Blog · October 29, 2013

Beautiful You!

In my quest to collect quotes for my Facebook Page where I share them (I’ve always been a quote freak!), I’ve come through a lot of wisdoms over the years that make me stop and think for a second. None come closer to my heart than those that urge you to be you, you, beautiful you, and to never, ever compare yourself to others. That is a fine and an inspiring statement, but what happens when it’s people in your life that compare you to others? That happened a lot to me growing up and that’s why I find these statements compelling.

635238A few examples are in order. My older sister and I have always been extremely close, but we could not be more different. She’s always been a tomboy, who excelled in math and athletics. I was always a girly girl, although not as sophisticated as some, who excelled in writing and doing anything artistic. My sister was the captain of her volleyball team in high school and did great in any other sport she tried. Me? Not so much. Enter her gym teacher. When she saw my last name she immediately thought I was as athletic as my sister, but as much as I tried, I was never going to be that. Instead of perhaps helping me or letting me try my best, she decided the best course of action was to compare me to my sister relentlessly. ‘Your sister can do this, your sister can do that’, if anything happened she would blame me even if I had nothing to do with it, she made fun of me, pick on me, you name it, she did it.
This gym teacher was not the only person who compared me to others. Both my aunts, as much as I love them, felt fitting to compare me to a certain cousin of mine at every turn. Sure, we looked a little alike, but that’s where the similarities ended. Even today, she’s as different to me as night and day, but my aunts apparently didn’t want me to be me, they had to constantly yap how I should do this like her, that like her, down to the minutia of my hair, nails and clothes I wore. Ugh.

Being compared to others does something to our self-esteem that is extremely damaging. I am forever thankful my parents never, ever did that to me, because while I can let the gym teacher and my aunt’s comments slide, I don’t know if I could if my adorable parents (they are adorable!) would. So, THANK YOU Mom and Dad! Phew! I mean, my Dad’s first words on the phone when I call them is ‘Hi Beautiful’! I love you Dad… SO MUCH!

1009735_175164389321745_829334150_nOther comparisons that plagued me over the years were those from other bereaved mothers. I remember being so extremely uncomfortable when someone brought up the fact that their loss was harder because they had other children at home they had to explain that their brother or sister was in heaven.
When I lost Alex, I came home to an empty house, he was my first baby. That was tough too. I never thought my loss was worse or less worse, it all sucked, all of it.

I wrote a piece for my EB Info world website called ‘Every EB patient is different‘, because I was getting, frankly, quite tired of my son being compared to other patients with a similar if not identical diagnosis. As I wrote in that article, when Nicky was born, I had no idea there was a difference in severity or that some patients skin blister differently, I thought that either you have it or not, like cancer. There was no ‘worse’ or ‘better’ or ‘different’ kinds of the same cancer, it just was. It wasn’t until I met many other children and adults with the same form of EB as my son (Recessive Dystrophic) that I realized that their EB could be very different from my son’s.  It wasn’t only in their skin and how it healed and how and where they blistered, but also what mattered to one patient didn’t bother another. Some would walk through the pain and blisters, some couldn’t. Was the pain more sharp in those that couldn’t? Some patients hate wrapping their wounds and prefer to air dry them, they feel it works better for them. Others simply want to be covered, end of story.
I’ve met patients who cannot walk but whose hands have never webbed, others who walk fine and have stumps. Some patients do very well with g-tubes, for others it’s a nightmare. Every patient is different. We know what works for us and that’s the way it is.

Stop comparing and start loving. We need to support one another.

Love and Light,