In Honor of My Sister and World Aids Day: A Blast from the Past

This was originally posted in January 2006 on my Yahoo 360 blog. In honor of World Aids Day I want to re-post my initial encounter with HIV/AIDS. I added a word or two here and there but left the original sentiments in tact. As of January 2011, it will have been 15 years since her story ended.

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During my senior year of college my baby niece passed away. Angel (not her real name) was the daughter of my oldest sister and she was just an infant. At first she was a very healthy and active child. But a few weeks after her birth she began to get quite ill to the point of hospitalization. She was in and out of the emergency room and the hospital on a regular basis during the last four months of her life. I thought it was sad that someone so young had to be poked and prodded habitually by doctors. Little did I know that was nothing compared to what was to come.

I remember the last time that I went to the hospital to see Angel. When I got to her room I noticed a sign on the door that said all visitors must put on a mask before entering the room. During the entire sick spell that Angel went through my sister kept telling the family that the doctors did not know what was wrong with her, even after they had done a number of test including one in which bone marrow was taken. The doctors were baffled; at least that is what my sister told us. All we knew was that Angel kept getting sick. After seeing the sign on the door warning each visitor to put on a mask I figured the doctors knew what the problem was. I thought that maybe she had an illness that is contagious, which is why we had to wear a mask.

After I put my mask on I entered the room. My sister, my mother and a few other family members were present. The baby was awake and lying in a small hospital bed. Angel was crying as though she was suffering great pain. She had an IV in her little arms and a number of bandages where she had been pricked and drained by the nurses. Although she was crying Angel was virtually motionless. It was as if she was too weak to move. Everyone in the room was silent as we all just looked on while she wailed in her bed. I asked my sister again what the doctor said was wrong with her. She looked down and said that they said that they did not know. Living in the First World day of modern medicine I knew that someone had to know something about the child’s illness. But I didn’t press the issue: I just accepted that answer.

About two days later I got a call in the evening from one of my other sisters. She told me that Angel had died. I was stunned. I couldn’t believe that a child who a few short months ago was given a clean bill of health at birth was now dead from a mysterious illness. I rushed to the hospital to be with the rest of my family. When I got to the room I stopped to put on a mask because the sign was still on the door. I thought the reason that I needed to put on a mask was to not catch whatever she had. When I entered the room I noticed my sister sitting in the chair, crying and holding Angel. That was her way of saying goodbye. Angel was wrapped in a white blanket and her little arms were dangling at her side. Her hands were balled into a fist. Looking at her fists I thought that she must have fought death till the end. My mother and sisters were in the room along with other family members. None of them had on a mask so I took mine off. Many of us took turns holding the lifeless body of Angel. I kept wondering what killed this beautiful little angel. It wasn’t till a few years after Angel’s death that I found out the cause of her fate.

Fast forward about two years.

By this time I was in graduate school on the West Coast about 3,100 miles away from home. A few days after I got back home for the summer I was told that my oldest sister was in the hospital. This was the one whose baby died two years earlier. I went up to see her and she was very happy to see me. Strangely, I had to put on a mask just like I did when my niece was ill. I thought I was being protected from something that my sister had. My siblings and I had never been that close, especially in adulthood and even less so now that I was in graduate school so far away. I asked her how she was feeling. She said fine. I asked her what was wrong with her and she looked down and said that the doctor did not know but they were running tests. That sounded eerily familiar. I accepted that answer and stuck around a while till my mother and I were ready to go. By that time another set of family members came by to say hello. After I got back home my mother said she wanted to talk to me about my sister. I said okay and asked her what was going on. She asked me did I remember when my niece died two years ago and was never given a reason why the baby died. I said yes. She said the baby died because she had AIDS. WHAM! It hit me like a ton a bricks. If the baby AIDS there was only one way she could have gotten it - from my sister. My mother told me that my sister is in the hospital because she has AIDS given to her by her former boyfriend. It finally made sense that anytime we went to see my niece in the hospital (and now my sister) we had to put on masks. I thought it was to protect me from getting a virus. It never occurred to me that it was to protect my niece and my sister from my germs.

My sister has AIDS. I was crushed. I was thrown for a loop. I was too stunned to react. My head started swirling with some weird thoughts like was this God’s way of warning me that if I don’t stop my “lifestyle” that I will get AIDS, too.

I had some cursory knowledge about HIV and AIDS but after my sister contracted the virus I started doing more research about the disease. I went to visit my sister as often as I could. She was in and out of the hospital for most of the summer. We got closer than we had been before. Unfortunately, I had to get back to graduate school by the end of August so I could not spend more time with her. But at least by that time she was out of the hospital and was relatively healthy looking. When I got back to Oregon I purposely immersed myself into my studies. My sister’s infections made me want to forget about the “real world” by focusing more on schoolwork and side projects. I would pray more during this time and watch televangelists and occasionally visited a local COGIC but that was about the extent of my spiritual activities. My conscious was rocked again that term by the news that the rapper Easy E was dying from AIDS. Even though I thought that N.W.A. and Easy- E were tacky (okay, I admit it, I got a Niggaz4Life CD … at that time it worked for me), my heart went out to him and his family.

Fast forward to late December.

When I got back home I was given the news that my sister was deftly sick. After being in and out of the hospital since October the doctors allowed her to remain at home under hospice care. When I went to her house to see her she looked thinner than I had ever seen her. My oldest sister had always been a robust, healthy woman. Now she looked frail and weak. And she was my first baby sitter according to my mother. She used to fix my hair when I was little. She would give me an S-curl when I was in my teens. I would sneak out to her house and have her get me some Brass Monkey at the liquor store. I was under the influence of the Beastie Boy’s first tape “Licensed to Ill”. Now here she was lying in a medical bed with an IV attached to her needing the same care that she used to give me when I was a toddler.  She was happy to see me and rose up enough to kiss me. My sister had not kissed me in years. At that moment I felt guilty for not kissing her more often.

Fast forward to January.

It was time for me get ready to go back to graduate school out West. I was conflicted because my sister was growing weaker and more ill by the day. In fact, my niece, my sisters and my mother all rotated with a nurse to provide my sister with round-the-clock care. I wanted to help but they all told me I needed to enjoy my school break and get a taste of home before I go back to school. Instead, I went by to see her as often as I could and tried to joke and laugh with her. I knew that I had to get back to school. My return ticket was set for a few days away.

I wanted to at least be there with her for her birthday, which was January 4^th. I knew in my heart that it would be the last birthday that she would see. Although she was semi-conscious we bought her a cake and tied some balloons to her bed. We sung happy birthday to her and a couple hours later she took her last breath and died. She tried to take one more, but her mouth just remained open. Her eyes were open, too. The last image she saw was us. The date she was born was the day she died. January 4, 1955 – January 4, 1996.

My sister’s death did a number of things to me. One, it was the first time I got to see up close and personal the ravages of the HIV/AIDS virus. It made me less fearful and more compassionate to those who have this terrible virus. In fact, it has even changed my mind about dating someone who may be HIV positive. I used be afraid of dating someone with HIV. I know that with proper precautions I won’t be exposed to the virus. I realize that a person is bigger than any three-letter acronym for a bug. Second, it forced me to get real about my sexuality. My sister’s death was a reality check. I could live my life hiding and fighting what I am or I can spend what time I have left being who I am and not be ashamed of it. As a symbol of my new freedom I got an earring. That was big thing for me at the time being raised Pentecostal. Of course I got when I was 3,000 miles away, but I kept it when I came back home. Third, it made me start getting routinely tested for HIV. Every 4 to 6 months I get tested. I can’t help but to think that if my sister had known about her HIV status early enough that she may have lived longer, or even still be living today. But since she found out after she had developed AIDS, it was too late. Of course, my infant niece never had a chance. Fourth, her death brought up one of my great fears – I don’t want to die alone or without someone special in my life. My sister did not die alone; we were there with her. But there was no significant other or husband there. To my knowledge, my sister was only in love once over her 41 years. But he was long gone off the scene and in another city by that time. I could not help but wonder, even to this day, will I die loveless and alone? Will I not have someone in my life when I take my final breath? There is a bluegrass song (yes, I am a true Kentuckian) by Ralph Stanley that asks “Will you miss me when I’m gone?” Ever since my sister’s death back in ’96, I have asked myself will anyone miss me when I am gone. I am reminded of Nancy Reagan’s reaction when President Ronald Reagan died. The love and affection she showed, as they were ready to place him in his tomb was touching. She hugged the coffin, laid on it for a moment and stoked the part where President Reagan's head would be. Will someone love me like that while I am alive and when I am gone? My fear is real. Fifth, I noticed how my sister changed after she found out she had AIDS. She did things she never did before like travel extensively and learned how to drive a car and actually owned a car for the first time in here life. She lived and loved her family more in her last two years than maybe all the previous years collectively. I need to remember that when I get trapped in the pit of day-to-day drudgery.        

So on the 10th Anniversary of my sister’s death, I want to pay homage to her by living the lessons that I learned from her struggle and ultimate death from a “big disease with a little name”. Ever since my family's terrible introduction to HIV/AIDS I have a deep well of compassion for those who struggle with the disease today. I promise to not wear any masks when I see you.