FOP affects each person differently. While there are certain similarities among people with FOP, there are as many differences. It is impossible to predict who will be affected minimally and who will be affected more seriously and more rapidly. There is one certainty about FOP: it is progressive. It also has a way of sneaking up on a person when least expected, at a time when the complacency of everyday life has set in—just at the moment when the latest limitations no longer seem the worst thing imaginable.
This begins a phase which I refer to as "When the wanting is not enough" because wanting the pain to stop and wanting life to return to the way it was, is not enough to stop the pain or to stop life from changing. But ultimately "When the wanting is not enough" is not about resigning yourself to the fact that you are not the one in control of your own body; it is recognizing that things don't always turn out exactly as you had planned. It is about accepting things so that you can go on living. It is not an experience that is reserved only for people who have FOP and other disabling diseases, but it is one that people with FOP must deal with earlier in their lives and on a more regular basis.
What is the hardest part about having FOP? Sometimes it is the pain. Sometimes it is that only one in two million people can understand what you are going through. Sometimes it is knowing that you are often dependent on someone else for the little things that most people take for granted. Small victories—such as surprising my mom on Mother's Day when I was 12 by dressing myself for the first time in my memory (and maybe ever)—sometimes count for much. In general, however, I think that FOP is probably harder on parents and other family members than it is for the person who has FOP. I do not remember what it was like not to have FOP. So, although there have been times in my life when I wished my condition would go away, I really cannot picture my life any other way. For me, I think the hardest part has always been not knowing what the outcome of a flare-up would be and how much motion might be lost. It is hard to make necessary changes to one's life until these facts are known. The interim period is one of fumbling in the dark and struggling to cope.
FOP controls my body, but it does not control my life. I know that I am a stronger person because I have FOP. Dealing with FOP has given me the self-knowledge and strength of conviction that some people never find. We all have certain strengths, certain weaknesses, and certain problems that we must overcome in our lives. Unfortunately for me, my weaknesses are the visible kind. They are the first thing people see and occasionally the only thing that people see. Fortunately, the people in my life expected nothing but the best from me, and as a result, I have expected nothing but the best from myself.
In what might be the ultimate irony, rather than hindering what I can do in my life, I think that I have accomplished more because I have FOP. Or at the least, I think my life has more meaning because of the path I have chosen, a path influenced by my own life experiences, good and bad. There are two accomplishments of which I am most proud. One is my career as a teacher and tutor, though not because of any doubts on my part that I could do it. I figure that if I can get through FOP, I can get through anything. The other is my participation in the International FOP Association, a support group for families dealing with FOP.
At times, my decision to become a teacher surprises me. Throughout college and almost to the moment I applied to graduate school to obtain a Master of Arts in Teaching, I was determined not to be a teacher, mostly because , at that time, people assumed that is what a person who majors in English and history should do. Also, from personal experience, I knew that adolescents, often caught up in their own worlds, can be unwittingly cruel to a person with a disability. At least that was my own experience. (I wasn’t teased, though I did feel ignored and overlooked.) To make matters worse, I was (and in many ways still am) painfully shy and afraid to reach out to people for fear of being rejected, or out of determination not to be a burden to other people. My high school years were at times bearable and at times miserable. I was determined to distance myself from those years. I also knew that teachers were overworked, underpaid, and sometimes under-appreciated. In the face of these cold, hard facts, I have since decided that I did not choose teaching as much as it chose me.
As a teacher, I was pleasantly surprised at the open natures of many of the students I taught. If given the opportunity, they were not afraid to ask questions of me. ''Why can't you sit down? Is FOP painful? How many people have FOP?'' In all seriousness, a student once asked me whether I sleep standing up. I easily answered questions about myself, questions I wish my classmates years ago had the courage to ask. I find that such questions served as a means to get past my disability. Undoubtedly, the hardest question a student ever asked me was ''Did you like it as a student here?'' during an occasion in which I went back to teach at my old high school.
I used my past experiences to make myself a better teacher and tutor. I tried to have compassion and patience, which my peers often lacked. I looked for strengths in my students before I look for signs of weakness. I aspired to teach them that they can do anything they set their minds to do if they wanted it badly enough. I gave them my best and expected nothing but their best in return.
The other thing in my life of which I am proud is the role that I played in the IFOPA. It all started rather inauspiciously. In 1989, I knew of no one else with FOP. Now I know of hundreds, many of whom I have met personally at IFOPA family gatherings. And when I was first diagnosed with FOP, my family was given very little information. As a result, one of the first things I wanted to do when I found the IFOPA was to ask if I could start a resource center for families. Little did I know that would later lead to writing and editing guidebooks and newsletters, publishing and managing a website, coordinating an e-mail discussion group, answering e-mails from all over the world, and coordinating international meetings.
A discussion of the impact FOP has made on my life would not be complete without mention of the impact it has had on my entire family: my parents, a younger sister and her family, and myself. I know it has been hard for them to watch me in pain and not be able to do anything about it. At times they have all made sacrifices for me. When I was younger, there were times when my sister did not get as much attention as she deserved because my needs were more pressing. If there is anything I regret, it is that my life affected hers so much. There were many times when my parents put aside their own needs for mine. My parents have often served as my arms and my legs, doing for me the things I could not do for myself. It is only because of them that I am where I am today. I sometimes feel extraordinarily guilty that I demand so much of their time. At other times, I am selfishly torn between their needs and my own. When I was diagnosed with FOP almost 45 years ago, none of us knew what lay ahead. Thankfully, we took things one day at a time. I am not sure if you can take FOP any other way. I think we all learned a lot in those early years about what we could handle. Together, we have done our best to see a world full of challenges, rather than a world of problems, a world with possibilities, rather than a world of limitations.
P.S. This is an older family photo because it's often hard to get my entire family in the same place at the same time AND in the mood to take a photo at the same time. It remains my favorite family photo after all these years.
Most people would have a hard time imagining life with fibrodysplasia ossificans progressiva (FOP), an extremely rare genetic disease in which bone grows in muscles and connective tissue, leaving joints of the body frozen in position. In a sense, the body is forming an extra skeleton. Having lived with FOP for most of my 51 years, I would have a hard time envisioning life without it. FOP has brought great pain, many tears, and sometimes alienation from a world that seeks perfection in life. FOP has also taught me some important lessons about myself and the world in which I live. I readily admit that my feelings about FOP depend a great deal on how closely I feel its presence as a silent enemy within my own body. Yet at all times I cannot help but think that the worst parts of my life are intricately tied to the best parts of my life—that my struggles have made the good things in my life count for more.
FOP can strike as a result of trauma—bumps, falls, injections, and surgeries can lead to an FOP flare-up. FOP also strikes spontaneously. There are also times when, despite obvious trauma, FOP does not appear. In other words, I never know when or where FOP will show up. Was it something I did, and something I could have prevented? My parents likely worry about such matters to protect the child they created, and I can understand that. I think about that sometimes too. But if given a chance to lead my life over again, I think I would still make the same choices, even the choices that hurt me in some way. I don't want to be so afraid of getting hurt that I forget to enjoy life.
Though it might sound strange, as a child I never thought of myself as different, even though there were certain physical things that I knew I was unable to do because I could not raise my arms. One particular incident stands out in my mind because it changed all of that. One day, when I was 10 years old, my teacher saw me sitting on the sidewalk during recess while the other kids played a game called two-square. To play this game, two children bounced a ball back and forth in a grid until one failed to hit the ball. The teacher convinced me to try it and told the other students to "go easy" on me. This special instruction soon proved to be unwarranted, as I quickly turned into a very capable player and even moved to a four-player version of the game for a bigger challenge. It was the first time I had done anything physically challenging in my life, and it felt good.
My parents encouraged me and painted a court in the garage where children from the neighborhood would come over to play after school. Then, on the last day of school, I fell, injuring my knee. I did not give the incident much thought, for at that time I felt that it would take a much more traumatic event to bring on an FOP flare-up. I soon learned how wrong I was. That incident possibly started a painful four-year cycle in which I lost the motion in my left hip and knee (I say possibly because the initial injury seemed to resolve after a summer). By age 12, however, I had to rely on crutches to walk. I also lost the sense of innocence. The childhood feeling of invincibility that many children seem to hold onto until adulthood was gone. I learned just how simply and quickly things could change. But even if I could turn back time, I would still choose to have the experience—despite the pain—both physical and emotional. My memories of playing four-square mean more because of what I have gone through since then.
And, amid the pain and tears, I was introduced to the person who remains my friend an amazing 40 years later. Our friendship is one of the few relationships in my life where I have never felt guilty about being needy, dependent, and demanding (of attention and time) because she chose to be my friend both because of and despite my disability. And I did not need her so much as we needed each other. We recognized a loneliness in each other that can be common at that awkward age. She enjoyed helping me, whether it was carrying my books or making me laugh during a flare-up cycle. I never felt that she was doing these things because she felt sorry for me. Because of those things, I was able to open to friendship and being there for her as well.
Coming up: Part 2
Why I started this blog. When I was planning my kindness challenge, I gave all team members a checklist of 50 acts of kindness. I quickly realized it would be helpful to have a place to go to get more information about some of them. Most of them are relatively easy to do, though a few were more unique (as are all of us!) and required a bit of advanced planning. I wanted to make the experience as friendly as possible. A website. A blog. Yes!
At various times in my life, I thought about creating a website and blogging—at least after it became a thing. I wanted to share information about life with a disability and my life with a rare genetic condition in particular. Yet there were already places to learn about FOP and a guidebook to read. I didn’t want to reinvent the wheel.
So I waited until an idea came to me. My blog would be a place to share kindness and little pieces of my life that I hope others might appreciate. I am the first to admit I haven’t been great at showing up here. I’m still a work in progress. This year one of my goals is to revitalize my website and blog.
I’m starting with the project that was one of my favorites during the kindness challenge. One of the items on the list of 50 was to “create your own act of kindness.” My team got a bunch of glitter, water bottles, and set out to make calming jars. Originally designed with children in mind (thus their other name of time-out bottles), they made us feel calmer and happier and we wanted to spread the joy. Here is what we wrote on the notes we distributed with them: "The is a mindfulness jar, also known as a calming jar. Mindfulness is the basic human ability to be fully present, aware of where we are and what we're doing, and not overly reactive or overwhelmed my what's going on around us. Shake it and watch as swirls of glitter move at their own graceful pace from one end of the bottle to the other." Download a set of the notes that are ready to print if you would like to spread some glittery kindness around.
There are a lot of different instructions out there. These instructions worked best for us.
And thank you to my teammates and all others who participated in my little challenge to add more kindness in the world.
I was very excited when I first started writing here. My little corner of the world. Somewhere along the way, life seemed to get in the way. Well, I’m determined to start again—any day is a good day for a new beginning rather than waiting and wondering what might have been.
When the pandemic of Covid-19 came along, it was as if some sort of switch had turned off. One day we could meet in person and then suddenly we all found ourselves physically isolated from family and friends. As if that wasn’t tough enough, we became isolated from the physical ability to be out in public, whether it was park visits or other sources of recreation or difficulties with finding food (and toilet paper) on supermarket shelves.
When I first created this space, I planned to write about what it was like to live my life mostly from my home, going out only if really needed to do so or if I really wanted to do a particular activity. It’s a bargain I’ve struck with life to keep me functioning as well as I can and with minimal pain. You see, in addition to having the rare disease fibrodysplasia ossificans progressiva, I sometimes get brutal headaches that can be, in some ways, even more debilitating than my daily life with FOP. (See my next post that is more specifically about FOP and living life with this extremely rare disease. Coming soon.) Particularly in the last few years, I’ve been able to manage the headaches a bit better by doing some things that seem to raise the threshold for getting headaches and help them be more manageable most of the time when I do get them. However, they still remain a factor in my life.
When social distancing became a thing (admittedly one we wouldn’t have chosen!), I had all of these plans to try to use the skills I’ve developed to be what I call “happy at home” to help others manage the time better. Within the first week (Okay, to be honest the first night!), I realized that what I’ve learned doesn’t even help my loved ones much of the time, particularly my mom who is my full-time caregiver. Like everyone, our household has struggled through this strange season. We muddle through as best we can. I’ve also realized that my world functions because of the flow of a small but mighty group of people in and out of my home. More than ever, I’m extraordinarily grateful for them and realize how blessed I am.
I know that some people are starting to venture out. Because of my extremely limited lung capacity and my disability, as well as my parents’ ages, we are not going out yet except to get food. We are not inviting visitors, including family (My sister lives nearby and is a nurse.) into our home. We have to wait patiently and hope for the best. If you are venturing out, be safe and be kind.
On Mother’s Day in the U.S., I’d like to close by saying how grateful I am for my mom. This picture was taken a couple of years ago when we went to the Sunday Market in nearby Franklin, on Mother’s Day.
Most years I promise I have quiet birthdays with my family. This year and last year were notable exceptions. On the eve of the 50th anniversary of my terrestrial debut, I wanted to share what I did last year...
I wanted to do something special to celebrate my birthday last year with those closest to me. After a lot of thought, I decided to do a mass release of monarch butterflies into the sky. Why butterflies? Well, butterflies, particularly monarchs, have become a symbol to people with FOP, the rare disease that I have. Butterflies go through cycles of changes. They must adapt to new circumstances. They are symbols of hope and new beginnings.
There is a Native American legend about the release of butterflies. If anyone desires a wish to come true, it is necessary to capture a butterfly and whisper that wish to it. Since a butterfly can make no sound, the butterfly cannot reveal the wish to anyone but the Great Spirit who hears and sees all. In return for giving the beautiful butterfly its freedom and releasing it to the sky, the Great Spirit always grants the wish.
I love thinking of the butterfly in these terms, and I chose to wish for two things that mattered the most to me. I hope these wishes come true with all of my heart. As you watch this video, I invite you do the same, just as if you had been here in person to share the experience with me.
I also had a second reason for doing a butterfly release, especially last year. I normally don’t think about the fact that I have a 50% chance of living past 41 and I’m currently 49. I prefer instead to live in the spirit of this quote from Frederick Buechner: “One life on this earth is all that we get. Whether it is enough or not enough, and the obvious conclusion would seem to be that at the very least we are fools if we do not live it as bravely and beautifully was we can.” But mortality feels a bit closer this year, as I’ve known three people with my disease who recently died who were much younger than I am, was well as a good friend who was near my own age. So while most people probably don’t celebrate 49 as anything special and instead celebrate the momentous number of 50, I’m choosing to cherish 49, and every year hereafter, knowing that nothing is guaranteed in life. I’m choosing to celebrate those we have loved who are no longer with us for touching our lives. I’m choosing to celebrate butterflies.
“A butterfly lights beside us like a sunbeam.
And for a brief moment its glory and beauty
Belong in our world.
But then it flies on again.
And though we wish it could have stayed,
We feel so blessed to have seen it.”
A little explanation of what I mean by courage, kindness, and other things.
Each year I participate in a project called One Little Word. This year my word is courage, though maybe not for the reasons you might think. This post is from my January prompts, which help us figure out where we want to go with our words.
Definition (from Brené Brown): The root of the word courage is cor, the Latin word for heart. In one of its earliest forms, the word courage had a very different definition than it does today. Courage originally meant “To speak one’s mind by telling all one’s heart.” Over time, this definition has changed, and today, courage is more synonymous with being heroic. Heroics is important and we certainly need heroes, but I think we’ve lost touch with the idea that speaking honestly and openly about who we are, about what we’re feeling, and about our experiences (good and bad) is the definition of courage. Heroics is often about putting our life on the line. Ordinary courage is about putting our vulnerability on the line. In today’s world, that’s pretty extraordinary.—Brené Brown
My reason why: Notice that instead of giving a definition of courage from a dictionary, I used Brené Brown’s overview of the word. The historic definition of courage and her interpretation of it is what pulls at my heart. I have three main goals that I think will help me embody courage: work on a special needlepoint project again (a personal challenge and a sign of deep love); do more memory keeping (creativity and belonging); and spread kindness wherever I can.
One of my favorite quotes about courage: “COURAGE doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.”
My mantra: "Courage, dear heart" from C.S. Lewis
Note to myself: You have set big goals for yourself this year. Remember, that is one of the ways you work best. Make the things you love a habit. When your fears are talking too loudly, listen to them and decide if they are getting in the way or trying to teach you a lesson. (It’s okay to be afraid sometimes, even if your word is courage.) You can do this...not in one day, but little by little...It all adds up. Keep showing up and make it happen.
More kindness (to others as well as myself)
Having the courage to follow my heart and intuition
Have the courage to try even if I think I might fail—It definitely won’t happen if I don’t try
Let go: I want to make sure that I’m not letting the things I can’t do interfere with the things I CAN do.
In what ways is my word already part of my life: On most days, I will tell you that I’m just living my life—disability and all. It’s not easy, yet I don’t think of myself as especially courageous in the sense that many people think of the word. However, I believe that I am a stronger person because I have FOP. I just have to remember that.
What do I want more of and less of:
More faith and love, Less fear.
More celebration, Less comparison (In particular to the younger me that had more mobility and endurance).
More purpose, Less wasting precious time.
Less perfection (which doesn’t exist!), More COURAGE
What do I fear most this year: I said I wanted vulnerability, so here it is right up front. Even though I truly believe that FOP has made me stronger, I also hate the things it tries to take away. And sometimes that includes confidence in myself and what I’m capable of doing. I’m going to try my best not to let it be that way this year.
What am I mot excited about this year: Showing myself that I can do hard things. Getting back to unfinished projects that have been on the sidelines far too long.
Link to my Spotify playlist Courage, Kindness, and other Things
I can't believe I'm doing this. BOTH starting a blog and the Kindness Matters Challenge. For my 50th birthday this year, I’ve decided to celebrate by committing myself to 50 acts of kindness from June 6 to 30. As some of you know, because of a physical disability, there are many things that I can’t do without help. So part of my efforts will involve acts of kindness towards the people who help me on a regular basis. Other efforts will be acts of kindness for the community and the world in which I live as part of an effort to show people that kindness matters and that it has a ripple effect that can spread in big and small ways to make our world a better place.
What separates my kindness birthday challenge from similar attempts by others to do so is that I can't do this on my own. So family and friends have graciously offered to assist me in making my dream a reality.
You see, I have an extremely rare medical condition called fibrodysplasia ossificans progressiva, or FOP for short. FOP causes bone to form in my muscles, joints, tendons and other connective tissue, progressively and significantly restricting movement. In a sense, my body has an extra skeleton of bone that imprisons my body. One of the only things I can do independently is use the computer. I also spend most of my time at home because of endurance issues, going out only when I need to do something or when there is something that I really want to do. Don't worry about me though—those closest to me know I nearly always find things to occupy my time.
If you are reading this and believe in the importance of kindness, I hope you will consider doing some of the things on my list.
P.S. It doesn’t matter to me if you do one act of kindness or all 50. The point of this is that the world becomes a kinder place when we work together to make it happen.
Hello. My name is Sharon Kantanie. I'm 52 years old. I have an extremely rare disease called fibrodysplasia ossificans progressiva. I believe in courage, kindness, and other things. Welcome to my little home on the world wide web where I hope to share information on the Kindness Matters Challenge, my life, and the things that matter most to me.