Rediscovering (My Soul)

RediscoveringI’ve always been fascinated with learning–and living in–cultures other than my own. This has less to do with any lack of appreciation of my own culture, and has more to do with wanting to go out and explore; with wanting to go out to see–and experience–the world with my very own eyes.

When I was fifteen years old, back before the arrival of the Internet when even domestic long distance telephone calls were exorbitantly priced, I took off to live in Northern Italy as an exchange student for close to a year. Other than a few phone calls on special occasions, such as Christmas, New Year’s Day, or my birthday, all of my communication with family and friends was done the “old fashioned way”–through good ole’ postal mail. This level of immersion, something that I think would be difficult to achieve in this day and age of online connections, allowed me to see a completely different world not from the outside, but from the inside. Within a few months, I garnered such control of the language that I could (and did) easily pass as a native Italian.

The following ten years of my life took me to live not only in cities such as New York City, Boston, and San Francisco (quite a feat at the time for a kid from small town Texas), but they also allowed me to travel and visit many places around the world, some more foreign than others. A sampling of the highlights from this period include enjoying the midnight sun from right below the Arctic Circle in summer time Norway, being stopped at the border of the former country of Yugoslavia by officials who refused to accept my visa because their republic had just taken some of their initial steps towards independence, and getting more lost than I could ever imagine (and loving every second of it!) in Beijing.

Right around the time when the initial symptoms of rheumatoid arthritis started entering my life (although I had no clue they were as much, or even less of a clue what an autoimmune disease was), I found myself needing to take a break from my corporate job in Silicon Valley…so even though my mother shed a few tears when I announced that I was moving to South America for two years (I am now going on twelve years as of this past month!), no one–not even my mother–was really surprised to hear the news.

As many people who have visited this corner of the world know, the city of La Paz, Bolivia is breathtaking in more ways than one. Located at 3,600 meters above sea level, this is the highest major city in the world. Our local airport is even higher, at 4,000+ meters, and requires not only a runway that is twice as long as most, but also has a landing/take-off speed that is almost two times as fast as the norm. We are so high that pilots of flights originating from the U.S. are–by law–required to use oxygen masks! And as if that isn’t enough, the horizon from the canyon that is the city is dotted with tall Andean mountain peaks which are covered by snow year round.

And as many people who have been here before also know, the city–and its culture–defy any simple descriptions. Some of the people–and languages–that continue to exist date back to pre-Incan times. One of those is the Aymara culture, which is fascinating in so many ways. Not only have sociologists determined that they are the only culture that visualizes the past as being in front of them, and the future as being behind them, but their language, and its corresponding three-value non-Aristotelian logic, is not only of great interest to people who are working in the field of artificial intelligence, but was also deemed the “perfect language” by linguist Umberto Eco.

The Aymara people have a beautiful word for a person’s soul, and that word is ajayu (pronounced “aah-high-you”).

There is a belief among many that a person’s soul can easily be lost, particularly (especially) when a person is scared. It is very common, even in this day, to see elders “calling back” the soul of a young person who has been frightened. There is also the belief that should any person, young or old, lose his or her soul, the only way to get it back is to go to the very same physical location where that ajayu was lost.

A couple of months ago, my husband and I were in New York City for the Thanksgiving holidays. This visit was long overdue, especially due to the fact that our last visit there many, many years ago coincided with the biggest flareup of my still-at-the-time-undiagnosed rheumatoid arthritis, and with day after day of me being stuck in bed in the hotel room, thinking that I was battling the flu of a lifetime. Even though it happened much later than I might have originally hoped for, I was finally able to show him–firsthand–this city that meant (and still means) so much to me, back to the time when I was an architecture student at Columbia University.

One day during this recent visit, I found ourselves heading in the direction of the Upper East Side. (While I usually start a vacation with a list of things to do and places to visit, I still allow myself to discover and enjoy the beauty that can be found by meandering, by deciding which way to turn only upon reaching the next street corner.) As we continued in this general direction, I kept thinking to myself: why are we going here? And even though I sort of knew why we were heading to this part of town, I still didn’t want to fully accept that I was indeed going where I was.

And before I knew it, there is was, right in front of me: the (to remain unnamed) rheumatology care center that I traveled to a little under two years ago, when my disease was raging out of control, and when my emotions (and my entire person) continued to reach breaking point after breaking point after breaking point; the very same place where so many individuals from the inside let me down during my time of need and continued to–for some reason or another–deny the reality that was so visible to all of our eyes. I’ll never know why, but the louder I let it be known that I needed answers more quickly than ever, the more they let it be known that they weren’t really interested in helping me.

As I crossed the street, I reached the *exact* spot where my life was nearly lost but ultimately saved, when I received a phone call from my husband on that darkest of days when I decided that life was no longer worth living. I told him as much as he stood by my side, in the present day. “This is where I was when I decided I was going to end it, and this is where I was when you called me.”

I looked up at the healthcare center, and was surprised to notice that I had no feelings of anger, loss, sadness, or frustration. Everything that I was feeling at the moment was indeed a good thought, such as: I am alive, or, that I ended up being able to find the answers on my own, as difficult as the entire experience might have been.

I also thanked this place, and all of the individuals associated with it, for teaching me a lesson that I might not have been able to learn otherwise: I am, and always have been and always will be, stronger than I might imagine, and I am not going to let anything–or anyone–stop me from finding the answers that are right for me.

And in that very moment, I felt it, and I knew what this entire journey was all about.

My ajayu was back.

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

Tricking My Mind

TrickingTheMindPain has a tendency to want to mess with our minds.

It chips away at reluctant hosts with thoughts of weakness and worthlessness, and tries its darndest to make people believe that life sucks.

In it’s most ruthless state, pain creates fear. LOTS of fear. It scares individuals into stopping the things that they love doing the most. It lulls them with false promises as it whispers into their thoughts: if you stop doing the things that make you happy, the things that you love the most, I *will* go away.

Trust me.

The thing is, when pain starts talking this way, it is not to be trusted.

Throughout my more than ten years of living with rheumatoid arthritis, I fell multiple times for these false promises that the pain so often presented in an attractive light. Each time I cast aside the things that bought me joy with each new day, all in the hope that doing so might be *the* thing that would finally make the pain go away, I found myself in a place where I only hurt worse.

I found myself in a dark, scary spot that is unimaginable to many, but which–sadly enough–is all too familiar to many of us who live with chronic pain.

A couple of years ago, after years and years of trying anything/everything to make the pain go away, I decided that I would start tricking my mind.

Instead of telling myself that life sucked, I started telling myself that life was beautiful…just the way it was.

Instead of telling myself that the pain HAD to go away, I started telling myself that everything would be okay…even if (and when) the pain continued.

Instead of telling myself that I was weak, I started telling myself that I was strong.

Instead of telling myself that I was sick, I started telling myself that I was healthy.

Instead of telling myself that I could no longer do x and y, I started–immediately–figuring out just exactly how I *would* do x and y.

And instead of telling myself that feeling scared was a normal response to each new day, I started telling myself that fear had no place in my life.

When I started rewiring my thoughts–or, as I referred to it, “tricking my mind”–I couldn’t help but ask myself (and others who were close to me): am I just fooling myself? Am I just leading myself down a path of denial and unfounded optimism; won’t I just end up in another dark spot, as I have so many time before?

No, you’re not fooling yourself, they told me. You’re doing what you need to do to survive.

Having followed this new path for much of the past couple of years, I’ve discovered a place that is brighter than anything I have known before, either with our without the constant pain.

I find myself in a place where the pain–the very thing that used to hold me back–now motivates me to go out and live life to its fullest, each and every day.

And I’ve come to realize that what I was doing all along wasn’t tricking my mind.

I was tricking the pain.

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

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.

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!

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
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.)