I remember the first time. I was playing as a little boy. I had not lost any baby teeth, though the first one was loose. I guess I was six. I got hit in the face with a kickball and my tooth came flying out. I was so excited and it didn’t really hurt. I just wanted to make sure that I found the tooth so the tooth fairy could come that night. We found the tooth but I could not stop bleeding. Every time the school nurse put a paper towel with pressure to my mouth it would come back soaked with blood. They called my mommy right away and I was rushed to the hospital.
They gave me something to stop the bleeding. I don’t know what. I did not know what was going on. I had to stay overnight and I never slept outside my home before. My folks were not fans of sleepovers. I was scared but my dad took the next day off to stay overnight with me. I think that scared me even more because Dad never missed work.
I saw the doctor outside the door talk to Mommy and Dad. I saw Mommy start to cry and saw Dad hold her. She tried to wipe her tears away as the doctor and my folks came in. The doctor tried to explain to me.
I had a disease. I called it He-mo-feel-ya. Every time I said it slowly.
The doctor said that when I would get a cut or something like the ball knocking out my tooth my blood would not be able to stop coming out. He told me I could never play ball again. I would always have to be careful even around my house.
“Never play ball?”
When we were not forced to do homework, math flashcards or read that is all we would want to do.
I started crying too. The good news is I was allowed to go back to school. I was so scared my friends would make fun of me. They didn’t. I got so many hugs that day. But nothing hurt more than watching the kids play at recess without me. I would stand with the teacher or sit on the ground and just stare. Wherever I went there seemed to be someone there. I felt like glass and no one wanted me to break.
At home I would do all these exercises to make sure I didn’t get stiff. I felt like I spent half my time touching my toes. I also went to the doctor a lot. It hurt. I would get blood from “normal” people and their blood would help me when I got bruises so I would not bleed so much. My mommy went every time with me and smiled no matter what.
About a year later I started to feel sick. I used to have colds and they would go away in two days. This time two days dragged into a week and I did not get better. I got sicker. I remembered getting the chills all the time. And then I couldn’t breathe right. My chest was so heavy. Someone put a big stone on me.
It was a Saturday and my folks called my doctor. He told my Mommy and Dad to take me straight to the hospital.
My mommy asked my dad, “Didn’t he sound scared?”
Over the next few days so many things happened. I learned new terms like “New-monia”. I saw my mommy not cry when talking to the doctor but fall back into a chair. My dad howled.
My dad howled.
I had never heard my dad cry or get upset about anything, well except when I misbehaved. I had a mask put on my face first to help me breathe. When that didn’t help they stuck a tube down my throat. I choked and choked as my parents held my hands. I tried to pull my hands away just to reach for the tube. A little while later the rock seemed to get off my chest. But I still felt so very sick. The doctor said my blood wasn’t working.
I know my blood wasn’t working. That was why I couldn’t play with my friends. He shook his head and said I had little things in my blood. That would attack things that made me sick. The sicker I got the more I was supposed to have but the number of attackers I had were as if I was not sick at all.
Then I heard the letters. The doctor didn’t even try to say the disease.
I never heard of it before. My parents must have heard it before. They kept using words and things I never heard before either. They were all hushed now.
“I thought only gays”
“I thought drug users too”
The doctor didn’t know either. That was scary. Doctors knew everything.
“What do we do?”
“No cure”. Cure? What does cure mean?
What does it mean? The doctor said, “We can only treat it when he gets sick.”
Well I was treated for my “hemo-feel-ya”, so why was everyone so upset?
Once I got out of the hospital I knew. I have been sick for a long time now. Nothing hurt more than the next few months. The school refused to let me come back. I didn’t know why. My mom was always screaming at people on the phone.
When I answered the phone and I would say, “Hi.” I loved running to the phone before Mommy and Dad.
“You little faggot” and then I heard click.
I knew something was wrong when I told Mommy. She looked hurt and angry at the same time. I would ask to see my friends and my mommy said I couldn’t see them. I didn’t know why.
One day I looked out the front window and saw my friend, Dave. I ran out to say, “Hi.” And he looked at me as if he had seen a ghost and he ran away from me all the way down the block to his home. Five minutes later there was a knock at the door. Dave’s mom was there screaming to keep me away from her kid. She didn’t want me touching her kid and making him sick too. My mom said nothing and slammed the door in Dave’s mom’s face. I sat on the couch and just stared out the window.
It was as if we were all playing a game of “Cooties” but it was for real.
Next visit to the doctor he told me that I couldn’t get anyone sick. Even if I touched them. Even if I hugged them or even if I kissed them. My mommy and dad knew this but wanted the doctor to tell me.
“So why is everyone treating me like this? Why can’t I go to school?
Why have I lost all my friends?”
I started crying and I realized it was my first good cry since I heard those four letters, AIDS. The doctor shared that AIDS was a new disease and while the doctors knew about the disease everyone else was afraid and acting “crazy”.
That night my mommy and dad gave me the biggest kisses I ever got. Dad hugged me so hard it hurt, but a good hurt.
When my mom and I went outside and walked people went to the other side of the street just so they wouldn’t come near us. When we went to the store everyone kept their distance and spoke in hushed voices.
“That is the sick kid” and would put their kids behind their backs to protect them. I remembered the doctor’s words but it still hurt.
My friends from school were not the only ones who changed around me. My grandma and grandpa still came over on Sundays but my uncles and aunts with my cousins no longer did. I guess they thought I would get their kids sick too. I became so sad. I hid in my room a lot and read about faraway and make believe places wishing I could be there too.
Sometimes I would get sick. The tiniest sniffle would end up putting me in the hospital. The nurses were so sweet to me. At the hospital no one called me a faggot, or a sicko, or a freak. I was in a special unit and I was the only kid there. We were all in separate rooms but sometimes I would see men walking by, having that same sickly look I did when I looked in the mirror.
Things changed though and a little sunlight came into my life. Two doors down from us was a nice older couple, Bob and June. They were the only outsiders that didn’t run away from me or my parents. They always waved to me or when we walked by their home and they were outside they would come down from their stoop and talk to mom. Bob would even pat me on the head.
Bob and June’s son came home to live with them. John was younger than my dad but still a grown up. John came over to the house to say hi to my parents and me. He didn’t run away, he didn’t walk to the other side of the street. He smiled at me and asked my parent’s permission and then crouched down and gave me a hug.
“I bet we both need more of those he said”
I was confused but it felt “right” so I nodded.
The cool spring days became hot ones with warm humid evenings where the sun stayed out past eight o’clock. Bob, June and John would hang out all the time with me and my folks on those evenings. This was the only time that I would hear people mutter about someone other than me.
They were muttering about John. I did not understand why until John sat down on his stoop with me. He said that we have something in common. He had AIDS too. I realized it now that he looked like those men in the hallways at the hospital.
Do you have “hemo-feel-ya” too?
He shook his head and said, “No.” and we said nothing more.
He would go away for a little while and each time he came back he looked sicker. The last time he had these scabs on his face and arms but I wasn’t afraid. By this time I was carrying a book everywhere. Sometimes all the grown-ups just talked grown-up stuff so I would be bored. I would sit on my stoop and read my “Winnie the Pooh” or my new favorite “Curious George”. I found out John loved to read too but he read grown up books but he took time on those summer nights to sit with a sick child and share the stories of a little monkey who got into trouble and the Man in the Yellow Hat that loved him.
People would walk by and give us mean looks and we would go back and read with smiles on our faces. The sad people, that is what they were, or the times we both got sick could never take away the pure joy of those nights on our stoop.
Stories of flying away on balloons and riding a bike; my parents and John hovered over me as I learned to ride too. It seemed every story we shared on that stoop, whether it be George going to the ice cream shop or seeing dinosaurs at the museum we did in real life too. My favorite one was the one with George and the puppies because one day I came home from the store with my mommy and there on the stoop was my dad, John and a Golden Retriever puppy.
Of course I named him George.
This story is dedicated to Aaron, my eldest son with the kindest heart and our dear friend John may he rest in eternal peace.