When the wanting is not enough: Living with FOP-Part 2

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.