August 19, 2013
Every day we can find a million cliché quotes strung up on walls, on billboards, posters, framed, attached to pictures warning us to heed the words of the wise women and men that came before us telling us of life's precious moments. Warning us to never take for granted the things we have because it is in an instant that a person's life can change forever. Most of us pass these quotes by not even acknowledging them, some stop and read them and remark on their wisdom and beauty, while some stop read them but not only do they remark on the beauty and wisdom; they allow it to change them going forward in life with a new perspective. Too many of us take the little things for granted, some by choice and some who just lose themselves in the monotony of the everyday. We are reminded, when we actually sit and think about the past, of the regrets, the euphoric, dramatic, crushing, painful, instantaneous life-changing, mind-blowing moments; and with hindsight we realize what can happen in just an instant. We realize that maybe, just maybe, those quotes aren't so cliché.
I can think back over my life and look at the momentary events that altered the course of it in irrevocable ways: the phone call telling me my sister was killed, being raped, waking up in a hospital with half of the hair on my head shaved off sitting in a wheelchair, the abuses and traumas of so many of the relationships in my life, and the list could go on. But in the seconds that it took a complete stranger to tell me that I was HIV positive, which I remember as clearly as if it happened moments ago, in comparison to these other things, this would be the moment that shaped me, that altered my life. It was this diagnosis and even the poor and illegal way in which I was informed of it that would be the single biggest and many years later the best thing to ever happen in any instant.
When I first found out that I was positive, at three months pregnant, I thought "I am going to die; I am going to infect my unborn child and I am going to die." For many years I carried that around with me. The doctors told me you will live a long life but I just kept thinking these bastards don't know that. When they told me that I could have natural childbirth I just kept thinking yeah right, I must have asked them about a hundred times before I finally caved and thought I can, and I did. I gave birth to the most beautiful little boy, Frederick. He is now 6 years old; he is a happy, healthy, smart and kind little boy and he is HIV negative, just as the doctors said he would be.
Once I got him here though I quickly fell into a depression. In a matter of months I learned I was positive and that I would be a single parent. I had no idea how to even care for a baby let alone not be selfish, and then I had the constant attacks from the friends I thought I had, for being positive -- starting with telling me that I should have an abortion when I was pregnant because it was extremely selfish of me to have a child when there was a chance I could pass the virus to it. After he was born it became don't talk about the fact that I have HIV; I mean, they could gossip about me, but I could not talk about it or how it affected me. At that point I started to drink myself to sleep almost nightly. The routine went: put my son to sleep, sit by myself, virtually locked up in my own prison I had concocted in my home, and drink until I had a buzz and could fall asleep. Looking back at this time I know I did not ever put my son at risk of anything, but it was such an unhealthy way of dealing with the depression and diagnosis.
When my son was about a year old I remember making a decision that this was not what kind of mom I wanted to be; I mean I knew that he didn't know I was drinking and it didn't affect my capabilities to be a parent to him, but I knew that in a couple years he would grow up and I would create the model of what is a norm for him by him seeing this behavior. So I chose to stop. Throughout my little depression time I had held on to one thing that kept me happy and gave me more joy than any other thing had ever given to me and that was being his mom and looking at the miracle that he is. I wanted to change my life, I wanted to be someone that he could look to as a role model and I wanted to do something about being positive that would help others. When I was diagnosed I was very naïve about HIV, with only very stereotypical or discriminatory views of it; but I knew from my first doctor's appointment, where I stated for the first time that I HAD to do all I could to change this negative world view of HIV and make a positive impact in as many ways as I could.
The first time that I ever spoke was to a youth group at the church I was attending at that time. I remember crying through the entire talk I gave. I was more scared of being that honest and real, laying myself completely out there virtually naked for them to judge, than any other thing I had done at that point in my life. Little did I even know it was just a taste of what was to come.
In October of 2010 I attended my first HIV/AIDS conference in Des Moines, Iowa and it lit a fire in me that I didn't even know I had. I reached out to the networks I knew of at that time, telling them my story and asking to please let me do something so that I could maybe use my story to help others that were positive and hopefully help prevent people from becoming positive.
On World AIDS Day 2010 the MTV Staying Alive campaign had asked me to write some blogs and they released them on their website. This would be the starting point of a whirlwind journey into the world of HIV, I began going to conferences, speaking to the Senate, advocating nationally and locally. I was hired as a speaker for the program Does HIV Look Like Me through Hope's Voice, I became an ambassador of Hope for Dab the AIDS Bear, I joined the board of directors for ADAP Advocacy Association, I was put on billboards locally, a television commercial, I started my YouTube channel HIVchick, and it was as if I had left Planet Earth and became this activism and advocacy machine.
Through this journey I was thankful every step of the way, sincerely, but I was also overwhelmed. You see, I am just a pretty simple girl from Nebraska, lived in a small town, attended a country school at one point, and lived in the country. I had had my share of experience in life, moving to New York City at the age of 19 for a couple of years; I had traveled and obviously experienced my fair share of life and traumas; but at the end of the day I was and I am very simply a mom and a girl who would rather enjoy the simplicity of life than complicate it with some of the extra stuff we sometimes think we need. And so, having gone on the journey that started with that first conference and those blogs, I was left with my head spinning a bit. At home I was simply Janine but I would travel and I was "Oh you're Janine" ... It was surreal and I had no idea how to handle it.
Fast forward three years and I have come to understand that it isn't about me or the uncertainty when experiencing new or overwhelming things; it isn't about the specifics. It is about the journey and I have had the privilege of enjoying quite the ride so far. I have been able to march in DC in support of things I believe will help change the face of HIV and AIDS; I have met and call a friend the first man in the world cured of HIV, Timothy Ray Brown; I have met young men and women who have honored me with their stories; I have been entrusted with hearing stories of what it is like for the long-term survivors who were quarantined; I have seen some of the most amazing long-term survivors and been honored with watching them accept awards for their work; I have had people seek my advice and champion me with being a force or a part of what has helped them cope with their diagnosis; I initiated and got the first Nebraska HIV/AIDS events with an outside entity, the Condom Nation campaign, to come to this state; I have done things that are quite unbelievable for a small town, Nebraska girl, too many to list really. The thing is though, the most miraculous and amazing gift of the journey has been that I get to help people by offering them an honest and real look into my life, the good, the bad, the ugly. I get to raise a child that will be aware and who will affect a change in his peers as he grows into a man because of the wisdom so many have given me that I can pass down to him; I even got to take him along to an ADAP Advocacy Association conference summer 2012 where he joined me as my date for our annual award dinner.
Now looking back on the morning of October 5, 2006, when I received the call that told me I was HIV positive and minutes later when I stood in my kitchen with a knife to my wrist wishing I had the courage to end it all but too afraid because I knew it would kill my unborn child, had I known the gift that I was being given, the life-shattering and world-changing journey to come, I would have not wasted a moment being selfish because giving back, being myself, and being honest is the most amazing thing I have ever experienced.
If you read this and think she is brave, or strong, or courageous, while I thank you for that, I want YOU to stop whatever you are doing and look at your day, at your life and remember that you woke up today, that you found the strength, bravery, courage to get up and face another day and then look at yourself in the mirror and say I am amazing, I am strong, I have purpose and I love you ... It can always be worse, it can always be better. I am where I should be and I am ready for my journey!