. Visualize a punch card that is not getting punched in all the right spots. It definitely punched on things like vocabulary, words and letters (she will kick your ASS at Wheel-of-Fortune!), but did not punch on things like reasoning, time, math and depth perception. Not unsimilar to
Savant Syndrome, but she is not autistic.

The doctors told my parents that the best course of action would be to institutionalize her, she would never be able to function in the real world. Thank God my parents basically told them to go fuck themselves. They brought her home and treated her like all the rest of us. They never told her she was different, so she never thought she was. The only reason I don't agree completely with this decision is because she didn't understand why she couldn't always do the same things as the rest of us. She never fully matured emotionally past the age of 12 or 13.

They enrolled Shouf in the same grade as Bouf and they graduated high school together. The school didn't have a "special ed" program, but they somehow managed to coddle her and teach her at the same time. My parents put them both in driver's ed, but Shouf didn't pass, which was hard on her. Also, Shouf didn't understand why Bouf was so wildly popular, and she wasn't. It didn't matter, my mother made Bouf bring her everywhere she went, unless it was a date.

Had Shouf been institutionalized, even for a short while, I'm certain that she would never have had the life experiences that she did. She went to the prom. She moved out and was independent for years. At one point, she even managed her own money. She had multiple boyfriends. She had sex!

She started going downhill again in her late 30's. She was living in an apartment by herself (her long-time live-in boyfriend had left her). My mother decided to sell her house, close her antique shop and move to Florida. Shouf got a lot of stimulation from going to her part time job at a gift store. After work, she would walk to my mother's shop. Around the same time that my mother was closing up shop, the gift store went under. Then her landlords decided they could get more money for her apartment and raised her rent, which she couldn't afford. It was all a harsh blow to her.

Shouf always had a vivid imagination, and often confused dreams with reality. My mother had always maintained that there was nothing wrong with her, though, so we just attributed it to Shouf's quirkiness. She started telling stories around this time that just weren't right. Her landlords' friends had introduced the idea of the spirit world and astrophysics to Shouf, and she took the ball and ran with it. Really, she thought she was having "out of body" experiences and spirits living in the house were leaving her gifts. Not that I necessarily don't believe in those things, I think children or people who are child-like are more susceptible to seeing spirits. But what happened later discounted that this was really happening.

She and I, and my son, moved in together to save on living expenses. I guess I knew in advance that she was getting a little kooky, but I didn't realize how bad it was. She started smelling gasoline all the time, which kind of freaked me out because she was a smoker and home alone all day. I thought for sure I would come home one day to have the house burned to the ground. Instead, I got a call at work from Bouf's daughter telling me Shouf was at their house and I needed to come over right away.

When I got there, my niece said Shouf had called asking her to pick her up - from the business that was in the spot where my mother's shop used to be. Shouf wasn't making any sense, but what we got out of her was the she felt that one the spirits, Christopher, was talking very mean to her and was trying to set her on fire and she was so scared that she ran barefoot over a mile to the new shop. Thank God some of the people that worked there knew who she was and let her use the phone. I brought her home, and asked my other 2 sisters to come over and have a family meeting. When I got to my house, the doors had been left wide open, and the heat had been turned up to 90 degrees on a sunny September day. Shouf didn't remember turning the heat on.

She was hospitalized for a few days, and was put on medication for schizo affective disorder and manic depression. She was having auditory and olfactory hallucinations and would laugh and cry at the same time. The meds turned her into a zombie, but they worked.

When my mother came home for Christmas, she offered to take Shouf back to Florida with her for a few months. When they came home, she had "weaned" Shouf off of the medication. Apparently she thought this was a temporary thing and couldn't stand to see her daughter so doped up. Thank you, Esther.

My parents went back to Florida, again, and Shouf started having hallucinations, again. In our state, you cannot force an adult to take medicine unless they are committed. You can't commit them unless they are deemed to be a threat to themselves or others. I kept telling her I would drop everything I was doing and take her to the hospital whenever she said she was ready. She really didn't want to go back on the medicine, I tried to explain in terms she could understand that the medicine was what was keeping the spirits away. I told her it blocked them from being able to get to her.

By Labor Day we were back at the ER. They had a full house so Shouf was strapped to a gurney in the hallway, screaming OW, OW, THEY ARE RAPING ME AND SETTING ME ON FIRE, OW, OW, IT HURTS, MAKE IT STOP! I was standing there next to her, holding her hand, with tears streaming down my face, begging them to give her a shot of Anything that would knock her out. How could they not see how much pain she was in? They kept her for nine days that time.

This eventually got better, but Shouf is like a zombie, again, and has reverted back to the mentality of an 8-year-old. I have told her that if she goes off her meds again, she cannot live with me any longer. It is like having another child in the house. A child that is an adult. One that you cannot or do not want to tell what to do, because they are an adult. And so, I find myself a single mother with 2 children, one who is older than me. She left for Florida with my mom a couple of weeks ago. I miss her.

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