It was a routine field trip. The school bus ride, along with my friend and colleague, Amanda Ogren, was cold as we took a group of students to Minnesota for something - music or theater related, that’s all I can remember - in February of 2015. Amanda is the high school band director for Chetek-Weyerhaeuser High School. I am the communications /accounts payable for the district, as well as the drama club advisor.
As such, we share a deep admiration for music and theater - which allowed us to very quickly become fast friends when I started in the district in 2012. Our mutual admiration for the arts even led us on a trip to NYC for a Broadway marathon where we spent three days seeing five shows.
Just days prior to this field trip, at the start of February (TS Awareness Month), I’d changed my profile picture on Facebook to a photo of several Turners Syndrome Awareness Ribbons. I didn’t comment any further on it; I just changed my photo. It wasn’t long after that Amanda commented on it, noting that it was sad more people didn’t know about Turner syndrome.
This should’ve struck me as an odd comment. I’d met very, very few people who even knew what TS was. Even so, I let it go, figuring she was one of the few who knew what it was. This was despite the fact that in the couple of years we’d gotten to know each other, I’d never even mentioned I’d had TS to her. It doesn’t often come up, and while I’m not afraid to talk about it, I don’t often come out of the blue and mention it.
So, here we are on this trip, just days after the Facebook comments (which by now I’d basically forgotten about). We made a pit stop so students could take a break and get some food. Amanda and I remained on the bus. After the students had left she looked at me and said “Can I ask you a question?” “Yeah,” I said. "So, you have Turner syndrome?” “Yeah.” “When were you diagnosed?” she asked. “When I was a baby. My feet and hands were puffy and the doctors questioned right away.”
Now, I don’t remember exactly what prompted my change in thought, but seconds later I found myself stopping in my tracks. “Wait a minute.....do you have...?” “Yeah, I do too!” And that was when the flood gates opened. The funny thing is, along with our shared interests, we were also the same age. We both graduated the same year, and were both salutatorians of our high school class. Our schools were also within an hour or so of each other in Northwestern Wisconsin. Once we started working together, there were a number of times I’d been asked if she was my sister (or at least if we were related) because we both have eerily similar features. But it wasn’t until this moment that things started making sense as to HOW much we were actually alike—and why!
Of course, the conversation led to a massive question and answer session about the various medical issues we’d experienced. As we talked about things further, we also discovered we’d had the same doctor in the Twin Cities (albeit at different times in our childhood). Although we did both take growth hormones, and I did have a coarctation of the aorta repaired, we’d both been pretty lucky to have few real serious issues. Telling my folks later on that evening, I couldn’t believe the coincidences - and neither could they. Mind blown!
Since then, we’ve taken to calling each other “Twin.” We are Butterfly Twins now, with a shared bond that goes unsaid most days and a bond that most people don’t even know about. We talk each other through any issues going on. We’ve discussed private things that only girls and women with Turner syndrome understand. And like actual biological twins, sometimes a comment is made (especially when it involves musical theater) and we just look at one another and laugh, because we know exactly what the other one is thinking - or Twinking - as Amanda began calling it. It’s amazing that as unknown and rare as TS is, that in this small town in Northwestern Wisconsin, we found ourselves colleagues, friends and then butterflies. Sometimes, there are just plans bigger than ourselves!
Turner Topic Patient Guide to Lymphedema in Turner Syndrome