No Limits!

No LimitsAh, Superman. The epitome of masculinity, the man of strength. He is even more super than many of us could ever imagine, for one of his many comic book series is titled “No Limits!”. (I don’t know about you, but this sounds like my type of superhero.)

I wondered: is it really possible for Superman to have no limits? We’ve all heard about kryptonite, but maybe many counseling sessions with his therapist finally paid off and allowed Superman to overcome his fear of the wicked green element. (Rheumatoid Arthritis Guy might be just a little jealous, but he has a wonderful psychologist of his own. Go Team RA Guy!)

I wanted to hear what other people were thinking about superheroes and limits, so I did an internet search and landed in some comic book/superhero discussion forums and found many very heated debates on the topic. Can Superman sit on the sun? Can Superman breathe when he is in outer space? Can Superman’s skin ever get cut? The list went on and on. (Some people were apparently quite upset that such questions were even being asked – really! Note to self: just when I think my pain can’t get any worse, visit these forums again.)

Rheumatoid Arthritis Guy was recently asked how he learned his limits. I really appreciated the question (especially coming from another young guy with RA – we really do exist!), as I realized that I had never really stopped to think about this question.

I would love to say that I continually assess my situation and adapt accordingly. That I am always aware that with the pain and inflammation of rheumatoid arthritis comes fatigue, and that I need to plan my activities appropriately, otherwise I will find myself deeper in a hole. I want to say that my to-do list needs to be cut in half, and then cut in half again. And then, still, cut in half again. It would be great to communicate that I have no problems balancing the logistical and financial concerns of daily life with the emotional and physical demands of living with RA. Last but not least, I sometimes want to believe that my gender plays no role in my ability to accept certain limitations and weaknesses, both private and public.

But I would just be kidding myself.

Quite often, I learn my limits only after pushing myself too far. In extreme cases, I finally do learn my lesson and promise not to make the same mistake again. Still, I am just beginning to realize that as soon as my flare subsides and my body seems to be back to its “normal” self,  I often find myself  back in the same place – pushing myself past my limits.

So I don’t yet have a complete answer to the question of how I learn my limits, but I hope that my new awareness combined with my continued counseling sessions will allow me to continue to make the progress that is necessary in order to take care of my mind, body, and spirit. And maybe, just by bumping up against my limits a less often, they will begin to fade away.

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

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The Beauty Of Imperfection

wabisabi Wabi-sabi is the term for a Japanese world-view which is centered on the acceptance of transience and based on a beauty described as imperfect, impermanent, and incomplete. The aesthetic principles of wabi-sabi include asymmetry, a roughness and unevenness of surface, simplicity, modesty, and the suggestion of a natural process.

Rheumatoid Arthritis Guy is always interested in exploring the world of design, and was more than happy to recently stumble upon this concept of the beauty of imperfection. He also finds it interesting, the ease with which one can get caught up in the pursuit of perfection – when in reality there is no such thing as perfection.

Is it not better to achieve the possible instead of continually trying to attain what is impossible?

During the past few months it has been very difficult at times to look at my hands and feet when they are experiencing moments of extreme inflammation, resulting in their temporary disfigurement. During some of the earlier episodes I blocked the mental image so completely that it did not pop back into my mind until a day or so later. When this mental image did come back to my mind, I still had a hard time accepting that my hands and feet could indeed really look like that, even temporarily.

I don’t think I have reached full acceptance yet, but I am slowly coming to terms with the fact that any deformities caused by my rheumatoid arthritis are a thing of beauty, something that makes me unique. They are my imperfections.

A couple of days ago my yoga instructor called me to see how I was doing. She knows that I have rheumatoid arthritis, and saw firsthand my physical decline during the past few weeks when it came to my hands and feet. I had not been in class for about two weeks, so I guess she figured it was time to check in on me and see how I was doing. (I just found out today that the entire class was huddled around the phone as she called me, but unfortunately I had not yet woken up that day and ended up having to return her call later in the day.)

After bringing her up to date on the latest, I was surprised when she told me that I was more than welcome to continue going to class. She told me I could follow the routine during the parts that I was able to do, and I could make my own modifications during the parts that I was not able to do.

This morning I went back to the gym. With my crutches tucked away on the side and a folding chair set up for me to use during the standing part of the class, I returned to my yoga practice.  The synchronized nature of the room – with lined up exercise mats and people performing the routine with almost perfect timing – was definitely broken. (At moments I am sure it looked like a frat boy doing his best synchronized swimmer mock-impression.) I was originally concerned about the impact my presence might have on the environment of the yoga studio, but I later thought to myself – this is a moment of wabi-sabi, and it sure is beautiful.

After class the people who know I have rheumatoid arthritis told me it was great to see me back in class. A few people who did not know I have rheumatoid arthritis approached me to inquire on my condition. I gave them a short explanation, and they too told me that it was nice to see me back in class. One of my classmates has a mother who lives with RA, and I really appreciated the words of support that she gave me.

I had gone into the class wondering how much of the routine I was going to be able to follow, in terms of a percentage. I left with the knowledge that I got to know my body a little better this morning – and perfect or not, this is definitely not something that can be summed up in a number. And in focusing on my body instead of an ideal, I probably learned just a little bit more about the true nature of yoga practice.

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

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It’s A Rube Goldberg World

Rube Gold·berg (ro̵̅o̅b′ gōld′bərg) n. a comically involved, complicated invention, laboriously contrived to perform a simple operation.

Rheumatoid Arthritis Guy flew must have passed through a space-time continuum this past weekend, because he now finds himself in a new universe. In this world, the goal is no longer to squeeze three tasks into one, shave a few seconds of accomplishing an activity, and then use these efficiency savings to squeeze even more work into the day. (Sounds like a silly way to do things when you think of it this way, no?)

I just got back from my consultation with a physical therapist. We have an action plan with three priorities: 1. hands/wrists, 2.feet/ankles, and 3.knees. The work starts tomorrow. I’ve been asked to purchase more superhero gear – some gloves to sleep with, some padded gloves to use when I am walking with my crutches, and some different types of wrist wraps. (Wonder Woman move over, Rheumatoid Arthritis Guy is going to give you some fierce competition in the costume category!)

Goldberg

I continue to find that completing tasks is no longer a matter of going from Point A to Point B, as was the norm for me up until couple of weeks ago. Out of nowhere a bunch of other points, all out of order, have appeared in between. Something as simple as opening a bag of potato chips requires me to locate my cane or crutches (I think I need to start implementing the Dutch bicycle model where I have multiple canes and crutches throughout the house!), and then I have to find a pair of scissors, and then I have to cut the bag open, and then I have to get a bowl, and so forth. And condiment packets – don’t even get me started…those things should be banned. (For those lucky enough to be by an In-N-Out Burger, it’s the best – you can pump your ketchup into little paper cups.)

So yesterday I started thinking that if I was going to have to complicate what used to be simple, I might as well have fun with it. The image of Rube Goldberg contraptions entered my mind, and I knew exactly what I now needed to do. (When I was in middle school I used to check out this book repeatedly, I was so in love with the contraptions that required twenty steps to dry an umbrella. A few years ago I bought a copy of the book to have at home, this morning it came off my bookshelf and onto my nightstand.)

On a little side note – I was also a big fan of the Mousetrap board game. I think that was on the top of my wishlist for my tenth birthday (I am just a few years ahead of the video game generation). I remember taking it home with such excitement, as the commercial which showed the Rube Goldberg contraption of bathtub, diver, gears, marble run, and mousetrap was so cool. So what I want to know – is there anyone out there who was ever able to make the hope contraption work from start to finish??? The pieces were made of such flimsy plastic that my game could barely stand up much less perform as expected.

Okay, rant’s over…back to my main point.

I don’t know how long I will be living in this Rube Goldberg world, but I think it can be a pretty fun thing to explore from now moving forward.

When I left the dining table after lunch, I passed a mirror and saw that when I shaved this morning, I missed two large patches on my upper lip – making me look like an infamous German individual from history. It looks like all I need now is to come up with my own Rube Goldberg contraption to ensure I am properly shaved in the morning. Any suggestions?

I think I might go watch some Wallace & Gromit right now and get my mind off my rheumatoid arthritis. If you have any personal stories on complicated way of completing simple tasks, please do share!

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

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Universal Design

Universal design is the design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design. –Ron Mace

Ten years ago to the month, Rheumatoid Arthritis Guy was putting the final touches on his graduate thesis project. At the time I had no idea that my destiny was to become a superhero in the near future. The funny thing: even at that time – ten years ago – I was already designing with superheroes in mind.

The Americans with Disabilities Act was still relatively new in the world of architecture. In many of the articles I read on the topic, I sensed an attitude of annoyance. This is yet one more checklist we have to go through. And don’t even thing of making any renovations to a building, as you’ll be obligated to comply with all of the aspects of the new law. And restaurants – how are they going to survive by reducing the number of tables in order to make the space more accessible? (Serve better food at a more reasonable price, maybe?)

I thought the idea of designing for people with disabilities was a beautiful thing. I started doing more research on the subject as the time to finalize my thesis topic approached, and stumbled upon the world of Universal Design. What a great concept! Let’s design product and environments for all types of people – people with disabilities, people of different ages, and people of different cultures. (In the world of mass production that we live in, it’s easy to believe that there is such a thing as a “typical” person that comes in three sizes, no?)

As I was in architecture graduate school, the main part of my thesis manifested itself in a design project which was preceded by a semester of writing. I decided that I was going to design a “Museum of Prosthetic Devices”. I had two goals.

The first was to make a wheelchair-accessible ramp the primary form of vertical circulation through the building. I was already tired of the practice of slapping on a ramp in the least desirable corner in order to comply with the new accessibility requirements. (I used to call these “Lee Press-On Ramps”.)

My second goal was to show the beauty of all types of assistive devices, from the antique to the modern. My research led me to the library in the medical campus across town, where I found catalogs of all types of prosthetic devices, wheelchairs and mobility aids, visual aids, and hearing aids. To me, these items were true objects of art and deserved to receive recognition beyond their utilitarian medical purpose – I even kept a prosthetic leg at my drafting table for motivation. (During my final review, I was told that my entire thesis dripped with irony, as I was trying to put the spotlight on items that should remain invisible. Can you believe that?)

Museum

My career in the past decade has spanned many different areas of design practice. I continue to see some of the same thinking, that designing for accessibility is something to added at the last minute in order to be able to check off the corresponding boxes. I will continue with the principle that accessible design should be the starting point in all fields, from software design to product design to urban and building design.

More information on Universal Design can be found at the The Center for Universal Design NCSU.

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

*****
Thanks to Kali at Brilliant Mind Broken Body, whose recent post inspired me to write more on this subject.

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1-800-Support

There is a fine, fine line between losing hope and moving forward. Yesterday Rheumatoid Arthritis Guy crossed that line multiple times, and it was scary as hell. My biggest victory during the afternoon was lifting my own fork to feed myself – before yesterday I would have never been able to envision that such a seemingly simple task could be so difficult. I now know otherwise. (I did ask for help in cutting my food as it’s been weeks that this has become increasingly more difficult. I always know my place setting – it’s the one with a steak knife, no matter what is being served.)

But today is a new day.

I spent last night and this morning reaching out to my personal support network, both near and far. This was a big jump for me, as I begin to finally accept that asking for support is not a sign of weakness, but is indeed a sign of strength. I know I still have a lot to process on the path of asking for help, but being able to write the previous sentence with ease is a big step forward for me. (And I really do need these big steps, as my physical steps have become shorter and slower.)

Sometimes the support we are looking for comes from the individuals we expect it from the most. Sometimes is does not comes from the individuals we expect it from the most. At other times, it surprises us and comes from places where we least expect it.

Some of the strongest shows of support that I have received during the past few days have come from my readers, from fellow superheroes in online support groups, and even from the manager at my fitness club who told me that I would not be charged for any days that I lost at the gym due to limitations of my rheumatoid arthritis. For this, I am grateful.

Some of the strongest shows of support that I have received during the past few days have come from loved ones close in my life. It is hard to see the effect that my illness has on them, but I am learning that by working together we can all become stronger. I am working past feeling that I am burdening them, and learning that in talking and crying we can together move forward. For this, I am grateful.

I close today’s post with sincerity instead of humor. To everyone near and far, personal and virtual, – THANK YOU for your support. That is just what I need to get me through moments like this.

[Looking forward: I am going to my rheumatologist this afternoon for some anti-inflammatory injections. I am also lining up a physical therapist familiar with RA to exercise my body during some of the most difficult periods.]

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

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