When I was in kindergarten, we had a counter across the kitchen in our first home. Much like a bar, but short and with benches pulled up for us to eat different meals. This was the daily routine. We gathered around our big wooden dinner table for Sunday dinners and holidays. The bar was my favorite! It was at that lunch counter where my mom would serve me ham sandwiches after school everyday. I loved them.

I loved them so much, that when I was diagnosed with FOP, I created an imaginary friend who lived in Ham Sandwich City. Her name was Tina. Tina could do everything I couldn’t. Tina took ballet and had tickle fights and could still do headstands. It was through her, God comforted me. I could play dolls with her for hours or just have a conversation about how I really felt about the new world in which I lived.

My mom and dad forbid me from reading any literature on FOP. Outside of telling me to be careful, they kept the details to themselves. I never wanted to disappoint them, so I obeyed. It wasn’t until my twenties that a friend of my mom’s sent me the disease’s website. My worlds collided. I was a fish out of water. I had no idea how to navigate these new waters. But what the blessing was, was that I met others with the condition. God comforted me and my burden was removed and lifted when I met Jeannie Peeper, founder of the IFOPA. I met my real life Tina, too! She also has FOP and became my close friend. She taught me how to navigate my newfound information and made me feel comfortable knowing she went through what I went through. I was then elected to the Board of Directors of the International FOP Association. I was also editor of their monthly newsletter.

I believe God will heal me completely one day. He died on the cross for our sins and diseases. I think insulating me from the horrific truth of FOP was a good parenting call, because I grew up believing God can and will heal me. He has so far healed my knee that used to lock up, softened my arms, and I am sitting closer to ninety degrees recently. Believing that God is manifesting my healing. And soon!

Love,

Tisa