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Diet Week #8 Goal : Immediate goal: Lost to date: To achieve success, all you need to do is truly believe you deserve it. End of the day wrap-up
Diet Comments: My Food Day Breakfast Other Dieters Jim |
PATIENTS August 23, 2000 The room is bright and cheery. It’s painted teal blue. There are tall potted plants, flowering succulents with vivid red blossoms. One wall is glass, bathing the waiting room with sunlight and showing the cars passing by, and the patients standing outside smoking cigarettes. The walls display plaques with the names of the donors who made the building possible, cleverly designed like pieces of a puzzle. The chairs are utilitarian, but not uncomfortable. Teal blue, to match the walls. In one corner there is a children’s area. A low round table with chairs in primary colors. There is paper for drawing, a box of crayons. A craft area displays cubbyholes with brightly colored boxes filled with craft activities. A bookstand offers an assortment of familiar titles: Dr. Seuss, Mickey Mouse, The Little Engine that Could.... It Hurts to be Sick. But there are signs that this is no ordinary waiting room. The magazine rack is filled with issues of POZ and HIV-Plus. Instead of Newsweek on the tables you find copies of Mom Guess What. The handouts are for Caregivers, Addicts, Positoids. Instead of business cards at the receptionist’s desk there is a box of condoms. The certificates on the wall explain that this is the Center for Aids Research, Education and Service. It’s always interesting to visit CARES. Today I transported "A." This young lady was diagnosed three years ago. The father of her children, who was diagnosed in 1994, just kinda forgot to tell her. He remembered about the time he decided to leave her and marry someone else. By then it was too late. "A" once held down a high paying job in Silicon Valley, but nearly died last year when her T-Cell count dropped below 10 and her weight plummeted to 88 lbs. She’s scared. She’s alone, a single mother with two children, 10 and 11. She has thyroid problems, she can’t eat. The medicine makes her sick. She has no energy. She’s spending all her time going to doctors’ appointments so even if she did have the energy for a job, she wouldn’t have the time. The bus doesn’t run near her house and she had to sell her car. She’s angry at the man who gave her this disease. She’s angry with the doctors who are "forcing her" to take the medication that is saving her life. She’s afraid for her children. She’s mourning the life she used to have and has not quite adjusted to the fact that you can’t take your kids on $1,000 cruises and give them $100/month allowances when you no longer have an income. "A" is another face of AIDS. When I sit in the waiting room at CARES, I see lots of faces of this disease. Today it was an African American couple. He appeared to be high on something. He had the look of AIDS--thin. There was a gay man looking for his dog, who had been stolen. He told me that he was wearing the dog’s bandanna around his neck until the found her. He had tears in his eyes. The dog was his whole life, he told me. Another man came with his own dog, whom he picked up as a stray 12 years ago. She danced on her hind legs and charmed everyone. A teen aged boy checked in at the window to see his case worker. He looked like he should have been on a Little League field, not having blood drawn to check his numbers. A young pregnant girl arrived. She looked old beyond her years. Will her baby be born with AIDS? Will the baby have to live a life of pain? Will the Mom have the energy to care for her newborn? A mixed racial couple arrived with two children--one about 18 months and a newborn. The parents were getting blood drawn and making appointments with the children. For their AIDS doctor. I remembered the woman at the Health Fair I attended recently, who told me she would help babies with AIDS, but nobody else because she "didn’t believe in that stuff." I’m not sure what "stuff" she didn’t believe in (oh, I could hazard a guess...). Too many people still think of AIDS as a gay disease. But the faces at CARES tell me differently. The patients are gay. They’re straight. They’re affluent. They’re poor. They’re young. They’re old. They’re black...brown...yellow...white. They got it from needles or from sex or from transfusions or from their mother. What difference does it make? They are all fighting to stay alive. They take pills that keep them alive. They spend their days going from doctor to doctor. They fight the system. They love their pets. They love their friends. They hurt. AIDS affects all of us. It’s not as visible as it used to be. You don’t see the kaposi sarcoma lesions that used to mark an AIDS victim as much now. We don’t quarantine people with AIDS. We understand that we can shake hands, hug, kiss, share a meal and not be at risk. People don’t die right away any more. Kids in high school now have never known a world without AIDS. They came to puberty in an era of AIDS "cocktails" which have kept patients alive longer. "It’s no big deal," the 13 year old daughter of a friend of mine told her recently. These are kids who know that taking pills is a way of life in the 21st century. Have a headache? Take a pill. Hyperactive? Take a pill. Need to lose weight? Take a pill. Depressed? Take a pill. AIDS? Take a pill. No big deal. Nobody reminds them this is an incurable and ultimately fatal disease. "A" commented on how her daughters didn’t understand why she’s not working and why she doesn’t have money to buy a car and to take them places, as they used to do all the time. She talks about mounting costs for school expenses for the girls and it’s obvious that she has not yet adapted to her disease or her new enforced lifestyle. I asked her if she had ever thought of getting the girls into a support group with other children whose parents have HIV, to help them understand what she was going through and to get some support for their own fears and frustrations. She became very upset. Her girls don’t know about her disease. They are never going to learn about her disease. She talked about how "teenagers can turn on you" and how she didn’t want to lose her girls because they found out that she was sick. I tried to point out that this is a serious disease and she’s doing her girls a disservice by not sharing information about her disease with them. I also pointed out that HIV is a sexually transmitted disease and that kids are experimenting sexually at younger and younger ages and she was depriving them of the tools they need to protect themselves. She waved her hand and said she’d "signed a paper at school" and that "the teachers showed them a film on sex" and that she "thought they probably mentioned HIV." It was obvious this was a very sensitive subject for her and I didn’t press it too hard. Today. But I did mention it to the workers at Breaking Barriers and I plan to try to convince her over the coming weeks of the importance of telling her daughters about her disease, and perhaps help her figure out how she can be more open with them without fear of "losing them." I’d hate to think how they will feel if her health deteriorates and they realized she’d been living with this for a long time without preparing them for what was coming. We were at CARES for an hour or so. When we left, "A" said that she wished the doctor had given her a "breathing treatment" and that when she’s congested as she is now, a "breathing treatment" always helps clear her up. I asked if she’d mentioned it to him. She bristled. "Well, NO!," she said "That’s HIS job. He should know to ask me." So we had a little lesson in the collaborative nature of the doctor/patient relationship and how important it is for the patient to be completely honest with the doctor about all symptoms, suggestions, etc., so they can work together to give her the best possible care. I don’t think this notion "took" either, and we will explore it at also at a later date. When I finally took "A" home and dropped her off, it was with the promise to call her tomorrow and see how she’s feeling. Then I got back into the car and drove to "B’s" house. I found "B" in tears. She’s stressed to the max from her difficult living situation. She rents an upstairs apartment for herself and, when they stay with her, her daughters. The manager lives on the bottom floor with his ex-wife, his current girlfriend and assorted children of both unions. Needless to say it is not a "calm" environment and "B" has mentioned before how much fighting goes on and how violent the fights become at times. She’s been harassed by some of the inhabitants of the apartment and today was in tears because one of them has threatened to tell all of her ("B’s") friend about the nature of her disease. I felt so helpless to do anything. "B" is a recovering drug addict and the stress of her interactions with the neighbors had driven her to drink. She had a large tumbler with a bit of wine in the bottom that she was finishing. She didn’t seem drunk, but her speech was not quite as clear as it usually is. She held onto me and cried as she talked about how she didn’t understand how people could be so hateful. "B" has attempted suicide three times (the last time just two weeks before we met for the first time) and she says she doesn’t want to slip back into a deep depression. We talked at length about how much she loves her daughters and what a terrible thing it would do to them if she takes her own life. She says she is holding on to that. It was a long day, and when I returned home, I found myself on the front page of the local newspaper, holding my protest sign from yesterday.
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| created 8/23/00 by Bev Sykes |
