Patrick arrived on February 22, 1982.  He was perfect in every way except that his big toes were crooked and his thumbs seemed to be set a little lower than normal.

Thankfulness is a recurring theme in my life. Thankful for my “safety net” friends and family.  Thankful for the childhood I got to enjoy unencumbered by restrictive FOP lesions.  Thankful for the wonderful scientists who have dedicated their lives to researching FOP.  Thankful for the movement I still have.

Movement, in my and all other FOP sufferers’ case, is somewhat subjective.  It’s more of an ongoing narrative rather than the noun most people are familiar with and take for granted every day and, for most, throughout their lives.  My narrative so far: both shoulders fused, jaw fused, right ankle fused, right elbow fused, left elbow fused, and a minor stopover in my right hip/thigh that thankfully has not impacted motion.  As FOP methodically worked down my torso, I was thankful for things like being able to brush my hair, put contacts in, put a shirt on, scratch my nose, brush my teeth, smoke a cigarette, and drink a beer without any modifications.  I lost the ability to do everything in that list in that order over a period of 5 years.  My new list of things I’m thankful for: I am thankful that my elbows fused where they did (right elbow fused it 120° with my hand in front of my zipper and my left elbow fused it 90° with my hand in front of my stomach), the ability to walk, a creative mind, a bull-headed mentality, and a self deprecating sense of humor.  My elbows fusing at different angles means my hands are at different levels, which allows me to accomplish a much greater range of activities than I would if they both fused in the same position. For me, so far, these are the direct, tangible costs of FOP, but they are not the most impactful costs.

The most impactful costs are the indirect, intangible costs: pride, independence, ambition. And these are not so much lost as redefined. With FOP the much harder thing not only for myself to cope with but for those around me to cope with is the not knowing what tomorrow brings; there is no pattern, there is no path, there is no “this is what tomorrow brings,” there is only today and the uncertainty of tomorrow.  For instance I don’t know how much longer I’ll be able to walk.  It may be forever or it may be until tomorrow. But I’m thankful for the ability to walk  and I know that no matter what happens tomorrow that I, with the help of the FOP Community, my safety net, and our scientists, can make it a few more steps even though the path of progress on my road is uncertain.

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Date of Birth: 
Monday, 22 February, 1982
July, 1982

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