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.
I 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 non-disabled… they just do things a little differently.
You have not defined me, and you never will.
Thank you for changing my life.
Sincerely,
Jasmin
Update, 2016: I recently recorded myself reading this blog post for a Rare Disease Day event!
https://soundcloud.com/jasminfloyd/a-letter-to-fop/s-7b5xL
Good morning, Jasmin. Your heartfelt letter is bittersweet, yet poignant. I see in it the disappointment and sadness, but also the beauty of your will and your fortitude. I wonder if I could ever have strength like that. I doubt it.
I was so glad to hear your recording. It made me feel like I was in the room with you.
Thank you so much for sharing yet again. You are truly a special soul.
P.S. If I may say, you have the most sparkling blue eyes I’ve ever seen. No doubt you light up the room with them as soon as you enter it!
Great letter! Can we publish it in the next FOP Connection (JUNE) along with your thoughts about our FOP Community?
Jasmin, you are a beautiful, articulate truth-teller. Xoxoxox
Jasmine, I’ve known you since you were a wee one, through the IFOPA. Once, at Disney World, your Mom and I got in trouble for taking you & my daughter, Sophia, down a waterslide!
I’m so proud of you for speaking up. Thank you for your eloquent address to your constant companion, FOP, who, as you know, is a perpetual presence here also. Love, Connie
Beautiful post, I am so glad you started blogging. You are a voice that needs to be heard and an inspiration for so many, including my Sienna (as soon as she learns how to read)!
Amazing Jasmin, you’re a true inspiration.
Love you! Don’t ever lose sight of your goals, you have the determination to find a way to them. Strong would be the word I would use to describe you, if I could only pick one. There are so many more…intelligent, beautiful, caring, loving, empathetic….I could go on and on!
Wow ok it cut off my message but basically you’re such a gift to me and Your ability to touch others with your words will never cease to amaze me. Unf HNG. It will be an honor to get your handwriting inked on meh so no matter where life takes us you’re always with me
You are so amazing ♡ You’re someone that I want Joey to look up to♡
JAZZY I LOVE YOU I CRIED IN MY CEREAL. Wow I’m so lucky to have you as a BFF. You’re so talented and beautiful and not stuck up about it youre actually an endangered species. Omg I would never have had the confidence or understanding of myself without you. Your long messages, our OVOOS, our awkward stages, how much we’ve grown together. UGH. This was my fav blog post ever it really touched my soul
Jasmin, You have made me a better person because you are such a beautiful, strong and faith filled young woman! You have enriched my life and the lives of my family and friends, many of whom had known of you going back many years from my many conversations about the remarkable 8 years young girl I met – you! Through the years that have followed from my first meeting with you and your wonderful and equally beautiful Mother, RoJeanne, I have marveled at so many aspects of what makes you you – your sweetness, thoughtfulness, artistry, and yes your business acumen with your note cards and candles too. You have always been about family and I am happy and proud to be part of your extended family. You are touching the lives of many more people than you may realize. I was especially excited and happy to introduce many of my family members and friends to you a couple of years ago when we were all together in New York City. Innumerable times my Mother, sisters, nephews and nieces, and friends have asked for you. I want you to know how much you are thought of and loved. You are a gift to all of us, with an insight and view of the world that is so profound. Your pictures here from adorable young girl to beautiful young woman capture your inner spirit through your beaming face, smiling widely with gorgeous soulful blue eyes. I hope you also know what a teacher you are to me and all who know you, as you are a true example of how good and gracious one can be. I thank God for the gift of your friendship and as an extended family member! Much Love!
Can I say “BAM!” With heart, humor, tenacity & intention, you, dearest Jasmin, are defining courage – not the absence of fear & despair – but the strength to conquer them. Yours is an inspired form of giving, bringing grace to all you touch. xoKimberly
Dear Jasmin: I am very moved by your Letter to FOP. I appreciate your candor and your ability to share the most complex of emotions. You know complex. You know struggle…and you know love. Thank you for this letter. I admire you.