Fibrodysplasia Ossificans Progressiva

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Fibrodysplasia Ossificans Progressiva
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    Miriam Rocke

    The 'Anticipatory Fear' of Life With a Disability During COVID-19

    In the approximately 297 years since the coronavirus lockdown started in March, I have seen a wide range of commentary on the effects of the pandemic, particularly the psychological effects of persistent uncertainty and survival stress. Society has changed drastically, is constantly changing, and we don’t know enough yet to know where the future leads. There are people working from home while juggling childcare, or not working, or risking their lives working jobs that have been deemed essential. We, as individuals and as a country, have so many unanswerable questions. When will there be a vaccine? When will there be a treatment better than “stick them on a ventilator and pray if appropriate?” When will the economy reopen? When if ever will things get back to something approaching normal? When, when, when… and how do we keep our sanity until then? What will the toll be on our psyches, on our children, on the future? Our brains aren’t really built for extended periods of upheaval and uncertainty. I’ve seen people mention “COVID brain” — the dip in higher-level thinking because the brain is focusing on staying alive, the brain fog that comes with prolonged stress, the shattered feeling of having too many worries — basically, the effect of a worldwide pandemic on everyone’s mental health. And all I can think is “welcome to my life.” Because for me as a disabled person, this is nothing new. The rare condition I have, fibrodysplasia ossificans progressiva (FOP), is untreatable and incurable and, as the name suggests, progressive. It’s a genetic condition where bone grows in and around muscles and tendons, gradually immobilizing joints. Sometimes it arrives “noisily” in a flare-up, weeks or months of localized swelling that is hot and red and painful and unignorable, eventually receding like the tide to leave behind whatever bone has grown. Sometimes it arrives silently, where bone creeps steadily forward with no other symptoms. The new bone often comes with a loss of mobility, either because the affected muscle can’t flex the way it used to, or because the new bone forms a fixed bridge between formerly-moving parts. There is no warning and no way of predicting changes or preventing them. Patients with FOP might go to bed with full mobility and wake up with arms locked in place. One of my first major flare-ups, the beginning of a several-year journey to getting diagnosed as an early teenager, involved me curling up in an armchair to read and then, on standing up a few hours later, not being able to straighten my hip. Over the last 30 years I have lost more and more mobility, until now when I’m just about entirely immobile. Only my fingers and jaw remain mobile, and my fingers only partly so. I live with constant underlying worry about when the next painful flare-up will happen, what changes it will bring, and if and when my jaw will lock up. If/when I lose any more finger joints, I will most likely lose the ability to knit and crochet. If/when I lose jaw mobility, I will lose the ability to eat normal food and have to change to a liquid diet. I try not to think about it too much. And then there’s the other sources of uncertainty. The level of my physical limitations means I am dependent on other people for everything from going to the bathroom to eating to changing clothes. When things are going well, when I have enough caregivers and they’re all showing up on time, it all goes more or less smoothly. But my caregivers are human. They get sick or injured. They sometimes forget shifts, or we miscommunicate about expectations. Their phone dies and I can’t reach them. They have a family emergency of some sort. (In rare cases, they get arrested.) Sometimes I have to wait an agonizing hour or three between when I need to go to the bathroom and when someone is actually there to help me. Sometimes caregivers quit, giving anywhere from two weeks’ notice to a brusque “I won’t be showing up tonight.” Even when things are going smoothly with my caregivers, I am constantly worrying that something will go wrong, and trying to anticipate problems before they arise. It’s like chess, except higher stakes. There is a thing many people have heard of called anticipatory grief: when someone we know is dying, we can pre-grieve, to some extent. By analogy, there must also be a thing called anticipatory fear, and that is what we are experiencing right now with the pandemic. Anticipatory fear about the future, built on a shaky foundation of uncertainty and lack of knowledge. I have been living with constant anticipatory fear for years. It’s not just about caregivers, either. There are a thousand worries I juggle in my head. I rely on a wheelchair for mobility — what happens if my wheelchair breaks down somewhere, or gets a flat tire? I rely on help getting up — what happens if there’s an emergency, like a fire or earthquake, while I’m in bed? I rely on equipment to be able to live comfortably — what happens if the power goes out for an extended period? And the pandemic has added yet more worries. Because of FOP, my rib cage is fused, and FOP people are more susceptible in general to lung complications. I’m not more likely to get COVID-19, but if I get it it’s going to be bad. And yet I can’t completely socially distance, because I have multiple people coming in as caregivers. I have to rely on them to do their best to stay healthy, to stay as isolated as they can, to wear masks not just around me but anywhere they go. My COVID risk is not as low as I wish it could be — I don’t have that option. It is not much comfort to me that the pandemic, and its associated stress, is affecting a lot of people. But it does give me an interesting new area of common ground with non-disabled people. Being in a pandemic isn’t itself a disability — but it’s been interesting to see how many things that disabled people had been denied as accommodations, like attending meetings remotely or working from home, magically became possible when everyone had to do it. It’s been interesting to see the reactions people have had to being largely stuck at home, when some disabled people have been living that life for years, sometimes lonely and forgotten because society ignores what it doesn’t see easily. It’s interesting to see how much “normal” life is becoming like disabled life. Eventually there will be — I hope, everyone hopes — some way for things to return to normal. But hopefully, it will be a different normal. One that is kinder and more empathetic towards different needs, now that society has felt a tiny fraction of what disabled people go through. And yeah, uncertainty really sucks. A lot. But it’s survivable. For more on the coronavirus, check out the following stories from our community: The Problem With Saying ‘Only’ the Elderly and Immunocompromised Will Be Affected by COVID-19 If I Get COVID-19 It Might Be Ableism – Not the Virus – That Kills Me How America’s COVID-19 Response Is Exposing Systemic Ableism Why I’m Worried About Rationing If My Child With Down Syndrome Gets COVID-19

    Community Voices

    It’s a lonely life! Oh we have some very loving family and friends! I talk to people all the time. So it’s not lonely how you might think! It’s lonely because I can’t go next door and talk to someone with the same expierances that I go through!


    May Enos

    A Letter to My Friend With a Genetic Disorder

    I have a friend, an amazing friend, who lives with a rare genetic disorder. I can remember first seeing him struggle, how he had friends by his side. We got to talking one day and realized we are opposites. His bones are strong, while mine are more fragile. My genetic disorder means the glue that holds the body together is faulty, or not all there. My body loves falling apart, joint dislocations everywhere, while his soft connective tissue slowly turns into bone. We joked that we should combine our bodies –that way, maybe that will fix us. Our conversations are some of the best ones I have had. On another occasion we walked to our religion class together and just talked about our days. We talked about how I fear dentists due to the fact that the anesthesia does not work for me, and I feel everything the dentist does. I have months of someone drilling into my teeth to fill a cavity. This results in my having pain for months, but with my friend, it’s risky if his jaw gets stuck. It’s comforting to know him, because I know in one way I’m not alone. I’m not alone in pain, sorrow, and disappointment of not being able to do something I really want to do. We don’t share genetic disorders, but we both do have a genetic disorder and can understand some things about each, other better than our peers can. There is something I’d love to say to my friend, and for everyone out there with Fibrodysplasia Ossificans Progressiva. Please read this as if it’s written to you because I have a feeling you could all use something like this. My friend, You were sent on this road, before you could walk or talk. You may wonder what it’s like to be healthy, to not have chronic pain every second of every day, but the strength you possess is more valuable than any experience you may have in a healthy body. As a chronically ill young woman – who has seen both sides, who learned about her genetic disorder at 19 – I would like to say that you are amazing and so strong. A strength you gained from years of struggle. I want you to know you are not disposable. Your condition may have a shortened life span, and maybe it scares you, but you will always be worthy of love and kindness from others. There is so much more about you than your illness, or the way you walk. There is a beautiful soul that cares about others, there is someone who knows pain and tries easing it in others. You’re not alone. You are loved, and please believe me when I say there is someone out there who wants to love you, cherish you, care for you, and hold you, because she knows your friendship is priceless, your soul is beautiful, and your pain will not hold forever. Please remember, you are loved and lovable just the way you are. It’s OK to let others in. You are amazing, smart, kind, loving, and you are worth getting to know and love. I, for one, am grateful to know you. Keep holding on, I believe there are amazing things yet in store for you. Sincerely,Your friend with a genetic disorder. We want to hear your story. Become a Mighty contributor here . Gettyimage By: peshkov

    Jasmin Floyd

    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. The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.