I originally shared a letter I wrote to my rare disease, FOP*, in March 2015 as a way to process what I was going through. (If you’d like to read it, click here.) My life has recently changed greatly due to FOP’s progression, so I decided to write a new version of this letter.
Dear FOP,
I first wrote to you in 2015, about four years before you suddenly changed every aspect of my life. You have now affected my entire body in some way. You’re unforgiving, relentless, and very cruel.
You have completely immobilized my legs with your rampant bone growth. I’m no longer able to walk, sit, or stand straight. You have taken away the life that I was envisioning for myself, while forcing me to become primarily bed bound as a young adult. You’ve made the future feel incredibly scary and uncertain.
I’ve been grieving my independence because of you since early 2019. Actually, the grieving process began before I even fully lost certain abilities; I was mentally preparing for a number of years. I’ve always been painfully aware of your progressive nature, and I tried to take full advantage of my mobility while I still had it.
You stole some of my favorite physical abilities: being able to sleep on my side and curl up in bed, kneeling down to play with my cat, walking onto an airplane and finding my seat, going to concerts with my friends, and hiking through the woods with my family. You have made daily activities even more grueling, and many simple things are now impossible.
I have to continuously adapt to my environment because you make my body feel so unfamiliar. The flare-ups you’ve recently caused have been the most traumatizing and emotionally draining experiences I’ve ever lived through. Being forced to accept my body’s physical changes and witnessing the progression is sometimes even more exhausting than enduring the severe pain.
I’m still trying to heal from all of the trauma you’ve caused, but I’m getting there. Even after absolutely everything you’ve done to me, all the overwhelming pain and the life I sometimes feel like I’ve lost, I still have myself. You still don’t define me, no matter how drastically different my life looks now.
Sincerely,
Jasmin
*FOP stands for Fibrodysplasia Ossificans Progressiva: it causes extra bone to form over muscles and connective tissues. I have extremely limited mobility, chronic pain, and scoliosis as a result of the spontaneous flare-ups of new bone growth. My most recent flare-ups occurred in 2019 and 2020. I lost full mobility in both of my legs; they’re locked straight (my knees don’t bend). My left arm is also locked at my side, so I’m unable to raise it past my waist.
Learn more about FOP at: www.IFOPA.org
One of the many things I’ve ALWAYS loved about you (for 21 years) is your positivity. While you have EVERY REASON IN THE WORLD to be full of rage, bitterness, depression, self pity, despair and angst, you’ve purposefully chosen another route. With the magnitude of FOP, making that choice and then living it out in daily life, is no small feat. It speaks determination, follow-thru, tenacity and spirit. Add to all of this, that you have room for and invite and even create reasons to laugh….are all phenomenal. And speak of a Spirit solidly connected to other realms, and a magnified focus on life’s good stuff. You are not a saint, because you are real, before that became a “thing”. Love you girl. Hugs.
I recently took care of a patient with this disorder and found your page after learning about it for the very first time. Thank you for sharing your story. May you continue to maintain your good outlook on life and find comfort in the little things.
Hi Jerry, thank you so much for your comment and kind words! It means a lot when our medical providers spend extra time researching and understanding FOP. I really appreciate your interest in learning more about our disorder!
Keep writing Jasmin! You have a powerful spirit and powerful words to express it. It’s a tough challenge (I know because my son had FOP) and there are so few answers for you or the others with FOP. I assume you know of Jeanne Peeper and the IFOPA.
Thank you for helping us to understand what it is like, Jasmin. You are a gifted writer and your letter to FOP is honest and deep. I admire you so very much. Like your Dad said in his comment, I am so pleased that you had that long extended trip touring Los Angeles and San Francisco…what a special trip that was. You are an inspiration to me, Jasmin. Thank you, again, for writing this Letter to FOP. xo S.
I’m so grateful you wrote a new Letter to FOP – to step to the mic and use your voice – not letting FOP speak for you. Your story is yours to tell and I’m glad you’re sharing it. Loss, love, pain, hope, past and future. And Mitzi! The sweetest of friends are those who are furry, purr, and sit on your heart:) xoKimberly
Procure se concentrar no amor à sua volta, inclusive do seu lindo gato, mais do que no segundo esqueleto. Você é linda, e sempre será a Jasmin. Você está aí. Todos temos nossas limitações, mas nem todos lutamos contra elas. Não sinta pena de si nunca. Sinta admiração. Um abraço, diretamente do Brasil!
I remember how much fun we always had hiking through the woods and going to the different zoos, the beaches and parks – touring San Francisco and Los Angeles. I’m really happy that you were able to travel before the latest set of flareups. I’m so glad you have Mitzi – she looks like a sweetheart. Much love and many prayers for you and everyone around you.
Jasmin, I wish I could take your pain away, but I can and will continue to pray for you and for all those suffering from FOP. You are a gifted writer and sharing your story is a gift for everyone who has FOP, but also for those of us who love you.
Jasmine, It’s a good thing to call out the trauma you’re living. It’s doubtful that anyone except a fellow sufferer can even imagine the trauma. I applaud your fight for self in the face of this despicable affliction. I pray you continue to find comfort somewhere. Bob