Living with HIV: An AIDS Diploma
A 20-Year-Old Recounts How She Was Infected at Birth
The following remarks were delivered to students at Marymount High School in Los Angeles, California by a former student named Kristen Lee.
Most of you are probably wondering what am I doing here rather than someone from Pediatric AIDS Foundation or a group from Kaiser Permanente.
I have sat in this auditorium before and I know how it feels to listen to a speaker, but I feel that my speech will impact you in a different way.
I will start out my speech by telling you a little story about a baby girl. The story begins on August 16, 1980 when a baby girl is born at Cedars-Sinai Medical Center in Los Angeles.
She weighs six pounds, one ounce and is a healthy newborn. Eight hours later, her father and grandmother visit her in the nursery. But when they look through the window they notice blood coming out of her mouth.
They pound on the window to get the nurse's attention. The doctors realize that the baby is having a rare medical emergency. This ended up to be a bleeding ulcer in a main artery in the baby's stomach. The hospital calls for a surgeon, but he refuses because it is too early in the morning.
The baby then loses too much blood and needs a blood transfusion. The blood transfusion that is supposed to save the baby's life turns out to be the opposite, because the blood the baby receives is tainted. This causes the baby to contract the Human Immunodeficiency Virus, also known as HIV.
It wasn't until three years later that her parents find out that she is infected with HIV. They make the decision to keep this a secret from her and from most of the people who know her. They make this decision because of the controversy over Ryan White and because AIDS was still a new virus, unknown to many people.
To most who know this little girl she is a normal child who plays, laughs and has friends. Harsh reality doesn't set in until she is thirteen years old when she has a near-death experience when she contracts AIDS-related spinal meningitis and pneumonia as a complication from HIV. She spends six weeks in the hospital to the point where her family is ready to say goodbye to her. Her Mom barely leaves her side at the hospital and her Dad's heart aches at the thought of losing her. But it isn't her time to go. She fights back and is able to go home for the remainder of her recovery.
However, because of the meningitis and pneumonia, her status changes from HIV to AIDS, but still this young girl does not know her status. What she does know is that she has spinal meningitis, which causes her to have neurological damage, and results in impairment to her eyes. Because of this, she now has no peripheral vision.
On Father's day, June 16, 1995, I heard a similar story from my parents, telling me that the girl in this story was me. At 14, I had to deal with the harsh truth that I, Kristen Lee, had AIDS.
This was the summer before I was going to enter Marymount for my freshman year. The harsh truth set in and I became depressed.
When my parents told me the news that I had what Magic Johnson had, I was shocked. I didn't know much about AIDS. The only thing I knew was that I could die from it. I asked myself, "Why me?" I never would ask that question again in my life. I didn't know how to handle the news.
I had lived my life like any other fourteen year old and with this news I didn't know what to do. I began thinking about how I used to take medications when I was little and I remember that I had to hide while taking them. I never knew what they were for.
I asked myself why was I so stupid not to realize something was wrong with me and even after I was sick with meningitis I still had no clue. I never realized that all the thinking and depression could put me back to the hospital either. During the time of my depression I stopped eating food, because I wasn't hungry. In doing so, I started the process of wasting away.
But still I wanted to be like a normal student and I started my first day of school at Marymount. I can vaguely remember my classes, being in Ms. Harter's English class and how I was so happy to finally be at my dream school. But the one thing weighing me down was how I was extremely exhausted. I was tired from carrying so many books. I was tired from the schedule and I couldn't believe that after a day of carrying those heavy books I needed to go home and do homework.
I then realized that something was wrong. I knew deep down inside that I wouldn't be able to continue going to school like this without wearing myself out. I made the choice to stop going to school until I was strong enough to go back. This was the hardest decision for me to make, because I had finally made it and I wasn't a quitter.
I still was losing weight, though, because I was sad and became sadder because I couldn't go to school. My weight dropped down to sixty five pounds at age sixteen.
My doctor at the time gave up and told my parents that he could not help me. My mom refused to give up hope and she found my current doctor -- the best doctor ever -- who ended up saving my life! I was admitted to the Childrens' Hospital under his care. I began to gain my weight back and the hospital had a home schooling program.
As I was recovering back to my normal weight, I was thrilled to be learning again, but there was something missing. I was lonely being at home and I had no friends. I was regaining the will to live again and I knew what I wanted next in my life. That was to return back to Marymount.
With one meeting with Dr. Gozdecki I did just that.
I never imagined how wonderful my experience at Marymount was going to be. When I first came back to Marymount it was on a part-time basis and I knew very few people. By junior year I was able to attend school full time. It felt so nice to be back and it was exciting, even though I was known as the "skinny girl who came only for art and computer classes." I made friends and wanted to do so many activities that I had missed out on from previous years.
One activity included Junior Retreat. I was excited because it was going to be my first retreat and we were going to receive our class rings. The only thing I didn't realize was how difficult it was going to be to take my medication. On the retreat I had to wait until all of the six other girls left the room for breakfast until I took the medications. That was just too hard, so I started taking them in the bathroom. I also felt sick too, because without food in my stomach the medications would make me feel nauseous.
There were times when I had to take up to thirty pills a day.
I could remember times when I felt sick and would have to sit down or lie down for a block just so that I wouldn't have to feel nauseated. Luckily I had a few faculty members who knew about me and whom I could ask for assistance. I remember not wanting to take certain drugs that caused rashes because I knew we wore skirts as a uniform and people would see the rashes on my legs.
At the same time, because I had to adjust to the busy school schedule, it also became hard for me to remember to take my medication. To take medication on a daily basis is especially hard when you're a teenager. For people with AIDS it is really important to be on a strict medication schedule.
The combination of medications that an AIDS patient takes is called a "cocktail." I've been fortunate because the cocktails have worked for me, but you can't stay on one cocktail for a long period of time. AIDS is a very smart virus which knows how to fight against the medicines and learns how to resist. That has happened to me and I am already on my third or fourth cocktail.
Being a student was also hard because none of my friends knew about my status. There were many times where I felt alone because I had no one to talk to about my fears. Even though I had faculty members to talk to, they couldn't fully understand what I was feeling.
So I decided finally to join a support group. Going to the support group was the first time I met other teenagers with AIDS. They looked like normal healthy teenagers. I never realized this fact, because I always thought that I had a huge sign on my head that said, "I have AIDS." Through this group I learned to feel more comfortable with my AIDS status and realized that it wasn't my fault that I had AIDS.
I came to the realization that I had been given something special. There was something I needed to do with this knowledge and it wasn't to keep it a secret. I knew that I didn't have to feel embarrassed or ashamed of having this virus. In dealing with this virus, I learned what my mission in life is and I gained a greater appreciation for life.
There were other children who received the same blood as me; unfortunately, they are not here today. I am a survivor and I truly believe the reason for this is to educate as many people as I can about AIDS and how to have compassion.
Just this past fall I was the AIDS Walk team leader for Marymount College, yet only six people showed up from the school. I also saw a disturbing sign that said, "AIDS is the homosexual contribution to the world." These views need to stop! Through education I can prevent these views from spreading and that is part of the reason why I am here today.
Marymount has given me many opportunities with regards to my well-being. They allowed me to grow emotionally, physically and spiritually. They accepted me for who I am rather than the disease I carry. They gave me friends who no matter what will remain my friends forever. Marymount changed my life because they helped me grow into the strong person I am today. With their support I can believe in myself and know that I can achieve anything if I put my mind to it. With this opportunity I am able to give back a little piece of what Marymount has given me.
When I was asked to speak at today's assembly I was honored. At the same time I knew I had many concerns regarding the choices girls at Marymount make. The purpose of this speech was not just to give you my story, but to inform you about the real world. I know that my story is a shock to some of you and the reason why I'm here today is to give you a face to AIDS and to help you realize that AIDS is a real thing.
I was a student at Marymount and now I am in college and I know what choices are made at prom and parties. You must realize that there are risks with every choice you make. It is important that you girls learn now before it's too late, not to make stupid mistakes that you will regret for the rest of your lives. You will come into contact with a person with AIDS whether you know it or not and when you do, it is up to you how you will treat them, but hopefully you will have compassion, rather than ignorance.
You can be free to make your own choices, but after today I hope you take the time to stop and think about the potential consequences that come with those choices. If I can prevent one of you from making the wrong choice and having a family deal with this disease then I will know that my goal was achieved.
Realize that there is still no cure for AIDS and medications have side effects. My health for now is as normal as it can be, because the amount of virus in my body is undetectable. But I still have to get tested every month to see if it will remain at that level, every time I have to wait for my results it feels like getting tested for HIV for the first time.
I didn't have a choice, but you do. Don't take life for granted and live each day to the fullest! From the Book of Colossians, here is such an example as to how you may want to live life:
"Therefore, as God's chosen people, holy and dearly love, clothe yourselves with compassion, kindness, humility, gentleness, and patience. Bare with each other and forgive whatever grievances you may have against one another. Forgive as the Lord forgave you. And over all these virtues put on love, which binds them all together in perfect unity." Colossians 3:12-14
This article was provided by AIDS Project Los Angeles. It is a part of the publication Positive Living.