Superhero Toy Chest

LaserThe other day Rhuematoid Arthritis Guy was asked if he wanted to play with a real laser gun! Would a superhero ever turn down such an offer? Of course not. So I donned the green goggles (everything around me all of a sudden looked like it had been slimed by the Joker) and had at it. All I needed was a safe full of money to crack into.

The electrodes had just been removed from my ankles – for about twenty minutes electrical currents of varying intensity were being delivered to my body. (It’s always interesting to see the look on the technician’s face when they realize just how far up they have to go in order for my nerves to register any sensation of the pulsating current.) And even though I had been warned that five minutes into the session there was going to be a change in polarity – please don’t get scared – I still found myself letting out a short shriek of surprise when that polarity change came.

So while I played with the laser gun (hold in one place and press down on the button until it beeps in approximately two minutes, then move to another point and repeat) the technician took out the ultrasound device and rubbed it around my tendons. The metal surface would have been quite cold were it not for a large dab of anti-inflammatory gel that had previously been applied to the spot.

In between the different treatments on my hand and feet, warm water bags and towels were wrapped around my wrists and ankles to keep them warm. With the inflammation of the past weeks the circulation levels have dropped considerably, causing my hands and feet to plummet to seemingly sub-zero temperatures when left uncovered. (It amazes me how one area – the joint – can feel like it’s on fire while the surrounding area feels like it’s frozen.)

While I would like to say the above is a typical visit to a superhero spa (leave those wax strips right where they are!), I must confess that this was one of my recent visits to the physical therapist. I have been going every other day for sessions that last between an hour and a half and two hours.

Yesterday, in the room next to me was a young rugby player – bearing his latest sports injury as a badge of honor. I soon realized that they entire rugby team goes to this clinic on a regular basis to treat their most recent war wounds. I’m just waiting for one of them to ask what sport I was playing when I got hurt. This time I’m going to be a rugby player – from the opposing team!

My physical therapist gave me a Sammons Preston product catalog the other day and marked off a list of items I needed to get.  Last night I ordered some ulnar protection gloves to sleep with, some padded gloves to use with my crutches, some different types of wrist wraps, padding grips for my utensils, and a really cool knife! As I flipped through the catalog I was amazed at how many types of assistive devices exist. (It was almost as cool as flipping through Best Buy’s Sunday flyer.)

Physical Therapy Toys

On a related note, this past weekend I stumbled across FunkyArthur, a British online retailer which specializes in modern mobility equipment and arthritis aids. It’s sort of a cross between the Museum of Modern Art and Walgreens. Check it out!

I still have quite a few physical therapy sessions scheduled. The first goal is to bring down the inflammation on the ankles and wrists, followed by the knees and elbows. Once the inflammation seems to be under control, we plan on dedicating some session to strength building exercises. The first few sessions have helped quite a bit and I am looking forward to the upcoming session.

If you have any interesting stories of physical therapy, or have your own great assistive household device that you just can’t get by without, please do share!

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

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The Beauty Of Movement

Dance is the hidden language of the soul. -Martha Graham

Rheumatoid Arthritis Guy has a new found appreciation for movement. Movement of my wrists, movement of my ankles, movement of my hands as I pour myself a glass of water, movement of my fingers as I type at my computer.

During this past week I continued to have many episodes of severe pain and inflammation. Instead of struggling to carry on as usual, I now give my body the break it needs and lay down in bed for an hour or two. I am learning the importance of keeping my mind active during these episodes – so I can often be found meditating, reading, or listening to music. (I no longer have any regrets over the Bose headphones I shelled out for a couple of months ago!)

Even mental movement has become a beautiful thing.

A few days, during on of these episodes, I was in bed listening to music. The title song from Cirque du Soleil’s Alegria shuffled onto my iPods. All of a sudden, I was dancing in my head. Not just made up dancing, but really dancing. It was a wonderful feeling. (By the way, Alegria is Spanish for Joy.)

You see, in the yoga class that I attend – Tuesdays and Thursdays are dedicated to more traditional vinyasa/ashtanga routines, while Friday classes are more freeform. A few months back, my instuctor ended one of these Friday classes by playing the Alegria song and telling us to just close our eyes and move. It  was such a memorable event, to experience the joy of my body moving and dancing to the music. (And, at the time, I was so happy that everyone’s eyes were closed.)

I have always been a fan of the arts, but I must admit that dance ranked pretty low on the list of types of performances I liked to attend. (Sure, I used to do The Nutcracker in San Francisco, and once was even lucky enough to see Mark Morris’ The Hard Nut in Berkeley – but it did not get much deeper than that.) I just did not “understand” dance.

But now, I understand the beauty of movement – and that is probably all I need now to understand dance. I look forward to learning more about the art of dance; particularly the many dance groups around the world that are doing such a good job of integrating disability. Three such groups are highlighted below.

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

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The GIMP Project
New York, NY
www.thegimpproject.com

GIMP beautifully resets preconceptions about bodies and movement. -The New Yorker

Choreographer Heidi Latsky presents a roster of performers who embody unique physical virtuosity. Outstanding technique, raw beauty and the physical poetry of risk- taking, propel the artists and the audience into the collective unknown. GIMP examines the uncompromising ways we are often identified or defined by our physicality; an elegant landscape of portraits, illuminating limbs to accentuate uncommon beauty, mystery and grace; the ways in which our bodies support and rebel. GIMP confronts the audience with their preconceptions, challenging us to re-think accepted notions about dance, performance and body image. An exploration, that dives into the heart of difference, voyeurism and the unexpected.

DanceAbility International
Eugene, OR
www.danceability.com

I believe DanceAbility goes beyond movement and exploration and is for many people their first opportunity to define themselves in their own terms and see that this dance form, like their lives, has many options and possibilities. -Susan Sygall, Mobility International, USA

The mission of DanceAbility International (DAI) is to encourage the evolution of mixed-abilities dance by cultivating a common ground for creative expression for all people regardless of abilities, economic status, age or race. The mission is accomplished through performance, educational programs, teacher training and workshops. DAI performs and teaches throughout North, Central, and South America, Europe and Asia, receiving local, national and international recognition.

AXIS Dance Company
Oakland, CA
www.axisdance.org

AXIS questions all of our assumptions about the possibilities of movement, subsequently expanding and enriching the art form itself. – John R. Killacky, Executive Director, Yerba Buena Center for the Arts, San Francisco

Prepare to leave all your preconceptions at the door — AXIS Dance Company, one of the country’s most acclaimed and innovative ensembles of performers with and without disabilities, will change the way you think about the possibilities of the human body forever. The Company is known for its high artistic and educational standards and for cutting edge collaborations with world-renowned choreographers and composers. AXIS’ groundbreaking work inspires audiences and broadens perceptions of dance and disability. It’s a thrilling experience not to be missed.

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Sunday Break

Because there is no such thing as taking too many breaks!

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Happy Mothers Day to all the moms out there!

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Photos taken at Barcelona, Spain. I particularly like the contrast between the hard 90-degree angle edges of Mies van der Rohe’s Barcelona Pavilion (left) and the soft sinuous curves of Antoni Gaudi’s Casa Batllo (right).
Barcelona

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Because we should never lose touch with the kid in all of us – I just finished reading The Graveyard Book by Neil Gaiman. Wonderful message on the lessons of life.

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Today’s plans: outdoor lunch on a sunny rooftop terrace.

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

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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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