We’re excited to introduce you to the always interesting and insightful Kerry Wong. We hope you’ll enjoy our conversation with Kerry below.
Alright, Kerry thanks for taking the time to share your stories and insights with us today. We’d love to hear about a project that you’ve worked on that’s meant a lot to you.
That’s got to be one that I’m working on now – it’s called Kaleidoscope, and it’s a collection of rare disease stories told by the people who live them. In a way, the origin goes back over a decade. I was dealing with a number of (then undiagnosed) health issues, and getting multidisciplinary treatment weekly. One day, I was talking with another patient at the treatment center, offering my advice for a problem she was having, and I’ll never forget what she said next.
“Kerry, you have such a strong survivor spirit. You have been through so much, but it seems like no matter what happens to you, you always come out strong, and with another story to tell.”
Soon, our physical therapist joined in, and we joked that we probably had enough stories to write a book – and then talked about what the book would be. Strength, overcoming obstacles, perseverance, survival … we had gone through so much ourselves, and seen so much more through our varied life paths … and those paths brought us all together. If we could lift each other’s spirits, if we could help each other, if we could inspire each other to keep going when things got rough, then why not really do it?
Though it was more of a joke to them, that conversation lit a fire in me. That night, I created a blog for exactly that purpose. Over the years, as my health conditions took over more and more of my life, they naturally became a greater focus in the blog. In 2021, I was approached to create a twice-monthly column for Sarcoidosis News, and I cherish the opportunity to share my experience with a larger audience and offer comfort to more people who are struggling.
In 2022, I was invited to write an entry in Keeping it Real With Arthritis, a collection of stories written by and for people with all forms of arthritis from around the world. This was not only an exciting prospect, but an incredibly moving experience. From the catharsis of writing my story to the satisfaction of helping others, I was in my element. Reading the other stories had me laughing, crying, and nodding in agreement. I felt seen, and I was not alone.
I realized that was something that was missing in the rare disease space, but something that was truly needed. And thus, Kaleidoscope: Rare Disease Stories was born. I’m currently collecting stories from people living with rare diseases, and the finished book will be available on Rare Disease Day, February 29, 2024.
Great, appreciate you sharing that with us. Before we ask you to share more of your insights, can you take a moment to introduce yourself and how you got to where you are today to our readers.
I usually describe myself as “just a happy hippie trying to do some good in the world, living with a bunch of chronic illnesses that only think they can stop me.” I grew up volunteering with my mom and Gram, so helping others has always been at the core of who I am. Over the years, it’s just taken different forms.
What feels like a lifetime ago, someone in a weight loss group I’d joined shared how she related to the life cycle of a butterfly: she once felt like an ugly caterpillar, but our journey – which was more than just physical – made her feel beautiful inside and out, like a butterfly. I decided that day that I wanted to be a butterfly, too … and then a New York accent made that butt-ah-fly.
In late 2010, I started a blog, called “Float Like a Buttahfly.” My goal was to share stories that would lift people’s spirits and inspire them to keep going when times get tough. As my health issues progressed, my blog naturally reflected that, and my focus shifted a bit. Now, instead of only supporting those who were struggling like I was, I also wanted to help educate those around us – the people who want to be there for us but don’t understand how.
When my symptoms progressed to the point that I could no longer work, I began to get involved with a number of patient organizations. I learned about patient advocacy and how empowering it can be to use our voices (or typing fingers) when our bodies seem to be failing us. Even greater for me has been helping others discover their own inner strength.
While I remain active with several patient organizations, I have been doing more under the banner of “Float Like a Buttahfly.” I advocate on national and local levels and help others to do the same. I have created and assisted with many awareness events (both in-person and virtual). I share information and my own experience as a co-host on the AiArthritis Voices 360 Talk Show (podcast) and a columnist for the Sarcoidosis News website, as well as through my own website and social media. My latest passion project is a book I’m working on, a “Kaleidoscope” of rare disease stories.
And I always invite others to float with me … like a buttahfly.
What do you think is the goal or mission that drives your creative journey?
It’s two-fold, really.
First and most importantly, I want to help people who are struggling (whether through a similar chronic illness or any aspect of life) to know that they are not alone and that there are resources available to help them get through it. Most often, the greatest resource is other people who have been through it themselves – they are the experts who can offer both practical advice and empathetic support.
The other part of my goal, which ultimately feeds the former, is to educate the people around those of us who are struggling. There are so many people who love and care for us and feel helpless when they see us suffer and don’t know what to do. That lack of understanding, through no fault of their own, can impact our relationships and our self-esteem. But when they learn about our diseases and how best to support us, it changes everything. It shows us how much they care, and helps them feel that they really can make a difference for us. Win-win.
How’d you build such a strong reputation within your market?
Honestly, I think it’s just about being genuinely me – sharing my life, my experience, my thoughts, and my advice. I know what I’ve struggled with due to my chronic illnesses, and how I’ve had to adapt my life to meet my body’s changing needs. So I try to offer what I needed most – to feel seen, understood, and cared for. Most of all, to know that I’m not alone.
Before I got sick, I learned so much from the training and experiences I had as a teacher, event coordinator, program counselor, and volunteer. Since then, I’ve attended numerous patient conferences and been active with several patient organizations. Along the way, I’ve had to deal with symptoms, side effects, doctors, insurance, inaccessibility, and people who saw my illnesses only as an inconvenience for them. And I won’t lie – I’ve gained a lot from ten years in therapy, too.
So I’m usually able to tailor my message to the individual, to meet people where they are, and go from there. I can put myself in their shoes – most often, because I’ve been there before – and help them find ways to keep going. I accept them and assure them that they matter just as they are, which is often not what they are used to hearing.
People generally see me as a cheerful, positive, optimistic person. But I’m also honest. While I most often choose to focus on the positives in life, I’m just as real about the struggles. That’s the kind of thing that always meant the most to me, so that’s what I want to show others. If I struggle, and then get through it, it can give people hope that they, too, can get through their own challenges. And together, we can get through anything.
Contact Info:
- Website: bit.ly/floatlikeabuttahfly
- Instagram: instagram.com/buttahflyk
- Facebook: facebook.com/floatlikeabuttahfly
- Linkedin: linkedin.com/in/buttahflyk
- Twitter: twitter.com/buttahflyk
- Other: Kaleidoscope Rare Disease Stories bit.ly/kaleidoscoperare
- Facebook & Instagram: @kaleidoscoperare
- Twitter: @kaleidoscoperar