For some people living with a chronic illness is life changing and sometimes can define who we are and what we can do, but I know a 15-year-old girl by the name of Lili who does not let her chronic illnesses stand in her way of anything.
My little sister Lili is 15 years old and has asthma, Crohn’s disease, and Eosinophilic Esophagitis also know as EOE, all of which she was diagnosed with on her third birthday.
When Lili was about 5 she had a feeding tube and I remember it being the weirdest thing ever at first. She used to call it her second belly button. It was her normal and it soon became mine, but it did not define her, she thought it was beautiful.
You know when you are little and everyone asks you what you want to be when you grow up and everyone says a firefighter or the president or someone who can change the world, well my little sister wanted to be an underwear model.
I know what you are thinking, what in the world? A 5-year-old wants to be an underwear model? Yeah she did, but it was not because she wanted to be a Victoria Secret Angel or have all these people looking at her, but because she wanted to show the world that you could be beautiful with two belly buttons and with scars on her stomach too.
In that moment, I knew instantly I wanted to be like her when I grew up.
I wanted to be unapologetically me, I wanted to be so bold and proud of who I was in the same way she was. I did not want to be defined by my circumstances or a piece of medical history. I wanted to be defined by who I was and how I lived my life.
I came up with a nickname for Lili, ‘Band-Aid’ I know it is weird trust me but here is why she is called that. Part of it was because she was doing an organic honey facemask and she had put Band-Aids over all her sports and that is how I got the name but it has a much deeper meaning. Lili goes through some hard things in life and she can experience a lot of pain but you would never know because she is always smiling.
When it feels like my world is falling apart or I am in pain Lili is there to help “heal” me, like a Band-Aid. She stays with you until you feel better until you are healed. She protects you from getting infected in a way, she makes sure to not only help you feel better but she tries her best to make sure nothing else can hurt you or make it worse. Then when you feel all better and you take the Band-Aid off but still have the box of other ones on a shelf somewhere for the next time, Lili is right there waiting for the next time, to make you feel better again.
I would not say that by my sister or I enduring chronic illnesses have changed my life, but I would say seeing how my sister lives her life despite them has. Her ability to still see good in the world after going through some people’s idea of hell and her ability to love others beyond her capacity to love herself and her ability to care for any and everyone is something I strive every day to be like.
To this day I still want to be like my sister when I grow up. I want to care for others more than I care for myself, I want to be bold, I want to be unapologetically me, I want to change people’s lives the way she has changed mine, and I want to share her story with everyone and let them know that what is written on a piece of paper does not define who you are and it certainly does not define how you can live your life.
My 15-year-old sister has been changing my life since the day she was born in ways I did not even think was possible and I hope that she inspires you to live your best life despite what a piece of paper may say.
