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.
Thursday, April 12, 2012
I read a book a week or two ago, and it was amazing. I came across it somewhat randomly while either searching "HIV" or "Zambia" in the Library catalog. Well, this book popped up, and happens to be about both HIV and Zambia!
The book is titled, "Warrior Princess: Fighting for Life with Courage and Hope" and is written by Princess Kasune Zulu and Belinda Collins. The book tells Princess Zulu's story about losing both her parents and a sister to AIDS, before it was even known in Zambia what the mystery disease was. At the age of 21, Princess then learns that she herself (along with her husband) are also HIV- positive.
Instead of taking her diagnosis as a death sentence, Princess turns all of her passion and energy towards spreading awareness and education about the virus throughout Zambia. She goes on to be one of the first and only women in Southern Africa to publicly announce and share her status with others.
As her efforts continue, Princess becomes pretty famous for speaking her story, not only in Zambia, but also in Australia, Canada, and the United States. She becomes a worldwide activist, and plays a big role in influencing the development and passing of PEPFAR (President's Emergency Plan For AIDS Relief). Princess is only 10 years older than I am.
As I read her story, I found Princess to be expressing many thoughts and feelings as I myself have had about my diagnosis. Other things she wrote simply just seemed to be profound wisdom. As I read, I started marking pages with sticky notes, so that I could go back and pull out some of the meaningful quotes. I will present those here to you today.
"And as all who have loved and lost know, through the pain comes the knowledge that one trial has ended but the real burden, the burden of living with the loss, is just the beginning. For me, this was the beginning of the sugar daddy syndrome." page 56
"People couldn't believe it when, lying there stricken with malaria and HIV and now living on borrowed time, I said my dreams were coming true. But somehow HIV had become a blessing in disguise that was indeed making my dreams a reality. The virus showed me it is possible to turn any situation around, that depending on how you choose to respond to life's challenges, your curse can become your blessing. I was determined that I would not break down but break through." page 159
" Listening to people's stories and sharing my own made me grow in strength and spirit. I refused to become a victim. Indeed, I kept hold of the sayings that reinforced my health: 'Anything that does not destroy you only makes you stronger.' 'I shall not break down, but I shall break though,' I said to myself, almost on a daily basis. I also began to deliver these messages of hope to my audience. HIV may have taken away my parents and my sister, but the virus had come into my life as a calling. I only grew in my resolve to make a difference and leave a legacy behind, living one day at a time as positively as I could. Continually I remind myself that HIV is only a visitor in my body." page 162
"I continued explaining that the red ribbon was not tied in a knot but instead folded in a loop, with one side crossing the other. This symbolizes hope, a journey, progression, the fact that AIDS cannot stop us, that we will keep fighting and we will stop it." page 165
"At CHEP we worked under a principle called GIPA, or Greater Involvement of People Living with HIV and AIDS, which states, 'People living with HIV understand each other's situation better than anyone and are often best placed to counsel one another and to represent their needs in decision- and policy-making forums'." page 168
"My most powerful weapons continued to be looking healthy and being willing to disclose my positive HIV status and putting a name and a face to this disease. I really captured the students' attention as, once again, I met with the belief that only people who were wasting away and dying were infected." page 175
"The work was plentiful and rewarding. One of my favorite tasks was speaking to groups of people who were already infected. they were clearly ill, and mainly clients of a home-based care program run by the Catholic Church. I'd start by saying, 'I am one of you'. But I had to be careful not to appear to patronize, as I had a good job and a nice home and, until recently, a husband who had supported me financially. Few of this group had formal education and even fewer had ever worked in paid employment. It was obvious that people there had lived tough lives." page 177
"Another of my proud achievements during this time was educating my fellow staff. It can be easy for an organization working with HIV to assume their staff are being cared for and educated or that they themselves don't possess discriminatory attitudes." page 178
"I tried to make HIV a lighter subject, too, to talk and laugh about it. When I walked into a room I'd say, 'Are you talking about me because I'm HIV positive?' 'Princess, you can't say that!' my workmates would respond, but I wanted to give them the freedom to laugh, to face this disease head-on. Similarly, if I made a mistake or if I was in a bad mood, I joked, 'It's the virus that's causing it!" Initially, people were embarrassed; 'Princess, you are too much,' they would tell me. But eventually, 'It's the virus' became adopted as a mantra for the entire office. After a while, people became comfortable enough to be tested themselves, and those who were HIV-positive felt safe admitting their status, or at least confiding in me. As they embraced me and we became comfortable laughing with each other, AIDS went from something hidden and secret to a topic that was discussed freely and openly." page 178
"He explained that as a member of the clergy and a born-again Christian family, many people had interpreted his HIV infection as a sign of his previous or current sexual immorality before or within marriage. But the Reverend Canon explained that 'not all sexual saints are HIV-negative... not all sexual sinners are HIV-positive.' The Reverend continued, 'In HIV it is not a matter of whether the sex was sinful, unlawful, unfaithful or whether it was lawful, faithful, and acceptable in a particular faith context. Rather it is a matter of whether it was safe from the risk of exposure to HIV or unsafe.' He spoke philosophically using an analogy of safe and unsafe water: 'Getting typhoid from drinking contaminated water does not necessarily mean the patient stole the water!'" page 190
"'These people with HIV in Africa are people just like me,' I reminded them. 'We are not statistics. We are sons, we are daughters, we are mothers, we are fathers, we are teachers, we are doctors, and yet on a daily basis this disease is killing us.'" page 191
"I want you to look at me and remember me and those who are just like me every time you think of HIV and AIDS. We are real people with dreams and goals. HIV is not just about statistics." page 191
"That image sent many feelings through me. President Bush kissing me showed people you can't catch AIDS from a hug or a kiss. I believe that photograph fostered compassion, breaking down the stigma that exists around this cruel, indiscriminate virus and encouraged other world leaders to act." page 219
"The virus, and more importantly the way God has encouraged me to respond to it, has presented me with opportunities beyond my wildest dreams. As long as people hear my story and respond, I am excited to keep going. It's like throwing a tiny pebble into a vast lake and watching the ripples flow all around the world. When someone hears my story, goes on to change the world and influences others to do the same-- that is what it's all about." page 235
"When I reflect on my life, it's clear that HIV has been far from the end of it all. In many ways, living with the world's most infamous incurable disease is a blessing. In fact, it has been the beginning of a whole new life, for I have chosen to live positively in the midst of suffering, continually reminding myself that the virus lives in me but I do not live in the virus. It does not own me or my soul. It is only a visiting stranger in my body. My willingness to disclose my HIV status and encourage others to respond has brought about many of my lifelong dreams." page 249
"Once you are inspired, make sure you share this message with your family, friends, colleagues, prayer partners, fellow students-- everyone with an ear to hear. Become a voice for change, an ambassador of hope. We are all in this together, and it will take effort from us all. We are all part of the solution." page 263