Sneak Peek at My Writing....

My chapter book will be hitting the bookstores and internet in October 2007. It is a 5th grade reader called My Sister Has AIDS. The intent was to teach kids about risky behaviors and let them know how important it is to know about sharing needles and avoiding drug use and other behaviors that could lead to HIV infection.
Following are some pages from the book.


What you will read here is the original version-- BEFORE the major revision. I am not allowed to share the final revision pages right now due to my publishing contract.

The story has grown and is more detailed. The characters are more defined and the backstory has been embellished.

With that said....feel free to read this ROUGH DRAFT.





MY SISTER HAS AIDS





My Sister has A.I.D.S.

By Kay ========




Illustrations by Dana -----------







This book was written not as an accusation or a confession, and least of all to preach about right, or wrong. AIDS is not an adventure to those who stand face to face with it. It is my hope that this book will simply tell of one person’s personal journey among a generation of people.

I dedicate this book, with love to my twin sister who has shown me the true meaning of the word courage.














Note to Parents and other adults:


I wrote this book with the idea it would help children understand that AIDS is not easily transmitted. I wanted children to begin to develop some empathy for people who have been infected with the AIDS virus.
AIDS stands for Acquired Immune Deficiency Syndrome; this is a disease caused by a virus, which has affected millions of people around the world, many of these people are decent, hard-working people just like you and me. There is currently no cure for AIDS.
People can become infected with AIDS in only a few ways: by having unprotected sexual relations with an infected person, by sharing needles with a person who is infected with the virus, by exchanging any bodily fluids with an infected person and by receiving blood through a transfusion which has not been properly checked for the AIDS virus. The only other way to get AIDS is for a pregnant woman to pass the virus to her unborn child during the birth process.
I believe that it is vital for parents to talk with and educate children about AIDS. For further information concerning the AIDS virus, please contact your local physician or call toll free to the AIDS hotline at 1-800-342-AIDS or 1-800-342-2437.





Chapter 1

It is funny what things are important to you when you are nine years old. When I was nine, I hated having a sister. My sister’s name is Stephanie. My name is Sarah. We are identical twins. Identical just means we look exactly alike. Everybody always used to get us confused. We usually wore the same clothes, combed our hair exactly alike, and when we were still babies our mom had to look closely to tell us apart.
Most of the time it was really awful to look exactly like my sister. Nevertheless, sometimes we would trade places and nobody knew. Stephanie would go to the spelling club after school for me and I would go to her piano lessons. We even traded classes at school a few times before being caught.
Even though we looked exactly alike, we were very different. Stephanie liked to listen to loud music and talk about boys. I liked to listen to quiet music and read books. However, there were ways that we were alike.

Chapter 2

We both hated it when our mom used to tell stories about her childhood in Pennsylvania. We figured that life must have been awful when mom was a little girl. She claims she had to walk miles to school in waist deep snow and help with the coal stove in the back of the room. She also told us how she had to wear dresses to school every day with matching white gloves. One believable story though, has her whole family sitting around listening to a radio instead of watching television.
When she would get started on her stories, we always knew she would eventually wind up telling us more of her silly rules for how to behave like a proper lady. We always had to wear clean underwear in case there was a car accident. One day I asked Stephanie if she thought the doctor was going to stop in the middle of putting a cast on her arm to check to make sure her underwear were clean. She did not think any doctor would ever check.
Mom also made sure that we always turned off the lights when we left a room. According to her, never ever did a woman burp in public or interrupt a conversation. We both thought these were the silliest rules we had ever heard. After she walked away, we would prance around pretending to have on white gloves, burping away and trying hard to break every rule giggling like mad the whole time. Stephanie wanted to ignore all the rules, but I tried to understand why my mom had so many silly rules.
That was the way Stephanie was and always would be. She hated rules.
“You just cannot trust adults to know what they are talkin’ bout”
“Oh Stephanie give them a chance”.
“Why should I”?
“One day you’re gonna get in so much trouble”
“I don’t care”!

Naturally, when I tried to be good and listen to my mom that just made Stephanie despise me more. Well she was not exactly my best friend either. We had to share a room, we had to go to the same school, and we had to wear matching clothes. Neither one of us thought life could get much worse.















Chapter 3

Then when we were in fifth grade, my mom did something we thought was fantastic. The school principal told her it would be a good idea to send us to separate schools so that we could make different friends and be apart some of the time.
At first it was excellent. Then we realized that we could not help each other out with homework and other problems if we were all the way on the other side of town at another school. Even though we thought we wanted to be apart from each other, it was hard to get used to not seeing each other all day long. At the end of the day we tried to tell each other all about what we had done but sometimes we did not talk about everything.
As time passed, we spent less time together, and we made new friends. Even though we still looked alike we had stopped dressing alike and we really did not have many of the same interests.
At first I did not know that my sister was getting involved with other kids who were drinking, smoking, and some who even took drugs. Our mom had warned us about these awful behaviors because these things were bad for us and could get us into a lot of trouble.
Back then, we did not know a person could get cancer from smoking, or that people could get AIDS from sharing drug needles. We didn’t know what risky behaviors were.
I don’t know if she was drinking and doing drugs then, but I knew right away that she was smoking because I could smell cigarette smoke in her clothes and on her breath.
When I tried to talk to Stephanie about smoking she would shrug her shoulders and tell me that I did not understand her. We argued a lot. She did not like it when I told her not to smoke. We would get into screaming fights and I felt awful.
I guess my sister was yelling at everybody. She seemed to like getting into trouble and starting fights with people. She was not even upset when she got suspended from school for smoking marijuana.
I did not know what marijuana was so I asked Stephanie. She laughed at me. I found out that day that marijuana was a drug. Some people thought it was cool but only the really bad kids ever tried it that I knew about. When the school called my mom about Stephanie smoking marijuana, she called us both into the dining room for a long talk.
My mom was angry, I could tell. She yelled, screamed, and even threw a flowerpot. Sarah did not care. She kept going places with her friends and they all did drugs together.


Chapter 4

Things did not get any better. When we were almost thirteen, I tried to talk to her about what she was going to do after high school. I could not decide if I wanted to be a teacher or a news newscaster. Stephanie just shrugged and told me that she did not want to think that far in the future. She said I was turning into one of those adults that should be listened to or trusted.
I was a little nervous about starting junior high school. I thought we could talk about girl things as other sisters did. Most sisters talked about clothes and boys. We did not talk much. She spent time with her friends and I spent time with mine.
Some days she came home acting strange. I was too scared to ask her what she had been doing. I thought she might have been doing drugs, but I didn’t dare ask. That would have been too scary. Sometimes now I wish I had asked her if she was taking drugs or told somebody what I suspected.
Even though we were going to different schools, people knew about Stephanie getting into trouble. I couldn’t invite my friends home after school because I was too afraid that she might come home acting weird again.
Our home had started to change because Stephanie was drinking and taking drugs. My mom was always yelling at Stephanie and sometimes she thought I was drinking, smoking and doing drugs too.
I tried to tell my mom that I didn’t approve of those things. I think she thought that since we were twins we were exactly alike. We only looked exactly alike.


Chapter 5

It was hard to believe we were twins when we were changing so much. I felt kind of funny when people asked about her, but I just made up excuses about why she acted so weird. After a while I think people forgot that I had a twin.
The one day when we were thirteen and a half years old she decided to steal some stuff from the Adams’ house where we baby-sat. The Adams’ were upset. They called our mom and told her that we couldn’t baby-sit for Tyler and Ross any more unless the money and jewelry were returned. I knew I hadn’t stolen anything; it had to have been Stephanie. She swore up and down that she was innocent.
Mrs. Adams told our mom that the missing money and jewelry was worth twenty-five dollars so our mom mad each of us earn the money to give Mrs. Adams.
I found out later that Stephanie had stolen the stuff in order to pay for some drugs to take to the park for her friends on a Saturday afternoon. I remember the day very well. It was the day she came home with the wild look on her face, and her eyes looked glassy.
I tried to talk to her that day as I had so many other times before. She chased me out of the room we shared. I needed some time to think, so I went for a walk and sat under my thinking tree. When I came home, she had taken down all of the teddy bear posters I had on the wall.
She took away everything that made the room look like the bedroom we had grown up in. We hadn’t always agreed on everything in that room, but we had compromised on the decorations. I had always had a few teddy bear posters up, and she had always had a few rock stars on the walls.
Now the room was totally the way she wanted it. I could have fussed about it, and mom would have madder her change it, but I decided it really didn’t matter. Instead I decided I wouldn’t spend much time in our room anymore. I still had a bed and a desk in the room we shared. Most of the time study or sleep was all I did in the room anyway. We hardly spoke to each other. Sometimes when Stephanie would listen to her music, I would put on my earphones so I could listen to classical music and curl up on my bed with a good book.
Stephanie would try to irritate me by turning up her music, so I would just put my pillow over my head and try to go to sleep. Some nights it took forever for me to fall asleep because I would lay there thinking about the fact that my sister was a thief and a drug addict.
I remember wondering why she always wanted to take drugs. I asked her how they made here feel, but she just shrugged her shoulders and told me that I wouldn’t understand. The only thing I understood was that she didn’t want to anything with me anymore. Things that she once thought were fun she now thought were childish and boring.
However, I was determined. I would beg her to go do things with me. One time we went shopping together. I noticed the crisp air, the beautiful flowers that were in bloom, the feeling of early spring. Stephanie thought it was cold and miserable, and she complained the whole time.
It’s hard to admit it, but it was that day that I realized that we might have looked exactly alike but we were as different as night and day. I really wanted to do things with my sister, but I realized that we couldn’t even get along well enough to spend one afternoon of shopping together.





Chapter 6

Once again it all came down to a choice. I was not willing to tolerate her taking drugs and acting weird, and she wanted to be free to smoke marijuana and take drugs.
She tried to get me to try some drugs, but I refused. She said I couldn’t get hurt, but I thought about how spacey she acted and decided that she was hurting her brain and didn’t even know or care. I wasn’t going to take any risks. She thought I was pretty boring.
I spent a lot of time alone. Thirteen years old was the loneliest year of my life. It had gotten to the point that I didn’t even mention that I had a twin sister to anyone. Stephanie liked that. I don’t think she wanted anyone to know about her boring sister. Besides, when we were at home, we hardly spoke to each other anymore.


Chapter 7

In the winter of that year Stephanie got really sick. She had a high fever for days, and she shivered all night long. At first we thought she had the flu. She kept getting sicker do mom finally took her to the doctor.
The doctor wasn’t sure what was wrong with Stephanie. She was very sick, so she would have to stay in the hospital for a few days. While Stephanie was in the hospital, the doctors ran some tests to find out what was wrong. Then mom called to tell us that we were going to have a family meeting. We had been having family meetings that turned into screaming matches for about two years. It would be strange to have a family meeting in a hospital room.
I was not prepared for what I would hear that day in Stephanie’s hospital room. We all gathered in the small room; Dr. Cobb, mom, Stephanie and me. Even with all of us in the room it was quiet, the kind of eerie quiet that tells you that something is very wrong. Mom took a gulp of air before she spoke. Her voice wobbled as she told me that Stephanie had AIDS.










Chapter 8

Oh my goodness, AIDS! I had a million questions and I didn’t know where to begin. I knew about AIDS from magazine articles and on television. Only certain people got AIDS, and it was bad news. I knew that AIDS was a serious disease like cancer and that people died from AIDS.
I wanted to know if she was going to die right away, if she would be sick for a long time. I wanted to know how she had gotten AIDS, and why. Dr. Cobb was great about answering questions. She explained about how hard it really was to catch AIDS; how you couldn’t get AIDS from talking to someone or drinking out of their cup. She explained that in order to get sick with AIDS a person had to have done certain things.
All of a sudden all I could hear was a buzzing sound in my ears. Dr. Cobb was talking, mom was there, and Stephanie was crying. My head hurt really badly, and I felt like I couldn’t breathe. I screamed at the doctor to stop because I didn’t want to hear anymore. That was when I started to cry. I burst into tears and tried to run out of the room.
Dr. Cobb told me to take deep breaths and calm down. As I was breathing and wiping my tears on my sleeve, I was thinking that this couldn’t be true. It must have been a dream. It wasn’t a dream at all. It was real. My sister has AIDS.
I was really scared because I knew from school that AIDS was incurable. That meant that my sister was not ever going to get over having AIDS like I could get over a cold.
I tired to remember everything the nurse had said that day we learned about AIDS. I guess I hadn’t really paid very close attention. I didn’t think anybody I knew would ever get AIDS. My brain was going so fast it was hard to focus. The one thing I could remember was that the nurse talked about how people with AIDS got really sick and then they died.
Even still I expected Dr. Cobb to say that Stephanie was going to be fine. I asked Stephanie how she felt, and she was okay. Stephanie was really scared; I could tell. Her face was pale white like a ghost, and she cried a lot.
When I asked Stephanie had gotten AIDS, the doctor said that they couldn’t say for sure, but probably Stephanie had gotten infected with AIDS by using the same needle as a sick friend when she was injecting drugs.
It was all so confusing. Since I didn’t do drugs, I didn’t know what it meant to inject drugs. Dr. Cobb asked me if I remembered a time when I had gone to the lab to have a blood test. Naturally I remembered that day; it was gross when the nurse stuck the needle under the skin and the blood squirted into the test tube.
What I wanted to know was what that had to do with my sister getting sick. Dr. Cobb explained how each time a doctor or nurse uses a needle to give a shot or take blood the needle is only used one time, right out of the sterilized package, and then thrown away.
Stephanie has used a needle before and put it under her skin on her arm to inject a drug. When she did it with her friend they all used the same dirty needles. Using the same needle for any reason is very risky.










Chapter 9

I could have asked questions all day, but Dr. Cobb had to see some other people. She gave mom a card and told her to call a woman counselor who could talk to our family and help us understand more about AIDS and our feelings about having a family member with AIDS.
I couldn’t believe it. Everyone knew about AIDS from television, but someone else always got sick with AIDS. Now someone in my own family had gotten sick. I guess people don’t think about illnesses unless someone they know gets sick.
Dr. Cobb left us to visit with Stephanie after that, but not before giving me a hug. After Dr. Cobb was gone, I sat on the edge of Stephanie’s bed and held her hand. I wanted to know if she was scared, but I didn’t ask.
Mom visited for a while longer and then went down to the hospital gift shop to buy Stephanie some magazines and a book to read to keep her busy until we could come back in the morning.
Mom wanted to know what kind of books Stephanie would like to read, but I honestly did not know. I tried to tell her that I hardly knew anything about my own sister anymore, but it was hard to make mom understand.
The next day mom called the counselor that Dr. Cobb had recommended. We didn’t make an appointment like a regular doctor’s office. She told mom she would come to Stephanie’s hospital room that afternoon.








Chapter 10

The counselor’s name was Linda. I had never met an adult that wanted me to call them by their first name. It was kind of neat.
Linda wanted to know if I had any questions. There were so many things that I wanted to know. She decided to start with the basics. She explained that most people think that when a person gets sick all they have to do is go to the doctor, and get some medicine.
That works when the person has a type of illness that comes from bacteria. An ear infection is caused by a certain kind of bacteria. When a person gets an ear infection, all they need to do is get an antibiotic from the doctor, and they usually feel better in about a week. There are other types of illnesses that are caused by viruses. There are no antibiotics or other medicines to fight viruses.
A cold is a kind of virus. People who get a cold can take some medicine to help them feel better, but the cold gets better after a while on its own. Colds are not a serious type of virus.
Well, then I told Linda that AIDS couldn’t be so bad. The AIDS would get better all by itself after a while, right. Unfortunately, Linda had to tell me that this virus didn’t work that way. Boy, was I confused.
Linda told me that everybody has a built in system to fight off germs and viruses. In our bodies we have white blood cells that are there just to keep our body free from disease. The white blood cells are part of our immune system.
Well that sounded good to me. So why couldn’t the white blood cells my sister already had just destroy the AIDS virus in her body? Linda smiled and told me that I asked good questions.
She thought that sounded like a good idea. It didn’t work that way. What really happens is that the white blood cells try to get rid of every virus in the body but some viruses are stronger than the white blood cells can manage. When a person gets the AIDS virus, the virus takes over the white blood cells, and uses the white blood cells to make more AIDS virus cells. That meant that the white blood cells, which are supposed to fight diseases, are not only unable to fight the AIDS virus, there would fewer white blood cells to fight off other germs and viruses.
Linda went on to explain that when doctors understood how the AIDS virus destroyed the white blood cells in a person’s body that was when the disease got its name. AIDS stands for Acquired Immune Deficiency Syndrome. At that point, Linda was going a little fast and using those big words doctors always use. I told Linda she had better explain that again so that I could understand.
Linda broke down the big long name.

A = Acquired (something a person gets)
I = Immune (protected from infection)
D = Deficiency ( a lack of something important)
S = Syndrome (a set of symptoms)

When she explained it that way it made it a lot easier to understand. She also told me that the virus, which causes AIDS, is called HIV. HIV means Human Immuno-deficiency Virus. This is when a person is developing a lack of the kind of cells they need to fight off infection.
I guess that would make sense. The person who has HIV is unable to fight off viruses. That is called being HIV positive, because the body has the virus in the place of some of their white blood cells.






Chapter 11

We talked to Linda for almost two hours that day, and she answered a lot of questions. I understood what AIDS is, but I wanted to know more about getting it. I was afraid that I might get it too, especially since we shared a room, and ate off the same plates.
I had learned that nobody could get AIDS from living with someone who has AIDS, but it was different if it was a twin sister who shared your room, wasn’t it?
When Stephanie heard me ask that question she got really upset. She didn’t want me to be afraid to live in the same house with her. Linda assured me that I would not catch AIDS from my sister when she came home from the hospital as long as I was careful. We would have to wear gloves to clean up is she got cut or something like that.
The saddest thing that Linda talked to us about was other people. People with AIDS are afraid that other people won’t want to be near them. The reason people are so afraid is that when a person first has the AIDS virus they look and feel healthy. None of us had even known that Stephanie had AIDS until she got sick enough to go to the hospital. Linda said that this was common. Some people don’t even know they have the virus until they have a special blood test or until they start to get sicker.
When someone starts to feel sick all of the time, they usually go to the doctor to find out what is wrong with them. Well, that sounded kinda scary to me. What if I got the flu and I felt sick all of the time. Would that mean I had gotten AIDS?
Linda explained that most people had certain kinds of symptoms with the AIDS virus, like sweating a lot at night, losing weight, and having a fever.

Chapter 12

Stephanie leaned forward on her bed. She wanted to know why she was sick and some of the friends who she shared the needles with were not sick. Linda said that only God knew the answer to why some people who take the same risk didn’t get sick. She also told us that those friends might have AIDS, and not know it yet.
I guess we had learned about risky behaviors that hard way. Stephanie might not have ever used drugs if she had thought she could get AIDS.
I figured mom would be mad at Stephanie. Mom was only mad that Stephanie had been taking drugs and that she had lied to her. I was surprised when mom put her arms around my sister and told her how much she loved her.
I loved my sister too, even though we did things differently and we disagreed on almost everything. She was my sister and nothing would ever change that.











Chapter 13

After a few days in the hospital, Dr. Cobb let my sister go home. She still had AIDS, but there is no cure yet for AIDS. She would live with her disease until she died. It might be a few months or a few years.
Some days nobody could ever tell that my sister had AIDS. Other says she was weak and tired, but people who didn’t know she had IADS would have thought she might have the flu. We knew better.
We decided to do something different for Christmas that year. We didn’t have a huge tree with lots of presents under it. Instead we went on a trip to Hawaii. Stephanie had always wanted to go there. It was too cool. We had a really good time, and Stephanie felt well during the entire trip.
When we got back home, Stephanie got really sick again. This time she was coughing a whole lot. She had to go back to the hospital.
It was hard to believe she was sick again. I had almost forgotten she had AIDS. While we were in Hawaii we had roamed the beaches, and gone on shopping sprees. We had left behind the two strangers and found instead two sisters who had more in common than they realized.
However, even as we had boarded the plane for our trip home we all exchanged a look. We knew we would have to return home to the normal routine of medicines and waiting to see what happened next. We had hoped things would be better. Then we were driving to the hospital again, waiting to find out what was wrong.





















Chapter 14

It turned out she was sick with pneumonia. Dr. Cobb said she might be in the hospital for a few weeks. She also said that Stephanie might not get well.
I didn’t want to think about my sister dying. It had only been five years ago, in fourth grade that I had hated having a sister. Now I wished that she hadn’t taken any drugs or gotten AIDS. I wanted to have my sister around for a long time. We were finally able to talk to each other. Our differences had happened a long time before, in what seemed like another lifetime.
Every day after school I went to visit. We had long talks like other fourteen-year-old sisters. She wasn’t hanging out with her rowdy friends and taking drugs anymore. She had changed a lot since she got sick. She still liked to listen to rock music, and I still liked classical music. We were always alike in some ways and different in other ways.
We didn’t look like twins anymore because Stephanie had lost a lot of weight and here hair was falling out. She kept a picture of the two of us, we had taken in Hawaii, by her bedside. We had our arms around each other and we were having a good time shopping at a market place in downtown Honolulu, Hawaii.
We finally found a radio station that played some songs that she liked and some that I liked. We both like Madonna and Elton John.
She even gave me one of the stuffed teddy bears she got as a present. She said she didn’t much like teddy bear things; they were more my style. I was just glad to have something to snuggle with when I fall asleep at night. I missed hearing her snoring and breathing sounds when I was trying to go to sleep at night.


















Chapter 15

Last Monday was our fifteenth birthday. The nurses brought us a great big cake. Everyone gathered around to sing and then we blew out the candles. I blew them out for both of us. Everyone had a very nice time. I couldn’t remember a party that had been more fun, even the ones we had when we were little.
Stephanie didn’t feel like eating her cake or opening the presents because she needed to rest, so we all left to give her a chance to get some sleep. We decided to open our presents later.
The phone rang in the middle of the night. It was Dr. Cobb. Stephanie died at 2:07 in the morning, after our birthday. Mom came into the room and told me right away. We hugged and cried for a long time. She sat on the edge of my bed stroking my hair until I fell back to sleep.
The next few days were awful. The funeral was nice. We were surprised to see so many friends and relatives there to say their final “good-byes”.
Stephanie hadn’t gotten to pen her present from me. I had given her a scrapbook full of pictures of the two of us. It had pictures of the two of us when we were babies, and some when we got into a twenty-five pound sack of flour when we were two years old. There were pictures on Santa’s lap, and pictures of us on the first day of school. It even had pictures of the tow of us in swimsuits. Some of the pictures had “twins” written on them. In most of the pictures we looked exactly alike. In the pictures that were taken during the last few years we looked a little different. In some of the pictures Stephanie looked really thin and sick.
I guess twins really do think alike. When I opened my present from Stephanie I cried. She had sent my mom shopping for a gold locket for me. Inside there were two pictures. On the left side was a picture of us as babies. On the right side of the locket was the picture of us that was taken in Hawaii, my favorite picture of my sister and me together.
At first when I wore the locket it made me sad. I missed my sister so much it would make me cry to wear the locket and look at the pictures.
Lately, I have been wearing the locket every day. When people ask to see the pictures inside I show them the pictures with pride. I tell them that the pictures are of me and my twin sister. My twin sister who had AIDS, and died.










ACKNOWLEDGMENTS

Thanks to Dana -------- for her artistic advice. She helped me past the rough spots and gave me the encouragement I need to complete this book.
Thanks to the volunteers who answer the phones at the National AIDS hotline. There were several times when I needed technical questions answered about AIDS and HIV infection. They were always helpful and courteous.
Thanks above all to the family and friends who read many rough drafts and helped with small details. Thanks for their constant support, which meant the world to me.

Kay ==========