As an HIV advocate, I, and others, sometimes have to try to make living with HIV look easy and doable. For me, most of the positive self-talk and resulting positive public image that it helps me put on the face of being a person living with HIV is good for my spirit and health, and hopefully useful for those who might need to know that wellness is possible in spite of our seemingly dire dilemma. In fact, for those of us who have come to understand that in this system of capitalism, our life stories are one of our most valuable commodities. Our ability to position ourselves to market our stories, and any other creditable, useful information that our experience has garnered, can directly influence our ability to capitalize monetarily on that valuable information. Like my good friend Luther Brock says, “In the land of the blind, the one eyed man is king!”
This may sound a bit cold and calculating in light of the nature of the seriousness that HIV and AIDS represent, but that seriousness is what makes the experience and the story even more valuable. In this society where “reality” shows and real life dramas dominate, and where fear is the predominate energy behind many unique selling propositions (see gun sales), a good redemption story that can touch the hearts of many. A touching life story of the young girl unknowingly infected by the dastardly bastard who didn’t tell her he had the virus, or the “Lazarus-like” resurrection of the AIDS patient who cheated death after beginning treatment are drama filled stories, both stoking the fears of personal consequence and igniting the hopes of those afflicted. Real life stories like these can definitely be effectively sold (see books below). The fact is, if you are in this life situation, or any other for that matter, where you health and quality of life depend on how much money you have, you better get creative about how you are going to survive in this system of capitalism because your life depends on it!
In capitalistic systems like the one we live in, even though we have “lifesaving” medicines, if you can’t pay for them, or can’t pay the co-pay, you may not get them. Life enhancing therapies cost money. Serving our people by going to conferences and other speaking engagements cost money, and many times we are asked to do these events on our own dime, or for less than what is paid to others in similar, yet less dire situations. Sometimes the money is there to pay us well, but somehow the value of our stories ends up being diminished by the need to feed “Capitalism” and the machine that makes it run.
Sure, you may be blessed to have fallen (more likely crawled) into the social safety net of social security, but for the most part that simply takes care of your basic needs. If you want to really live well, you are going to have to make a few more dollars than that, and if you are living with a scary disease like HIV, you may not be able to work, so you need to know that the truth about your life experiences has redeeming value. You just have to figure out how to market it AND get paid fairly, because in “Capitalism” most people are trying to get rich by employing cheap labor. The dirty little secret is that like everything else, the HIV industry is big business too. It may, for many, be a business born from altruism, but it IS big business nonetheless. If you doubt that, ask yourself how your livelihood and cash flow would be affected if there was a cure found today?
So, let’s all be honest about what is really the common denominator of our motivations in a capitalistic society such as the one in which we live. It may seem like a cold calculation at first, but when you divide it with the warmth of empathy, love, and concern for our fellow man, well...you still get a great book or movie (cue the music) that could help someone through or around an experience like mine. Living with HIV is NOT easy. Life is not easy. If something I can share can help you or anyone, my life has gained great intrinsic value as a result. Unfortunately, cash rules everything around me (C.R.E.A.M) so I’m gonna have to do like everybody else and figure out how to get paid in the process, so I can keep doing the other stuff I like to do. If you have a story about living with, around or in fear of HIV, you might want to do likewise. Together, the 99% of us with the stories might someday get or create what we are truly worth.
Please support authors who are sharing their lives living with HIV with you.
“Surrender To Heal” - 7 Ways to Rise Above the Battlefield of Life - by Reggie Smith
“From The Crack House to the White House” - by Denise Stokes
“I’m Still Here” - by Venus Perez
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