Wow. Another Oral Sex Issue...

My friend sent me this article the other day that explores another risk of unprotected oral sex. I can honestly say that this is new news and information to me. Very interesting...

Please read HPV study finds 7% of U.S. teens, adults carry virus in mouths

To Date or Not To Date?

As we have now already started a great conversation, and caused people to think about the idea of "hiring" someone with HIV, I would now like to ask the even more difficult question of whether you would ever date someone with HIV?

Those of us with HIV will have to struggle with this dilemna for the rest of our lives... telling potential partners of our status, and making ourselves vulnerable to rejection and pain.

I can honestly say that prior to my infection, I probably would have answered "No" to this question. In fact, I had a situation where this kind of came into play. I want to tell you a little bit about something that was going on with me in my village prior to meeting my "townie" and contracting HIV.

I had been in my village for a little over 3 months. I had made very close friendships with my fellow teachers, men and women. However, there was one male teacher that I formed a particularly close friendship with. I was attracted to him, and it was pretty clear that he was attracted to me too. We flirted and joked with each other. We spent time together during school, after school, and even on weekends. We really got along well. However, even with the growing closeness and attraction, we kept things strictly at the friendship level. The other teachers and villagers started noticing our relationship though, and comments started being made. It didn't really bother me. However, it did bother him, and he actually started putting some distance between us, because people were "bugging" him about it. We eventually discussed this and once it was out in the open, we started to move past that hump.

We had just gotten to the point of discussing the possibility of taking our friendship further, when some of the female teachers approached me about something. They told me that this particular male teacher had been having a sexual relationship with another female teacher. Furthermore, they told me the rumors that that this female teacher was known to "sleep around" and also that she was "sick". (They don't really say that someone has HIV, they just reference them being "sick"). Suddenly, I was faced with this dilemna that the man I had grown so close to, and thought I had such a good friendship with, was possibly sleeping with someone else, and was possibly infected with HIV!

Being that him and I were so close, and I happen to be a very straightforward and open person, I confronted him about this issue. He denied that he was having a relationship with the other teacher. He said that it was all just rumors that had been created because other people were jealous. I continued to question him about it, and also ask others about it to try to figure out the truth. I wanted to believe him, but I also just couldn't ignore what everyone else was saying, especially with the whole HIV thing being mentioned!

Unfortunately, this all happened the week before I left for my trip to the capital city. I left my village upset and confused about our relationship. He was also extremely upset about it, and getting more and more angry each time I attempted to discuss it. Once in the capital city, most of my volunteer friends said it probably wasn't a good situation to get involved with. As soon as any question about HIV was brought up, the response was usually, "Oh girl, you don't want to mess with that."

I was struggling with this ordeal during my 2 weeks in the capital. I was still having stressed phone calls with him during breaks from our training sessions. I talked in length with my best volunteer friend about our "complicated" relationships with Zambians. It was so tough! Zambian men have such a reputation for being unfaithful and untruthful! We just couldn't figure out how to successfully enter into or be in a relationship with them.

We watched a video one day during those training sessions. It was about volunteers contracting HIV during their service. Out of the group of 27 of us, it was me and my friend who were crying at the end of the video. I was crying because I was scared. Because I liked a guy so much, but was so scared to get into a relationship with him, because there were rumors of him having HIV. Because I couldn't get a clear answer from him or anyone. Because it was so hard and different to have a relationship and communicate with someone with such a different culture and upbringing. My friend was crying because she was already in a relationship with a Zambian and was facing some of the same trust and communication issues. We both wished there was someone there in Peace Corps that could talk to us and help us more with these issues. There are contracted counselors available for mental health issues, however, it was rumored that it was very difficult to get to talk with them, and you had to go through Medical in order to ask for and be approved for an appointment. My friend and I discussed the possibility that maybe the HIV Educators themselves, although not counselors, might be able to meet with us.

After the video, I remember approaching our HIV Educator to ask if we could possibly set up appointments with her to discuss relationship issues more in depth. Although she said "Yes", she seemed kind of unsure, hesitant, and thrown off by my question. I never made an appointment with her. Maybe I should have...

It was during this stressed and confused and upset time that I met my guy in the capital. It probably added to my state of mind at the time and played a role in the poor choices I made 5 days later. It's kind of ironic. I was trying to avoid one situation where I "might" be exposed to HIV, and in turn put myself directly in a situation where I did get HIV. Wow. All I can do at this point is laugh.

Well, I didn't really intend to go into that whole story in this post, but I started typing, and that is what came out. Back to the original question though about dating someone with HIV... I would have said "No" before, but honestly it would have been based on a lot of fear and ignorance. Since contracting HIV, I have learned so much more about transmission and prevention, about risks and reality.

The reality is that, in most cases, it is very difficult to contract HIV. The reality is that with treatment, HIV+ people can reach an "Undetectable" viral load and decrease the risk of passing to a sexual partner by 96%. The reality is that up to 50% of HIV+ people are in sero-discordant relationships (where one person has the virus and one does not). The reality is that couples can have a safe and healthy sex life and at the same time remain sero-discordant for LIFE (meaning the virus is NEVER passed to the partner). The reality is that there are methods of safe conception even for sero-discordant couples. The reality is that people can safely live in and share a household together and never pass the virus. I know this now. I wish I had known more about it back then.

I hope that others can learn more about this and educate themselves. Learn the risks, and learn the reality. And then ask yourself, would you ever be willing to date someone with HIV?

Please respond to the poll on the sidebar, and leave your comments below.

Poll Results: Should a HIV+ person be required to inform their employer of their HIV status?

275 total voters responded to the question:
Should a HIV+ person be required to inform their employer of their HIV status?

17 (6%): Yes.
96 (34%): No.
152 (55%): It depends on the job.
10 (3%): I can't decide.

Thank you all for your responses. And thank you for all of the additional comments left on my post "Jobs. Jobs. Jobs."

As many people (55%) responded "It depends on the job.", I am curious as to which jobs you believe should require a HIV+ person to disclose? Please add your comments here to let me know for which jobs one should disclose their status, and why?

Thanks again!

Project Hopeful: Truth Pandemic

My sister shared a website and video with me last week, and I was a bit delayed in watching it. But, now that I have watched it, I think it is necessary that so many more also watch it.

Project Hopeful is an organization that strives to spread education and awareness about HIV, and to assist American families in adopting children who are HIV+. Their website and video provides such good information about HIV, stigma, and the idea of welcoming a HIV+ child into your family.

Please take some time to watch the video, whether you are interested in adopting, or if you are just open to learning more about HIV.


After watching the video, take some time to explore the Project Hopeful Website, including the "Waiting Kids" section. Also, read this article about the founders and their family.

Jobs. Jobs. Jobs.

They said that starting a relationship would be one of the most difficult parts...

But, for me, it is getting a job that has been the most stressful and difficult so far. You see, this is something my family and I have thought about from the beginning. Can I get a job? Do I have to tell my employer? Is it safe for me to do what I have always done? Do I have an ethical or moral obligation to inform those I work with? Will I face stigma or discrimination? And so on and so on...

A little background for those who don't know me... I am a teacher. I have a Master's Degree in Special Education, and a Bachelor's Degree in Elementary Education. I typically work with children with severe mental and physical disabilities, and children with Autism Spectrum Disorders. My other work history has included extensive nannying and babysitting experience. This is how I paid my way through college.

Well, I have been looking at and applying to jobs for about a month now. I've been looking at a whole range of educational/youth opportunities, HIV/AIDS work, and nanny openings. I was basically just needing and wanting anything to get me back onto my feet again, and to put some purpose back into my life. However, this process has had its own ups and downs.

I went to one interview and awkwardly stumbled my way through avoiding their questions about why I was medically separated from the Peace Corps. After that, I realized I needed to be more prepared ahead of time to answer that question.

As I prepared for my next interview (this time for a nanny job), I struggled to decide what I would tell them. How much would I say? Should I disclose my status? Should I not? I stressed myself out. I cried. I asked the opinions of my family and friends. They all had different opinions...

It seemed that anyone with HIV or working in an HIV organization recommended "No, definitely do not tell them. There is absolutely no reason that you need to tell them, and it could hurt your chances of getting the job if you did."

On the other hand, those who do not have HIV, leaned more towards the, "I really think you should tell them. As parents, they have a right to know who is spending all day with their kids."

Another comment that had been made weeks earlier pounded in my head "I would flip out if I found out that my kids' nanny had HIV!" (This hadn't been meant to hurt me, but it did. It actually had caused me to give up on my job search for a few weeks.)

Interesting enough, those who have been "at risk" for HIV (but ended up not being HIV+) fell somewhere in the middle with their opinions, and suggested I "feel it out, and just decide if I feel comfortable enough with the family to tell them".

I stressed and I stressed and I stressed some more. I didn't want to tell them my HIV status. I didn't think it was necessary. And I did think it could hurt my chances of getting the job. But, at the same time, I felt guilty for "hiding" it or "lying" about it. And I felt bad about having my friends and family thinking that I should have to tell. This has been one of the first times we haven't really all agreed on things.

Finally, I made the decision to go with the advice of HIV+ persons who have been through this, who have dealt with the stress, and stigma, and discrimination in the past. I did not tell. I got the job. I just finished my second day of work.

Do I still feel a little guilty and uneasy? Yes. Do I think I made the right decision for me right now? I hope so...

What do you think?

Poll Results: Have you been tested for HIV?

447 total voters responded to the question:

Have you been tested for HIV?

74 (16%): Yes, once

318 (71%): Yes, more than once.

48 (10%): No, never.

7 (1%) : Maybe, I don't know.

Thank you all for voting! I really like the results of this poll. However, I would encourage those who selected "Maybe", "No", or "Once" to go get tested, or to get tested again. Even for those who have been tested many times, make sure you continue to get tested, and make sure that your partners have been tested too!

Please check out the sidebar for the new question!

The Goodbyes I Never Got A Chance To Give…

I apologize for my slowness and almost absence on this blog for the past week. It was partially due to some other things going on in my life, and partially due to the fact that I sort of lost my place in my story (due to responses to readers, emotional breakdowns, and guest entries), and wasn’t quite sure where to pick up and keep going. So, now that I have some free time, I want to share a little more with you about how I left Africa, and about some of the goodbyes that I never got the chance to give…

---

---

When I fell sick, school was on Holiday. The pupils (my pride and joy) were at home, and the teachers (my best friends) were traveling. I lived with a polygamist family and had the privilege of having a father, three mothers, 20+ siblings, and a whole village of extended family.

When I fell sick, I shut myself inside my hut for 2-3 days. I didn’t even go to get water. I think I mostly ate bread and peanut butter, and the snack foods I had just recently received in a care package from college friends. I laid in bed or on the floor all day and all night.

---

---

My family kept coming and knocking on the door, “Madame! Basisi!”

In my broken Tonga, I just called back, “Ndaciswa (I’m sick/paining)”.

“Mwaciswa?!?! Mwaciswa nzi? (What is paining you?)”

Uhhhh… “Ndijisi Malaria? (I have Malaria?)”

“Ah. Jabija (Too bad.)”

By the third morning when the PC cruiser came to pick me up, I could barely lift myself off the floor and climb into the vehicle. I didn’t even bother to say goodbye to the family. I didn’t take another look at my hut or my yard or any of it. I had a backpack in my hand with a pair of jeans, a couple of citenges, and some underwear. I thought that I was just going into the capital for a few days to get treated for Malaria. I had no idea at that point that I was driving away from my hut and family for good.

I never got to go back… I never got to say goodbye…

---

I’m sure that they were confused. One day the village Mukuwa (white girl) was there, and then suddenly she was gone forever. I later wrote my family/school/village a goodbye letter, though I do not know for sure whether they ever received it. Here is some of what it said…

September 16, 2011
Dear Nteme School, Teachers, Pupils, Friends, Family, and Community,

It is very difficult for me to write this letter to you all. Due to certain serious medical issues, it has been decided that I will not be able to return and continue as your Peace Corps Volunteer. I will actually be “medically separated” from the Peace Corps and will be returning to America very soon. Unfortunately, I will not even be able to come and say goodbye. These events have come about so suddenly and unexpectedly, and I am still a bit in shock about it all. I am so devastated that I was only able to spend 3 months with you. We were just starting to develop some good strong friendships and relationships. I had so many dreams and ideas and hopes for the school and area. I was so excited to get started on teaching and other projects.
    I want to thank you for all of the support and kindness you showed me during my time in Nteme. Thank you for building me such a beautiful house and placing me with such a loving and caring family. Thank you for teaching me to make fire and carry water on my head. Thank you for being patient with me and my sometimes culturally strange or inappropriate behaviors. Thank you for being friendly and inviting me over for meals or just to visit. Thank you for teaching me about Zambian schools and culture. Thank you for talking and laughing and joking with me. Thank you for loving me and welcoming me as one of your own. Even though my time with you was so short, I will remember it and all of you forever.
    I apologize that it has to end like this. I know that many of you will be just as sad and disappointed as I am. I’m sorry for all of the unfulfilled promises and projects I am leaving you with. I hope that you are not angry with me and know that if there was anything I could do to change the situation, I would in an instant. I hope that we can keep in touch, and I wish the school and the whole community the best! I love you and will miss you all!

Looking back, I definitely have some regrets. I wish I would have spent more time with them. I wish I would have cooked and ate with them more. I wish I had been more patient and more outgoing. I wish I had taken more pictures. I wish I would have at least hugged them before getting into the cruiser that day.

---

---

I also left the entire PC community without any real goodbyes. I was sick and miserable in the bunkhouse for a few days, then next thing I knew I was in the hospital hooked up to IVs. After that, it was straight onto a plane to South Africa. I STILL had no idea that I was leaving Zambia for good.

I never got to go back… I never got to say goodbye…

After my diagnosis, I also wrote my cohort of volunteers a goodbye letter. Here is a bit of what it said…

September 16, 2011
Dear RED 2011’s,
    As some of you may have heard, I was recently med-evacuated to South Africa. Unfortunately, I have some more very bad news to share with you. It turns out that I have contracted HIV and I will be medically separated and returning home to America very soon. I have chosen to be honest and share this information with you as my intake group, because you are my friends and family, and maybe something in my story can help to protect you from making the same mistakes I did. I would prefer not to have all of PC Zambia gossiping about me, so I’m hoping as much as possible that you will keep this only within our group. So, here is my story:
    I always considered myself a pretty safe person. Most of you know me as the kind of person that likes to follow the rules, pretty much when it comes to anything and everything. And although I can be a bit “boy crazy” at times, I am actually just a big tease and am actually quite sexually conservative. I only ever had sex with 2 people in the states, and those were both long term serious committed relationships. I never had casual sex before. Well, as we all know- our situations and environments and behaviors change in Zambia. So, I don’t know whether it was the boredom, loneliness, excitement, or just a momentary lapse in judgment- but something caused me to let my guard down and have casual sex in Zambia.
    It happened in Lusaka during IST, with a Zambian that I had known for 5 days. It was on the 5^th night that we had sex. I felt like I knew him and he was a nice guy. He said he had been tested in March and was negative. We had oral sex. Then we had sexual intercourse 3 times, using a condom each time. I thought we did everything right. I thought we were safe. It turns out we were not safe enough. Somehow, either during oral sex or foreplay or something, the virus was still passed on.
    Just over 2 weeks (17 days exactly) later, I fell violently ill with malaria like symptoms. I suffered for a few days at home, before they picked me up and brought me to Lusaka, where my fever and symptoms continued, with no clear cause or solution. When I felt like I was going to die, they admitted me to the hospital in Lusaka. The blood tests were confusing the heck out of them- they could tell something was seriously wrong, but they didn’t know what. They did 2 HIV tests, which both came out negative. As my condition failed to improve, they made the decision to fly me to South Africa. The SA hospital embarked on a series of tests, including re-doing the HIV test. This time it came back positive. They re-did it the next day- positive again. They gave me some hope during this time because sometimes a person can have a different virus going on that interferes with the results and causes a false positive. But, the third test was the last and final “confirmatory” test- and it came back positive.
    It’s kind of hard to describe my reaction- far less dramatic than you might imagine. I’ve been surprisingly calm. I don’t know if it’s because of the gradual nature of how I found out the results, or if I’m just in shock and its all going to hit me later. Right now, I’m just taking it one step at a time. I’ve been in the hospital for 5 days as my condition stabilizes and my blood results improve. Now, I’ve just been discharged to the Med-Evac Guest House in SA for a few days while logistics get figured out. Then I will fly to D.C. where I will finish up the allowable 45 days of “Medevac”, receiving the best treatment, care, and counseling from PC Headquarters. Finally, from there I will return to Florida and try to figure out what to do with my life next.
    I can’t believe this all happened so quickly, and that my experience here has come to such an abrupt stop. I never thought a week ago that it would be my last time ever in my hut and village. I won’t get to say goodbye to my family, friends, pupils, or any of you. I didn’t really even get to say goodbye to Zambia. I didn’t know at that point that I was leaving for good. I didn’t know at that point that I had irreparably screwed up my life.
    I don’t really feel angry right now, more just stupid and embarrassed. I can’t believe I only made it 7 months here before something like this happened. I feel like I’ve let so many people down- my village, Peace Corps, friends, family… I had such high dreams and plans for my time here- and now it’s all gone- I accomplished nothing. I’m jealous of all of you that get to stay and keep working towards your goals. Please stay safe and strong and accomplish much where I no longer can! Please feel free to e-mail me or send me PRIVATE Facebook messages. PLEASE DO NOT write anything concerning my illness or going back to the USA on my Facebook Wall.
    Thank you! I love you all and will miss you bunches! I’ll be supporting you all wholeheartedly from stateside! Do big things!

It has been a few months now, and naturally time has healed some of the pain of saying goodbye, or rather of not saying it. However, I don’t know if I will ever be able to get over the shock of the abruptness of it all, or ever really have full closure.

It has been just over 4 months since the day that I walked out of my hut, unknowingly, for the last time. I have yet to receive my computer, camera, or any other personal belongings from Zambia. I hope that PC will actually ship them one day. I hope that if/when they arrive, there will be a picture, a video, a citenge, or something that will help me to remember it all better. And maybe, just maybe, it will help to bring some closure to me…

Poll Results: Have you EVER had unprotected sex of any kind (vaginal, oral, anal, etc.)?

395 total voters responded to the question:

 

Have you EVER had unprotected sex of any kind (vaginal, oral, anal, etc.)?

345 (87%): Yes

50 (12%): No

Thank you all for voting! Please check out the sidebar for the new question!

A Sister's Story

My name is Stephanie. I am Jessica's older sister. I am married and have a 4 yr old son. We are followers of Jesus and serve in ministry.  We currently have a house full of other peoples' teenage boys that we are raising in our home. We are conservative. We never thought that HIV would be something we would deal with in our family.

When Jessica got gravely ill in Africa, I had been calling and checking in with my mom almost daily for updates. We had everyone we knew praying. One Monday morning I called for an update because strangely I hadn't heard from my mom in several days. I was standing in our kitchen looking in the fridge for a snack, not knowing my whole world was about to be shaken.  My mom sounded funny on the phone and said Jessica was actually flying to DC the next day.  I asked if they knew what was wrong and she said "It isn't good. Jessica wants to tell you herself tomorrow." I knew if they were flying her home it was pretty bad and I was so scared at that point, thinking she must be dying. I don't even think the thought of HIV had crossed my mind yet. Isn't that weird how we seem to block the possibility of certain things from our mind? Anyways, I don't remember exactly what I said but basically I needed to know now and couldn't wait.  So my mom said "your sister is HIV+." Tears started rolling down my cheeks and I sat down in my kitchen, still holding on to the open fridge door. I have never truly experienced being speechless until that moment. I remember my mom talking and talking trying to tell me some reassuring facts that this wasn't a death sentence like it used to be, but I didn't say a word.  My mom didn't want to hang up with me like that I know but I just couldn't even process anything to say. I told her I'd call her tomorrow. Sometime during that phone call my husband had walked in the room and saw me, and he being much wiser than me knew right away what was wrong. He just let me be for a bit and I just layed in my bed and cried. I grieved for my sister, for the unknown future, for what she must have felt all alone in Africa when the doctors told her, for the time we might miss out on together when we are old, for the hard conversations she will have to have with guys she will date...I just grieved for her. I wanted more than anything to fly and be with her.

The next few days were a blur. I talked with my mom and she told me how sick Jessica still was and that the travel had wiped her out.  We had to carry on life as if nothing was wrong. I hated Facebook, everything seemed petty in comparison. I went through the motions.  I'd snap out of it and realize Nehemiah was acting up but couldn't even function enough to worry with it. For about 3 days, I remember one sentence going through my head as if on repeat "MY SISTER HAS HIV. MY SISTER HAS HIV. MY SISTER HAS HIV." I was in shock. I cycled like crazy through the stages of grief. Crying out to God for him to change it somehow, anger, denial, acceptance and back and forth through so many emotions.  Also, because I come from a long line of nerds, I researched like CRAZY! This helped so much because there is so much positive research out there.

Finally I talked to my sister and felt SO much better....she was still Jess, my little sister that I love more than she can know or understand. My heart aches for her and the sickness and situations she will have to face in her lifetime but if anyone can do it, she can.  She is one of the strongest and bravest women I know and we will be right by her side.

I would say the burden of keeping this "secret" was the hardest part. I don't lie, our family doesn't lie....we are just straight-forward, tell it to your face kind of people. Over and over people asked about Jessica and I'd have to say, "she is getting stronger" which she was physically, mentally and emotionally improving and grasping her diagnosis, but it still felt like a lie. So proud of her sharing openly now, it has brought us all such freedom and purpose.
The reactions of others have been amazing! I know my mom and sister have been shocked at my husband and my support. Unfortunately there is such a bad reputation out in the world for "religious" people, as most Christians are perceived. There are "religious" people out there that are quick to judge and show no mercy and no love at all....I do not want to have any part in that. That is not who Jesus is, not what the Bible teaches and is not who I try to live like daily. My friends that follow Jesus have had nothing but kind, loving and supportive words for me and our family. It has been such an eye-opener to me to see how true Christians can and should respond in times of crisis in people's lives. Being supportive does not mean you have to accept the behavior choice that caused this, but it does mean loving and supporting a person created in God's image that He (God) loves dearly.

My advice for the general public, friends, family and PCVs:  be thoroughly educated. Spread this blog and information and Jessica's story like wildfire.  Have HARD conversations with your middle school and high school students, grown children, friends, co-workers, etc. IT IS WORTH IT!  Working together to increase awareness, breakdown the negative stigma attached to HIV/AIDS, and preventing other lives from this disease is all of our responsibility.

Thank you Jess for allowing me to share! This has been healing for me to write, although hard to go back to that first week of finding out. Tears rolled down my cheeks as I typed.  I love you so much and am so proud of you!

Stephanie

A Mother's Story

When Jessica asked if I would do a guest entry on her blog, I immediately said yes, then came the hard part, actually sitting down to write my thoughts and feelings.

When Jessica decided to join the Peace Corps, I was probably as excited as she was. We started researching all kinds of information about the country that she was going to, we bought all kinds of things she was going to need, we got her packed up and off she went. Sure I knew that there would be dangers, but I never REALLY considered HIV to be one of those dangers, and I sure didn’t expect my kid to come home with a lifelong illness.

Off she flew to Zambia, I wished I was with her. Right away she got a Zambian cell phone, I added international talk and text to my plan and learned how to text. We were able to communicate every day, which really helped to ease my mind. Everything was going great, I was learning so much about life in Zambia (I asked endless questions). Jessica seemed to be settling in, she was making headway in her schools, she was making friends and best of all she wasn’t starving. I missed her terribly, surprisingly I got very good at texting, sending cards, letters and packages.

That all changed September 6, 2011. We were texting, and she said her eyes really hurt and she had a bad headache, within hours she had a really high fever and was getting very sick. She called the nurse for advice, the nurse said to test for malaria, and start taking that medicine. I felt totally helpless, at that point all I could do was stay positive for her and keep texting with her. The morning of September 8th they picked her up from her hut and took her to the hospital in Lusaka. I felt better about that, but she was still getting sicker. They were doing test after test but had no answers. The Peace Corps people did a great job of keeping us in contact, Jessica was running out of minutes on her phone and they made sure to get her some so that we wouldn’t lose contact. Very quickly the doctors decided to fly her to South Africa.

On September 14th our world came to a crashing halt with the words “mom I ruined my life, I have HIV”. I couldn’t think, I couldn’t breathe, I couldn’t stop crying. I felt angry at the world. All I wanted to do was get on a plane and go hug my Jessica, my baby. I was so afraid that I was going to lose my daughter.

The doctors in South Africa were giving her a lot of information to read. She was able to call me every day. Every day we had more and more information to share with each other. She was reading what the Dr.’s were giving her and I was reading anything and everything I could find on the internet. I had read about people living long fairly healthy, fairly normal lives. Little by little I felt less devastated by her diagnosis, yet we had this gigantic secret, that only she and I knew at that time.

Jessica knew that I would need to be able to talk about her diagnosis, so she told me that I could tell someone (she suggested our neighbor and very good friend). I didn’t tell my friend right away though, I didn’t want to burden my friend with this horrible secret. But I really needed someone to talk to, so sitting side by side on a sunny beach in south Florida, I told my friend Jessica’s story. We talked, cried, and laughed and in the end decided that Jessica would still be Jessica. I told her all I had learned about HIV. It felt really good to have someone I could talk to.

In my daily life, I was having a fairly hard time coping. I made a couple of big mistakes at work. I couldn’t stand listening to everyone’s little petty problems when I had such an enormous problem in my life. People kept asking about Jessica and I just kept saying she was getting better and, no they didn’t know yet what was wrong with her.

When I knew that she was being flown to Washington DC, I told my oldest daughter that her sister was coming home. At that point my oldest really pushed, what’s wrong with my sister, she knew that the peace corps wouldn’t send her sister home without it being really serious. I told her that her sister had HIV. Her and her husband were immediately supportive. They wanted to know everything I had learned already, they wanted to know if they could do anything. My next call was to my mother. How do you tell your mother, Jessica’s grandmother, that she was coming home from Africa with HIV. My mother was very upset, overwhelmed and scared. She didn’t have much knowledge about HIV and she didn’t like having a big secret . She didn’t know what it would mean for Jessica and all of us in the future.

Jessica chose not to tell her brother for the time being, that was very hard for me because I did not like having to keep a secret like that from my son.

When Jessica decided, on Christmas Eve, to go public with Big Secret, I was all for it. I didn’t like having a huge secret like HIV any more than she did. I could see her getting more and more depressed, and it was harder and harder to be around people that didn’t know. The task fell to me to tell a few people, before the blog went live, the hardest by far was my son. He was so very, very upset. He wasn’t totally supportive of his sister’s peacecorps adventure, he was afraid something bad would happen to her and now his fears had come true.

Jessica asked what advice I had for other PCVs and people in general. I guess that would be keep talking about HIV. Keep sharing Jessica’s story. Keep getting educated about HIV. Talk openly about HIV, don’t hide it in a closet that only increases the stigma, fear and ignorance surrounding this disease.

Jessica I love you with all of my heart, I am so proud of you, and I know that you have so much to share with the world.

Laura
Jessica’s Mom

Not There Yet...

I had a doctor's appointment last week. She called this morning with my lab results.

My Viral Load decreased from 700 to 180. Good. But not to undetectable yet...

My CD4 went from 450 to 343. Not Good. A little bit concerning. We'll see what happens next month...

P.S. My hair is falling out...

Tears

My friend texted me the other day and asked..."How often do you cry? Maybe about living positively? Not being in Zambia? Anything?" My response made her say "Wow. You should write about that." So, here I go... (Please keep in mind that I am not looking for pity or sympathy in writing this, rather simply attempting to share some real honest feelings).

In the very beginning, I don't even remember crying. It was more of a feeling of emptiness rather than sadness. In my medical records from South Africa, the hospital doctor actually reported that I appeared to be "emotionally flat". I guess that is what shock looks like...

Some of the first tears I remember having were on the airplane, departing from South Africa and heading back to America. And for the next 17 hours of that flight, my eyes watered up anytime that I didn't distract myself by sleeping or staring at the TV screen.

In D.C. I cried a good bit, but it was somewhat structured... I cried mostly when I was talking to my counselor or family and friends. I cried during conversations with my roommate, and during phone calls with my ex-boyfriend. I cried when writing e-mails to other PCVs. Yet, I was doing pretty good and staying pretty strong overall.

Once I left D.C. and transitioned back "home", things got a little more difficult. The past couple months have been a bit of a constant, and pretty unpredictable, roller coaster. I've been struggling not only to deal with the HIV diagnosis and all that entails, but also just with the readjustment to life in America, and letting go of the people, and job, and dreams that I left behind.

How have I held up? That is hard to answer. It is constantly changing. I seem to do okay for a few days, or a week, or even longer... and then suddenly something triggers me, and all of the emotions that have been building up inside suddenly come rushing out. There have been times when I have thought about suicide. There have been times when I'm crying so hard that I hyperventilate. There have been times when I could just sit and stare at the wall for hours.

It is not always like this. There are good days. And there are bad days. There is no rhyme or reason to it. It is not something that you just get over. It is not something that just goes away. It might seem okay for awhile, but then another unexplainable moment occurs, when you just sit there and think, "Holy ****. How did I end up here?" You sit and replay the events in your mind, and it is just as hard to believe now, as it had been those first few days.

Like I said, there are good days. And there are bad days. These past couple weeks have been good days. As I told my friend, "I've been kind of riding on a high from this whole blog thing." But, unfortunately, yesterday was one of the bad days. I spent the whole day depressed and laying around, but still trying to push the bad thoughts away and hold it together. By about 10:00pm, everything had built up, and I lost it, and I launched into an uncontrollable crying and hyperventilating fit. I felt totally lost. I felt that I couldn't figure out ANYTHING in my life. Too many decisions. Where to live. Jobs. Relationships. Finances. Insurance. Doctors. Future. What future?

Thankfully, I had a friend with me, who understands all of these feelings, and who laid there and held me and waited for it to pass. It did pass. I slept through the night. And today, I went out and had a pretty productive day. I met with a new clinic and got the process started to get new doctors, and hopefully some counseling services...

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 :-)

Poll Results: Do you personally know anyone who is HIV+?

162 total voters responded to the question:

Do you personally know anyone who is HIV+?

14 (8%):  Yes, I am HIV+
24 (14%): Yes, a family member
69 (42%): Yes, a friend
36 (22%): No
29 (17%): Maybe, I don't know

Thank you all for voting! Please check out the sidebar for the new question!

Response to a Reader...

I have a rough plan in mind for how and when I share things, and the order in which I am going with my story. However, I received some comments today that I feel I must skip ahead and respond to...

Anonymous wrote:
I realize you do not understand why you were medically separated and are not being reinstated, but there are a number of reasons, not the least of which are your own health and that of people with whom you would come in contact.
On another note, hating to be the negative voice, I wonder why on Earth you even went into a sexual situation in a country where the rate of HIV infection is MORE THAN one in seven, WITHOUT protection of any kind, with a virtual stranger. I am sorry if you feel this is harsh, and certainly do not think anyone "deserves" to get HIV, but why? You were serving in an extremely high-risk country, in an extremely high-risk area. You are young enough to have grown up knowing about HIV and how to avoid it. Peace Corps gave you good training about it as well (I am also a PCV). Thus I wonder about your choices. Was it the naivety and arrogance of youth, thinking it would not happen to you? Was it ignorance - did you really not think it was possible?
Sorry if my comment offends you or anyone else, but I am mystified at how you could have exposed yourself to this illness in the first place. ANY unprotected sexual contact in a country where one in seven people have it (and where it is more commonly found in middle and upper class people) baffles me.

Dear Anonymous,

First off, I would like to clarify the fact that I DO understand why I was medically separated. I was medically separated because my body was not healthy enough after 45 days of Medevac status to be thrown back into an environment where I would be prone to more infections and sickness without an up to par immune system. As I said before, I do understand, accept, and even agree with that. I Was Not medically separated for any reasons relating to the health of other people with whom I would come into contact with. That, my dear anonymous friend, would be incredibly ridiculous and discriminatory.

As to the rest of your questions, I would like to start by saying that we are all humans. And humans are, by nature, sexual beings. Stack on top of that the loneliness, stress, and some of the other hardships of being a PCV, and I think many people would agree that we end up up with a strong desire/need to seek out some kind of companionship, comfort, or support. During my training, I remember PC giving us a statistic that at service entry only 20% of volunteers claim to be sexually active, and by close of service nearly 90% are sexually active. In my intake group of 29 volunteers, I can tell you (with absolute certainty) that over 50% of us have already engaged in sex (with Zambians, ex-pats, or other volunteers) in country. This group has been in country for less than 1 year. I am not alone. Volunteers were having sex before me, and they will continue having sex after me. (In fact, this comment has inspired me to stop my poll early, and start a new one. Please take a moment to contribute your vote on the new question!)

Now, is what I did stupid? Did I make mistakes? Yes! Absolutely! But, I also made attempts to protect myself and lower my risks. I did what I thought Peace Corps told me to do to be safe. I asked if he had been tested. I used condoms when I had sexual intercourse. One of my biggest MISTAKES was believing that oral sex is a "low risk" activity, and equating that to "no risk". Peace Corps trainings (and other HIV trainings) emphasize this idea of "high risk" vs. "low risk" activities. I've come to believe now that this is an extremely horrible way to go about teaching people. To me, there is no such thing as "low risk" anymore. It doesn't matter if you are having oral sex or anal sex, or whether the HIV rate is 1 in 7 or if it is 1 in 100! A risk is a risk is a risk.

I sent an e-mail to my Peace Corps HIV Educator very shortly after my diagnosis, and although my writing may not quite have been so elegant at that time, I wanted to share a bit of it with you...

"I think it is very important to talk about and stress the message that low risk is different than no risk. Because I can definitely say that this message did not and does not come out clearly enough. I feel like in our trainings, and other HIV sessions and information I've gotten in my life, oral sex and "mutual masturbation" have always been encouraged as safer alternatives to vaginal sexual intercourse. But, the reality is that they are still not totally safe. I don't think we always hear that clearly. We think, vaginal sex= HIV, but oral sex is okay. And furthermore, I feel like we are given this message over and over that oral sex is okay, as long as you don't have any open sores or cuts in your mouth. And, we even hear, or think we hear, the message that if you use condoms, you will be safe and okay. But, the reality is that I had oral sex, and I didn't have any open sores or cuts in my mouth. I used condoms, and they didn't break or come off. I thought I was being safe. But, the reality is that there were still risks involved, even if they were of the smallest percentages. Someone has to make up those small percentages... and I guess that someone is me.

My advice? Nothing and no one is totally safe. There is no 100%. Best thing you can do? You and your partner get tested, and then get tested again 3 months later. Use condoms for sex, and put it on as soon as bodies are naked and fluids of any sort are available. Even though its hard to imagine, consider using condoms for oral sex. And even after you consider all these things, make sure you know and realize and are comfortable with the fact that even though you are taking the right precautions and being as safe as you can, you are always still taking a risk."

Do I blame Peace Corps training for what happened to me? NO. But, it definitely did contribute to my understanding of HIV transmission, my thought process about what risks I was taking, and ultimately played a role in the choices I made. I know now that sex (of any kind) is a risk... always. This is what I hope others can learn from my experience. I hope this helps... please follow up with any additional questions you may have.

Why Medical Separation?

Some people have wondered and asked why I was Medically Separated from the Peace Corps, especially since the current Peace Corps HIV Policy is not to automatically separate volunteers who contract HIV. Although I cannot speak to anyone else’s situation, this is a little bit more about how mine came about…

When I first tested Positive in South Africa, it seemed to be assumed by everyone, including me and the Peace Corps doctors that I would be sent home and Medically Separated. I am not exactly sure why I assumed this, because I had read about Peace Corp’s changing HIV policy before beginning service. But, maybe I was just still in a little bit of the initial shock from it all. And, it was not explicitly talked about or stated that I would be Medically Separated, it was more just like “Okay, you have HIV. We’re going to send you home now.” I didn’t even question it at first. I just went along with it and started making the plans. I talked to my APCD in Zambia, and I wrote Goodbye letters to my village and to my fellow PCVs (which I will share some of at a later time).

It wasn’t until I arrived in D.C. that I started to wake up a bit from it all, and I first said, “Hey. Wait a minute. Who says I have to be Medically Separated?” I did my research and re-read the stories about Jeremiah and Elizabeth from a couple of years ago. And then I started asking questions… to my IHC (International Health Coordinator) and my doctors. I really wanted to know if I could return to country and continue my service, and for the first week I kept up pretty high hopes that I could. I pushed my IHC to bring my questions to the PC Medical Board that meets each week to discuss each Medevac case. She came back from that meeting saying that the Board’s response was an overwhelming “Not Right Now”.

Those three words “Not Right Now” crushed me at first. I felt angry. And sad. And lost. But, as my time in D.C. went on, my feelings started to change. With the help of my counselor, and my doctors, and just the way I was physically feeling, I started to realize that the Board was right- I would not be able to return right now. I came to understand that my health was most important, and that I really needed to recover from this initial illness. I realized that my body did not have the strength, energy, or immunity to return to Africa right away. Thus, I finally came to accept that my Peace Corps journey was over, at least for now. I worked through the grieving process about this as much as I did about the HIV.

Before leaving D.C., I again pushed PC to talk to me more about what my “reinstatement” options would be, and how that process worked. (I don’t think they would have really discussed it with me much, unless I had pushed the way I did). I was told that I would have the option to apply for reinstatement within 1 year of my Medical Separation date. Furthermore, they told me that PC has some HIV lab requirements that I would need to meet (which to my knowledge, are not openly published to the public anywhere). They said that the typical requirements for HIV+ persons applying to become volunteers are that they are on a stable treatment regimen, with an undetectable viral load, and a CD4 of 500, for at least one year. I pushed (again) and asked how that would even be possible for me to meet those requirements within one year. They said that they would look at my case individually, and things would be a bit more flexible for me because I would be applying for “reinstatement” rather than as a “new applicant”. They said that they would still want me to be on a stable treatment regimen, with an undetectable viral load and a CD4 of 500, but may be flexible about what they considered to be a stable length of time.

So, this is how I came to accept my Medical Separation, and sit back and wait to see what the future brings. Although, with each set of lab results that come back not being at PC’s acceptable level, I feel my reinstatement option slipping further away…

History of HIV in Peace Corps

Peace Corps initiated HIV screening in 1987. Volunteers have been screened both prior to, and at the end of, service since 1989. Since 1989, 38 Volunteers have tested positive for HIV during service. The Health of the Volunteer 2008 Report

Prior to 2008, it seems that volunteers testing HIV positive were automatically medically separated from the Peace Corps.

In 2008, HIV positive volunteer Jeremiah Johnson (Ukraine) joined with ACLU to legally challenge the Peace Corps HIV Policy.
Poz.com- Jeremiah Johnson's Story
ACLU- Jeremiah Johnson Case
Edge- ACLU Challenge to Peace Corps

Another HIV positive volunteer, Rebeccah (Burkina Faso), came forward with her story and supported Jeremiah and the ACLU's challenge to Peace Corps.

Under pressure from ACLU, Peace Corps seems to clarify their HIV Policy in mid 2008. Peace Corps states that their policy is to review each volunteer's case on an individual basis.
Peace Corps Response to ACLU

Later in 2008, Elizabeth (Zambia & Lesotho) seems to be the first HIV positive volunteer to avoid medical separation and return to complete her service with the Peace Corps.

Due to confidentiality reasons, it is difficult to discern whether other HIV positive volunteers have since returned to service, although I found this one article that mentions one additional HIV positive volunteer, Craig, returning to and completing his service.
Volunteer Positive- Craig

In September 2011, I tested positive for HIV and was medically evacuated back to the United States. I was medically separated from the Peace Corps in October 2011, after the maximum allowable 45 days of Medevac Status. Peace Corps has given me the option to apply for reinstatement within one year, if I can prove to be in stable medical condition for a certain period of time and achieve certain lab requirements.

Me & Him

Some people have been asking me, “So, what ever ended up happening to him?”

Well, once I returned to the United States, we kept in touch through Facebook and an occasional text message. For a few weeks, I continued pushing and encouraging and practically begging him to go get tested. He continued to say that he was “too afraid”, and he continued to ask how I was doing and claim that he missed me. Finally, one day I received a Facebook message saying, “I write to tell you that I did the test, and am doing further tests to determine the best possible medication, am sad to say you were right.”

After that, he got pretty quiet, and just a few days later announced that he was now “in a relationship” with another girl. I questioned whether he had told her about his HIV status, and he got very defensive and avoided the question, which leads me to believe that the answer is “No”. This upset me very much- not that he was with someone else- but that he was with someone else and possibly not telling her about the HIV! I stressed about it for a day or two, but finally decided that there was nothing I could do. It was not my place to go and tell her. And after doing some research, I found that it wouldn’t matter if I were to go to any kind of authorities, as there are no HIV Criminalization Laws in Zambia (in other words: you are not required by law to disclose your status to sexual partners). I finally realized that I needed to remove myself from the situation. I needed to let him go. I needed to move on.

From that time, I didn’t talk with him for more than a month. Then one day, after I felt cooled down from it all, I casually commented on something on his Facebook status. He responded cheerfully and asked how I was doing. When I went to write back, it wouldn’t let me. He had blocked me. I’ve never found out why. And we’ve never talked since…

Life As A Medevac- Part 3

A few thank you’s are needed…

As I mentioned in the last post, I did actually end up receiving a roommate a few days after arriving. And she ended up being one of the best things that happened to me there in D.C. She was another volunteer, but a stranger nonetheless… from another country… with a whole different set of experiences and issues than me. But we became instant friends. We spent our time lazing around the hotel, going to our respective appointments, and occasionally visiting some of the sights of D.C. We talked and shared our stories and experiences. We vented and shared our frustrations about Peace Corps and what was or wasn’t being done. And, after a week or two, she became the first person outside of my immediate family that I disclosed my status to. I had been thinking about it days ahead of time and deliberating about whether or not I should tell her. Then one night, as we were sitting there talking, I just knew it was the right time. I shared my story with her… the whole story. And her reaction was better than anything I could have expected. She just said “I want to give you a hug.” We hugged, and we talked some more, and from that time on she was my partner through it all… the long appointments, the weird side affects, the tears, the laughter, and anything else I threw at her. Thank you dear roomie, you kept me alive and sane during a time that I could have easily slipped away.

During that first week in D.C., I was also set up with a psychologist in the Peace Corps office. I met with her about 3 times a week, for about an hour each time (although my roommate would tell you that it always lasted at least an hour and a half). My counselor was amazing and a huge support the whole time. She went above and beyond what her job required…accompanying me to doctor appointments, calling local organizations, learning more about HIV, and staying overtime just to keep talking with me. She helped me sort through my emotions…guilt, anger, frustrations, sadness, adjustment anxieties, etc. She became more than a counselor during that time, she became a true friend. Thank you my counselor for your time, openness, support, and honest desire to spend time with me.

The third person that I owe a huge thank you to in D.C. is my International Health Coordinator (IHC). Each Medevac is assigned an IHC when they arrive. This person helped arrange and manage anything relating to my case, including appointments, phone calls, paperwork, financial issues, health issues, prescription issues, etc. And although I got frustrated at times when I felt things weren’t getting done (or getting done quickly enough), I realize now how much she did for me… and how much she continues to do for me today. She continues to be my Peace Corps contact, even after Medical Separation, and I’ve spent hours upon hours on the phone with her. So, thank you IHC for everything you have done for me. You have made this extremely stressful time so much easier. I don’t think I could have handled it without you.

Finally, I want to thank my family and friends, who although they were not in D.C., I know they struggled at home in their own way during this time, and provided support to me through phone calls, e-mails, and prayers. My mom stood by me since day 1… since that first day I called from South Africa and said, “Mom, I ruined my life. I have HIV.” She’s always been my best friend, and this didn’t change things one bit. She just switched from obsessively reading Peace Corps blogs to reading HIV blogs instead! (It was also her who I called last week and said, “Mom, would you kill me if I went public with all this?”, and she said, “Of course not. I think that’s an absolutely wonderful idea. Go for it!”) Then, there is my grandmother who was kind enough to offer her place to me to live for awhile until I get back on my feet. And my sister and brother-in-law who have shocked me with their overall acceptance and love from the beginning. And my neighbor in Florida who not only provided support to me, but also the much needed support and friendship to my mother during this time. And my ex-boyfriend, who is still my best friend, and has been there through the middle of the night crying phone calls since I first called and told him from D.C. And a fellow Zambia RPCV who came home shortly before me, who has been a non-stop friend, providing such open ears and understanding, and is always just a short text message away. Thank you, all of you, for sticking by me and being patient and loving and understanding through all of my ups and downs and selfishness and grieving. Now, I think we can hopefully finally start to move forward.