I was born in 1967 with a rare bleeding disorder called, hemophilia. All through elementary school I was bullied because of my weakness and difference. Also in junior high, where the bullying became more dangerous. Fortunately, the varsity football team took me under their wing and protected me in high school… For the first time, I was not bullied.
I thought the bullying was over… Then, in the mid eighties I received a bad batch of blood to cure a bleed. This blood product, called Factor VIII, was tainted with HIV and I was the lucky recipient. Little did I know that the bullying was about to go to a whole new level. Besides the whispering of people whom I called friend, the biggest first thing that happened to me was being asked in front of my entire community at our neighborhood swimming pool, “Do you have AIDS?” I lied and ran crying from this situation.
Next, the death threats started coming in via anonymous telephone calls (back then there was no caller ID). Someone also threatened to burn our house down if we did not move out. This was a scary time for everyone and the stigma was in full swing. I quickly realized that a safer bet was to hide my HIV status and act as if there was nothing wrong. Well, this was tough because it was becoming more known that most hemophiliacs had it. So, I also hid my hemophilia.
Within a few, short years, all of my hemophiliac friends were dead. I was literally the last man standing and completely quiet about my affliction. Twenty-three years later, I compiled my life journal into a book and published my memoir, Survivor: One Man’s Battle with HIV, Hemophilia, and Hepatitis C. This was my “coming out” party. I mean, it was impossible to hide my status with a published book out there… I felt relief overcome me as I admitted to the world that I was a long-term survivor and thriver. People came out of the woodwork with questions and stories. I was thrown into the limelight and overnight became an inspiration to thousands of hemophiliacs who had dealt with this situation in their own lives.
There was a down side… The stigma surrounding HIV was lessened, but still in operation. So, I have managed to duck and dodge my way through a few of those situations that brought back horrific memories of the old days. Mostly though, it was all up-side and inspirational things that happened to me.
Out of the blue, an amazing man, Barry Haarde, approached me as another HIV+ hemophiliac who was also coming out about his status. He was quickly becoming a special man in our easy bleeding community. Barry talked to me, and inspired (more like motivated) me to get back into the bleeding disorder community and not only tell my story, but help raise awareness and battle for other hemophiliacs. I did.
What does all of this have to do with poppy plants? You ask… hmmm… Well, I wanted to give you a little back-story of where I’ve been before discussing today’s article.
The Australians have a saying… It’s called tall poppy syndrome. See, if a particular poppy grows taller than the others, it will steal the sun and water from a bunch of other, smaller, poppies. So, they chop the tall one down in a sacrifice to save many others. When this saying translates to people, it has a less positive outlook, and means when some people see you attaining success and growing before their very eyes, they chop you down to keep you down among them. You can see this derogatory version is a little bit disheartening.
Today’s post was inspired because I find myself trying to promote me, hemophilia, HIV, and fitness to raise awareness in this callous world. I am currently leading a competition (by a long shot) to appear on one of the most popular Men’s magazines in the world, Men’s Health
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. You can see my entry (and vote for me) here: www.mhguysearch.com/entry/37 (yes… that was a shameless promotion).
Of course I want to be on the cover! I’m proud of what I’ve accomplished despite my “issues.” However, I’m not so shallow that this is only to get ME on the cover… I’m doing this for you too. I have found a purpose that is more important than just me. Supporting people with hemophilia, Von Willebrand, other bleeding disorders, and HIV+ or other life-threatening diseases. Also, for anyone who struggles with staying fit and healthy! I am the poster child for all of us!!!
The rules of the competition state that people can vote once daily. I did not write these rules, but I understand the importance of them. Therefore, I posts a daily plea to my friends to request their vote.
Can you imagine putting an HIV+ hemophiliac on the cover of a popular health magazine (for the first time ever)?? This is an incredible opportunity to raise a huge amount of awareness in an otherwise unknown community of bleeding disorders.
With this in mind, over the last several days I have received a few messages talking about me spamming the community. Now I must mention that I am receiving thousands of like, votes, and messages saying how inspiring this is. And, hundreds of hemophiliac moms have reached out to me saying how important my message and story is to their children. The good outweighs the bad by the hundreds. However, the bad messages do stand out to me, and hurt my feelings.
You see, I was asked by many, a few years ago, to please stand up and be heard. To help support the community by sharing my story. And, I answered this calling by doing so. Yet I now find myself occasionally battling people who seem to be trying to bring me down. I know these feelings might be my own internal battles, but I can’t help but wonder if some are merely picking on me and my advocacy simply because they are miserable and want to attack people who they see doing good things in this world. I’m certain that not everyone of these spam name callers feel this way, but I’m also aware of a few who literally are negative and sometimes downright mean.
Let’s define Spam… Besides being a canned meat product, spam is also defined as a noun that means: Irrelevant or inappropriate messages sent on the Internet to a large number of recipients.
While I am posting in an environment that has a large number of recipients, I feel that my appeal for awareness is extremely relevant and appropriate. Perhaps I’m nitpicking by defining spam and excluding my posts from it, but I’m making a point. If I’m reaching out to a community to raise awareness and help those who cannot help themselves… How can I possibly be spamming? It is not always easy to raise awareness, be an advocate, and speak out to the world about tough subjects… If it was easy, everyone would do it!
No one is asking for your money (although I might if the event warrants it). I’m not asking you to do some crazy thing… I’m simply asking you to visit a website and make your voice heard, by voting for me. How do you think I got in first place (by more than double)? Do you think I would have this many (or any) votes if I didn’t post anything? Of course not!
I’m an honorable man doing honorable things. I stand by a community that all but disappeared when they all died around me. I feel like a phoenix who has risen again and find a whole new generation of young bleeders and their families flocking to me for advice and inspiration. I will continue to tell my story to the ones who want to hear it. If you don’t appreciate my outlook on life, then simply don’t read my posts!
We recently passed the thirty year mark of discovering AIDS. And, I have been living with it for more than twenty-eight years. It is high-time that we broke this stigma and show that you can be a HIV+ hemophiliac and still be healthy.
I’m not only standing up for hemophiliacs. Nor only HIV+ people. I’m also standing up for average people in general. Statistics show that more than 65% of Americans are overweight. I fear this number is far higher than advertised. I am using myself as an example of someone who is suffering through much more than the average person and still manages to stay extremely fit and healthy. My message is simple: If I can do it, so can you! This applies to everyone!!!
Most of you are VERY supportive of me and my platform. Because of you wonderful people, I will not stop my efforts. This is despite (and sometimes to spite) the naysayers who try and beat me down. To quote Chumbawamba, “I get knocked down, but I get up again.”
You all lift me up and make me feel like a loved person. You also inspire and motivate me to continue my work and voice… Thank you!
Have you ever run in to “Tall Poppy Syndrome,” or know someone who has? Have any advice or thoughts on the matter?
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