Float With Me: An Introduction to ‘Float Like a Buttahfly,’ a New Column

[Joachim]

About 20 years ago I joined a program to lose weight, and ended up gaining not only a healthier body but also a much healthier mindset. Along the way, I fully embraced the idea of transformation, and after an emotional and symbolic speech from another program member, I decided I wanted to become a butterfly: to feel beautiful, inside and out, just like she did. And that’s exactly what I did, though it became buttahfly in honor of my New York accent.

Kerry showing off her buttahfly wings, 2009. (Courtesy of Kerry Wong)

When chronic illness — which was undiagnosed/misdiagnosed for years before we discovered it was sarcoidosis — consumed my life and my body, I began to feel like I couldn’t call myself a buttahfly anymore. I wasn’t vibrant and healthy, I’d become disabled, and I’d gained even more weight than I’d lost those years ago — thanks, steroids.

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But the thing about the transformation in the cocoon is that it’s not easy; it takes a great deal of struggle to get through those changes. And if there’s anyone who knows about struggle and changing bodies, it’s sarcoidosis warriors like us. It may feel like we’re working backward, with the struggle leading us back to caterpillar life: slowly crawling, barely able to get up off the ground (or the couch). But it doesn’t have to be that way. We get to define what a butterfly means for us. And we get to make it happen.

“How does one become a butterfly?’
‘You must want to fly so much that you are willing to give up being a caterpillar.'”
~ Trina Paulus, “Hope for the Flowers”

Sarcoidosis, along with many comorbidities, affects my lungs, skin, joints, and nerves and gives me systemic symptoms like debilitating fatigue, sweats, chills, and more. Even with all the progress I’ve made through a combination of treatments, I’m still in pain every day. I still get short of breath too easily. I still have overwhelming fits of sweating or fatigue. I can walk around my apartment well enough but I rely on a cane when I go out. I use a scooter for longer days, like when I’m advocating on Capitol Hill.

That’s right, advocating on Capitol Hill, plus at my state capitol and more locally. That’s something I never thought I’d be interested in, let alone something I’d do regularly while leading the delegation in my state. I’ve also done live and web-based speaking engagements across the country to share my experience with this disease. As my body became less and less able, I realized that my mouth (and my typing fingers) still works, and seeing that I can make a real difference has been incredibly empowering.

Kerry sharing her story during Sarcoidosis Awareness Month, 2018. (Courtesy of Kerry Wong)

In political advocacy, I share my story to gain my elected officials’ support on health-focused legislation. On social media, I share it so that others with similar experiences know that they are not alone and so those who care about us can get a better understanding of what we’re going through. I volunteer with several illness-based nonprofit organizations and even started my own with three others in my sarcoidosis family.

And that’s probably the best thing that’s come out of these illnesses: When I meet others (in person or online) with sarcoidosis, there is an instant bond, an instant connection. Whether at a sarcoidosis event, in a Facebook group, or through a Twitter chat, we know there’s someone else who gets it, who knows what we’re going through. We become so close, so quickly … we become family.

And that, to me, is a new way to define buttahfly. It’s not about being physically healthy and strong; it’s about connecting with others, being there for each other (even from thousands of miles away), helping each other through the challenges of life with sarcoidosis.

Living with a rare and poorly understood disease like sarcoidosis can be incredibly isolating, but it doesn’t have to be. We’re not lonely caterpillars anymore. When we share our stories or even read other people’s stories, when we get involved, when we support each other, when we connect … that is beautiful inside and out. That is when we can soar.

That is why I am so excited about this column: I am eager to connect with you. So, I am asking you now to give up being a caterpillar, and float with me — like a buttahfly.

***

Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.

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