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Map of the Survivors Collage
is based on entries submitted for our live digital Map |
The Map of the Spinal Arachnoiditis Survivors Registered at the Art For Arachnoiditis Project
has evolved into a mixed-media Google Maps collage project. At 218 registered Survivors, it requires some creative placement of all the parts to ensure we don’t leave anyone out.
Each registered location will be marked with Arachnoiditis Awareness Map Pin. Assembled and contributed to the project by Linda Funsch, the designer of the Awareness Ribbon.
The Map came late to the project plan. As more people discovered the project it seemed to make sense to find out where they were from. The next step was to keep a record of it so that Survivors in geographic proximity could find each other and share resources.
After that, it seemed appropriate to create something which will show how this project is bringing Survivors together from around the world.
Originally intended as a large community youth project, a serious illness interrupted the group leader’s plans. So, the Map is now slowly being created in my studio. I believe it will continue to transform as this project grows.
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| Sanctuary and Boundaries |
I hadn’t really envisioned the map as a collage project. The Method Muse of my Sanctuary Collage seems to have adhered itself to other projects in the studio.
Other Transformations…. The Opening Reception Workshop (for a fee) has evolved into a FREE Independent Adaptive Art Activity. Those attending will have the opportunity to create an art project using the Ostrich Cot. The Activity will be timed to show the importance of Time Management when Living and Working with Arachnoiditis.
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| New Supplies for the Independent Adaptive Art Activities |
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Ostrich Cot with NEW face cushion
and Drawing the Survivor Portrait for Karen |
Even My Ostrich Cot is still transforming. My NEW cushion for my face arrived today. The cot works quite well as is when you get it. I have found though that when it is re-purposed for long term and frequent use it helps to add individual ergonomic adjustments and pain relief tools (i.e. extra padding under the abdomen, a knee pillow, neck and shoulder heating pad, etc.). The Ostrich Cot helps me to remain productive during my horizontal time. I sometime push myself to stay vertical too long because I have other work to do or simply because it’s really stinkin’ boring just laying here looking at the ceiling.
I keep saying I am going to paint a mural on the ceiling as another method of working horizontally but, I haven’t quite worked out the logistics or the balance to climb up and down from the scaffolding so that I can lay on my back to paint it. Another one of those Projects for Another Day.
TRIGGERS
In the world of work, art, chronic pain, permanent disability, personal evolution, and self-employment there are many triggers to transformation. One of those is a true appreciation for the work of other artists.
This morning a friend showed me a wonderful video of the making of a
Papier Mache Dragon Trophy by Dan Reeder as I was in the middle of appreciating the quality of the time lapsed video and looking forward to seeing the end result my friend said,
“This is time lapsed and taking a really long time. It must be months and months of work! We’re talking MONTHS! What you’re doing is nothing!”
In an instant my appreciation was stifled by the initial hurt– immediately followed by the wordless amazement I had for this friend’s inability to comprehend the scope of what I am doing.
Knowing absolutely nothing about the artist, I didn’t feel I could respond with anything like, “What else is he doing with his time? What other obligations does he have? What limitations is he working with? How long can HE be vertical before he has to stop working?”
All of these thoughts machine-gunned through my mind. The safety must have been on my mouth-trigger. No words came out.
The majority of my work relies on self motivation and self discipline. My faith in what I am doing is often undermined by weaknesses in those areas. lack of validation, a perceived lack of proof that it matters to anyone else…and some doubt as to my ability to actually DO these things at all.
This tense cloud hung over my day. Pushing it to the back of my mind, I continued working and enjoying parts of my day. Eventually, a muscle relaxer was involved to ease the consequential muscle spasms. (This is an established result of STIFLING since onset of arachnoiditis. I should know better.)
I was angry…not exactly at my friend…I had a lot of mixed disappointment-laced feelings there that I still haven’t quite figured out. I reminded myself that this person has a well-deserved place in my heart.
To dwell on this one thing and take it out of context, no matter how truthfully he had just inadvertently expressed his lack of knowledge about what I do, was not fair to our friendship. Although it was a pretty insensitive thing for him to say, I am certain there was not any malice intended and, well… there is no unwritten law that states he must fully grasp the time, effort, process, or outcome of my work. …but, it would be nice if he (and other people) did.
I think part of my anger was about the way that even after all this time I STILL felt like I had to justify and defend what I am doing. I shouldn’t feel any need to compare my life, circumstances, or work to that of this (or any other) artist. There is no need to quantify or explain it to my friend(s). I sense no compulsion from them to do anything like that in reference to what THEY do.
I see this as a Trigger, not JUST for muscle spasms, but as a push to STOP falling back into that place.
Old habits die hard. It is long past time for me to transform into a person who fully accepts that THIS is who I am. THIS is what I do. IT and I have value that does not need validation from any other source. I am not who I thought I’d be…but,
“I am exactly the person that I WANT to be.”
Amanda Palmer
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| Root:30 Day Art Journal Project (2014) ~ from the Day 9 entry. |
Start at
DAY 1 of Thirty, Thirty, Thirty 2015
***Survivors, please remember, you are not expected to fund this project. It is here to benefit you. You do not need to send any additional funds beyond the cost of your registration fee for your art entry. You are NOT required to submit an entry in order to participate in the project. 
Art For Arachnoiditis 