Live Bold Live Now with RA: A Visit to My Life

  • I am thrilled to announce the launch of the Live Bold Live Now project! In it, HealthCentral profiles three people who live with three different conditions — RA, Crohn’s and psoriasis — in a beautiful rich media project. I’m extra thrilled (and more than a little abashed) to tell you that I’m the subject of the RA profile. More on that in a minute.

     


     

    Live Bold Live Now uses a new method of storytelling. Combining video, audio and still photography, rich media projects are engaging and compelling, truly making the subject come alive. Longer than the average Internet video — they are about 20 minutes long — each story is an immersive experience, taking you deep inside a life lived with chronic illness. The three profiles chronicle different conditions, but are very similar in that each of us have been on a journey that has at times veered into despair and what seemed like insurmountable obstacles. The stories also tell you how we found a path through to the other side, battling our way back to a better state of health, joy and to helping others get through life with chronic illness.

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    Ready for my Close-Up?

    It was really exciting when I was first notified that I’d been selected from the list of candidates for the RA project. Then I looked around my apartment and realized just how much needed to be done before the film crew arrived! The next few weeks were spent in a frenzy of cleaning, tidying and an extended quest for a proper bedspread. The latter ended up being the symbol of everything that needed to be done. It felt crucial at the time, but turned out to not be that important, after all.

     

    What was important was preparing to tell the story of my life with RA, the reason I had agreed to be part of this project. I hoped that hearing my experience could make others feel less alone, believe in hope and find a way to live well with RA.

     

    To prepare, I went through every photo I had — some of which appear in the story — and thought about the last forty years. We covered almost everything, from the first symptoms when I was four years old, the aggressive progression of the disease, the years in hospital and the moment when I first got my power wheelchair. We talked about the joys of life, such as my passion for photography (many of the photos used in the RA story are mine), as well as the time a severe flare brought me to thoughts of suicide. And then we spoke about the miracle of finding a medication that works and how I rebuilt my life, found love and wrote a book.

     

    One of the things that makes this project so special is that it’s not just me talking. It’s also my mother telling the story of the five-year fight for a diagnosis and my sister’s perspective on that severe flare I mentioned above. I didn’t cry when I was interviewed about these hard moments in my life, but listening to my mother and sister brought me to tears.

     


    Someone else appears in the story, as well. You’ll also meet David, the love of my life whom I found at a time when I thought I was too wrecked by RA to be desirable to anyone. Life is forever full of surprises.

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    More Information about RA

    The Live Bold Live Now project also includes a number of posts with information about RA, Crohn`s and psoriasis. When you first arrive at the page for each story, you’ll see the profile of the person living with the condition first. In the top right-hand corner, you can see arrows leading to several posts. For the RA story, these include the ABCs of RA, how Biologics treat RA, pain management, reinventing yourself with RA and exercise for all levels of the disease, a video starring the members of the RA site team!

     

    As well, the text “more on rheumatoid arthritis” is a link to the HealthCentral RA site where you can find in-depth information on RA and aspects related to living well with it. We have a great team of writers who all have RA and who will be happy to answer any questions you may have in our Q&A section. Many of our community members also write SharePosts of their own, which is a great way of sharing information and support. We look forward to seeing you on the site!

     

    But enough of the lead-in, let’s get on with the show! Settle in with a cup of coffee or a glass of wine and visit with me in Toronto. We hope you also take the time to experience the profiles of Rob Hill (Crohn’s) and Laura Deanovic (psoriasis) to get to know these truly remarkable people. Together, the three of us tell the story of surviving and thriving with chronic illness.

     

     

    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.

     

Published On: February 07, 2014