Humour (or, “humor”, for Americans, LOL)

Posted by Karen - August 24th, 2014

Posted by Karen

Life with fibrodysplasia ossificans progressiva can be very difficult. My blog posts from the past couple of weeks testify as to that. But despite how tough it can be – or maybe even because of it? – some people with FOP manage to have a great sense of humour about their condition.

Skeleton of Harry Eastlack, a man who had FOP.

Iconic FOP skeleton of Harry Eastlack, or “Uncle Harry” as people with FOP sometimes call him, ha ha.

I’m all for it. “Laughter is the best medicine”, so we are told. If you can laugh, you’ve got something precious. Also, you’re probably doing yourself a world of good. Scientists credit laughter with everything from lowering blood pressure to relieving stress to boosting the immune system to strengthening the heart and lungs. And if you can laugh at yourself, well all the better…

Laughter drug

With this in mind, I bring you tales about having fun while living with FOP.

I begin with a story about my friend Nick Mahler. Nick is an adult who has FOP, and one of his FOP restrictions is that his jaw is fused shut. Now, as it happens, Nick attends for dental care with a dentist who teaches dental students, and sometimes those students are required to examine certain patients. When it’s Nick’s turn to be examined, he and his dentist agree to tell the students absolutely nothing about FOP – they just wait to see what happens. According to Nick and his wife Lori, the most frequent occurrence is that a student steps up and confidently says, “Well now Mr. Mahler, let’s get a look at your teeth. Open your mouth.” Well, Nick can open up his lips and show his closed teeth, but that’s about as far as it goes. So, when the students stand there looking confused about what’s going on, the dentist makes a bit of a show of shaking his head in an irritated manner, and saying, “Read the chart people, read the chart!” Meanwhile, Nick’s laughing his butt off. Awesome, good lesson for those students. ;)

Another good story concerns another of my friends, TC, a woman with FOP. It came to pass that recently, T was in hospital for a few days. Her doctors decided they needed some x-rays of her lungs, so that had a portable x-ray machine brought into her room to do the job. Now, keep in mind that T’s arms are locked in L shapes and cross in front of her. So when the technician asked her to put her arms at her sides, there wasn’t much she could do, and T explained this. Apparently the technician wasn’t listening, and told T she’d need to do better. T’s exasperated response? “Hey, sure. You got a hacksaw? We can start at my elbows, because that’s what it’s going to take.” Holy smokes, I would have LOVE to see this technician’s face…

Possibly my favourite story of finding humour in FOP concerns the late Tiffany Linker. Tiffany was a young woman with FOP who, unfortunately, had to rely on supplemental oxygen during her daily life (most people with FOP do not, so Tiffany’s was a somewhat extreme case). Apparently Tiffany was fond of meeting a new person, or someone she hadn’t seen in a while, and then telling the person quite gravely after a few minutes that they were standing on her oxygen supply hose (of course the person was not). This would inevitably cause the newcomer to jump up in horror, and spin around madly trying to get off the fictional hose, causing Tiffany no end of glee… Gah, this is classic!

Finally, a couple of bits and pieces to round things off. First, I know of a man with FOP whose nickname and internet handle is “Stiffman” (ha ha ha ha). Second, I heard recently about a man with FOP who, when asked what is wrong with him, says that he took too much Viagra and this was the result. Ohmigod, just too funny.

Stuff like this is another of the many reasons why I so value and appreciate people in the FOP community. ;-)

Asterix and Obelix

Got a good FOP story to share? Post it in the comments. Thanks!


One Response to “Humour (or, “humor”, for Americans, LOL)”

  1. Saskia says:

    Our son Yorick really LOVES to drink milk. So every time we go to a restaurant and the waiter askes him what he would like to drink, his answer always will be “Milk!”
    Frequently waiters will react with a respond like “That’s wonderful that you like milk so much. You know that milk is very good for your bones? You will have very strong bones!”
    We still think it’s funny. Yes he will have strong bones, and no it’s not because of the milk.

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