Thursday, July 10, 2014

HIV Camps: Love, Support, Fun

I want to talk about something that is really helpful for youth with HIV. HIV camps really help kids and teens with HIV or who have someone in their family with HIV. I have been going to HIV summer camps for nine years, since I was a little girl. I go to one camp that is for kids who are HIV positive like me and I go to another one for kids who have a family member with HIV. Both are great. I think every kid who has HIV or someone with HIV in their family should think about going to camp.

At both camps we have fun doing all the camp things that people do at "regular" camps. But since everyone there has HIV in their life it's a little different how we all bond. Like when we are all about to go to bed we usually talk about something that has been a problem in our life that involves HIV. At those moments everyone is speaking up and being brave with each other. We are all there for each other and get really close in a short period of time.

One of my camps is for kids that have HIV or have a family member that has it. It is in another state and my brothers and I fly there every summer for a week. Camp teaches us to not be afraid and to not get scared about either telling people or about not being able to say anything about HIV. Because every kid and family is different. The camp is at a place where there are other people who don't have HIV there at the same time you are there. Those other kids all have some kind of disease or disability because the camp is made so that it is easy for people with and without disabilities to come and have fun. I think that it is good that we are there with other people who have HIV and other diseases too.

We learn about each other's diseases. It's like being in school because you learn about other diseases and disabilities, but it's not in a boring way. The kids that have other diseases are not usually afraid of us because everyone there is taking meds at the same time and we talk about our meds together and have conversation with each other.

I love the counselors at camp. They are really great and they are kind to all of the kids and some of the counselors have been going there since they were young as well and wanted to become counselors when they grow up. I think that is so cool. I want to be a camp counselor when I am older too. The counselors make sure all the kids act nice to each other and friendly with one another. I always am thankful to have such nice, kind and fun counselors.

The activities there are good for people without disabilities, people that have HIV and people that have diseases other than HIV. Like having fun morning announcements! That usually gets me really hyped up. We have this thing called campfire which is nice too. That's when everyone comes to sit outside where there's a little theatre area and the counselors show us fun things and we also learn things. It is entertaining and educational too. Another thing I like is that we get to pick 3 things (camp activities) that we want do over the week which I love. I usually pick stuff like dance, theatre, and cooking, but other people might pick rock wall climbing, sports, water sports, crochet, art, music, hiking, horseback riding, or animal caretaking. The counselors always remind us about our meds if we need to take them. We sing camp songs and eat great food in the mess hall!!! At the end of the day we have a group chat in our cabin (or sometimes outside while roosting s'mores) about our life.

Usually near the end of the week we have a big party outside and it's fun! We usually have a talent show too, and a competition to see who can have the cleanest cabin. I can't believe my messy brother's cabin won that one once!

The second HIV camp that I go to is also really good. All of the kids there are HIV positive but nobody is worried about it there because we all care for each other. This one is near my hometown and isn't far so I don't have to fly. I take the bus there with other campers as well. At this camp everything is really awesome, the counselors you become close friends with really quickly even if you're new.  Once you go you want to come again the next year. This camp is also great because your doctors and nurses come to camp with you and volunteer, so they are also there in case something bad happens and they can help and you will be even more comfortable. The activities there are good for people that have other diseases other than HIV because some of the kids at camp have both HIV and other diseases or disabilities too like CP (I forget what it stands for, but some kids there have it) or arthritis like me. The camp has wheelchair basketball, lots of smooth ramps, and other stuff like that. Some of the activities are unique. Like every year we get to have a makeover! With cute clothes and even makeup because they told us that each one of the girls there are all pretty inside and out.

Then they have a photographer take professional pictures of us. We also do a dress up day - even for guys too - and it's extremely fun!  Another cool activity is going to the pool and their pool is awesome. It's big, it has 2 beach sides for a big pool ramp that people with wheelchairs can get into without having to get out of their chair. They can just sit and still play with the water and there is also a hot tub that you can get in with or without a wheelchair. Both kids and counselors can use the pool.

For this camp they don't let us pick our own activities. The counselors choose for us our cabin activities that we will be doing for the week and they are all fun. We get to do some things on our own with a buddy but we also have to do a lot of things together as a cabin. Doing all that stuff together makes you get closer to each other. You also get to talk with each other about like what has been the most trouble that you had while having HIV or if you are worried they can help you talk through it. Our counselors always help us to prank the boys' cabins and they prank us girls too. I have made very good friends at camp. Some older (high school) kids even get boyfriends and girlfriends.

At the end of camp there is always a big dance with a DJ and a closing ceremony.
From what I realize, the older you get the more options there will be for you to able to do. Older kids get more pool time, more sports time, longer lunches, small group time called "teen talk" about healthy relationships and self-esteem, nighttime bonfires, and nighttime zip line! But even if you are younger, these camps are great for young kids and teens to show us that HIV is not the worst thing, you can still live your life the way you want to without having HIV being your problem.

If you are a kid with HIV you should think about going. If you are a parent and you have a kid with HIV you should talk to them about it and see if they want to go. It helps you to know you're not alone and it is SO MUCH FUN!

(My post was originally published on the A Girl Like Me blog HERE.)

Saturday, January 11, 2014

HIV Stigma: Like Mother, Like Daughter

Even though I told my friends I had HIV, everything was still okay. Everybody was acting the same. Well, not everybody. Mary* was acting funny with me. When I went into the bathroom, she would leave. When we had science lab, she would switch partners. Outside, she would play with other friends, but not with me. I knew it was about my HIV, but I couldn’t prove it.

I got lucky one day at recess. My allergies were really bothering me, and I had to stop playing and sit down. My eyes were watering really bad, so I was rubbing my eyes and stuff. Mary came over and said, “I saw you stopped playing. Are you crying?” “I’m not crying,” I said.
“Yes, you are! Your eyes are watering!” she said.

Before I could explain it was my allergies, she said, “It’s okay. I know what’s wrong. You’re sad because I won’t play with you anymore, right?”
I said, "Why don't want to be my friend? Is it about the HIV?”
“I AM your friend!” she said. “I just don’t want you to touch me, that’s all. My mom says if anybody has AIDS, stay away from them. They can give it to you, and you can die right away. I don’t want to get it, so I want to be your friend, but just not the normal way.”

I could NOT believe it. “Your mom is wrong!” I said. “She doesn’t understand about HIV. Do you really think someone is going to die in 5 seconds if someone with HIV touches them? Then why aren’t you dead? I’ve touched you all school year. Why isn’t the teacher dead? Why isn’t the whole class dead?”

“I don’t know…” she said. I cut her off.
“You go to the doctor, right?” I asked. “Yes,” she said. “Well, did the doctor tell you have HIV? No, he didn’t. It’s not that easy to get. Ask your doctor if you don’t believe me.”
“My mom is smart,” she said. “She wouldn’t lie about this.”
“Maybe she wouldn’t lie, but even smart people can make a mistake,” I said. “What your mom said is not true. Look, if you don’t want to touch me, then I don’t want to be friends. I don’t need a friend who is scared to be around me.”
“I DO want to be friends!” she said. “Is it okay if I only touch you a little though? My mom said if I play with you, I have to be careful.”

I still thought it was silly, but I decided to be nice. “Okay,” I said. “We can still be friends. Just stop acting so freaked out about it.”
“I promise I’ll try,” she said.

I don't know if I trust her, but I'll give her another chance.

Thursday, January 9, 2014

The Day I Told My Friends About My HIV

One day I was playing with my friends at recess, and I tripped and fell on the blacktop. My knee started bleeding really bad, and it kinda hurt. My friends rushed over and tried to help me clean my leg. I told them I was fine, and that they didn't need to help me; all I needed was for them to help me up. One of them still kept trying to reach near me leg, so I told them not to touch my blood or anybody's blood. Then I went to the nurse and got cleaned up and put on a Band-Aid.

When I came back, we were in the cafeteria. Everybody kept asking me, "Why were you acting so weird? Why couldn't we touch you on your knee? It was just a little blood, not a big deal." I answered them, "It was a big deal. You're never supposed to touch anyone's blood because you don't know what they have." I could tell they weren't really paying attention and didn't think I was making sense. I was frustrated because it's like kids don't know anything!

I felt like I needed to talk to people about HIV and stuff--how you can get it and how you can't. Like just get up on the school stage and talk about it or something, but I couldn't. If I just walked on the stage like that during lunch, I could get in big trouble. And anyway I would be nervous to do it by myself. I can get on stage and do stuff with other people, but by myself I would get nervous and start to sweat a lot and feel like i have to pee! So I decided to just tell my friends instead of everybody.

"Guys," I said, "Don't freak out or tell everyone in the whole school this." I said to myself, calm down and relax. "I have something to tell you. I have HIV."

They looked surprised. "How did you get it?" they asked.
I said, my mom had HIV and didn't know, so I got it too.

"What if you touch someone?"
"If I touch someone, you won't get it. But you shouldn't touch someone's BLOOD, because HIV is in the blood."

"What if you don't know you have it? Could we have it?"
"No, you would know if you did something where you might get it. Like get born with it, or have sex without using protection or share shots. You go to the doctor, and they can tell you if you have it."
"How did your mom get it?"

"IDK," I said. "It doesn't matter how. Even if you have HIV, you can still be a normal person."