This is a post I wanted to share after talking to a CHD friend about feeling like aliens.
It was so awesome to know I was not alone and thought maybe others are out there who feel like aliens too.
I am 32 years old with HLHS, TGA, ASD, VSD, and MVS. I grew up with zero resources and did not know one single human being with a scar on their chest or with any illness for that matter. Everyone in the waiting rooms with me were over 60 years old my whole life. And even they didn't have scars, that I saw.
It's hard to explain the depth of disgust and hatred I had for my body, and my existence. My teens years were the worst. There were certain ages I couldn't even face mirrors. I would cover them up in my room and only use them to get ready in the morning, then cover them again.
Until my mid twenties, I refused to look at my body naked. For 20 years I'd get out of the shower and close my eyes until I had a towel around my body, then I'd look in the mirror to dry my hair. I cut myself often to release the pain. "But wouldn't that give you more scars?" You may ask. Some left scars, yes. But they were in places I could hide, not on my chest, stomach and back like my heart surgery scars, and they were under my control.
Due to many other factors outside of the pure disgust and hatred for my body (which you will read in my book) - I drank myself to death when I was 15 years old.
I didn't feel lovable, I didn't think any guy would ever truly love me because of my body and death sentence, I was chosen by FORD Modeling Agency and a couple smaller ones then dropped once they found out I had scars and varicose veins, and many other factors that year - I wanted to die; and I succeeded. I was pronounced dead at the scene, yet was revived in either the ambulance or the hospital. I'd have to ask my mom.
I couldn't face what CHD did to my body, my life, and my families life. I couldn't face the fact that I couldn't change it. I was determined to look normal. Because I decided for myself when I was very very young, that "beautiful" IS "normal." No matter how many times people said I was pretty or beautiful, I would smile, look down, then whisper in my head, "you have no idea what's underneath my clothes." I even got disgusted or angry at people during my teens for saying I was pretty.
I saved my money since I was eight years old for two things: A car, and plastic surgery.
The week I turned 18, I went to a consult with a plastic surgeon for my scars, and even went as far as having a surgery to try to fix my veins that were damaged from repeated heart catheterizations with needles three times the size they are now for babies. It was unsuccessful. They are too damaged and cannot be fixed or strippped. I felt like an alien that landed on the wrong planet for so many years. ...
Until the internet.
I thought the internet was for e-mail and AOL chat.
I had no idea you could look things up or connect with people until my twenties. Which is around when Google came out.
The internet and social media has literally saved my life and I am beyond thankful for having been blessed with making it to the information age to meet so many amazing people with so many invisible illnesses who had been living what I call a secret life too.
"Wow, I bet they feel like aliens too!" I thought.
It took me 26 years to be comfortable enough to show my scar and tell healthy friends I have CHD. When I began meeting other CHDers, I saw some of them were married and I thought for the first time in my life, "wow, maybe someone out there would actually love me.." The more time I spent with my CHD friends, the more comfortable I became in my own skin for the first time in my life.
I then began to share my story more and had a photographer who wanted to help me capture this metamorphic time in my life. Transformation from alien to somewhat human.
But what is human life like? I'm still trying to figure that out. This is only one reason why I'm so passionate about people sharing their stories and knowing we are not alone - because it literally saved my life, and I know it can save others too.
This is why I created CHD Legacy.
In hopes of saving people's lives.
I know myself, and I know if I wouldn't have ever met a CHD person, I wouldn't be here today.
If you are reading this and you feel like giving up - please don't. You never know what all of your tomorrows will surprise you with.
1-800-950-NAMI (6264) or email@example.com
This is why when we are #ONESTORYSTRONGER,
we are also one more life educated, inspired, and maybe even healed.
Stories Create Awareness. Awareness Create Change. Change Saves Lives.
Creator of CHD Legacy (2015)
*Update 2019: I am now engaged to the most amazing man I have ever met and I'm blessed enough to soon call him my husband.
I love myself, and I'm slowly getting better with my body the older I get.
I am overall pretty freaking happy, but also never stop working on myself. I have built a life for myself that I am thankful for every single day.
I never thought I'd live to see 30, let alone 20 years old - now here I am - 33 years old,
doing all kinds of things, and as my doctor recently said, "you are 33 going on 23."
I'm not slowing down anytime soon!
“Never doubt that a small group of thoughtful, committed citizens can change the world.
Indeed, it’s the only thing that ever has.”
– Margaret Mead
Thank you for your support.
Thank you for existing.
Your existence gives me hope.
Educate. Inspire. Heal.
Copyright © 2019 | By Stephanie Romer