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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Freefall

balloonsAs much as I would like to think that I am prepared for every downturn that living with rheumatoid arthritis might have in store for me, the truth is: I’m not. And even though I knew that the winter conditions of the last two days were having a profound effect on my decreased mobility and increased pain levels, I still wasn’t prepared for the sudden tailspin (physical and emotional) that I entered into right around midday yesterday.

(Yes, we are moving towards summer down here in the southern hemisphere…but it’s also the start of the annual rainy season up here on top of the Andes Mountains, so when you combine wet and cold conditions with the extremely high altitude at which I live, summer ends up becoming, well, just another winter!)

One minute I thought I was just fine; the next minute I had no clue what was going on. I laid there, wondering to myself: what exactly is a person supposed to “grab on” to, when it feels like there is nothing to grab on to. Even though a more objective response to that question would show that there is indeed a lot to grab on to, the fact that my body just went from moving ‘normally’ to not being able to move at all–all in a matter of just a few short minutes–is enough (I hope) to explain why I might not necessarily be using the most logical thinking (to say the least) during such a crisis moment.

Less than a week ago, I had already started my bi-annual psych out–the mental pep-rally that I go through at the start of each (actual) winter and (summer) winter, when I start telling myself that even though I am in store for quite a ride during the next few months, everything will will be okay–all I have to do is hold on tight. Really tight!

But then my freefall started, and it felt like there was nothing to hold on to. I couldn’t even muster the strength to respond to my husband’s questions of concern: what did I need? We both knew that I was in for a big one, and that the only answer was for me to ride through it, best I could. It is during such moments, I think, when I realize that even the person sitting on the bed next to me can’t really do anything to make me feel better, when things become *really* scary. It’s like you know you have help, but you also know that you’re on your own.

As I experienced an agony unlike anything I had ever felt before (my entire spinal column was, for the first time ever, completely inflamed…and even though I was in a position that was not helping my back pain, I was not able to move into a different position) I started to tell myself that if there was nothing to grab on to, all I had to do was float…even if I was floating in some of the worst pain I’ve ever experienced.

Better yet, I told myself, why not fly? I’ve never shared as much, but whenever I lose complete use of my body and limbs, when I am unable to even change the music that is being piped into my earphones, I often start to fly, up in my head. I visualize myself floating through the clouds with a huge smile on my face, and I feel great, even though a little corner of my mind still knows that at the exact moment, my body is indeed experiencing the unimaginable.

Tears started to flow, as I remembered that just five days ago, I flew for real. When I floated through the sky while hanging from a paraglider this past Friday, I remember telling myself: next time you are unable to move your body, this is the place, this is the memory, that you need to come back to.

And just like that, everything started to make sense. I knew what was going on. I knew I was going to be okay. I continued to fly in my head for a little longer than I might have wished, but eventually, I came in for a safe landing.

(Thanks to everyone who supported me when I reached out for help yesterday–you all know who you are!)

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

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