Live Bold Live Now is a new storytelling project from HealthCentral, profiling people living with a chronic illness. One of the inaugural editions tells the story of a life lived with rheumatoid arthritis.
More specifically, my life with RA.
This story covers my first experience with symptoms of juvenile arthritis at age 4 and the battle to get a diagnosis. It tells the story of my childhood with this disease and the struggle with flares, my lost mobility, the many years in hospitals and the moment I got my first power wheelchair. I talk about what happened after I left the hospital and set about creating a life. Later, we dealt about the big flare I had in 2004 and how it brought me close to suicide. We also talked about joy. The joy of finally finding a medication that worked, rebuilding my life and writing a book. My mother shares what it was like to be the parent of a child with a severe chronic illness. My sister also shares her view of what has happened to me. Listening to these two people who I love so much tell their stories was one of the most meaningful parts of this project for me. You’ll also hear my partner and I talk about how we met and fell in love.
Being chosen to be the subject of the Live Bold Live Now RA story was exciting and also nerve-racking. As a writer, I’m used to being safely located behind a keyboard. As a photographer, I’m used to being behind the camera. This time, there was no safe distance. Instead there was me in front of several cameras spending two days with a 10-person film crew.
Being in the middle of a film shoot was absolutely fascinating. I learned a lot about the nature of filming and what it’s like to be the center of that much attention. I learned that you get used to the cameras faster than you’d imagine possible. I now understand why reality show contestants often do very private things on camera. It’s because the crews are highly skilled at becoming part of the landscape. I also learned that having a makeup artist regularly swoop in to touch up your face also very quickly becomes normal. Strangely enough, it’s also true that sound guys can have their hands under your shirt attaching a microphone to your bra without it being weird, despite you having just met them (seriously!).
Live Bold Live Now is the perfect title for these stories. All three of the people profiled — myself, Rob Hill (Crohn’s) and Laura Deanovic (psoriasis) have been through extremely challenging times and have found a way to create a joyful and meaningful life. What we have in common is getting through a life altering experience with chronic illness and throwing ourselves heart first into living.
This is a different kind of storytelling than we’re used to on the Internet. It uses a combination of video, still photography and audio to tell a story. It’s also longer than your average video and is best experienced with the beverage of your choice and being ready to settle in for 20 minutes or so.
I hope you’ll come visit virtually with me in Toronto to watch the story of my life with RA. I look forward to hearing your story.
Lene writes the award-winning blog The Seated View. She’s the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.