Wayne Dyer once said: “How people treat you is their karma; how you react is yours.”
I wrote in the book Butterfly Child about me being the proverbial “punching bag” for the EB community when I used to run the various EB groups over a decade ago. In the book I go in detail about certain individuals, who shall remain nameless, who felt it was perfectly okay to harass me over and over again. One would write me a nasty note at least once a week full of insults, another went to the extreme of starting a group with the sole intent of bad-mouthing yours truly. That was just the tip of the iceberg. Read the book to learn the extent these individuals went to to stop my EB awareness efforts and learn about the lies they told everyone. Because if there is nothing “real” to report, you have to invent things to make me look bad and make themselves look good, right? Their effort to make me look bad for a while worked. I got tons of nasty emails from a lot of people. Nice, huh? They were bullies, plain and simple bullies.
Some people make it a habit to be insensitive, they delight in speaking their mind regardless of how much they hurt others. This was them. This is how they operated. I would like to say it didn’t hurt. But it did. A lot. I could not sleep at night at times due to the cruelty dished out at me. All I was trying to do was raise EB awareness, but they criticized everything I did. They criticized the “rules” of the group, the color of the ribbon for my EB info World website, anything and everything was scrutinized to the minutia. Any comment dissected. It was horrible.
A friend of mine, however, upon the release of her book “Unconditional~Uncensored“, wrote this in the acknowledgments:
To
Silvia-you are my Warrior Partner, My best friend, my Italian sister and the best EB mom I know. You have given your heart and soul to help others and sometimes at a price. Thank you for staying in and never giving up. Thank you for doing all that you do to help EB. The internet would never have been what it is today for EB without you, my friend. I love you.
It’s because of her kindness that I started to heal and started the process of distancing myself from the negative and starting to put more importance on the positive, the people I did help, the spread of information about EB, the awareness, and put more weight on the positive rather than the negative.
I wrote about the healing in the book… Here’s the excerpt:
From all this I learned that people are going to treat you badly and will walk all over you for their own reasons and there is nothing you can do about it. Live, learn, avoid them like the plague and move on. I had to learn not to let the critics determine how I felt about myself, or let my self-esteem be contingent on that. I had to decide that everyone didn’t have to like me, understand me, agree with me or want me to succeed in order for me to be okay.
I also learned long ago that just because someone might have EB or a child with EB, or might have lost a child, that does not mean we can be friends. Heck, we might not even be acquaintances. I have to pick my battles, and learning how to ignore and bite my tongue was something I was striving for. After all, my life as it was, just dealing with EB, was hard enough without having to deal with others and their attitudes. I was doing everything for my son, everything. He needed a calm “me”. I was doing every bandage change, I was always worrying where the bandages were coming from, I always had the burden to get the insurance to approve throat dilatations, hand surgeries & dentist appointments. I was fretting about school. I was cleaning after him, made sure he took his medicine, went #2, cleaned his teeth, changed his bed sheets daily, dressed him and made sure his clothes were soft enough. I kept him alive and sacrificed everything in my life to make sure he lived to see a cure; do you think I had time to deal with other’s BS? No thanks. I didn’t deserve that.
One would think that the harassment would end once I left the groups, but it’s always been there, lingering. All they need is a mild excuse to yell at me. It could be about them thinking I put Nicky on TV without his consent. Imagine that! It could be about a meme I made for the EB Info World Facebook page that offended them (while many, many others found funny and shared, I guess I cannot please everyone), or it could be about how I overwrap Nicky, or… you name it! Just yesterday, as a matter of fact, a couple of individuals went to town on me. I was told that apparently everything I do, every single day, it’s not for Nicky at all, nor for EB Awareness, but for “me”. They also said that my books do not help EB awareness, nor they help Nicky, they help nothing and nobody but “me”. Another thing they said is that I “use” Nicky for my “purposes” (not sure what those are-they didn’t say) and they think they know what Nicky thinks and wants better than me. These are people that have never met Nicky. These are people that went from being acquaintances to blocked. Does anyone really think I need this BS?
I am not sure how making my day a living hell is going to make theirs any better. The world is already a sucky place, why do they feel the need to make it worse? I will never understand.
The good thing, at least in my view, is that I have realized over the years that when people talk bad about me, or lash out, they are speaking from a reality that isn’t mine. It’s about them, not about me. People in general will always have negative things to say or be jealous about a person who is trying to do “something”. I also know that people that are in a bad spot are looking to put down others to lift themselves up, so why not use me as a punching bag? Afterall, I am visible, I am “out there”, who better than me to try to squish the self-worth of?
But my self-worth is not tied into their negativity or their opinion. It’s tied to the love of my family. Period. I am no longer going to lose sleep over a nasty word someone I never met is going to dish out. Never again.
I imagine their negativity has one purpose, to try to make me stop doing what I am doing. If anything, their approach has the opposite effect. It makes me want to do this even more. More books are coming, more awareness every chance I get, more blogs, more memes, more everything.
I want a cure for my son, and I will never stop. Never.
