I’ve noticed an interesting connection between Fibrodysplasia Ossificans Progressiva and butterflies. It’s not a scientific connection, but more of an emotional/cultural affiliation.
The first time I saw the butterfly theme associated with FOP was shortly after Miranda’s diagnosis. I Googled “International FOP Association”, and up popped the IFOPA’s website with a beautiful artistic rendition of a butterfly on the opening screen. The picture had been painted by Jack Sholund, an artist with FOP. That picture is no longer found on the IFOPA’s website, but a different (and equally delicate and graceful) butterfly adorns the cover of the IFOPA’s current and previous versions of the “Guidebook for Families” (ed. Sharon Kantanie). Inside the Guidebook, Mr. Sholund’s comments from 1995 are indicated as follows:
“The painting on the cover of this book is called ‘The Circle of Life’. I had a number of reasons for picking this title for my butterfly painting. The butterfly to me is a symbol of hope and new beginnings. It is a subject that everyone can relate to, and everyone has seen a butterfly. Showing the cycle of the monarch butterfly tells of the changes in life which also occur with FOP.
I picked the detailed work of a butterfly in watercolor to show what can be done after my adapting to FOP. I was a right handed painter until two years ago when my right elbow locked, forcing me to now do most of my painting with my left hand. This painting was the first time I had painted an open-winged monarch butterfly using my left hand. I consider this one of the more difficult butterflies to paint. Through my artwork, I also want to show with my painting that people with FOP can have productive lives. It’s important to have a special interest such as painting is to me.”
The next time I saw butterflies associated with FOP was soon after the FOP diagnosis of Erin Kate McCloskey of Seattle, USA. In very short order after Erin’s diagnosis at age 2, her parents Suzanne and Alan created the “Cure Erin Kate” website, which was the predecessor to the site they later asked me to collaborate on, the current “Friends With FOP” site where this blog appears. I don’t think Suzanne and Alan knew at the time about the affiliation of FOP with butterflies, but nevertheless, they happened to pick a butterfly theme for the website. I recall thinking it was an interesting coincidence.
Fast forward now to the summer of 2009, when I went to an FOP Mothers’ Retreat in New Jersey. At that retreat, one of the experienced FOP moms (ie, not moms with FOP but rather moms of kids with FOP) told us that in her family, they use the term “cocooning” when discussing part of the FOP process.
For anyone not intimately familiar with FOP, I will explain that when a person with FOP has a traumatic event, such as a fall on a hard surface or other sort of impact to the body, FOP often doesn’t immediately rear it’s ugly head. Rather, what frequently happens is that several days go by during which all appears to be well, and then suddenly one day a painful swelling appears, and the ossification process begins. Or, perhaps FOP does NOT flare-up, but you don’t know if it will or it won’t until you’ve waited a chunk of days (there is dispute in the FOP community about how long until you’re considered “safe”, but in my experience with Miranda, it’s been about 10 days maximum).
Anyway, when the experienced FOP mom I mentioned above talked about cocooning, she explained that when her child has had a trauma, she watches carefully until she knows whether or not FOP will appear. While she’s watching and waiting, it’s like being emotionally separated, or “cocooned”, from the world. In her family, each member knows what she’s speaking of when she says she’s cocooning.
Here’s another thought that I’ve personally had about FOP and butterflies. I’ve come to associate those two things in my mind because, when the day comes that progression of FOP can be stopped with a medication, people with FOP will have the opportunity to metamorphose like butterflies do (I guess Jack Sholund did hint at this as well). Imagine you have FOP, and have the chance for surgery to unlock a particular joint. You may not have been able to use that joint for years, but with surgery to remove FOP bone, you are given a second chance to use your limb or jaw as nature had intended before FOP interfered. I picture the process of re-gaining the ability to use a joint as being akin to a brand-new butterfly spreading its wings and flying away…
And finally – in our own personal lives with FOP, Miranda has a number of butterfly themed clothes! Okay, in fairness, you do see a lot of little girls’ clothes with butterflies on them. However, it does seem to me (purely anecdotally) that a number of the stretchy T-shirts I’ve sought for Miranda have turned out to be butterfly themed, moreso maybe than on clothes I can’t buy for her because of her arm limitations (see my previous blog on clothing restrictions and FOP… oy). Of course, on reflection, probably I unconsciously filter in favour of those butterfly clothes. But still.
In this photo, Miranda has colourful butterflies sprinkled all over her T-shirt. (Incidentally, this picture was taken in a museum, and Miranda is posed next to a skeleton of an Ankylosaurus, a dinosaur reknowned for having big plates and lumps of bone all over its body! Another animal with an FOP connection…)
