Blog · December 22, 2012

Thinking positive…

Those that know me, know what a quote freak I am. I draw a lot of inspiration from them and they truly help me in many ways. It all started back in 1993-I was on a flight from New York to Milan, Italy to visit my family and the gal sitting next to me was a beautiful 19 year old girl traveling solo to a modeling shoot with a teddy bear and a picture album. We struck up a conversation and she opened her little picture album to show me photos of her family members and one thing struck me. Under every photo she had written a quote. But… not any quote. Each quote pertained to the photo. When I came back from Italy I became obsessed in recreating what she did. Over the photo of my sisters, for example, I wrote ‘Be there when people need you’. Over my wedding photo I wrote ‘Another’s heart is a rare and fragile gift, hold it gently and with both hands’. Over a photo of my niece at the carnival I wrote ‘Live your life as an exclamation, not an explanation’.

There have been many quotes over the years that made me stop and think, but the ones that I feel have helped me the most are those that inspire positivity, strength and love. 576432_10151139699280686_158671510_nJust yesterday one quote came through one of my Facebook inspirational pages I liked that made me stop and think. “Don’t let the behavior of others upset your peacefulness’. I think the reason why this one struck me is because I’ve been trying extremely hard the past few months on this exact pursuit. I don’t know why other’s hateful, judgmental or negative behavior upset me so, but it just does. I get livid when others publicly show lack or respect for the elderly, the poor, the disabled, the victims. When the only side I see in them is ‘hate’, it’s a huge, gigantic turn-off. I’ve been distancing myself from these people. If that means hiding them from my feed on FB or stop contacting them or associating with them in every other way, so be it. As Nicky’s health is slowly deteriorating, I need peace, love, positivity and hopefulness in my path, not the opposite.

Just this week I was the recipient of a full front display of hate and lack of caring that astounded me. Relatives sometimes are the pits. The worse. Never once this relative gave me a pat on the back, some encouragement; she has never told me I was doing a good job or can ever say anything that could possibly relate the thought that she might be proud of me in any way, shape or form. The only thing she ever says to me is ‘everyone has their cross to bear’. Really? Gee, thanks.

Then an EB patient (with a visibly much, much milder form of RDEB that Nicky has-no wounds or bandages anywhere…. really?) told me that she did not think I took care of Nicky good enough. She felt I was not doing my ‘best’ for him. I kid you not. This all because she felt I should take off all his bandages and let his 2-3rd degree burn-like wounds ‘breathe’. Nicky will tell you that anytime his wounds are exposed to air it’s EXTREMELY painful. I told her this…she didn’t care. She further felt that if I just took all the bandages off his legs he could walk. What? Nicky would not dare even ‘move’ his leg without bandages, let alone walk on his wound-filled feet. I told her this, she thought I was making stuff up or overstating things. Riiiight. She kept bragging about all the things that she did which improved her health (which we also did, and then some) and kept on bragging… bragging… bragging. “Good for you” I kept telling her. What are you implying exactly? That’s when she said that she felt I was not doing my best for him. When I said she never met or saw Nicky, let alone saw his wound mass so she could not possibly understand, she got mad, telling me she had a wound, a while back, on her back, so she ‘got it’. Bah ha ha. So, she got ‘a‘ wound on her back a while ago, so she knows what my son, who has wounds on his knees/ankles/feet/forearms that haven’t healed since he was two years old goes through? I was livid. Nicky was mad. How DARE she?


I don’t think you can get more judgmental or know-it-all than that, can you? To dispense unsolicited advice to someone you don’t even know? So what if we have the same diagnose? Every patient is different & the level of severity is different in everyone as well, which apparently is a concept she is yet to grasp. For the past 16 years we tried it ALL-bandages, no bandages, light bandages, heavy bandages-if we bandage how we do it is because it is INDEED in his best interest. Look, I understand some patients do better without bandages. I wish that was Nicky. I want that to be Nicky, I do not enjoy spending 2-3 hours EVERY SINGLE DAY changing bandages, but the reality is, I do what I have to.

So, going back to other’s behavior’s upsetting my peacefulness… they did. But I notice I am getting better. I get over it much quicker. It used to take me weeks, now only days. Avoid and avoid some-more is my mantra. Filling my soul with positive, hope and love is my quest. Thinking positive… thinking positive… thinking positive…

Merry Christmas everyone!