Canyons, Bridges, And Waves

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.)

1 Comment

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!

12 Comments

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.

MyStory01

MyStory02

MyStory03

MyStory04

MyStory05

MyStory06

MyStory07

MyStory08

MyStory09

MyStory10

MyStory11

MyStory12

MyStory13

MyStory14

MyStory15

MyStory16

MyStory17

MyStory18

MyStory19

MyStory20

MyStory21

MyStory22

MyStory23

MyStory24

MyStory25

MyStory26

MyStory27

MyStory28

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

4 Comments

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!

8 Comments

My Decision To Not Use Medicines Right Now Is All About Personal Responsibility

DancersYears ago, the chronic eczema in my legs flared up. By this point, I knew the routine: schedule an appointment with my dermatologist, stop taking warm/hot baths, and start slathering the thick prescription eczema cream on my legs twice a day. This time around, however, the doctor threw in one more thing–a one month prescription of anti-allergy pills. Within 30 seconds of taking the first capsule, I immediately broke out in huge hives. This was the first time I had ever had such a pronounced allergic reaction to a  medication, and it was a very unpleasant–and scary–experience. I called the doctor, to let him that I was allergic to the pills and could not continue to take them as he had prescribed. “You can’t be allergic to these pills!” he almost shouted, “…they are anti-allergy pills! Continue taking the pills, and we will discuss during your follow-up visit.”

By the time I hung up the phone, I knew that there would be no follow-up visit.

Many of my readers know that at the moment, I am not using medicines to treat my rheumatoid arthritis. The reasons are numerous; the most important one being that I’ve cycled through all of the DMARDS (and various combinations thereof) multiple times, and they are no longer effective. In fact, I’ve reached a point where they actually seem to make things worse. All of the recent headlines about the effectiveness of triple DMARD therapy make me shudder…I can barely handle one, much less two, and now the general consensus that seems to be forming is that I’m supposed to take three?! Why not try some of the many newer biological treatments, you might be asking. Well, the reality is that for many people, including myself, such medicines are not affordable. (My entire extended stay in New York City earlier this year was all about–as an unemployed and uninsured U.S. citizen–trying to gain access to such meds, but we now know how horribly off the rails that adventure went. As I mentioned in a Facebook post earlier this week, even my financial assistance application that I submitted to Pfizer was denied for–get this–not providing proof of valid income!)

Despite all of the above (and despite the fact that every member of my health care team agrees that *not* using pharmaceutical medicines is the right choice for me right now), I continue to receive a slew of message that all have the same theme: how can I be so irresponsible? Some people seem almost frightened of my story, and tell me that I should stop talking about my current non-use of meds because I am encouraging other to be irresponsible, too. Others go so far as to almost cast a curse on me: any joint damage and disease progression that I experience in the future will be totally my fault, and that when I reach that point they will be sure to remind me that I am the only person to blame. (Just lovely, don’t you think?) And then there is the icing on the cake: could I please not be so anti-med? (I mean, come on, do these people even read what I write?!)

The truth is, I am not anti-med. I know that many people who live with rheumatoid arthritis are helped by such medications. (Heck, some of them helped me greatly in the past.) But I also know that for many people, these same medicines provide only temporary (to no) relief. I also know–firsthand–that for some people, these same medicines and their serious side effects can actually have a negative effect on a person’s health. We are all individuals and we are all different; where we end up on this spectrum of possible reactions to different medications is as unique as every other aspect of our personal selves.

Rarely a day goes by that I don’t see some blow-up on one social media site or another, over the “right way” of treating RA versus the “wrong way” of treating RA…and this saddens me. It saddens me because I think, it this really the best use of our time and energy? Don’t we all have the same goal, which is to find what works best for each one of us? Are we not all aware that what works for one person will often be completely different from what works for another person?

I receive messages all the time from people who tell me that they would *never* use the same treatment options that I use, but that they are happy that what I am doing is working for me…and I love love love these messages, because they remind me that, indeed, we are all in this together. They remind me that what is less important is for all of us to follow the same path, and that what is more important is for all of us to encourage and support one another on our beautiful and very different, hopeful and optimistic journeys.

Maureen, a reader of this blog, said it best with these words that she wrote earlier this year:

RA Guy writes a blog which is rare; instead of simply complaining, he provides an outlet for his emotions (and, therefore, his audience’s emotions).  Instead of rallying for/against treatment methods, he outlines his own experience.  Instead of silently bemoaning the way RA affects life, he provides a thoughtful and sometimes amusing perspective.  Instead of whining, he provides an intellectual approach to the challenges presented by a degenerative disease.  Instead of simply disengaging from the processes of treatment which have not helped him, he consistently (and publicly) searches for new alternatives.

To all of the people who continue to send me messages about how irresponsible I am for choosing my own treatment options, and who continue to predict untold doom and gloom in my future, I ask you kindly: please stop. Rheumatoid Arthritis Guy–the website, the Facebook page, and my personal email inbox–is not the place to attack other people’s personal treatment choices.

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

 

 

14 Comments