“We do not remember days, we remember moments.” –Cesare Pavese
One thing that has helped me greatly when it comes to coping with the pain and disability of living with rheumatoid arthritis has been the notion of making memories. It used to be that I would start off each day with an immediate classification of what that day was going to be like; it was either going to be a “good day” or it was going to be a “bad day.” After a few years, I realized that this may not be the best approach to use when living with chronic illness. So one day it hit me–each and every day is a wonderful opportunity to make new memories, memories that I can return to whether I’m having a challenging day and am spending the day in bed, or am out an about, walking and breathing in fresh mountain air.
A little over a month ago, I boarded a flight to Boston to not only make new memories, but to also relive past memories. (In the late 1990′s I lived in neighboring Cambridge for four years, while I was in graduate school.) The reason for this trip: to participate in the Joint Decisions Empowerment Summit which was being hosted by Janssen Biotech, Inc. and CreakyJoints.
Some of the memories that I made during this visit included:
Being able to meet others who live with rheumatoid arthritis and who share their stories online was one of the highlights of this summit. I have known many of these inspirational people online for years, and to finally be able to sit down and talk face to face was a wonderful experience. Bloggers in attendance included Carla from Carla’s Corner, Angela from Inflamed: Living with Rheumatoid Arthritis, Amanda from All Flared Up, Cathy from The Life and Adventures of Catepoo, Wren from RheumaBlog, Dina from The Titanium Triathlete, Leslie from Getting Closer to Myself, Mariah from From This Point. Forward, Rachelle from Spoonless Mama, and Brittany from The Hurt Blogger.
One morning I stepped outside in the dark pre-dawn stillness, and walked along the Charles River from Boston to Cambridge. It was a brisk autumn day, and the sun started to rise just as I was strolling through Harvard Yard. Many years ago–before rheumatoid arthritis entered my life–I was a student at Harvard’s Graduate School of Design. As I walked around my former neighborhood, I had a chance to reflect not only on who I was back then, but also on who I am at the moment. Though I ensure that my illness does not become my primary identity, I do accept the fact that is is an integral part of my life…and after many years of wishing that the exact opposite were true, I have come to truly appreciate the lessons that I have learned while living with an autoimmune disease.
Each participant was asked to bring something to the summit that represented him or her. One afternoon, we all sat down to share stories (and tears, and laughs). Listening to everyone’s stories of overcoming the challenges of living with rheumatoid arthritis, and seeing the collection of personal objects slowly grow on a table in the middle of our circle, was a moment that I will hold with me forever. This experience reminded me of the importance of making *all* of our stories heard, whether or not we are bloggers. The more that we make our individual and communal voices known, the more people will continue to understand the realities of living with chronic pain and illness.
Laughter & Smiles
I am a strong believer in the fact that no matter what might be happening in our lives at any given moment, there is not better time to laugh and smile than *right now*. Yes, I am human, and I know that tears and sadness do have their time and their place…but they are definitely not something that I want to experience day in, and day out. Quite frequently, we read about the benefits of smiling. During my travels to and from this summit (including a missed connection in Miami and unexpected day-long layover, and my subsequent travels to New York City for Thanksgiving holidays less than 24 hours after returning home to South America), I had many opportunities where I could have let the stress and discomfort of airports, travel, and other travelers settle in. I decided to instead smile, for “no reason at all,” and was surprised to notice that the tension does indeed quickly melt away. We may not be able to always choose our circumstances, but we choose how we decide to react. The way I see it, I have cried enough…now, it’s time for me to smile!
My sincere thanks go out to everyone from the CreakyJoint, Janssen Biotech, and Tonic Life Communication teams for allowing me return home from the Joint Decisions Empowerment Summit with a new collection of wonderful memories.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Disclosure: Janssen Biotech paid for my travel expenses for the summit. All thoughts and opinions expressed here are my own.