Thursday, April 15, 2010

And that's the way it is... part deux

I've been "online" for almost 18 years now and on some days I am still wondering if this social experiment has been worth all the ooplah. While on one hand it has been rewarding to be able to actually have contact with all my wonderful family and friends all over the world (literally) and especially in Italy, unfortunately I've been exposed to and being target to things far less than pleasant.

After my son Alex died, for instance, I was one of the very first people to have a webpage in memory of a baby lost. The Wall Street Journal took notice (yes, the Wall Street Journal CALLED ME! Imagine that!) and did a two page spread in their paper about little old me and my little website. I couldn't believe it. I got wonderful letters from all over the world from other grieving mothers because of that. I made lasting relationships with a lot of wonderful people. But the reason why I had to remove all but one of his photos from the website is because the exposure wasn't all good. Years later, suddenly I was getting letters that a grieving mother should never in a million years read. Letters so gross, vulgar, that made me change my link over and over again so they could not find me. Apparently a group of sick individuals thought it was fun to target grieving moms. One particular individual stood out because he kept using one photo of Alex, pairing it up with Aliens, Skeletons and horror movies paraphenelia. Months later I get a call from Scotland Yard... yes, THE Scotland Yard. They had a suspect in custody for murdering a Nurse and when they seized his computer they found all these vile emails about Alex he wrote me and asked me if I would cooperate to make sure he went behind bars forever. You betcha! I provided a statement, copies of the photos, emails etcetera and months later he was sentenced to life in prison with no parole. All this proving how good AND bad exposure can be.

As many of you know, I am the President of a non-profit organization (EBAN) that helps EB families. While lately life has been a bit too hectic for my partner and I to do more fundraising (hence actively helping more people), I've always felt as if helping others was the right thing to do. That's why I put thousands of hours in the website, which I established long ago, which has all kinds of information, links and more for new parents or anyone wanting to learn more about EB. Once again, the exposure was good in many ways, but also not so good in others. The good was mostly being able to have ongoing conversations with other EB parents who taught me a LOT about caring for Nicky, and the highlight was having my sweet friend Susan, who appeared on the Rosie O'Donnell show, post my link on her show! I was thrilled beyond words. I will not mention the 'bad' part in this instance. But, let's just say, I now feel quite a bit for Celebrities on the cover of magazines with nasty headlines which aren't even true. I've lost count of the nasty crap (yeah...some things were true-I never claimed to be perfect, but the lies or the exaggerations have been staggering) I've been subject to and because of it I've developed quite a thick skin. I no longer lose sleep over it. I laugh it off. Shake my head. Whatever.

It would be one thing if people that truly know me would have something bad or untrue to say about me, but that's never the case. Ever. The nastiness only comes from those that know very little about me. I do not claim to be perfect, and I never will, but if you are going to write me an email full of insults know that it does not bother me in the least.  It can't. Your insults come from either your ignorance or your character, in other words, they reflect YOU as a human being. I may reply back that you're pathetic, but that's about the worse you'll get from me, at least in recent years.

Remember this: "How you treat me is your karma, how I react is mine". -- Unknown