I am 28. White. A Female. And a former Peace Corps Volunteer. I am HIV Positive. This is my story of how a few months, a few people, and a few events in Zambia changed me and my life forever. This is the story of how I contracted HIV and brought my Peace Corps Journey to a crashing halt... and how I am working now to pick up and put back together the pieces of my life as a newly diagnosed person living with HIV. This was not the journey I had originally planned... my path has traumatically and dramatically changed... but it is the one I am on now. There is no going back. There is only forward. I welcome you to follow along with me as I attempt to explore this new life ahead of me, whether you are someone from the Peace Corps community, or someone living with HIV. I welcome your comments, questions, suggestions, and opinions. Let us go forward together. To start from the beginning, click here He Gave Me More Than A Bracelet.

Friday, January 6, 2012

Another Response to Readers

"Anonymous said...
The support you receive through these comments is wonderful, but as a former PCV and staffer, I wonder what, if anything, you learned. Do you have any regrets? Did you make any mistakes you can tell others about? Do you have any advice for current and future PCVs? When you're older, what might you tell your daughter before she leaves for international service? Your wonderful candor can be complimented by a bit more introspection."
 
"Anonymous said...
Thank you for your story! I think you might have more to say, however, than "I have nothing to be ashamed of." Something bad happened to you. In addition to not being ashamed, can you also help others? Please tell us what you learned. What should we PCVs do or not do so we don't end up sick as well? Are we all robots who may end up in the same situation like you, or did you learn something from your experience that we all should know-- and do?"
 
Thank you for your questions and for pushing me to share a bit more. I feel that these questions all kind of add up to the same sort of idea... What mistakes did I make? What have I learned? And what advice do I have for others? Let me answer as best as I can:
 
I made many mistakes...
  • Judgment- of others and their sexual activities
  • Having a Sense of Superiority- in thinking that I was a well-educated person and something like this wouldn't/couldn't happen to me
  • Lack of Education- thinking that I had HIV Education and training (it wasn't until this happened to me that I realized HOW LITTLE I really knew...)
  • Misunderstanding- of the "risk levels" of certain activities
  • Succumbing to Peer Pressure- thinking "others are doing this... why can't I?"
  • Trusting Too Much- that what a partner tells you is the absolute truth
  • Not Asking Enough- of his activities and history
  • Not Using Protection- simply because it seems "awkward" or "weird" to me to use condoms for oral sex
  • Attempting to Fill a Void- in ways that may have been more instantly gratifying, rather than healthy and safe
  • Enjoying the Extra Attention- and flattery from Zambian men a little too much
  • Not Reaching Out Enough- for assistance with understanding and dealing with the cultural differences relating to sex and relationships
I have learned...
  • This can happen to anyone. NO ONE IS IMMUNE.
  • One action- one poor choice- can change your life forever.
  • Low Risk does not equal No Risk.
  • There is way too little education about HIV- in other countries and in the U.S.
My advice to others...
  • Educate yourself. Research. Read. Talk to people. Ask questions. Don't ever think that you know all there is to know. There is always more that you can learn. A few classes or trainings on the topic is not enough. Follow up to that and do your own research and information collection. Because, ultimately, it is YOU that will have to deal with the consequences (not your trainers).
  • Protect yourself. In every way that you possibly can. If you are participating in sexual activities, then you need to be safe. HIV (and other STDs) can be transmitted even during seemingly "low risk" activities. Condoms should be used for all activities- I would even say for touching or "mutual masturbation". Fluids, even pre-cum= risk. And remember that even condoms are not 100% safe.
  • Take time to get to know your partner. Ask questions. Talk. And ask some more. Be patient, and go get tested together- BEFORE engaging in any kind of sexual activities. If you (or your partner) cannot wait- ask yourself Why? What are the motivating factors here? What is REALLY leading me to NEED such immediate gratification?
  • Finally, consider the possible consequences of your actions. Life is about weighing options, making decisions, taking action, and then dealing with the consequences of those actions. Make sure that you are prepared and comfortable with dealing with whatever outcomes your actions may bring. Decide if this one moment is really worth the rest of your life?
I hope this helps. I am sure that there is even more that could be added, but at least this is a start :-)

22 comments:

  1. There is nothing wrong with asking your partner are YOU CLEAN??? any doubt go for testing One night stands are playing Russian Roulette with your life. Get a partner that both of you agree to be mutually exclusive to each other for safety sake.
    Nothing is for sure but one can take reasonable steps to help themselves and their partner. Honesty and testing is the best policy.

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  2. This cannot just happen to anyone honey. There is a way to prevent all STDs and its called waiting until marriage. If you can't do that its called getting tested together and waiting until you know for sure. Plenty of people are "immune". Those who do not engage in activities where you can get HIV. Everyone is NOT doing it.

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    1. This blog is about a person's strength and her attempt to educate others who are sexually active how to better protect themselves. And no NOBODY is immune, it is attitudes/opinions/stigmas like the ones you have demonstrated here that make blogs like hers not only important but necessary. Everyone is entitled to their opinion, but I urge you to re-evaluate yours.

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    2. Also, even if you practice abstinence until marriage, you are still at risk for HIV and other STIs if your spouse has lied about their previous partners or testing status or is unfaithful during the marriage. Marriage does not make you immune to STIs. You are only immune if you abstain from ALL sexual activity for your ENTIRE life. And since most people consider sex an essential part of ones enjoyment of life, that is not a realistic or desirable option for most people.

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  3. To whoever wrote the above comment, I think she is well enough informed to know, yes abstinence would obviously protect you against all diseases. So would not leaving your house so you don't run the risk of getting hit by a bus, or not driving to work so you can avoid car accidents. Hindsight is 20/20, and I sincerely hope that no one judges you in your time of need.

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  4. It's not judgement. It's a comment on the "this could happen to anybody" theme. There are many people who choose not to make those choices. Again, "everyone" is NOT doing it.

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  5. Driving to work and sleeping around are not the same

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  6. I think you're being too hard on yourself.
    It sounds to me like you were making reasonable, safe choices, and were being responsible. (It is extremely rare where oral sex can lead to HIV infection, but unfortunately it happened to you). But a million other unfortunate things can happen in any circumstance in life. You could have made a choice to run across a busy highway (which often is the case in developing countries), and get permanently maimed by a speeding motorbike, but would never have the same level of self-questioning not receive the same sort of judgmental attitude as when we get infected with HIV.

    I probably got infected with HIV 25 years ago from one stupid choice. -- and there's some people (like the one above) who like to be high-minded and judgmental because of it -- but it's their fucking problem not mine. Yet we live in a society where people get heart attacks and strokes, not from one stupid choice, by stuffing themselves with unhealthy food or smoking thousands for cigarettes, yet the person with heart disease or lung cancer doesn't get near the ridicule that a person with HIV gets from making only one unlucky choice. Crazy, isn't it?

    You have to get over the fact that there are just going to be self-rightious assholes who have their religious/fundamentalist hangups, particularly around sex, but that's not our problem.
    I'm not saying that having AIDS over the past 25 years has been easy, especially having lost hundreds of friends from the disease, but it has taken me on an incredible journey -- physically, mentally spiritually that would have never have happened otherwise, and I've met some pretty amazing people (and yep, a few assholes, lol).

    Life is full of thousands of tragedies that can happen, none of us are immune to that. We try to be careful, make good choices, and do the best that we can. But we have to participate in life, and that always involves risk. Without that we live a sterile, meaningless existence -- as too many people already do.
    But you joined the Peace Corps, so you already know that.


    Fifteen years ago, when I was very sick, with probably only a few months to live, I moved 2000 miles across county to escape the intolerant town where I raised. (I would have rather die among strangers than spend the last few months of my life in the place where I was born). (Yeah, I know about rejection from judgmental ass-holes). Shortly after arriving in Oregon, I read something on the wall of my new church which always stuck with me: "Don't pray for an easy life, pray to be a strong." The truth behind that is that no life will be without its own set of misfortune and tragedy and we can't pray them away, but we can have the strength to get through them.
    As someone who has been through this for 25 years, the truth is, you are on your way to a pretty incredible future.
    Your'e going to have a great career, lots of friends, fall in love, get married, have children (if you choose), and although it might be a bit more complicated, it has no bearing on your HIV status. A person who is HIV+ will often take much better care of their health than the typical American, and will end up much healthier as a 50 yo than their HIV- friends. We've learned the hard way how precious life can be and the importance of good health, that we don't take it for granted. We work harder to squeeze as much out of life as we can.

    And, finally, as someone who attends many HIV conferences, for the first time an effective "cure" is actually foreseeable, maybe not for another 10-15 years, but it's getting closer all the time.
    Gosh, there's so much to look forward to!

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  7. I do not know Jessica, but within days of her original posting I have been following her story as well as reading all the comments. I am so impressed with her candor to share the intimate details of her experience, and I am not talking just about her relationship with her guy, but also about her feelings of being HIV+ and the knowledge she has discovered about HIV & AIDS. I have a 25 year old son in the Peace Corps and I would hope that if he were to contract HIV he would have the strength that Jessica seems to have. Although he has limited internet access, I have already sent him an email recapping Jessica’s experience and shared with him some of what Jessica has to say about no risk, low risk, and high risk. I will be curious to know if he thinks oral sex is “safe sex” when it comes to HIV. When he was a teenager and we were having “the talk” with him (there were many!) I never thought a condom would be necessary for oral sex although we emphasized it over & over for intercourse (for both protection of STD & pregnancy). So, if he does not already know that a condom would help protect him from STDs & HIV during oral sex, he knows now. Sadly, thanks to Jessica’s experience.

    Jessica, perhaps a future poll question could be something about before coming across your story, how many people were told that condoms would help protect form HIV during oral sex? You are much more eloquent with words, but I would be curious to know. I grew up and was in college during the time when AIDS was a major topic of news, I have worked in the health field, and raised children who I taught/badgered about safe sex to protect them from STDs and pregnancy, but I NEVER told them to use a condom for oral sex. I don’t pretend to know everything about everything, but until recently I never heard that a condom during oral sex was suggested/recommended to protect from HIV.

    A lot of people in Jessica’s situation would curl up in a ball and hide. To Jessica’s mom, I hope you are very proud of your daughter. She seems like an amazing young woman and I am sure some of that comes from you! I feel badly that while her intention of blogging about her situation seems to be nothing more than sharing her story and help educate others, some people feel the need to respond with anger & hostility. Of course they are entitled to their opinion on the subject matter, but give the girl a break! Asking questions is one thing, but belittling and scolding is another.

    When I read a comment that Jessica wrote to one of the nay-sayers, I was floored! She did so with such decorum and maturity. She is 25! I am more than twice her age and I wanted to scream and yell at that anonymous commenter for being so mean. Jessica is sharing HER story. I am sure she appreciates the following of support and she seems to welcome questions, but calling her “honey” was disrespectful and condescending. There are a few other anonymous commentators (or maybe it is the same person?) who seem to be judgmental. To those people, I hope that you or no one you know ever has anything similar to this happen to you because my guess is you would be one of those people who would curl up in a ball and hide in shame.

    As I said this is her story, show her some compassion. She is not some young, naïve, uninformed teenager. She obviously did not have all the information or perhaps she just was the *1 in 1,000. Either way, she is dealing with a life changing disease and I would hope some of these hostile commentators would step back, take a deep breath, and let Jessica continue to share her story. *using “1 in 1,000” is not a fact found anywhere in the books, I use it only as an expression and example.

    In closing, Jessica I hope this day finds you feeling well. Both physically and emotionally.

    Keep the faith!

    A Concerned reader, Mary

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  8. Thank you fellow Peace Corps mom for writing the response that I've been having difficulty framing. My son will think I wrote it! But next time we are able to talk, we will be discussing this journal in depth.

    Readers should note that neither marriage nor testing are sure routes to protection either. Infidelity rates are significant everywhere. People can test negative even when carrying the virus, particularly early in infection.

    Thank you Jessica for your courage in sharing your story.

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  9. To Mary,

    Thank you for the wonderful post. You better believe that I am so very proud of my daughter. To any others all I can say is remember the title of Jessica's Blog "No Going Back-There Is Only Forward" If she can use this blog to educate just one person, and maybe change just one person's choice, then I say she has done an awesome job.

    Love you Jess,
    Keep on writing,

    Jessica's Mom

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  10. From Mary to...

    ... the other Peace Corps Mom, by sharing Jessica's story with our sons and hoping/knowing they will share it with their fellow volunteers in country and perhaps even with community members, Jessica has already educated many!

    ... Jessica, on behalf of the parents of all the other Peace Corps volunteers that gain knowledge from your experience and sharing of this blog, THANK YOU!! As I am certain it will make many think twice about what they are doing or may be about to do.

    ... Jessica's mom, being a Peace Corps parent is tough on good days so I cannot even begin to imagine what it must have been like to get the news from so far away and to not be with your daughter during those early days of her diagnosis. You too are showing great strength & courage.

    Hope today is a happy one.

    A Concerned reader, Mary

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  11. Hi Jessica,

    I'm a PCV and I just wanted to thank you profoundly for sharing your story. You've deeply inspired and informed me.

    Honestly I did not realize that HIV transmission was possible through oral sex, nor did I realize that Acute HIV Syndrome could be so serious or be taken as a reliable warning sign of infection - and I thought that I was well-educated about HIV/AIDS. Those are two uncommonly heard but key messages from your story could have the power to protect so many people from infection.

    On that note, I passed your blog onto our PCMO's and also the HIV/AIDS committee.

    I also really admire your grace in responding to those readers who choose to criticize your justifications. I'm 25 too and I feel (as well as I think you do) that you did everything most people in your situation would have thought to do to protect themselves.

    It COULD happen to anyone; even people who practice abstinence in theory can have moments of weakness or confusion - especially in a high-stress environment like Peace Corps. Living and working in a foreign environment can be very lonely and stressful, and I don't think anyone can really understand what volunteers go through until they themselves have lived it.

    I know of 4 PCV friends of mine alone (of our group of 40) who have had to receive PEP for possible HIV/AIDs exposure during their time. Fortunately all of them are negative. But point being, standing back and preaching abstinence to mature adults, who if they had lived 100 years ago would have most likely have already been married and in an active monogamous sexual relationship at that same age, is a whole lot easier than being here and living it.

    This said, I'm not opposed to the promotion of abstinence - but I think as far as HIV education goes, the priority should be on empowerment - giving complete information about the risks of transmission of HIV and ways to prevent it (including abstinence, of course) - the priority should not be shaming people into making healthy choices.

    Anyway, a big, big hug to you Jessica, I will definitely be following your story.

    Steph

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  12. Jess,

    I love all the love coming to you and your grace with handling those who choose to judge without having walked in your shoes. You are helping more people than you know. As we can see, it's not just PCVs, but also PC Parents, and I'm sure many many more. I'm quite surprised anyone would think that abstinence is realistic, especially for young adults. And even if you do wait, there are always chances of contracting something. I've learned quite a bit from visiting the ob/gyn and asking questions about what they have witnessed (prime example: virgin before marriage contracted an STD of which 80% of the population has from her husband). As one of the comments above, we have to participate in life and life has risks. I know you are going to continue to have a beautiful life full of amazing things because you choose to not sit back and watch it pass you by. =)

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  13. Jessica -
    Thank you for teaching us your hard learned facts about HIV. It hits home to me because I have a 25 year old daughter in the Peace Corps in Zambia. I admit I worry about her, but I also know she is a smart woman and is making smart choices. She is reading your Blog as well and commented to me how strong she felt you were. I cannot imagine being in your place nor in your Mom's. You are both strong. Continue to educate us. I wish you all the world's happiness.

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  14. Hi Jess,
    My son is a PCV in Malawi. I shared your story with him today and he has agreed to bring it to the attention of his PCMO and VAC. Hopefully more education will bring more prevention. He was pretty blown away and wishes you all the best.

    PCV mom

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  15. I'm not sure what to say that hasn't already been said much more eloquently by other posters. I am proud of you for the strength that you have to share your story and respond so politely to some pretty rude comments. It's great that you're taking a rough situation and turning it into a force for good - you are trying to help people learn from your experiences.

    I truly believe that you are already making a difference in people's lives and there will be long-term positive impacts from your blog. I know it has made me seriously evaluate some of my past actions, and has taught me things I didn't know (like the risks from oral sex and acute infection - even though I thought I was fairly knowledgeable). I'm in the placement process now, but I know that when I'm a volunteer the things that are discussed on this blog will always remain in my mind (and even with future relationships in the US).

    Keep up the awesome work! I look forward to following you on your journey and continuing to learn. I wish you the best of luck, happiness, and health!

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  16. 1. I wish there were no anonymous posts: at least use a nickname, otherwise there is, seemingly mean anon, nice anon, etc.

    2. It can happen to anyone. I was a PCV IN 63-65, was w Red Cross in Viet Nam, and I was raped in the USA! I worked with a development NGO and as a US Diplomat on 5 Continents. And let me repeat, I was raped in the USA. At that time in women's rights in USA, I then had to go overseas to get a morning after pill, or have an abortion if that had been needed, and get care as a rape victim. Handy use of PC language skills! There was not access to morning after pills in USA in those days. I think it is important to not think these things don't happen in USA as well as overseas. If I were to make a political statement it might be re the fragile rights of pregnant or possibly pregnant rape victims.

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  17. PS I was lucky. Did not get AIDS. Sheer luck. It can happen to anyone.

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  18. I LOVE gb' s 2nd paragraph! Great point....one risky choice or continual destructive daily choices.

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  19. Jessica- I am a PCV in the Dominican Republic and you are creating a stir here. Many of us thought that the only way you could contract HIV orally was if you had a noticeable cut in your mouth. Thank you for sharing your story. You have increased awareness in this PC community por lo menos. Your maturity and wisdom in dealing with your illness and the wide variety of responses you have received have inspired me and my fellow PCVs. I am annoyed at how those who wish to criticize hide behind the anonymous tag. I would like to say something to them....
    This woman is aware of how her choices have influenced her life and she is taking responsibility for those actions, not only in her day to day life but on the world's stage. Shame on you for criticizing her and hiding behind anonymity. She has not done so and therefore given you this opportunity to judge her. If you expect to be taken seriously then you should publish your posts with your name. It makes me think that you have shame about your comments and ideas and therefore should simply be ignored. Respect this woman and her courage.
    I hope Jessica that you realize that these cowards are not worth your time. However, I suppose, you wonderful lady, that you will show compassion and love to those who deserve it the least. Courage my friend and know that there are many who are routing for you around the world and at home.

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  20. As the original "Anonymous" who posed you, Jessica, the question to which you took a blog post to respond, I would like to clarify. I was asking because I was honestly mystified at your shock of getting infected. As I mentioned, given the high rate in Zambia, there is a high risk, period.

    To those people judging ME for my honest question - remember, we ALL live in glass houses. Read again - I was asking in a sincere manner. I was baffled and indicated it. Too bad you have to attack me for my honesty - I am not the type to sugar-coat things, and if you cannot handle it, grow up.

    That being said, if everyone again reads my comments, they are not judgmental - they are honestly asking you a question. I do not consider myself "better" than you (believe me, in my youth I also engaged in "risky" behavior, though in the U.S., not in a country with such a high rate of infection).

    Yes, you are handling this well, though I am sure you have days where you are angry at the world, or G-d, or whomever, that this happened to you. This is normal. Perhaps you should write a little more about what you are feeling - anger, sadness, frustration, joy, whatever.

    And yesm, thank you for sharing your story. Clearly, it is creating discussion, which makes for the best form of education. That is one positive to come out of your experience - many people are indicating that they honestly did not think oral sex was risky.

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