HIV-Positive Blogger Aims to Inspire and Spread Hope
September 25, 2009
"It's an important message to get across that even if you have this disease, there's still hope for a long and happy life,"
Shawn Decker was just 11 when he was diagnosed with HIV and told he had two years to live. But on Oct. 3, Decker, now 34, will receive the Whitman-Walker Clinic's Courage Award at the opening ceremonies of the 23rd annual AIDS Walk Washington.
Decker has hemophilia and acquired HIV during a treatment for the condition. "I missed the last month of sixth grade because the school kicked me out because they were afraid I would infect other kids," said
Decker, who grew up in Waynesboro, Va. His parents waged a successful fight to get Decker back into school, but for many years he closely guarded his secret.
After graduating from high school, Decker in 1996 was inspired by the story of Ryan White's courageous fight against AIDS and decided to disclose his HIV status. He began blogging extensively about his life. "I wanted people to see that somebody with the disease could be someone you like," he said. "For me, meeting the AIDS community and talking online completely changed my life."
In 2004, Decker married Gwenn Barringer, an AIDS activist and educator he had met in 1998. The couple speaks at various events about their relationship and how they safeguard Barringer from the virus. They chronicle their lives on a Web site, www.shawnandgwenn.com, and Decker is a columnist for POZ magazine. In 2006, he published his memoir, "My Pet Virus: The True Story of a Rebel Without a Cure."
"It's an important message to get across that even if you have this disease, there's still hope for a long and happy life," said Chip Lewis of Whitman-Walker.
For information on AIDS Walk Washington, visit www.aidswalkwashington.org/faf/home/default.asp?ievent=299353.
Adapted from: http://www.thebody.com/content/whatis/art53838.html
To get to know more about Shawn Decker and his inspiring stories,
I was in a sleepy condition when I woke up at 5 am in Za’ba College. I pushed my body to take a bath with freezing water..bbbbrrrrrrr…!! That’s really made me fell sick. But I had to get the bus at 7 am, and went to KLCC with Ha, because I wanted to visit the skybridge at Twin towers, and it only opened in the morning, so we had to wake up early and go to KLCC as soon as possible…
At 6.45 I went to the bus stop in front of Za’ba College, and Ha was already there. We got the earliest bus (rapid KL) to KTM station, when I arrived there, the train already came and the passengers ran to go inside, but we couldn’t enter that train because we didn’t buy the ticket. So, after we bought the tickets we have to wait the next train around 20 minutes. After we arrived at KL Sentral we bought rapid KL train ticket to KLCC.
KLCC station was very crowded when we arrived there. And we had to meet Ben who was already there to get the ticket for us. But unfortunately there was a problem with the signal and I couldn’t call him. Finally, after 15 minutes there, we managed to call him. And he was still queuing to get the tickets. And we got the ticket at 1.30. So, we had a lot of time to go around the Twin towers. Ben suggested us to try the experience in Petrosains, what a really amazing experience there ( you have to try it ).
And after 2 hours in Petrosains, we visited the sky bridge, that’s really awesome…I really liked that moment… but its only 10 minutes, but I think that’s quite enough.:)
Then, we decided to visit Bukit Bintang, and our first destination is Pavilion Plaza, and we walked around, and we had lunch there, actually we planned to watch movie, but the ticket already sold out. So, we went to Berjaya times square to find another cinema there, but unfortunately the ticket already sold out too, after drink at the Tea Shop we back to UKM…
The 1st weekend, I was so glad to be invited to join AMAN,-Malaysia AIESEC AWARD Night. Compared to Chinese Award Night which is usually held on the last night of our National Conference, the professionalism of AIESEC Malaysia really impressed me and I did notice that AIESECers in Malaysia all did awesome jobs in the last year not only in terms of exchange number but also for the members and LC’s organic growth. Hope AIESEC Malaysia and AIESEC UKM will have a more rapid growth next year^^
Chapter two-Central Area Election Day
Me and AIESECers from LC UKM and interns
Me and the Red Agents from The RED Project
In China, usually LCs will hold its own LCP election ,so members from one LC probably have no idea of the procedure of other LC’s LCP election, but here in KL, Malaysia ,a big AIESEC event of Central Area Election which is consist of 4 LCs –UKM,UPM.UM,TUC really provided a platform for AIESECers to know more about other LC and have some knowledge about the advantages and disadvantages of their brother LCs, I do like this way and hope it could follow this suit later .
Chapter three-AIESEC Gathering &Bonding Time in UKM
Every Wednesday evening, to every AIESECer in UKM, it is a special moment ,since it is a AG time yay! Unlike My LC ,the only gathering time is every month LC meeting ,most time of which is kinda boring and serious, however the one held in UKM is quite member motivated where the ground dance ,TM session and alumni sharing provide the chance for members to know more about each other plus get more idea of the excellent former AIESECers and other function work, so TMers in UKM, you guys really do an awesome job, hope you could keep up this tradition and perhaps add more elemant in it in the future^^
Chapter three-My farewell Dinner
In our LC, as the OCP of Red Wings Project in our LC,I have arranged or participated a lot of farewell dinners for interns, and here ,in UKM, as a CEEder ,I got the chance to get my own Farewell dinner though I don’t like the feeling of saying goodbye to my friends.
Well I own great thanks to the AIESECers who joined my farewell ,for you guys were under mid-term exams, so quite busy with study and AIESEC work already but still spare time to join it ,I was quite touched by it, thanks a lot ya^^.Held in Zaba, the farewell dinner was prepared with Satay and many other traditional food ,we even hold (could you ask Jarod the Chinese food we had for drinking competition?),,it is absolutely one of my sweetest memories in Malaysia
Chapter one –find sponsor
Well it is hard to find sponsor to support a non-profit project, not to mention to find one in Malaysia where the official working language is English and corporate cultures is quite different from that of China in one month ,however ,the more challenging the work is ,the more meaningful.
The CEEDership is, so starting with making proposal, then making cold calls and later visiting companies, our marketing team progress step by step, I am so glad to work with Charlene and Kuan Yoke –the two passionate girls for marketing work, and also enjoy the OC meeting of TRP
Pei ling , Jarod , Geraldine ,Vincent and Hui Yee, I am really proud to be the colleague with you guys^^
Chapter two- Conduct workshop
Although my JD of ceedership did not include workshop , yet I did appreciate TRP team offered me the chance to be the Red Agent with interns and AIESECers, making one of my AIESEC dreams –to be facilitator for HIV/AIDS come true. The workshop was held in SEGi College, which is quite far from UKM. Getting up around 6 am ,it took us like 4 hours to get there ,welcomed by the teachers and students there ,the whole process seemed to be quite enjoyable with the help of very responsive students ,we were proud to be The Red Agent!
Batu Cave tour
On the 3rd weekend, I went to Batu Cave with my Intern friends, without acquiring any knowledge about the cave, I thought it was a cave showing drawing , like a museum visiting. However when I went there ,I was deeply shocked by the Indian Crowd there, whom with flowers on their head and barefoot ,what’s more ,there are some certain people with hooks deeply linked to their bones and several people pull them on the back ,it seems that they were under great pain to pray ,the sincere spirit really impressed me a lot
Well before I came to Malaysia ,my Chinese Friends told me to be careful when talking with Malay people, this is mostly because we were so unfamiliar about their culture or we misunderstood that they were kinda cold when treating foreigners. However during my stay, I was so surprised by their friendliness, for example ,a Malay Uncle kindly introduced me the yummy food and could remember what I ordered even 2 weeks after and I still remembered a Malay Staff in Starbucks sacrificed his working time to look for the way to get the printing place for me ,there are so many cases that shows people here is a lot nicer than I thought and I really miss them^^
The food here is a combination of Malay, India , Chinese and so forth, so it is quite diversified .as to the Malay food. I was quite impressed by the spicy and oily food here ,even as a Chinese who loves Sichuan Food(which is famous for the spicy sauce),I did find the Malay food a little bit more spicy ,however most of the food is very delicious.
Chapter one-Penang trip
On the 2nd weekend of my CEEDership ,I went to Penang ,the trip of which took me 5 hours ,then in USM,I met my old friend- Yi Ying (she did a internship in Dalian last year) and her friend – Qing Yoong ,a nice @er who kindly showed us around Penang by his car, during my 2 days visit ,the tourism sites and best ever food in Malaysia there attracted me a lot and the moment I left there I was kinda sad and didn’t wanna go back ,haha
Chapter 2 – KL tour
Since UKM is a little bit far from the central of KL ,so Yoo Jin,Milou,Bob ,Ramiro and I decided to book a hostel in China Town which could facilitate our 2 days KL tour. It was an amazing weekend, not only did we pay visits to Batu Cave ,Chinese Town ,some Museums,but also we went to Reggae Bar and Zouk Nightclub where I found the nightlife in KL is amazing ,lots of tourists plus exciting atmosphere
Well introduced by my German friend that Cameron Highland is a must-go place for tourists, so I bought the ticket one week ahead to get there with Milou and Yoo Jin, however I did miss my bus and only to be told that it was impossible for me to make it on my last weekend ,so I have to give up Cameron Highland.. kinda sad=(
However ,I went to Melaka then with Derek who kindly drove me there and made my trip so wonderful .Actually it’s a spontaneous idea ,neither of us did a good research of Melaka even when we were on our way there, haha ,how random we are =).Melaka is far smaller than I thought and it only took us several hours to finish all the tour sites, but I really enjoy it
Chapter Four-meet up with my friends in Malaysia
During my CEEDership time,I met my old friends Alvin ,Moritz ,Usong ,Muslih and Kenny ,some of them jst came to Malaysia to visit me or the AIESECers in different LCs, Its so glad to meet them again in different places and thanks to AIESEC that made me have friends all over the world and I am not alone even in China ,^^
Tuesday, January 8, 2008
Carl, a 19-year-old Prince George's County resident, spoke with reporter Susan Levine about finding out that he was HIV-positive -- and about his life after the diagnosis. Excerpts from that conversation:
Teen Voices of AIDS
A Young Man Learns to 'Embrace' His HIV Status: A Young Man Learns to 'Embrace' His HIV Status
I've now been diagnosed for two years. Well, not two years, going on two years. January 13th. I found out on January 13th, 2006. It was Friday the 13th. I never forget, Friday the 13th, what a horrible day to find out . . .
I do not know when or where I was infected. . . . All I can give is a time period, an estimated time period anywhere between the ages of 15 and 16.
If you are what they call an at-risk person, the average teen, you kind of know, you've got to know, you have a feeling, look, I'm doing certain things, I'm living a certain lifestyle that can be damaging in the future.
So kind of by the age of 17, I started thinking, you know, all my friends kept saying, we're all gonna go get tested, and we should all get tested together, but I lived with a certain fear because, a fear of knowing. You know, I kind of said to myself, I think I might have it, but I'm not sure.
To me, at the time, at the time, not knowing was waaaay better than knowing. Because if I didn't know, I did not have to deal with the pressures or, for lack of understanding at the time, you know, ending my life. You know, it was like a death thing, what I thought at the time.
I was very uneducated about the subject. You know, when things came up on TV about AIDS or HIV, when they talked about it in school, I kind of ran away from it. You know, cut the channel, cover my eyes, 'cause I was scared of, I was scared of the facts, I didn't want to know the facts, I wanted to stay ignorant to the subject . . . because as long as I was ignorant to the subject, I thought, Okay, I'm fine.
That kept me sane. I'm thinking, If I don't know anything about it, I'm fine. But if I knew what was going on, it made me feel more and more guilty about the things I was doing as a teenager.
I was afraid my mom was going to throw me out, she was going to disown me as her child. . . . I did not know what the outcomes could be, you know. We didn't grow up with the best of relationships, so I didn't know how she was going to feel if I was positive.
The bad part about it is that my mom was just as ignorant on the subject as I was. So when we got home, it was a circus, you know. She made me eat off of paper plates, eat from paper products. You know, I couldn't, like I said, I had three other brothers and sisters. I couldn't share any, any, you know, knives, forks, spoons that they shared. I drank from paper cups, paper knives, ate off of paper plates. Everything was separate.
It really hurt me, it really hurt me. Like I really pushed myself away from the family.
Over the past two years, I've grown a lot. I've become educated, I've become educated on the subject through my doctors, my social workers. . . . I've really become one with who I am, and I've embraced being HIV-positive. Sometimes I even forget I have it. I live a normal life. Like I say, I'm a college student. I have normal bills, normal student loans. . . . I live a life of a teenager.
Teenagers start rumors. So I had rumors from everywhere: I was starving my soul. I was bulimic. And then the big thing came out: Everyone said Carl had AIDS. The big rumor came out about Carl having AIDS.
I used to have pity parties for myself. You know, that was the hardest part. I would have a weekly pity party, where I would go and I would sob and it would be sob, play the blame game, feel sorry for myself. I don't have those anymore.
I've changed my sexual patterns and my sexual behavior, um, where at first I was afraid to ask for condoms.
I use them, I'm not afraid to use them.
To me, it's a part of you. It's like anything that's a part of you, from a scar on your hand . . . it's something you have to live with. It's something you have to say to yourself: "Am I gonna let this scar on my face control who I am as a person? Am I gonna let cancer dictate my life?"
As I said to myself, "Am I gonna let HIV define who I am as a person?" And I said to myself, "No, no, I'm not." Yes, I've seen people die of HIV, and I've heard the stories of people dying at a young age. But I've also heard the stories of healthy people who live long, healthy lives, who lived into their 40s or even into their 50s or late 30s, who took care of their selves and accomplished everything they wanted in life, you know.
Teens should know that HIV is real. And I think, you know, no matter how many commercials you put, how many billboards you put up, how many posters, how many people come to your school and talk, they need to know that it's real and it's out there. A lot of teens are naive to certain things. I know I was naive. . . . It's like . . . it's not gonna happen to me. And finally, when it happens, it's reality.
Let me tell you: The closest thing I got to HIV education in school, I don't even remember talking about HIV in health class. . . . A little segment in health class on what they called at the time STDs, that's about it. We didn't focus on HIV and AIDS in school, which to me is sad.
My parents and adults, they didn't think HIV is real in teenagers. It's like teenagers don't think HIV is real in the adults, parents don't want to believe that HIV is real in teenagers.
The way I was living, it took me getting HIV to turn my life around.
I think my main message to another teenager, one who would be at risk or not at risk: HIV is alive, is real. If it can happen to me, it can happen to you or can happen to your friend, your BFF, your boyfriend, your girlfriend. It's alive.
Carl spoke with The Post on condition that his last name not be used.
adapted from :
Yoo-Jin, Megan, Geraldine and me (Jarod) had conducted a workshop at SEGi College last Saturday. it was an awesome workshop and the Red Agents enjoy it very much. here are some pictures on the day's workshop. (and more to come...)
Michelle, the person in charge of this workshop, give it a start by welcoming the students and a brief intro about the Red Agents
Students who come to the workshop
The Wildfire Game.
Students listened attentively
The end of the workshop, we took a picture with Michelle, the person in charge.
not forgetting Geraldine.....
Post workshop gathering. the Red Agents hanging out in the nearby mall and did documentation and Post-mortem.
On behalf of the Red Project, I would like to grab this opportunity to thank Michelle, the person in-charge of the workshop and her colleague for letting us to conduct the workshop and the souvenir as appreciation. Thank you so much to the students of SEGi College for participating in the workshop. Thanks.
That's all for the workshop at SEGi. Stay tuned for more Updates...
Posted by the red team at Tuesday, February 02, 2010