All of a sudden, I started to experience one of my flares in a completely new way. Sure, it was just as painful as every other flare that has come before–but for the first time ever, during the most painful of all moments, I was finally able to focus on something other than just the pain.

As the flare subsided, what stayed in my mind was a variety of fascinating visual images. (Much better than the usual memories of pain.)

Just a couple of hours ago I experienced another flare. Once I was able to move again, instead of shedding tears, I decided to sit down in front of my computer and capture some of my visual memories from this flare. Here are the results:

I wonder, what will my next flare look like?

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

A Site-Specific Performance Event Takes Over the Chicago Cultural Center November 9, 2009, 6-9 pm

For one night only on Monday, November 9, 2009, from 6-9 p.m., the Chicago Cultural Center will host Site Unseen, a site-specific performance event featuring theater, dance, music, and visual art by individual artists and ensembles of local and international acclaim.  Presented by the Chicago Department of Cultural Affairs, the performances, installations, and video works will all consider issues around disability.  Works will be created specifically for the architectural spaces of the Chicago Cultural Center, located at 78 E. Washington Street.  Admission is free.

Now in its sixth annual edition, Site Unseen 2009 will feature works by local artists that bring visibility to a broad range of disabilities.  The theme emerged because Julie Laffin, the project’s ongoing curator, has become increasingly disabled by environmental illness and complications from chronic Lyme Disease.  This year’s presentation reflects her own struggles with new disabilities and the effects on her artistic collaboration with Chicago DCA Theater Director Claire Geall Sutton.  Along with this year’s assistant curator, Clover Morrell, Laffin is presenting a piece that will bring her virtual presence to the Cultural Center.

Participating artists creating audio, performance, spoken word, movement-based, and media installation art include Mike Ervin and Rahnee Patrick, Judith Harding in collaboration with Still Point Theatre Collective, James Kubie and Katrina Chamberlin, Marissa Perel and Madeleine Bailey, Debra Tolchinsky, Unreal-estates (Annette Barbier and Drew Browning), and Project Onward.

Performances will take place concurrently throughout the galleries, halls, rooms, and even elevators of the Chicago Cultural Center and need not be viewed in any particular order.

More Info: http://www.dcatheater.org/shows/show/site_unseen_2009/
Site Unseen Blog: http://www.dcatheater.org/blog/category/site_unseen/

*****

This collage includes photos that I took in Beijing, China. The sculptures and the architectural details are from both the Forbidden City and the Summer Palace. I visited in the midst of winter, so the Marble Boat was floating in a completely frozen-over Kunming Lake. On the morning of January 1st we visited the Great Wall. After Beijing we went to spend a few days in Shanghai…felt like I had just walked onto the set of Blade Runner.

*****

I got back into the kitchen yesterday. Yesterday’s lunch was achiote-marinated grilled fish fillets served on a bed of warm tri-color quinoa salad with fresh fava beans and chopped cilantro. Tomorrow marks one month since I have eliminated beef, chicken, dairy, gluten, tomato, bell pepper, caffeine, and corn syrup from my diet. Can anyone suggest a good tofu cookbook?

*****

So many book on my Sony Reader, which one to read? Maybe I’ll start with The Curious Incident of the Dog in the Night-Time by Mark Haddon. I download it in December and haven’t gotten around to it yet – it seems to have gotten excellent reviews.

*****

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

The Arthritis of Antoni Gaudi

“Antoni Gaudí i Cornet, Catalan architect and one of the most important visual artists of the 19th and 20th centuries, suffered from a recurrent and often persistent arthritis since he was 6 years old. His diagnosis is uncertain but juvenile idiopathic arthritis is most likely. He coped successfully with his rheumatic illness during his life. It is proposed that his arthritis may have influenced him to the development of 2 of his major skills: observation power and analysis of nature.”

Chimenea De Gaudi, La Pedrera
http://www.flickr.com/photos/moriza/ / CC BY 2.0

Interior Detail Of Gaudi’s Casa Batlló In Barcelona, Spain
http://www.flickr.com/photos/opalsson/ / CC BY 2.0

Gaudi Blue Mosaic
http://www.flickr.com/photos/victoriapeckham/ / CC BY 2.0

Gaudi
http://www.flickr.com/photos/22746515@N02/ / CC BY 2.0

Barcelona Gaudi’s La Pedrera
http://www.flickr.com/photos/spiros2004/ / CC BY 2.0

I continue to be surprised with how many artists (especially architects!) lived with some form or another of rheumatoid arthritis. I continue to be inspired with every new story that I discover. Might there be a relation between chronic illness and creativity?

*****

Other artists who lived with rheumatoid arthritis:
Architect Raymond Hood
Singer Edith Piaf
Painter Pierre-August Renoir
Actor Clark Middleton

*****

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

“This is just the first step towards a revolution on how we perceive the sanity and insanity of the human body and the artifacts of illness.”

-Francesca Lanzavecchia, Italian Designer

ProAesthetics
Francesca Lanzavecchia
www.francesca.nu

This is the first inspirational publication that present disability artifacts in a new light. It is a bridge between user and producer aiming to open their eyes to the possibilities and new values that these vital body accessories can bestow upon the user. Here disability aids become a stage to discuss, understand and cope with disability, illness and human frailty.

Left to Right: ‘Tea Time’ Cane, ‘Protraction Crutch’, and ‘Bone’ Cane.

Rheumatoid Arthritis Guy went crutch browsing yesterday. In a way, this is testament to how much better I am doing. Just a few days ago, I would have never even  considered the possibility of spending time and energy walking from store to store to look at walking aids.

Granted, I was already in the medical part of town having some lab tests done – but I was able to walk around for quite a few blocks before returning home.

(The thought of looking for new crutches has been on my mind since the end of May, when I saw a guy my age who was using a really nice and sporty pair. I wrote more about this at the time, in Design Meets Disability.)

I found a really cool pair of European style forearm crutches, with a very cool molded design in the handle and arm support area. They were much nicer than any I have been above to find online. (I currently use forearm crutches with a closed cuff, which makes them a little more difficult to slip on and off.)

There were a few different styles in the various stores that I visited. Of course, my favorite pair was also the most expensive pair. Ouch!

But I’ll put this purchase on hold, for the moment. With all of the medical expenses that I continue to rack up on a daily basis, I can’t really justify spending money on another pair of crutches based solely upon their looks. (I can see it now, Carry Bradshaw with her walk-in closet of mobility aids. And that set of Manolo Blahnik $600 crutches? To die for!)

In a way, it’s interesting to realize that my use of crutches has surpassed a level of mere utilitarianism, and has reached a point where they are  just another thing I put on when I get dressed. In a way, they are indeed sort of like a pair of shoes. Something that I wouldn’t think of leaving the house without, and something that I might want to mix and match every now and then.

Deep down in the back of my mind, I still do have the hope of reaching a point where I am able to walk without crutches. But in the meantime, I’ll continue to be happy with the fact that my crutches are a part of who I am. And one day, maybe I’ll just treat myself to a nice new pair.

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

alternative ways of making
May 26 – August 23, 2009
NIAD (National Institute for Art and Disabilities)
551 23rd Street, Richmond CA 94804

An exhibit showcasing alternative art making methods and new tools inspired by them. This exhibit was made possible through a collaboration between NIAD Art Center, the studio artists who work there, and two graduate design students from the California College of the Arts.

For more information please visit www.niadart.org.

Creative Growth
Oakland, CA USA
Creative Growth Art Center serves adult artists with developmental, mental and physical disabilities, providing a stimulating environment for artistic instruction, gallery promotion and personal expression. Artwork fostered in this unique environment is included in prominent collections and museums worldwide.

Creativity Explored
San Francisco, CA USA
We are a nonprofit visual arts center where artists with developmental disabilities create, exhibit, and sell art.

*****

Happy Father’s Day to all the dads out there!

*****

I feel very fortunate that I have been able to visit the Louvre in Paris on multiple occasions. After doing the tourist guide thing the first couple of times, I have learned to focus in one theme in order to make my visits more relaxed and enjoyable. One of my new games is to photograph the changing patterns of light and shadow on the sculptures throughout the day and night.

*****

During my last visit I picked up a copy of Dogs in the Louvre, a great little hardcover book that includes full color reproductions of works of art in the Louvre that feature dogs.  (For cat lovers, there is also a corresponding Cats in the Louvre.)

*****

In you are in the southern hemisphere, today is the winter solstice – the shortest day of the year. If you are in the northern hemisphere, today is the summer solstice – the longest day of the year.

*****

Yesterday’s lunch: homemade gluten-free cornmeal pizza crust topped with swiss chard, onions, and raisins. Next time I’ll fire up the outdoor brick oven.

*****

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

“One must from time to time attempt things
that are beyond one’s capacity.”
Pierre-Auguste Renoir

Pierre-Auguste Renoir (1841-1919) was one of the most prolific of all French Impressionist painters. During his close to sixty year career as an artist, Renoir is said to have painted over 6,000 canvases. Some of his most well-known paintings include Dance at Le Moulin de la Galette (shown above) and Luncheon of the Boating Barty (available here).

When Renoir reached his late 50’s, he suffered his first severe rheumatoid arthritis attack. Within a few years, his hands and feet were so damaged by rheumatoid arthritis that he had to use a wheelchair to sit and move around. Renoir’s hands became quite deformed – so much so that in order to continue painting, paint brushes had to be wedged into his wrapped hands.

Renoir continued to paint despite the crippling impact of his rheumatoid arthritis. Large canvases were rolled up like rugs in front of the artist’s wheelchair, with only a small section exposed. Using short, sudden motions Renoir would paint – eventually completing the entire painting. Renoir once said to a dealer who saw him painting, “You see, you don’t even need a hand for painting!”¹

During the 1995 European Congress of Rheumatology in Amsterdam, Renoir’s grandson revealed several previously unknown aspects, and photographs, of the artist’s life with rheumatoid arthritis.

Be sure to take a look at How Renoir Coped with Rheumatoid Arthritis. Once you read all of the details and see the photographs, you will never look at another Renoir painting in quite the same way.

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

In the spring of 2008, New York publisher SelectBooks joined with award-winning educator and author Dr. Alan Brightman to create DisabilityLand, “a groundbreaking volume that examines the landscape of disability from new, intimate and unusual viewpoints.”

DisabilityLand features NIAD artwork on the cover and throughout the book while “Brightman provides a tour through the landscape of disability where common and not-so-common sense co-exist and where people are seen for who they are rather than how they are stereotypically—and often pathetically—portrayed.”

Brightman explains, “kids and adults with disabilities live with, bump into, and wonder about people who’ve typically had little experience with others very different from themselves.” He adds, “I’ve been privileged to be involved in these interactions for many years. I’ve laughed at some, cried at others and was frankly flabbergasted by still others. Put disabled people together with non-disabled people, and all too often the unexpected happens together with the insightful.”

“DisabilityLand does not care about being politically correct. It doesn’t rely on euphemisms or platitudes. Rather, in stunningly frank language it conveys the experiences of disability in a candid and unprecedented way.”

The National Institute of Art & Disabilities (NIAD)

*****

Midway through The Winner Stands Alone: A Novel by Paulo Coelho. Entertaining read so far, I hope it continues through the second half. Great commentary on status, the Superclass, and appearances – as seen through the Cannes Film Festival.

*****

I just saw Angels & Demons, which motivated me to pull out some of my Rome photos. Beautiful shots of art and architecture were interspersed in between the action scenes – overall a good movie with a slightly over-the-top finale (I had previously read the book…)

*****

Rheumatoid Arthritis Guy’s Yoga Workout Playlist

1. Samtosha (The Eternal Embrace – Baird Hersey & Prana)
2. First Steps (Journeys – Himalayan Voices)
3. Namaste Sadhana Remix (Sadhana – Maneesh De Moor)
4. Namaste (Check Your Head – Beastie Boys)
5. Om Asatoma (The Essence – Deva Premal)
6. As I Lay Me Down (Whaler – Sophie  B. Hawkins)
7. The Wheat (The Best Of Lisa Gerrard – Lisa Gerrard)
8. Bow Down Mister A Small Portion 2 B Polite Mix (At Worst…The Best Of Boy George And Culture Club – Culture Club)
9. Karma (Buddha Bar IV – Outsized)
10. But I Feel Good (Lovebox – Groove Armada)
11. Rain One (Varekai – Cirque Du Soleil)
12. Little Fluffy Clouds (The Orb’s Adventure Beyond The Ultraworld – The Orb)
13. Balance (Journeys – Himalayan Voices)
14. Serenity (Liquid Mind V: Serenity – Liquid Mind)
15. Chakra Chimes (Chakra Suite – Steven Halpern)
16. Om Namo Narayana (Love Is Space – Deva Premal)

Duration: Approximately 60 minutes.

*****

Today’s plans: Lots of rest and reading.

*****

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