Day 30 Phew! Thirty Days!

Arachnoiditis Survivor Portrait in Progress

• Day 30 
• Loving music from David Ramirez right now. 
• Saw him open for Shakey Graves in Ithaca, NY this month..."found" them both because I heard Roll The Bones on Youtube this winter. 
• 
  
• Anyway, today I was listening to David's Youtube stream while I worked on the Survivor Portrait for Karen. 
• After hearing Find the Light, I was inspired to speak with David in Ithaca about doing a song for the Art For Arachnoiditis Project. Naturally, he referred me to his agent/manager...The next day, I sent the idea proposal. In the mean time, another idea is fermenting... 
• A CONTEST... to find OUR Song. Open to musicians/composers/poets to come up with Inspirational, encouraging, empowering music and lyrics that are dedicated to the Survivors and licensed for Project Use. It would be REALLY cool if one of the Survivors was inspired to create one. I can tell this idea is stuck in my head now. So, I will be announcing more about that in May. 
• The lovely spring sunshine is testing my self-discipline but, it seems to be my best bet to work inside in the mornings while it is still chilly outside, soak up a little sun while I eat lunch, then come back in and work a few more hours on the funding and admin aspect...THEN when my Grandson gets off the bus ...outside as much as possible until dark. 
• My edible weeds that I transplanted last year are beginning to sprout.... working on making sure they are "contained" in my edible yard so that they don't accidentally get mowed over when I have to trim the part that EVERYONE actually uses (read as: "walks/plays/rides on"). 
• AND with the Spring/Summer sun comes my annual habit of Foraging for Photos (and wild food). This year, in ADDITION TO offering prints for sale on my website, I will be sharing digital printable images for my patrons on Patreon.  
• COMING IN MAY~ I will have a vendors table at STRUM ACCORD THIS YEAR. 
  
• These talented kids do a great job!
• Hope you will stop in to check it out. 
• Hm.m.m.m Maybe I could incorporate THEM/THIS in the OUR Song Contest... gears are turning so fast there is probably smoke coming out of my ears. 
• In case you are just now checking in...today is the last post of the Thirty, Thirty, Thirty 2015 (spring) series of posts.
• You can check out the last twenty nine in the links below.
• Day 29 ~ Nature's First Green
• Day 26 ~Sunday Reflections
• Day 25 ~ A Time To Plant?
• Day 23~ The "S" Word
• Day 22~ A day for Earth
• Day 21 ~Bringing the Days Together
• Day 17 ~ Acceptance and Forgiveness are Required t...
• Day 16 ~ Making Memories
• Day 15 Blessings for the Un-plugged Peeps?
• Day 13 ~ Distracted by the...
• Day 11 ~ Minutes Matter: Easy Mandalas
• Day 10 ~ Magic is Happening Here
• Day 9~ Transformations and Triggers
• Day 8 ~The Great Unknown
• Day 7 ~About Time and Making
• Day 6 ~ TILT days
• Day 5~ What's on the Map?
• Day 4 ~ Painting In Progress
• Day 3 Earthy Community Action
• Day 2 of Thirty,Thirty,Thirty
• Thirty, Thirty, Thirty 2015

Day 29 ~ Nature's First Green

Foraging #5

 ...is Gold
The hardest hue to hold... 

A GREAT day today OUTSIDE in upstate New York!!! 
For the first time EVER, I went out to get leeks this year. 
On the way, I found all kinds of other fantastic SPRINGY STUFF. 
I think I may have even gotten a little bit sweaty. 




Posted my Ode to Spring on another platform yesterday. 

Foraging #8

Foraging #23

 I will be posting more photography from 2015 on my Patreon Page this year. Looking forward to MANY more outdoor photo ops! 

Here is hoping the good weather sticks around for a while. 

Foraging #28

Day 26 ~Sunday Reflections

Grand Parenting and Parenting 

Is it called "Grand" because we have learned so much from our mistakes as parents that we finally know that we must take the time to appreciate all that we missed or didn't do the first time around?

Or is it called "Grand" because the task of Parenting was such a blur of responsibility that we simply cannot even recall the Grand Moments?

I am consistently amazed by the discrepancy between these two tasks. 

It is like being two people in one body. 

"Who the heck are you and what have you done with my real Baby?"

Old habits die hard. I still approach my adult children as if I have some liability for being certain they have the "right" information to make the "best" decisions that will "ensure" their "happiness". And, yes, all of these do come with their own classic set of air quotes. 

In each guiding moment, I truly believe that they should define their own happiness. It is NOT for me to determine what that happiness looks like. So, how do I NOT speak up if there is a clear moment in which they are unwittingly jeopardizing the ability to achieve said "happiness"??? How does one choose when to guide and when to just shut up? Is silence a cop out? Or..is it simply giving them the space to fall so that they will learn how to get back up?

In the midst of their daily activities, at the realization of each achievement, or at the grief of "falling short" of what they thought they were supposed to be doing; I am equal parts alarmed and awestruck that these GROWN PEOPLE used to be MY tiny little children.

But, with my Grandson, I relax. I entertain. I LISTEN. I put everything else on hold (and feel extremely guilty if I don't) and it becomes a truly Grand Time Together. 

In some ways, I did do a bit of this "everything else on hold" approach for my own children...possibly to their detriment...but, for the most part; I was simply working too hard to see the teachable moments, the graceful moments, the Grand Moments with them. Patience was probably in much shorter supply back then. 

Today, in the midst of wishing for warmer weather, more time, more focus, better communication, more fun... I keep getting hit with what a Grand Thing It Is To Be A Parent. 

Maybe in the end, that is all that matters. 

Day 25 ~ A Time To Plant?

Waxing Half Moon...
Apparently, this is a time to shine.
This afternoon I spent some time outside pensively pulling debris out of my wild herb garden. 

The shadow of Earth Day snow hung in the back of my mind making me wonder if I was removing this protective debris too soon. Still, this process eased my mind (and shoulders) of pent up tension from earlier in the day. 


It is our tradition to plant seeds on Mother's Day and when the weather permits, usually after Memorial Day, we move the fragile young plants to the garden outside. 

When it is too cold to plant seeds for tomorrow in the ground, my art becomes the seed. I am coming to realize/accept that I have grown into a multi-media artist. This turn of events was not deliberate or intentional. It seems to just be a natural evolution of my creative adventures. 

The need to release these seeds into the world has pushed me to move outside of my comfort zone. Although it is still my go-to method for relief and expression, I think it would be false to continue to identify myself as a "painter".

SCREEN TIME
House full of people. Each one looking at his/her own screen....even the youngest, age five, is asleep in front of a screen. 
 We had a bit of quality time today but, closing the day this way just seems wrong. I suspect these nagging and unspoken objections are remnants of the seeds my mother planted many years ago.

My Father would save up all of his military leave time (except what he used at Christmas) and we, a family of six, would spend a large portion of the summer tent camping. No phone. No TV. Just us. Together...

For better or worse we HAD to communicate with each other. We did bring books to read. My Mother always enjoyed this blissful release from "technology". I truly cannot imagine what she would have to say about this current state of affairs but, I feel pretty safe in assuming she would've objected...and loudly.  

THE SEEDS of my time
Today I wish to plant the "seeds" for:

• Expanding the "food not lawns" concept in my own yard
•  Creating a ban on screen time for the closing of the day...or maybe designate a closing the day together habit for when everyone is home together. After that, they can do whatever screen activity they want. When they were younger we didn't always have dinner together because I was going to school full time and working three jobs. But, we DID always have bedtime stories and together time before sleep. 
• The Boundary between my Live/Work space
• Accepting the Artist I am and letting go of the Artist I thought I was going to become. 
• Better communication and the skill to truly articulate that which matters most when we are face-to-face. 

These are the seeds that will Grow My Own Glow and perhaps, drop a few seeds for theirs. 

Day 23~ The "S" Word

Some good uses for the "cold"

S is for, "Silver Lining"

Last week I had to make room in my little fridge. So, I froze the extra mullein decoction into cubes. Now, I add them to the hot ginger root spice tea. This cools it enough to drink and allows me to save the mullein tea for more than a week. 

It doesn't seem to change the medicinal properties of either plant. These can also be added to cold beverages. But, why would I do that? 

Temperatures around 27 degrees F last night 

were an open invitation to S@#!  

Bonzai Trees 4.23.15

 Yep. It came again last night. S is for, "Still here today". 
and for, "Saving the greens"

Hoping I covered these in time to protect the new leaves and buds that were showing just two days ago...

Baby Lilac Bush 4.23.15

My solution to this problem.  It's NOT very productive
but, my "boss" doesn't seem to care. 

       

Malachi recovered from surgery 4.23.15

and "Social Media"

Considering the numerous protests I saw floating around social media this morning, I'd have to say I am not the only one frustrated with this weather shift.

S is also still for. "Studio"

OTHER STUDIO ACTIVITY THIS WEEK
Survivor Portrait in Progress for Karen (Video#1)

Independent Adaptive Art Activity

Day 22~ A day for Earth

Earth Day 

Although I fell short of my expectations (again) for the way I wanted to participate in this day, I am still supporting the effort with B~Arter Bucks for those who post what they are doing to help the Earth. 

In deep empathy for those limited by the weather, I am extending the offer. Just post your images by May 10th to be eligible to receive $10 in B~Arter Bucks. 

Simply post your Earth Conservation activity in the comments here or on our local Wellsville Community Gardens Earth Day Event Page. 

Also, out of respect for the Earth and all it offers, I have decided to make my "fence posts" out of my recycled Sunflower Stalks. 

Every year we plant Sunflowers in memory of my Mother. 

They were her favorite.

At first I thought I would put sealant on them to protect them from the elements. But, the more I thought about it, I decided to just let them fall apart as they will and replace them again in the spring with the ones that I save from this season. 

I spent a lot of time last year Naming Nature and if all goes well, my yard will be full of low maintenance edible and medicinal  "weeds" this year. 

Mullein flower Stalks and Blooms ~Fall 2014

I can already see some of them thriving and hoping for warm weather. We had hail and snow today...so, I was outside covering my fragile baby lilac transplant and the bonzai trees. Otherwise, I think the rest of the plants are okay with this kind of fluctuating temperature...I hope. 

HAPPY EARTH DAY! 

I haven't started my own apothecary yet...but my most crucial needs are being met by nature right now. I saved a crap ton of mullein last fall when I found out that it actually works! Hoping the transplanted first-year plants and seeds do well in my yard. So far, so good.   

Also, brought in some Evening Primrose, more WILD day lilies...the edible ones, and Joe Pye Weed, and blue vervain, and cleavers...can't wait to see how they do this year. 

The other UP side of this deal....less lawn to mow and more stuff to grow. WooHoo! 

Saves gas and personal vertical energy. It's a good plan. My neighbors.. may hate it...hope not. 

Day 21 ~Bringing the Days Together

Survivors' Exhibit Sign Created by Wendy Skinner
at Signs and Wonders

Day 21 For the last few days, I have been posting the Opening Reception Details and Activities Around Social Media so that as many Arachnoiditis Survivors as Possible might be able to experience the exhibit and see for themselves that they were in our thoughts that day. I have to keep stopping myself from jumping too fast into the next cycle of the project. I just want to process THIS moment for a while instead of letting myself miss it. There are still a few videos to edit and assemble And Survivor Portraits to finish before we truly close out the first year of the Art For Arachnoiditis Project.

 I am hoping these tasks will actually encourage me to focus on what is happening RIGHT NOW. I have an icky habit of getting so lost in preparation for the missions with a future end date that I frequently miss out on the blessings right in front of me. This was one of the hard-earned validating moments that shouldn't be allowed to get lost in the shuffle. There are lessons here that I must learn and absorb before I go any further. 

It is yet another life experience which causes me to carefully examine my own definition of "success". 
Opening day was, for the FIRST TIME EVER, the ground floor of a building dedicated ENTIRELY to the Arachnoiditis Survivors, information about how they came to exist, and how they are learning to cope. 

In case I forget to mention it....this process is also key to Preventing ANYONE ELSE from experiencing a similar fate. 

The sun was shining. It was in the 70s on a long-awaited Spring Day in Upstate New York. Were people breaking down the doors to come BACK INSIDE to see this work?  To buy the art? To donate to the project? No. 

Did Arachnoiditis Survivors Make Healing Art? Did they connect with each other as they learned about the project and the art? Did visitors SEE all of the names in one place? and All of THEIR work TOGETHER showing the existence of arachnoiditis? Did strangers once uninformed about Arachnoiditis find out more? and Attempt to complete normal tasks from an adaptive, perspective-changing position on the Ostrich Cot? 
Did the Survivors get to see this 
TIME AND SPACE EXCLUSIVELY DEDICATED TO THEM/US?      YES! 

MISSION ACCOMPLISHED. 


Day 20 Was about Limited Liberty, a video of the interactive installation created with artist, Allison Midgley and the assistance of project exhibit volunteers, Kristen Kruger, Crystal Carlton, and Christell Kalkbrenner. 

"To Include Survivors from Near and Far, Names of ALL registered Arachnoiditis Survivors, including those registered for the Map of the Survivors, were inserted into prescription bottles and suspended throughout the exhibit at assorted heights to simultaneously illustrate the limitations placed upon us by the medical injury, the freedom/impairment dichotomy that comes with prescription medication for pain management, and OUR DETERMINATION TO COME TOGETHER ANYWAY." 

Limited Liberty Installed

Day 19  Was An Art For Arachnoiditis Project Presentation Video from the opening Reception of the Survivors' Exhibit with an Important Message from the Foundation for Art & Healing. This 37 minute presentation video created for the Opening Reception of the First Art For Arachnoiditis Project Exhibit is the long version of why the Art For Arachnoiditis Project is happening and the benefits of its existence.

Day 18 Was posted to the Art For Arachnoiditis Project Facebook Page
in the First Exhibit Album  

OUR SPONSORS 

AWARENESS RIBBON COOKIES Created by the Students at
The Baking Production and Management Program of
Alfred State College

Day 17 ~ Acceptance and Forgiveness are Required to Adapt

 Loving 

and Accepting 

Who I am Right Now 

Is not as easy as it should be. The shadow of the way it used to be or "should" have been will likely always be looming somewhere. The good days are the days when that shadow is short. 

As anyone following along with the Art For Arachnoiditis Project this winter knows...  January and February were Creatively, Technically, and Physically challenging mostly-non-productive weeks for me.  

I have spent a lot of time beating myself up over the tasks I didn't complete and not paying enough attention to the things I did. 

As a way to illustrate this struggle to love and accept the who I am right now, I included these Survivor Portraits as works- in- progress with the Ostrich Cot display at the exhibit. 

It first occurred to me to do this because I felt guilty about not finishing these drawings in time to frame them and include them on the wall with everyone else. Overnight, as the idea became a picture in my head, I realized that this is likely one of the most honest expressions of what it really means to adapt to Living and Working With Aracahnoiditis. The time line is seldom structured the way that we would like it to be. I suppose this is true of life in general and simply exponentially more obvious in circumstances such as this. 

In any case, I am learning that the real healing comes with FORGIVENESS. Most often, it would seem that it is a forgiveness and compassion for OURSELVES that seems to be absent-but-most-needed. FORGIVENESS does not come in the form of making guilty "excuses and explanations" for ourselves to others or in our own heads. 
It comes from the full acknowledgement that THIS is how it is and THIS is the ME that I am. THIS is what I am capable of RIGHT NOW. THIS is GOOD. I am GOOD. That is enough. 

It takes time to know that THIS is true, that our actions are enough and that we are worthy of all of the love that we so often give away to others.  

I AM EXACTLY THE "ME" THAT I AM SUPPOSED TO BE. Thank you, Amanda Palmer, for the reminder. 

Day 16 ~ Making Memories

Grandson's Fifth Birthday Cake

These are the days to remember...

Our little dude turns Five Years Old Today! Had a wonderful impromptu family gathering/surprise birthday party for him yesterday after school. After the last five months of hibernal isolation...still not sure which one of us was more surprised by our lovely visitors. 

Allison pinning the Map of the Survivors 

Finished Hanging the First Art For Arachnoiditis Project Exhibit

Thankful for the assistance of friends who stepped up to help out without making me feel like I couldn't do this thing. 

I often forget that I designed this project to Empower ALL of the Spinal Arachnoiditis Survivors. I am on that list. 

Also, thankful for the friendly yet determined reminder to get horizontal when it was evident I was clearly just chasing my tail. 

Spinal Arachnoiditis Survivors are following the Exhibit prep and event via the photo album on our Facebook page and at Art For Arachnoiditis.org.

Ostrich Cot display and Survivor Portraits in Progress
 for Kimberly, Sarah, and Karen

 

 Ostrich Cots set up for the Independent Adaptive Art Activity like the one shown in the Map Making Video. Screen Ready for presentation....

Am I Ready for THIS??

Day 15 Blessings for the Un-plugged Peeps?

TWC Service Map 4.14.15

Day 15 

Blessings in disguise

Woke up yesterday to finish framing prints for the exhibit. My BBFE alerted me to the fact that we had no internet service. 

Except for the thirty,thirty,thirty post; I had started the day NOT planning to be online at all. There was just too much to do in the studio. This alert made me feel like I had to resolve the problem. I stopped working and did the usual tests on my own network. Nothing. My cell phone was "roaming" as well. 

I re-focused and went back to the studio. This "problem/task" kept nagging at me the entire time. When BBFE left for work I asked him to call to let me know if there had been an apocalypse or not so I'd know if this was even a job for MY ever-growing to-do list.

THE BLESSING

When he did call, I can honestly say that I am not sure which gave me more relief. Was it the fact that there had been no Armageddon while we slept or just that I had a FREE pass NOT to deal with my computer at all? h-m-m?  

It was so easy to focus in the studio knowing that this un-plugged state had been imposed upon me. It made me feel like I wasn't neglecting my "other responsibilities". Knowing many others were without service also meant this was NOT a problem I could solve and I needed to release it to a higher power...a.k.a The Cable Company. 

 A huge weight was lifted and my quality of work improved. 

I LOVE the connectivity of the internet and the resources it provides. Without it I am sure I would have gone completely bonkers when I was trying to find out why I was so sick eight years ago.  As many of us I discovering, when it comes to being wired to the world there CAN be  too much of good thing. 

The struggle for self-discipline seems like a small thing in comparison to other modern global issues but it is undeniable that being plugged in 24/7 is changing the world. It is expanding so much and those who are not hooked up to that stream may be left behind. 

Are WE "blessed" or "cursed" by the digital phenomenon or is it simply one more phase of human evolution by which certain cultures will "evolve" before others? It is often assumed that the digitally advanced are the "more" evolved and the changes in the brain are simply a part of that process. But, let's pause to consider, what spiritual and intellectual evolution occurs with the choice to abstain from digital commitments and trappings? Which one is more important? h-m-m-m? 

Not a far stretch to think that the ones at the OTHER End-the source- of the wiring will be the ones running the show while the plugged in peeps will be the puppets. ...and these are my thoughts at 7:19 a.m. Explains a lot. 

Day 13

Eight years after onset of Spinal Arachnoiditis Symptoms; Day 12 was a tribute to our Arachnoiditis Angels about Remembering with Gratitude. 

Day 13 Distracted by the .... 

sh-h-h, don't want to scare it away......   s-u-n-s-h-i-n-e!  [Does secret happy dance.]

Knowing the rhythms of the moon cycles is a wonderful way to get in touch with all of the internal influences that are present in my decisions, actions, re-actions, emotions and how that determines my sense of self and place in the world. 

But, these last two afternoons of sunshine and WARM winds has been a true blessing.  In spite of having a lot of in-door prep to do for the exhibit, I couldn't resist the need to enjoy the warmth and light that has been missing from our days.

I DID (finally) do my taxes the first FOUR hours of the morning. 

...and now....

back to our regularly scheduled framing, printing, folding, typing, padding, packing, cleaning, taping, labeling, and MORE typing.

Day 11 ~ Minutes Matter: Easy Mandalas

 Adaptive Mandalas 

Mandala Making is supposed to take time. For anyone with arachnoiditis (or chronic pain of other origins) time is measured a little differently.  

Larger Mandalas like the ones from our 2013 Mandala Project lose some of their healing properties in the winter when my pain levels are high.

  
IMPROVISE AND ADAPT
Spirograph isn't just for kids. 
Combined with the Ostrich Cot; making Mandalas becomes a meditative, creative method to observe the required amount of horizontal time.

DON'T TAKE MY WORD FOR IT

Thanks to Ostrichchair.com, visitors will have an opportunity to try this themselves at the Opening Reception of the Art For Arachnoiditis Project Exhibit. 

Mandalas are a good place to start healing with art.

Day 10 ~ Magic is Happening Here

Screen shot from Google maps live
Map of Registered Arachnoiditis Survivors

Becoming our own Mixed Media Collage of the Survivors

Making Progress

The muses were awake last night putting some magic on the Map while listening to Sylvan Esso NPR Music Tiny Desk Concert.






As I worked on this I was thinking about our connectivity. 
Despite recent discontent with technology, I remain in awe of the way that I have witnessed the Survivors Sharing and posting on the Facebook Thread for the Map of the Survivors~ Survivors from Australia connecting with Survivors in Arkansas, Survivors in Mongolia connecting with Survivors in New York, Survivors in South Africa connecting to Survivors in Colorado... it is one of the greatest benefits of the world wide web for us to find that in spite of the isolating and lonely consequences of arachnoditis, we are not alone.

ART BY SURVIVORS  WILL BE FEATURED AT THE FIRST EXHIBIT 
Artist/Arachnoiditis Survivor  Accepted Entries
ArseenVanDurme ~  Art By Survivors~ Paintings: "Spring" "So I Feel" "Oil Painting #1" 
                                  and "Oil Painting #2"
 Cheryl Marcus  ~  Digital Photo Series: "Trapped" "Game Days" "X-Ray" 
 Jamie Pavlekovich ~ Art By Survivors~ Book (Digital Collage by slk) (and book?) "Fungal Meningitis"
Jack Pavlecovich ~ Arachnoiditis Survivor Portrait Recipient, Survivor's Story 
Karen Kovacik-Early ~ Digital Photo Series, "Soul Sisters"(digital collage), "Together We Fight" (digital                                         collage), "Together #2"(digital collage), 
                                   "Living With It"  (photo) and 
                                 Arachnoiditis Survivor Portrait Recipient, Survivor's Story 
                                  Video: "High Ho Silver"                 
Kenny Brooks ~ Digital Photo Series, "Braced" Arachnoiditis Survivor Recipient, Survivor's Story
 Kimberly Comfort ~Digital Photo Series, "No Promises"(digital collage), "Spinal Cord Stimulator"(digital                                 collage w/text), 
                            "Survivor Story Excerpt" (digital collage w/text),   
                                 Arachnoiditis Survivor Portrait Recipient
Linda Funsch~ Art By Survivors~Design: The Arachnoiditis Awareness Ribbon
Melanie Lamb ~ Art By Survivors, "Reaper Journal Collage" Digital Photo Series, "K-9                                                         Trainer" (collage), "Arachnoiditis In Real" (collage), 
                         Arachnoiditis Survivor Portrait Recipient, Survivor's Story
 Michelle Babcock~ Survivor's Story w/photos "Mommy & Baby"
Nicola Reeves~ Art by Survivors~Design: Arachnoiditis Awareness Logo
Sarah Elizabeth Hirschle ~ Art By Survivors~ photography: "Summer Oaks" "Celestial                                                                           Transformations "Secret Bridge", "Serenity", 
                                             "Purple Passion" and Arachnoiditis Survivor Portrait Recipient
Sheila L. Kalkbrenner~ Art By Survivors: Arachnoiditis Survivor Portraits for: 
                                                    Jack, Kenny, Melanie, Karen,Kimberly, Sarah
                                                           Painting: "Honesty & Hope (a.k.a. No Pain, No Gain) Paper                                                             Sculpture: "Still Standing" Shadowbox Installation
                                               Digital Photo Series: "Arachnoiditis Survivors" (digital collage),
                                                  "Album of the Survivors" (digital collage)                                                                                            "Speak" (digital collage) "DPU" (digital collage) "A New Way" (digital collage) 
                                                   "Cisternogram" (digital collage)
                                             Design: "Show Poster/Postcard"
Tammy Pavlekovich ~Digital Photo Series: "Ashlee & Jamie at Hospital w/Jack"
Wende Starr ~ Art By Survivors~Paintings:
                                             "Looking Through Rose Colored Glasses #1 & #2" "Butterfly" 
                                                Drawings: "Horse" "Spine With Pain Radiating Day & Night"
                                                Photography: "Spider Web" "Amish Country Horses" 
Map of the Survivors ~ 218 Registered Spinal Arachnoiditis Survivors 
The Album of the Survivors Currently 86 Survivors' Selfies Registered 
Limited Liberty (Balloon Installation) w/ Allison Midgley Artist & Advocate for Prevention