Monthly Archives: March 2015

A Letter to FOP

The Mighty has daily posts dedicated to “finding strength, joy, and beauty in disability.” I’ve followed them for a while now and am always touched by the inspiring stories written with such grace, strength, and hope. For the entire month of March, they have asked their readers to write a letter to a diagnosis that has affected them or their family. Here’s mine.

Dear FOP,

I never imagined that I would be writing a letter to you, the diagnosis that forever changed my life and that of my family’s. 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.

TheMighty-blogpost031815-2I have come to know you over the past 16+ years but I’m not sure that 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 ten 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 that 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 life-long friends that 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 that I’m not alone in my journey and that 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 that 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.



Update, 2016: I recently recorded myself reading this blog post for a Rare Disease Day event!

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Two Years Later: A Tribute

972289_10151429620198597_1166467357_nToday’s post is going to be a little different than what I normally write about, but it’s something I felt like I needed to share in its entirety to continue healing my heart. It’s the story of my lightly-striped marmalade-colored tabby cat who lost his second battle with cancer exactly two years ago (March 2, 2013).

His name was Charlie and he was a very special gift for my 7th birthday. He had been rescued and brought to our local veterinarian’s office as an adult (approx. 3 years old), so his kittenhood still remains a mystery to us.

Not long after we adopted him, we found a golf ball-sized lump on his neck. It turned out to be a malignant tumor that needed to be removed with surgery… and his prognosis was not good. He was given a small chance of survival, but ended up completely pulling through and fully recovering despite all the odds.

Our bond strengthened and deepened after he recovered (especially over the years as my lap became wider and easier for him to curl up on). He was a constant in my life for those incredible thirteen or so years. I knew he’d always be waiting for me on my bed when I got home from school. He’d never pass up an opportunity to steal food from the kitchen, and I could always expect to hear nonstop mrrrrowwwwowww-ing around mealtimes. There was never a dull moment with Charlie around.

IMG_0068One day in mid-December 2012 I noticed a hard lump under his arm as I was petting him. I knew almost immediately that it was serious and the realization was overwhelmingly familiar. We dealt with it right away and did unfortunately get the answer we had been dreading. Because of Charlie’s age (around 16 years) and the frailty of his body, the cancer diagnosis this time around was completely untreatable, unless we wanted to risk the little health he had left. This was not how I ever imagined the last few months of his life to be like, but there was nothing I could do to change the circumstances. I knew I had to somehow accept that this was happening so that I could fully enjoy however long I had left with him. And that I did.

An indescribable amount of calmness and courage washed over me as those last few weeks and days approached. I felt at peace, even though I was about to lose my best friend, the one living creature that was consistently there for me when others weren’t. The day before his death, the vet told me that Charlie must be in a considerable amount of pain judging by how large the tumor had grown. He never showed it. Not once did I notice any change in his personality, signs of weakness, loss of appetite, or anything to hint that there were bad cells throughout his entire body.

On this day two years ago he greeted me by racing into my room and jumping onto my lap, ready for my undivided attention. I didn’t know it then, but in just a few hours I would have to make the call I was hoping I’d never have to make.

I truly believe that God brought Charlie to me because He knew we needed each other. We were both going through different battles – his with cancer and mine with FOP – and couldn’t face them alone. This cat was such an important part of my life and still is, even after his death. I continue to find so much of my strength from his strength and for that I am eternally grateful.


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