Not Out Of The Woods Just Yet

“Me thinks that the moment my legs begin to move, my thoughts begin to flow.” -Henry David Thoreau

Rheumatoid Arthritis Guy is coming off the lows that he reached earlier this weekend. What can I say? Living with rheumatoid arthritis can be quite a challenge at times – even for superheroes.

Over the past couple of days things have gotten a little bit better. If we were talking in terms of a percentage, I’d put the improvements at right around 3%. Small, I know. But still – I’m happy. (Things could have gotten worse, after all.)

As should be obvious, I’m not out of the woods just yet.

During some of my roughest moments during these past days – especially when walking was at its most difficult – I often found myself thinking back to a wonderful walk I took this past March.

My nephew and I loaded up or backpacks with a sleeping bags, a couple of cans of food, water, some trail mix, binoculars, and lightweight tent. We drove up to Point Reyes National Seashore in Marin County, parked next to the Bear Valley Visitor Center, and started on our ten mile walk to Wildcat Camp, which overlooks the Pacific Ocean.

Point Reyes
A fallen tree is now the growing grounds for moss and ferns. Our little blue tent, on the cliff overlooking the Pacific. Me and my trusty MBT shoes sitting in front of the tent. Alamere Falls flowing into the beach, located an additional mile past the camp.

The first nine miles were a combination of flat, uphill, and downhill trails through tall redwood trees. The last mile was an open air walk down to the ocean, where our campsite next to the coast waited for us.

My hands and ankles were already not doing too well, although not nearly to the level where they are at now. I had backup plans to go to a campsite that required just a mile walk each way in case I thought I wasn’t going to be able to make the longer walk. But with new Level III ankle supports and wrist guards, I was able to make the ten mile walk. (And more importantly, I was able to make it back the following day!)

I still remember walking for hours on end, one foot appearing in front of the next foot. My nephew and I talked throughout the entire hike. Since it was a weekday, we pretty much had the entire route to ourselves. Occasionally, I wondered what I had gotten myself into – but I continued walking, mile after mile.

As we walked through the woods, we could see the sun poking through the tall canopy of the trees. Even though it was a clear spring day, underneath the trees it was quite dark. The experience of adjusting our eyes to the dimness, only to be shocked when we crossed a ray of light, was something we went through many times that day.

We even passed through a patch of shorter-type trees that had grown so dense, that they formed a dark tunnel. It was amazing to see how little light seeped in through the trees. The temperature dropped considerably, and it felt like we had just walked onto the set of the movie Sleepy Hollow.

At first glance it appeared that there was no life in this “tunnel”, but upon closer inspection we found some small mushrooms growing and lizards walking around. I have no doubt that with lots of time, this stretch will heal and once again be the healthy green area that it once was.

In a way, all of these memories provided me some nice metaphors that I could connect with during these past few days.

Step by step, putting one foot in front of another – no matter how long it took to reach our destination.

Adjusting to the darkness, only to be slightly thrown off guard when an occasional bright point was reached.

Realizing that even though something appears to have reached a point where there is no hope, life will always come back to fill in the void.

I think even further back, to one of my architecture studio projects when I was an undergraduate. We were to design both an outdoor plaza and the entrance to the underground subway station, for a small triangular piece of land in Manhattan.

Plaza Trees
Canal Street Plaza and Subway Station

I slightly tilted the plaza (rolling slope) and filled it with tall poles (trunks) topped with panels of varying transparency and translucency (leaves). These “trees” extend below ground.

As pedestrians walked into the transit station below, light filters through the panels and skylights -  recreating the mood of walking through a patch of redwoods on a sunny spring day. This is just another one of my walks through the woods, but this time it’s imagined.

So I may not be out of the woods just yet, but I’m okay with that.

In the meantime, I’ll continue to walk – either with my feet, or with my mind.

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

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These look pretty cool! SideStix Sport Crutches: The First Shock Absorbing Sports Crutches with Attachable Feet. They are still in prototype stage, but I hope they come to the retail market soon!

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B-I-N-G-O

Rheumatoid Arthritis Guy is pleased to present Flare.

Have you ever found yourself in the middle of yet another flare and thought to yourself “How can I possibly have any fun?”

Now you have the answer.

Play Flare!

This game will bring countless hours of fun and excitement.

Play in the morning! Play at night! Play with friends! Play alone!

Flare Card

Number of Players
1 person, minimum.

Instructions
Check your body joint by joint. For every joint that is inflamed or in pain, place a marker on the corresponding square on the Flare card.

How to Win
Mark five squares in a row (horizontal, vertical, or diagonal) and you win. Don’t forget to shout out “Flare!”

Blackout Rules
All squares must be marked in order to win at Blackout. Please note: Playing blackout is not recommended for beginners.

Disclaimer
Rheumatoid Arthritis Guy assumes no responsibility for any damages that might be caused by playing Flare. I can imagine it already. “Come on left elbow…left elbow…left elbow. I NEED my left elbow to hurt in order to Flare! Lucky left elbow, please don’t fail me now!”

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

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Creativity, Disability, And The Arts

Design for Disability

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.

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Sunday Break

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

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Flower

I took this photograph in San Francisco a couple of years ago. I love how the flower looks like it’s being illuminated from it’s center. I often look at this photo when I need a moment of peace.

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Yesterday was the 178th day of the year. Today is the 179th day of the year. We are smack dab in the middle of 2009.

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I just started reading The Autoimmune Epidemic by Donna Jackson Nakazawa. The house I grew up in was just yards from agricultural fields. I remember playing outside and having to run indoors whenever the small planes spraying pesticide came buzzing around. I’ve always wondered if there’s a connection between this and my RA.

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Thanks to everyone who sent me kind thoughts of support yesterday.

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

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