I thought today I’d share some writing from a dear friend. She has shown me strength and perseverance in a way that no one else could.
What was life like growing up with visible scars that covered 90% of my body? It was hard. It was so hard that even though I was strong inside, every day I wanted to forfeit my life. Not a day went by that I didn’t cry about something that happened. I didn’t know how to talk about it in a way that got me the security inside myself that I so desperately craved. I had major surgeries 2-3 times a year that took up my entire Christmas break, spring break and the first 5 weeks of my summer vacation.
This went on for 13 years, until I was about 14 or 15. That was the age I left home. Growing up with burns on my face seemed to be the cruelest punishment one could ever go through as a child. People were nasty everywhere I went. People were also so kind it broke my heart. They were kind in a way that I never understood until my 20’s. Some people would spontaneously hug me and tell me amazing things that only I could hear, then they would cry a little. But I was too broken inside to see the positiveness in that.
My inner world was destroyed and I felt so alone. I was actually alone. I pushed everyone away. When I was younger, I stopped asking for help because when I had asked, no one seemed to know HOW to help me. So I learned that i was incapable of being loved and that no one cared enough to be with me for more than an hour session.
I couldn’t play sports. I couldn’t even run because it felt like my joints were all falling apart and that everything inside was falling out. We now know that is from my EDS(Ehlers-Danlos Syndrome). I felt abandoned. The burns on the bottom of my feet made even walking uncomfortable. When I felt sad sometimes, I tongued the burns that are inside the roof and back of my mouth.
When i was 12 I started binge drinking at night to pass out because the thoughts in my head raced. My thoughts were constantly reminding me of all the horrible people that are out there. The pain was intense, and it never seemed to have an end. That’s what growing up was like for me.
When I was 14 I was raped by a boy in the woods. Today, there is a row of neatly stacked houses where it took place. August 16th. I still remember the date it happened. It was a real thing. It really happened. I didn’t think I could break anymore but that snapped me in half. I ran home. My mom was aghast at my tears and I just fell into the house. She grounded me. She wouldn’t let me tell her what happened, it became a horrible memory in my heart.
That’s what life was like growing up for me. An inner storm of sadness, shame and fear. But it was the sadness that allowed me to reach up to God. Sometimes I could feel him holding me. When I got mad, I couldn’t feel Him. I thought he went away and was mad at me. (I was wrong. He never left my side. He was always there, holding me in His arms and carrying me. Anger can be so destructive).
The past is an interesting thing when you look at it through the lens of today.
Yup, I can. Ehlers-Danlos Syndrome is a genetic disorder of the connective tissue in the body. I have faulty collagen. I have soft, stretchy skin, my tendons tear easily, my veins dilate too much with activity causing blood pooling and loss of blood to the brain (without my medication I could not do any of my exercises because my pulse would easily go over 200 in a few minutes), scoliosis, degenerative joint disorder at a young age, periodontal disease at age 19 (gums are connective tissue). Easy bruising. Lax joints. Some days when I’m walking I feel like I’m jar jar binks – all loosely built. Slip discs. Muscle spasms.