A Letter to Fibrodysplasia Ossificans Progressiva

Dear FOP,

I never imagined I would be writing a letter to you, the diagnosis that forever changed my life. You may prefer to be called by your full name, Fibrodysplasia Ossificans Progressiva, but I won’t give you that satisfaction this time. I’m tired of having to explain what each word means before even beginning to say anything else.

I have come to know you over the past 16+ years, but I’m not sure I like you very much. You’ve caused a lot of emotional distress, heartache and fear in my family members’ lives, and I can’t forgive you for that. You have delayed countless milestones for me and have created never-ending obstacles and setbacks in my everyday life. Everything is 10 times more difficult than it should be because you always seem to be dragging me down.

I’m thankful to have had a happy childhood despite your cruel intentions, but that was only because I was sheltered from the severity of what you were truly doing to me. I was oblivious to the reality of your ways. My body drastically changed every few years as I was growing up. I progressively became more and more immobilized, unable to partake in the same activities as my friends. I dealt with and still experience severe pain and discomfort during spontaneous flare-ups (my muscles, tendons and other soft tissues are turning to bone). Because of you, my body is noticeably different, and I’ve struggled with many insecurities and self-loathing. You made me feel like an outcast: unheard and unimportant.

I’m nearly 22 now, which is roughly half of the average lifespan of someone who is affected by you. I know I’ve missed out on a lot of opportunities because of you. I might not be able to experience all I want to, but I’m working on not being bitter about it and still doing my best to reach my goals and dreams. Sure, I have my bad days when I wish you would just leave me alone (spoiler alert: you never fully do). And yes, I’m sometimes envious of my friends because they can do things that are physically impossible for me. But I’ve accepted you as a part of me, even though I do not particularly care for you.

I’m acknowledging you and continuing to live.

Thanks to you, I have found three incredible and irreplaceable communities of people who are going through the same or similar challenges as me. They have become lifelong friends who I probably wouldn’t have met otherwise. Even if I had, I wouldn’t have been able to relate to them as much as I do. I have learned I’m not alone in my journey and there is always hope, no matter how dark or dismal the circumstances may be. I no longer view you as a burden, in any sense of the word, but more of a blessing in disguise.

You’ve shown me I have more strength and courage within myself than I could ever imagine. You’ve helped me to not take anything, even the smallest or silliest of things, for granted because it could be gone the next day. Living with you has also taught me that people with disabilities or impairments are equal to the able-bodied… they just do things a little differently.

You have not defined me, and you never will.

Thank you for changing my life.

Follow this journey on One Spirit, Two Skeletons.