I have learned a cruel, hard and very real fact when it comes to diseases, public awareness & the monies funneled towards research - If you are going to fall ill to anything, make sure there is already a celebrity either battling that illness or waving its banner. What? Is she joking? No, I wish I were at least maybe half joking. In this day and age of viral media, Facebook and internet cafes celebrities have more face time, and subsequent power, than ever before. Celebrities urge you to vote, to just say no, Just do it, shop at Target and save the environment. At every checkout stand in America there is a double decker row of magazines just waiting to tell us who has cellulite, who was cheating on who, who looks good sans make-up and who forgot to put panties on before exiting their limo. You can't get away from the celebrity - and they have capitalized on the "do-good" side of their fame. And while there are A, B, C and even D list celebrities galore lining up to sign on to "do-gooder" projects, I must admit that while I long to have a brighter light shown on my disease, a greater focus on research and to not have my jaw drop when I happen across someone that actually knows what it is that RSD stands for, I am not about to take the "sloppy seconds" of Hollywood.
While the average person most likely doesn't give it a second thought, I have spent a few odd moments (or maybe more than that) thinking about the diseases that have been brought to the attention of the nation because of someones celebrity. Michael J. Fox brought Parkinson's to the masses. Farrah Fawcett fought for funding and to remove the stigma attached to the words anal and cancer. Lance Armstrong has created an entire brand, bracelet and lifestyle surrounding his testicular cancer (along with fellow testicular cancer survivor Scott Hamilton). The list goes on and on - celebrities and their health causes. And while I find it admirable that these people have used their fame for good, their misfortune to benefit the masses, to bring science to the intersection of mass media and social media, I feel like the kid at gym class that is left last, the odd number while the two teams argue over who gets stuck with the loser. It's a position I am not use to, nor comfortable with, truth be told. It's undeniable how much good a celebrity could do for my disease. Not only does it (for no real reason!) validate the disease to the masses, it also pulls on the heart strings and brings in the money, the funding and the "we'll fight this!" mentality to the masses. However, with most things in life...you have to be oh so careful what you wish for.
I would hate to name names. I am a believer in karma, incarnation and a "if you don't have anything nice to say, don't say anything at all" kind of gal. While I do try to adhere to those beliefs, it is not always possible for me to hold my silver tongue, nor is it always good to choke down your words. I will simply say that a few years ago, there was a woman, famous for her lyrics and dance moves in the early 90's, since famous for her dippy sayings and air-headed behavior on a popular singing competition. She had more and more bizarre behavior, which even to someone like myself who never watched the show, it became apparent from clips in the media - this woman was on some serious drugs! No, not the shoot 'em kind - more like the Quaalude's & alcohol kind...as though she and Anna Nicole Smith had a lot in common. After months, maybe even a year or more, of speculation as to her drug problems she had a "heart-to-heart" with a media outlet. And that was when I was wished I had been more careful with what I wished for. She announced that she did not have a drug problem, she was taking medications for her RSD. Oh Lord! Please don't represent my people!! While I had a brush with the methadone that does get prescribed to RSD sufferer's, I still didn't -and to this day stand by my belief - that she in no way suffers from RSD. Why? Is it because I'm heartless? No. It is because I have an amazing B.S. radar. And it went off like gang busters for her story. She lamented on and on about the drugs that she "had to take" for her RSD, but she never once tried to educate the public as to what RSD is, how is works, how it affects a person, how it is so misunderstood to this day. Go onto any RSD board, talk to any RSD patient and you will find these questions and concerns at the top of their list. She was more concerned with the Hollywood tradition of "CYA" and nothing to do with a real problem. And for this fact, I no longer feel sorry for her when she gets burned by nearly every comedian, man, woman and child in this country. She grabbed on to an obscure disease, used it (at least among those that know nothing of the disease) to her advantage and then discarded it. It's amazing how she has taken the RSD disease and tried it on and off like last season's dress. I've noticed that, as is common with many a celebrity, she disappeared for a few months, came back a bit more sober, a bit more coherant. And with that less drugged out, strung out personality, the mention of RSD disappeared. Her need to use it disappeared, and so did any chance to use this has-been ex-Laker cheerleader turned sappy 90's pop queen status to better millions of suffers in this nation. For that, I know that another deal was done with the devil. To use a disease as vicious, as detrimental, as all-consuming and life altering as RSD for your benefit and then move on, is something that only someone with no regard for the suffering of humans. I don't envy her next life. As I stated earlier, I am a big believer in karma. This does not bode well. Which is why I am able to move on when people are horrible, are black in their core, have malice in their intentions.
So, the next time you read about the poor starlet with the obscure food allergy, the sports start with the odd growth gene factor and subsequent fundraiser - think of me, think of RSD, think of the power of star power. Just please, please don't think of her. And that's simply my opinion, Straight Up.
