Making Memories

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“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:

Blogger Meetup
Blogger-MeetupBeing 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.

Harvard Sunrise
HarvardOne 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.

Story Sharing
Story-SharingEach 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
MemoriesI 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.

A few truths

A Few Truths About Living With Chronic Illness

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A few truths about living with chronic illness: many people (including certain healthcare professionals) do not understand the reality of our illnesses; few people will know how much it really hurts (*all* the time!); and some people, upon discovering that a person receives disability assistance and other benefits, will try to make said person out to be a cheat or an irresponsible moocher.

A few other truths: nothing is more important than understanding your body and your illness, no matter what others say; there are many people out there who know exactly what the chronic pain feels like (and those who live well know the importance of not making this pain the center of their lives); and those of us who live with the challenges of chronic illness, and who struggle to be able to afford access to continual healthcare on top of trying to keep up with basic living expenses, are some of the kindest, most giving, and most responsible souls that exist on this planet.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Canyons, Bridges, And Waves

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Canyons-Bridges-and-Waves

People often ask me, what do you do? Depending upon my mood, I have many different answers. I am an architect. I am a photographer. I am a teacher. I am a writer. I am a designer.

But there is one response that remains constant, no matter how I am feeling.

I am a walker.

When I was a graduate student, the one professor that taught me some of my most important lessons–both in design, and in life–was best known for encouraging his students to open their eyes; to explore the world around them.

“The whole concatenation of wild and artificial things, the natural ecosystem as modified by people over the centuries, the built environment layered over layers, the eerie mix of sounds and smells and glimpses neither natural nor crafted–all of it is free for the taking, for the taking in. Take it, take it in, take in more every weekend, every day, and quickly it becomes the theater that intrigues, relaxes, fascinates, seduces, and above all expands any mind focused on it. Outside lies utterly ordinary space open to any casual explorer willing to find the extraordinary. Outside lies unprogrammed awareness that at times becomes directed serendipity. Outside lies magic.” —John R. Stilgoe

Even when rheumatoid arthritis took away my ability to walk with my body, I continued to walk with my mind. For years, I was determined to leave my bed, and to get back out in the open.

I am now there, back out in the open…and whether I’m walking through the mountains of South America, or through the skyscrapers of New York City, I quietly smile on the inside, because I know I’m doing exactly what I was meant to do.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

(Originally posted on CreakyJoints Poet’s Corner.)