Well, it's been a while since I've blogged. Things have been a bit crazy since the International AIDS Conference in Toronto. I'll fill you in soon. But for today...breaking news. Marvelyn and I were on The Oprah Winfrey Show today at 4 E.S.T. In fact, Marvelyn and I just blew back in from the windy city last night. We're still recovering from our plane ride with 100 mile an hour tail winds and a landing at Newark that had me reaffirming my faith as we bounced through the skies over Staten Island.
It was an honor and a trip to be on Oprah. They're just not words you imagine hearing: "We'd like to invite you to be a guest on The Oprah Winfrey Show." But there we were, holed up in the sumptuous Omni hotel, reading Ms. Winfrey's magazine, wondering what the show would turn out to be.
We knew that there would be a total of 6 women living with HIV who would be featured, including me and Marvelyn, Cherrel Edwards, Chelsea Gulden, Precious Jackson, and Evette Olgetree, as well as Magic Johnson and his wife, Cookie; Dr. Kim Smith; Eugene Rivers, reverend at the Azusa Christian Church and Julie Gerberding, director of the CDC. The focus? HIV/AIDS in America and the rising infection rate among women, particularly women of color.
Given the reach of Oprah's show and knowing that her previous shows have focused on the phenomenon of the "down low" and AIDS orphans in Africa, I was thrilled to see her focus a show on the epidemic stateside. Throughout this year of disclosure, I have encountered so many people who really feel that AIDS is no longer a problem in the U.S. Given the media's focus on the pandemic's path of destruction overseas, it's important that we remind people that we have, as Magic Johnson said on the show "Our own little Africa" right here in the US.
It's a sentiment I felt strongly a week ago when I was in Washington, DC for a fundraiser for Youth AIDS. I was seated at a table with a group of people all committed to supporting the cause of AIDS relief..."over there." When I told them that the HIV infection rate in the District of Columbia was 1 in 20, they said they didn't believe me. They said that AIDS was "under control here" and that "people in the U.S. had access to medicine to stay well." They said that very few people got AIDS in America anymore. I nearly choked on my salmon. When I recovered - I mean, these were people who'd paid a great deal of money to support a local AIDS charity...if this is what they thought...what was the rest of the country thinking? - I decided it was time to drop the bomb. So, I told the well-dressed, black-tied folks at my table that 2 of us (Marvelyn was sitting beside me) at the dinner table were positive. Given that there were only 10 people at the table - I pointed out that the rate of infection at our table was twice as bad as that of the District of Columbia. Two women stood up and went to the ladies' room. The others just kind of stared at us.
I find it so incredible that people are incredulous when I tell them I am HIV positive. So often, I get a slack jawed stare. Sometimes people actively question whether I'm telling the truth. Sometimes they say they believe me, but I can tell they're struggling to digest the news.
This is the point. This is the reason I decided to put my mug out there - on the cover and pages of POZ - and in the national media. Too many people still don't think it can happen to them. Often, when I share my status, I think people spend the first minutes trying to establish how I am different from them - as if the more they can differentiate themselves from me, the lower their chances will be of also having HIV. I think they spend the next short while after that, reviewing the details of their sex life and wondering whether or not they could have been exposed to the virus.
When the producer of Oprah's show called to ask if I had any special requests for my trip, I said that I would like, if possible, a window seat on the airplane, over the wing. I told her I was terrified to fly. She said, "You are afraid to get on an airplane, but you're not afraid to go on national TV and tell the world you have HIV and talk about living with the virus?" And I said that I wasn't in control of the plane, and that no one would be helped by my flying through the sky in a big metal tube. But, that when I put my face on the boob tube, I raised my chances of getting to women (and men) and convincing them that even if they've had unprotected sex once, they may have been exposed to HIV and should be tested - and use protection going forward. I said I was afraid to die in a plane (as irrational as that sounds given the odds). But I was confident that I might save a few lives by going on TV. And even if one person believed what we said on the show - a single life saved would be worth the terror of appearing on national TV.
I too am living with the HIV virus since 1991. Little did I think I would still be around at this stage. I have been extremely fortunate with no illness except for the usual cold or sinus. Although I have side effects from the medication, I probably won't die of the virus but probably from heart problems. I wanted to thank you for letting people in America know that we need help here. I understand Africa needs help but there are plenty of people who are dealing with this disease right in our own backyard. It's extremely hard to get up and go to work and pretend everything is fine. I know I should be thankful because I can get up and go to work but the isolation is a killer. Anyway thanks for letting the world know HIV strikes and is still striking all walks of life.
Hi Regan,
I too have been very open about my status. As a married man of 45 years old, living in rural Owen County, Indiana,I was diagnosed with AIDS almost 11 years ago. Since my diagnosis, I have been working to reduce the stygma associated with HIV. When I was diagnosed, most people in my county felt that this was just a gay disease and that they had nothing to fear because they were removed from the rest of the world (and the chances of acquiring the virus) by their rural settings. I too, have experienced the reactions that you are describing, and then some. Though none have been violent, some have been outright fear until having educated them about the virus.
You will have some idea who I am if you check the back page of the June 2004 issue of POZ. Since then, I have been interviewed once again for another article in your wonderful magazine. I have also appeared on a local news broadcast about the prevalence of HIV in rural america. I didn't get much air time, but it did keep HIV in the spotlight for a little bit longer around here. Since first being featured in POZ, I have been pretty busy trying to keep a roof over our heads but I am always ready to jump at any chance to get the word out about what it is like living with HIV and its problems, whether, stygma or just getting by or whatever. Bob
Regan, Marvelyn & the Posse:
I've to congratulate you guys for representing us so well on the Oprah Show like you did. Man!...that was an amazing display of courage and information and I think I speak for all of us in the AIDS Community when I say you did us proud. It was also very informative not only to Oprah herself but to a lot of people out there who're still in denial and refuse to let the information sink in. I hope you had a great time also in the windy City - rubbing shoulders with Magic Johonson and others. Guys, I really feel honored to belong to such a courageous bunch of people and please keep up the fight.
Also on behalf of the Community and my own behalf, thanks to you & in particular to Oprah for giving you/us the forum to inform the kind of reach that she has with her show about the pandemic.
I'm originally from Zimbabwe, Africa myself and a widowed father of three boys. I think we owe it to ourselves and the next generations; to fight the stigma attached to this pandemic. The opportunity that Oprah gave you was a step to do just that. Unfortunately, for those in my native Zimbabwe, they did not see that show; like I used to watch it since years bygone; before the onslaught of economic sunctions currently imposed on our motherland by the powers that be. Oh how I bemoan and wish they had watched this kind of show with you guys on it and the kind of information that you shared. As a minister of the gospel and concerned single father; I can only hope that one day these sunctions will be lifted and alleviate the suffering of my people over there.
I also learned a thing or two just listening in and watching you guys on the show. Kudos to you all. God bless you and lots of love. Peace!
Hi there Regan,
I read an article about you in a Spanish magazine: I do not know whether I have HIV or not, as many Spaniards. The situation here, nowadays, is exactly the same as it is in your country: people never think it is going to happen to them. But do not think that your words are not going to change the world. Here, in an insignificant town of Spain, I am going to get tested because I have been shocked by your testimony, by your courage, by your words. I have just read you are afraid of flying, but you will always be welcome here!!! Do not pannick about how much you will live. You are precious enough now, you are being a real human being, and, like me, many people are proud of you, now and forever.
Thanks a lot.
hi Regan...i cant read well your blog becouse i am from spain and i don´t understand all the lenguage...i like´d to say that you are a brave person...i read your interwiew in one spanish publication (Xl semanal)and i think that you are a spacial person that can change the world, becouse your voice can chang the vision of aids. All people can suffers this problem, the aids is in any place...and any can be inffected
thak you for your blog
ps...sorry for my very poor english
Regan - thank you for being such a POSITIVE representative for us living with HIV! It was great meeting you at the Staying Alive Conference in New Orleans. You are now someone I definately look up too and admire!!! Love from Alaska - Jon