I am constantly being accused of glamorizing AIDS. Really??? Because as glamorous as I am (I prefer the word Marvelous by the way, but whatever) there is nothing glamorous about HIV. Including the thoughts and fears that race through my head DAILY.
You want to know what my worst fear is besides that one day the medicines that I take could stop working, or that there will never be a cure for AIDS, or that I will always be judged for something I have and not who I am. And let me not forget about the day that I can’t afford health insurance. My worst fear is catching a disease that I have no control over getting, like a form of cancer. HIV is bad enough on it’s on, oh trust it don’t need no side kick.
Also, There is also nothing glamorous about taking 7 HORSE pills that still make me gage after 4 1⁄2 years taking them. I take them until the point that my eyes water. I actually use my pill taking as a make-up remover. You see every night before I go to bed or around 11:00 pm Eastern Time it is Marvelyn’s Medicine Time. So after all long day of long lasting mascara, I simply take my pills and my mascara begins to loosen up and than starts to run. What is GLAMOROUS about running mascara people?
I contracted a 100% PREVENTABLE disease people, which that is my message, not how glamorous I look doing it! That’s what wrong with people now. Shame on you! Lol. Bottom line, HIV sucks, I swear.
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42 comments:
you are my hero, you are Marvelous
You are hilarious!
I guess it's a thin line between trying to de-stigmatize it and making it look cool. Your post clarifies this very well ;)
About the pills, I used to feel exactly as you describe, until I started thanking having them and wishing all the people in the world that needs them can have them as well at the time I'm about to swallow them. It did make a whole difference for me, try it!
I heard you tonight on NPR News and Notes. Good job. I am buying your book. Hang in there and God bless. More young people (everyone, really) need to hear your story.
Marvelyn, I bought your book this past Saturday and was unable to put it down, needless to say, I finished it in one day. I absolutely loved it! You have definitely touched the lives of so many people.
Many of us make stupid choices in life. I, myself made many. I am very ashamed of the fact that I've been educated on STDs & HIV and still made stupid choices. The last time I was tested was about 1 year ago, thankfully it was negative. After reading your book, I have to tell you that you've opened my eyes... and I've promised myself to take better care of myself. I have an 8 year old daughter who I want to be here for, and I will make sure she reads your book when she is of age. Its so sad to know that there are so many ignorant people in this world. Just keep your head up girl. You are definitely one of those ppl I would love to have as a friend... a true inspiration. Good luck always!!.. Lizette C. NY
Just wanted to say thank you:
you said it all..your life is my life and you showed me that I can be beautiful with HIV..
Keep up the great work that you are doing and may god bless us all.
I bet HIV does suck. You have a very nice blog and myspace page.
MKRob
Hello -
I am an independent film maker here in Atlanta with long years of experience at CNN producing medical and science news.
I have produced a 90 minute documentary entitled The AIDS Chronicles - Here to Represent.
The AIDS Chronicles - Here to Represent is a unique look at the social and cultural impact of HIV/AIDS on the urban African American population.
This work is told through the actions and thoughts of those who are infected or affected by the disease and by African American health experts who dispel the myths and reveal the facts about HIV/AIDS.
It includes segments on:
African American women and HIV/AIDS
Heterosexual, bisexual and homosexual African American men and HIV/AIDS
The conflict among the African American churches on how to address HIV/AIDS
The convergence of poverty, homelessness, substance abuse and HIV/AIDS
Some of the most important social and cultural aspects of HIV/AIDS in the adult African American urban population are covered in very real, personal, balanced and accurate scenes.
African American experts who comment in the film, including Phill Wilson (Black AIDS Institute), Mindy Fullilove, MD (Columbia University), David Malebranche, MD (Emory University/Grady Hospital & The President's Commission on HIV/AIDS) and Bill Jenkins, Ph.D (Morehouse College Center on Health Disparities) do not hold back on their assessment of the current situation and the basic preventive actions necessary.
This film was almost 5 years in the making. Since it's completion in the fall of 2007, it has been officially selected to show at the following film festivals:
Urban Mediamakers Film Festival, 2007
The Atlanta Film Festival, 2008
The San Francisco Black Film Festival, 2008
Sweet Auburn International Film Festival 2008
International Film Festival, South Africa 2008
Mid Atlantic Black Film Festival 2008
Hear a Podcast interview with me about The AIDS Chronicles - Here to Represent at this website:
http://www.gapodcastnetwork.com/episodes/3919
You can see more about The AIDS Chronicles - Here to Represent, on my website
www.bbarash.com
and watch brief excerpts on YouTube at
http://www.youtube.com/watch?v=qpkmkmoa4eE
and
http://www.youtube.com/watch?v=N64DIZD81nk
and
http://www.youtube.com/watch?v=7lb61PSqmzU
The AIDS Chronicles - Here to Represent has gotten a strong positive response from African American audiences in the Metro Atlanta area and from Morgan State University and the National Centers for Disease Control and Prevention where it has also been shown.
Metro Atlanta non-profit organizations like SisterLove, Inc., local health departments, HIV/AIDS education and outreach groups and churches have been showing the film to very receptive audiences.
I am distributing the film nationally on my website.
Feedback from audiences show that it can be an effective instrument to motivate people to get tested, know their status and protect themselves.
If you have any questions or would like a complimentary 20 minute Demo DVD of excerpts from The AIDS Chronicles - Here to Represent, please send me your mailing address.
Sincerely,
Bailey Barash
Got your info from BlackAIDS Memphis/Ernest D.! Stay diligent my queen, looking forward to seeing you in Memphis soon. ;-)
I am so proud of you!
Just seeing your advertisment on AOL NEWS caught my eye and I had to read about you. I haven't purchased your book yet...but the story about you was enough to make me stop and think about the next guy "I FALL FOR"...I want test's done and commitment of being exclusive prior to risking it all.
It is sad that we all are so trusting by their word alone that they are STD free. I pray that their will be a cure that rids this disease and that the treatment that you are on helps you feel better. I am proud of you for coming out with this book and sharing your story.
HUGS! C.
I purchase your book and read it the same day....Now I am putting it in the hands of some sexual active young adults, My own kids!
I commend you on all your efforts in getting the word out, however I am not sure if the word is been pushed into the communities fast enough...we need more active people like your self.
Hats off also to the Micheal Baisden show where I gain the info on your book. I also caught a little on CNN-black america.
My prayer is for God to give you the strenght needed to finish this race. Keep your head-up and press on. People are so quick to judge. Thanks for being about the business of saving a LIFE!
The EDUCATION you provided is POWERFUL....Like 2pac say "Keep Your head up" I love you for life little lesson.
marvelyn...girl...what you tell me when we id that photos shoot...HIV bout you that fabulous pocket book...lmao...i love you girl and i miss talkin to you...you better call me...SOON!
That bottole of voss water is hot though...is that still or sparkling. and that apple look a lil aged...
TALK TO YOU SOON LOVE!
oops did i say pocketbook (my granny taught me that) i meant fab hand bag or is it purse?
I'm working on your post right now and I'll be putting the book up on the site too. I incorporated the paragraph from your about why you wrote the book. Keep doing what you do. I'm trying to work out details about the show too. I'd love to have you as a guest once that's finalized too.
God Bless
YOu are right...HIV does suck and there is nothing glamorous about it.
I just found out about your story today. I'm in a feminism and theatre class at Ball State University in Muncie, IN. We have to do projects and my group is doing a project over "What it means to be a women today". We are giving monologues on women who are labeled as a certain stereotype in today's society. I think I will use your story for my part of the project. I hope it works...it should. Anyway, I'm a senior. I'm gay. My partner and I found out he was HIV positive in April. It was a tough time because he went through the same situation you did. He had a bad case of pneumonia and the doctors ended up telling him he was HIV positive. We are still together by the Grace of God. I still love him. He was afraid I would leave him after I found out, but I didn't...I couldn't. He doesn't know how he got it and I believe him. I know he hasn't been sleeping around with anyone else while we were together. All we know is...he got it before he met me. It's so hard because some of my friends and family don't think I should be with him. He is not a burden to me and I know I will be fine. I know times will be rough, but that happen in all relationships? We just have to be safer. We have always used condoms and I've always tested negative.
My partner takes Atripla: a one-pill, one-a-day HIV treatment option. It is working well for him. Have you heard of it or considered it? It sounds like you take lots of pills and I know that wouldn't be fun. There are new treatments out there which is good.
I want to read your book. It sounds encouraging. I'm glad you are doing this to enlighten people about HIV/AIDS. I hate when I see people make mean, cruel comments about you and your story or HIV/AIDS in general. There are some hateful heffas out there. IGNORANT!
Anyway, Thanks for doing this. Good luck with Life. Congratulations with your book. I can't wait to get my hands on it. Have you heard of E. Lynn Harris? He has some GREAT books. I recommend if you haven't read his books. He deals with African American men and women, who are gay, straight, "closeted", HIV, family, and life. REALLY GOOD!
Continue to walk with your head held high. You are an inspiration to everyone - even those of us who are not HIV positive. Kudos!
what an inspiration you are for the world to see and hear. hiv doesn't mean the end it is the beginning to a whole new approach on life,nutrition,choices and spirituality. i hope you will visit the cleveland ohio area soon in the near future, marva. we too can learn how to prevent this disease.
given our unfortunate society's (and specially schools') mentality of preaching "abstinence only", families should actually be rejoicing when the outcome of their sexually active kids is pregnancy. what they need is "real-world" KNOWLEDGE (not this abstinence fairy tale) and easy access to free condoms, no questions asked. I am forever grateful that when I became sexually active at age 15, that these things were readily available for me. what you are doing is wonderful. I truly hope kids and adults alike "get" your message before scores of teenagers catch, as you said, "a 100% preventable disease". all the best to you, Marvelyn. (by the way, just ordered your book).
Hello Marvelyn,
I purchased and read your book. It was wonderful and very insightful. I just wanted to encourage you to continue to run the race set before you with patience. You are doing a wonderful and very unselfish thing. When opposition continues to come your way set your face like a flint and keep it moving cause honey your work is not in vain.
God is smiling and his favor is more precious than gold. God doesn't think like man, we are all fair game down here on this earth, but by the grace of God there goes I. Little do you know your life is richer and more fulfilled than what the world considers the most healthy persons is. A lot of peoples souls and minds are sick which is way worse than what you're facing. You are alive more alive than you would be if this had never happened to you. All things work together for the good to them that love the Lord!
I saw how much HIV sucks. My sister had the virus too. Continue taking care of yourself, that's exactly what you're suppose to do. Live life, it's still yours.
This blog is really fantastic as I have gone through all the posts. I don't know why the blog mater is not interested in posting some more relative information. I request the blog mater to add some more content to this great blog. I shall link from my blogs to this blog soon.
I was simply wondering why we can’t find some thing useful in this direction. Since HIV and its treatment is an important issue or information we need more specific information on this subject. It is free public information website on HIV and AIDS. HIV and all about HIV world will be available under one roof. This is your complete resource website. This is a complete resource for HIV patients and doctors. I have found a nice informative guide on HIV from following URL http://www.hiv-info.org/pr.htm
This blog deals with How to Cure HIV Through herbal medicines and Holistic Treatment. I dreamt of a HIV free world after reading this guide.
Hope that you will add more free information to the comment boxes to let other people read about these interesting subjects.
God bless you all-
Hey Marvelous(marvelyn),
I am just writting to say that your book was a one day reader with me. I have to pass this on to the girls in the hair salon, and all my nieces, and newphews(the one that can read). If they cant I will tell them and encourage them to use protection at all time, which I do this is my therory,"when you get with a new person you tend to use a condom the first time or maybe the second but if you have intercourse the third time, you will not use a condom"! Ladies I am just keeping it real! I have read your storie and I have made some mistake and did what any woman will do, but what will happen if I come inefected, I will be in the same boat as you. Marvelous, you are strong and just as normal as any other person on this world. I read your story and I am so touched by it, i want to get more involved. I must say I took a test while reading your story, and encourage friends to go with me, I am negative but from this day on I will be cautious.
TO EVERYONE THAT IS READING THIS THERE IS A CURE ; THE PRESCRIPTION IS CALLED LOVE, RESPECT, AND MOST IMPORTANT JESUS. UNDETECTABLE FOR 5 YEARS AND COUNTING. WE MUST ALL PUT OUR FAITH IN GOD THE CREATOR OF ALL THE ALPHA AND THE OMEGA.
Sister may God bless you abundantly for touching so many souls. Please we need you to visit your mother land Africa and share this miraculous story. It will touch so many lives and bring hope to millions of HIV positive young people.
Farai
AS SOMEOME LIVING WITH HIV part of the stigma is that people have to have hope!If people knew that there is life after hiv combined with being hammered by PSA's that scare people into not getting tested.The emphasis should be a combined approach with more time given to not waiting until it is to late to get tested. My daignosis came after a year of testing. My first sign I now believe was facial paralysis on one side of my face but I had never heard that as a possible sympton. They called it bells palsy which is a term used to explain the unexplained occurence.I applaud what you are doing as life after Hiv is the answer to getting more people tested!People already know what the cause is and how to prevent it. A great Psa would be two people getting tested one negative and one positive then having person such as yourself give a testimony on life after Hiv giving the answer to the question what will happen if I am positive, more people will get tested.
Marvelyn, you are an astounding young woman who did not anticipate being on this journey but nonetheless blazed a trail of inspiration for others. I did not know about the "horse pills" sorry to hear. Although I haven't bought your book yet, I hope you have taken into account the potential for a permanent cure for this ailment in the very near future :)) My heart tells me it is not too far especially with a resilient person like yourself. My prayers for you, me and everybody that can benefit from sharing this knowledge. Please continue being brave remember we are all rooting for you.
I am middle class white mid twenties year old college student from AZ, and...I realized I am not quite so different than you, even though I'm negative. I was kind of born with an unfortunate condition...Tourette's Syndrome, with the "side kicks" (as you call it) of depression and OCD, all "spectrum disorders". I also have to take about six pills a day, have to watch out about what may interact with them, take them right before bedtime (choke them down is more like it.) So I know how it is. I will have TS for the rest of my life but the key is to live with it, day by day, and stay on the bright side of life. I have to deal with living in a body I have no control over, having to make excuses for things I do and say, scream until I lose my voice, have such spasmodic "ticcing" episodes that sometimes bruise and hurt my body, every day....and getting through college is nearly impossible, grunting and twitching throughout the class. What I'm saying is I know what it is to have a debilitating condition, one that is a tender subject, one that is commonly misunderstood, that I have to take lots of pills for.. even though it is not as serious as HIV, I still somewhat understand the little things you mention. Always look on the bright side of life.
You are loved and you are smart and have many smiles ahead of you. You are doing a great thing, and it inspires me to want to correspond with the associations for my condition. How did you start?
Oh. Right! ..lol... I'll find that answer in your book. :)
I recently attended the Seeds of Change Conference that you spoke at in Jacksonville, Fl and it was an honor to hear you tell you story but when I read your book, which was very hard to put down and I read in one night, I commend you for the efforts you have put out all over the world about HIV. I counsel individuals on a daily basis who have not gotten to the point of coping or even feeling comfortable with their own life with living with the disease. I can know share your story with them and provide them with your book for inspiration. I also will be purchasing more of your books to past out to my nieces and other family members. You have a testimony and believe that your story does need to be heard all over. I don't believe you are glorifying it, you just telling it like it is. Thank you for the autographed copy of the book.
You are a very strong woman keep it up. Talk abou tbeing fab n' fierce :)
You are still beautiful no matter what people think. If you believe and trust God he can heal you. Faith is the substance hope for and evidence not seen. Why put your trust in man? God did not give us the spirit of fear. God healed the woman who bleed for days. There is nothing too hard for God. May God Bless you is my prayer.
God Can...He will!
That is the new trend my friend. I am in Kenya, working with an Organizaton that promotes HIV Prevention and alot of times, we have had to deal with this form of Stigmatization amongst our colleagues who are open about their positive HIV status.
I think the issue we need to deal with is that, our brothers and sisters who know their status and are willing to use their testimonies to help save lives of others who might not be as fortunate are actually heroes. We should be able to celebrate them for advocating Positive behavior change.
Go sister GO! U r a hero girl.
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Hello
i like this council (I contracted a 100% PREVENTABLE disease people, which that is my message, not how glamorous I look doing it! That’s what wrong with people now. Shame on you! Lol. Bottom line, HIV sucks, I swear.)
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