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
Hello. My name is Sharon Kantanie. I'm 51 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.