Making Memories

“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.

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A Few Truths About Living With Chronic Illness

truthA 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!

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Canyons, Bridges, And Waves

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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
John R. StilgoeOutside Lies Magic: Regaining History and Awareness in Everyday Places

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.)

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I Thank My Rheumatoid Arthritis For…

SunsetI thank my rheumatoid arthritis for allowing me to realize that learning how to ask for help doesn’t make me weak; it makes me strong. I thank my RA for showing me that life goes on, no matter what obstacles appear in my path. I thank my RA for reminding me, on a continual basis, about the importance of eating healthy foods. I thank my RA for teaching me that, in the end, having a “career” matters very little. I thank my RA for allowing me to accept that if I can’t do something today, I am not a failure…I will just try again tomorrow. I thank my RA for providing me the opportunities to experience the beauties of rebounding from the lowest lows, and in appreciating life for everything it is (and isn’t), especially after previously having wanted to “end it all” on more than one occasion. I thank my RA for allowing me to meet so many other inspiring individual–both in person and online–who understand the importance of always looking for the silver lining no matter what happens. I thank my RA for encouraging me to continue moving, even (especially!) on those days when doing so seems like the most impossible of tasks. I thank my RA for showing me just how much warmth can be gained by sitting in the sun for a few short minutes. I thank my RA for giving me the opportunity to learn how to work through negative emotions in a way that doesn’t hurt myself or others. I thank my RA for showing me that one of the most beautiful things about support is that is often comes from where we least expect it. I thank my RA (and it’s associated reduced income and costly regular medical expenses) for encouraging me to appreciate the joys of having a non-consumerist based lifestyle; double thanks for making me more frugal than I ever thought possible. I thank my RA for teaching me that while I may not be in control of what happens to my body, I can always be in control of what is going on in my mind. I thank my RA for demonstrating that quite often the biggest steps backwards are actually huge steps forward. I thank my RA for teaching me the beauty of physical, emotional, and mental stillness. I thank my RA for showing me that stress has no place in my life. I thank my RA for allowing me to realize that prioritizing my well-being above all else is not an act of selfishness; it’s an act of survival. I thank RA for constantly reminding me that I should take nothing for granted. I thank my RA for never letting me forget that laughter is indeed the best medicine. I thank my RA for showing me the importance of focusing not on the past and not on the future, but on the present. I thank my RA for teaching me that a smile is one of the most precious gifts that a person can give or receive.

I thank my RA for allowing me to become the person I currently am.

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

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Visual Journal: My Story

Over the past few months, I’ve grown increasingly frustrated. Using a keyboard and mouse has become quite a challenge on most days, due to the chronic pain and inflammation in my hands.

I’ve always considered myself to be a designer and not a writer, though…so I recently took out some of my tools that I haven’t used in ages (cutting pad, metal straight edge, blade cutter, and glue sticks). I put my printer to work, and started to cut and paste away.

I quickly found that there was something extremely therapeutic about creating a visual journal, both in being able to perform actions that I thought were no longer possible with my hands, and in finding a way to communicate without words.

This is my story, as told by images that make my soul smile.

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

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