"Hey, mister, can you tell me where a man might find a bed?
He just grinned and shook my hand, no was all he said."
I've blogged quite a bit about Beads of Courage here, but if you need a reminder, BOC is an arts-in-medicine program that provides beads to children coping with serious illnesses. Beads are intended to represent the steps of the child's medical journey and to help them tell their story of treatment and courage.
Purchased commercial beads are given for relatively routine procedures, a blood draw, a needle stick, a chemo treatment. Donated artisan lampwork beads, known as Act of Courage beads, are given for treatment milestones, such as the end of a course of chemotherapy, surgery, and sometimes just for when a patient is having a really rough day.
From the website.
The program helps to decrease illness-related distress, increase the use of positive coping strategies, helps children find meaning in illness, and restores a sense of self in children coping with serious illness. The program also provides something tangible the child can use to tell about their experience during treatment and after.
I've been involved with Beads of Courage at a variety of levels since I started making beads in 2008. I've donated Act of Courage Beads. I was one of 30 bead artists selected for the 2013 Inaugural Year Beads of Courage Bead Artist Hall of Fame.
I've been an Artist-on-Call to make Dream Beads. Each child gets a postcard that says "If I could have my Dream Bead it would look like: ___________________." I've made a a Storm Trooper bead, a Buzz Lightyear bead, a "Minnie Mouse with a hot pink bow on her head" bead, a Batman bead, and a bead with a "Robin sitting on a twig looking towards brightness out of cancer perched on one leg."
I've participated in the Bead Design Challenge program where BOC invited children at 10 hospitals to design a bead bead based on what words like love, hope and spirit meant to them. Each of the top designers were paired with a bead artist to bring their design to life in glass. I was asked to reproduce in glass a buterrfly designed by a Beads of Courage member from Lucile Packard Children's Hospital. I received an honorarium for the 25 butterfly beads I created.
Two fund raising e-books for BOC - Hot Glass for Cool Kids, Volumes 1 nd 2 - included tutorials for kid-friendly beads that were donated by me.
My beads have been included in exhibits at BOC headquarters, including "heART that Matters" and "Beads in Bloom" as well as in the Global Butterfly Project at the Tucson Children's Museum, that memorialized the 1.5 million children who died in the Holocaust, and honored the survivors. The exhibit included 418 glass beads donated by Beads of Courage supporting artists to honor the life and legacy of a young woman who lost her battle against cancer on April 18, 2015.
For the past few years, Beads of Courage has been purchasing bead pairs from me at a discounted price for inclusion in their Carry A Bead kits. The program is a fund raiser where particpants purchase the kits, carry the beads, keep one, and return one with the Story Card telling where the bead was carried. Each kit contains a matched pair of beads on a large safety pin, a Story Card, a Carry A Bead sticker and Team tag, and a string to start a personal "strand of support."
It's not important where the bead is carried, whether it goes international jet setting or just to the grocery store. The idea is that the bead has been carried by someone who cares. Sometimes there are sponsorships where beads are carried at special events. I've made big-hole bead pairs that were carried in the Miss South Carolina USA beauty pageant and beads in team colors - brick red, desert sand, black and white - that were carried by the NHL Phoenix Coyotes.
Last year, I decided to carry my own beads for BOC when we went to California for my cousin's wedding. I carried three very large beads, took photos of them along the way, chronicled their travels here and on Facebook, and sent them to BOC along with three photo montages I made with the pictures.
This April, I carried a whole string of beads at Big Bend National Park. I posted about the program on Facebook and made stickers for each bead with the details of their journey, bagged each bead with a sticker on my business card, and sent them to BOC.
When we went to Santa Fe, Chaco Canyon and Canyon de Chelly in May, I did the same. Again, I mailed them to BOC on cards with stickers that said this.
Bead carried to Bandelier National Monument, Los Alamos, New Mexico;
Chaco Culture National Historical Park; Canyon de Chelly National Monument, Chinle, Arizona
I was so happy doing this.
Then I got this letter from BOC.
Hi Elizabeth!I was in the parking lot of the grocery store when I read this on my phone. I felt gutted.
Thank you for sending in CAB beads and for your donation. I am so sorry to tell you this, but we can't make the beads you carried Carry a Bead beads. We have a protocol with Carry a Bead, and each bead needs to be accompanied with a Story Card that comes in the Carry a Bead kit. This is a fundraiser that helps us raise funds for other programs. If you would like to continue carrying your own beads, we can send you Story Cards with a donation. All Carry a Beads must be accompanied by a Story Card. I apologize for any confusion.
I love seeing your beads, and I wish we could put them in the program with your business card describing where they have been, but unfortunately we must follow our program guidelines to be fair to other artists.
With love and care always, etc.
My first impulse was to sit there and type a reply, but I made the affirmative decision to be mindful, to calm down and think over how I wanted to respond.
I gave it a lot of thought. I do understand why they might not want to include my business card - which was just a handy piece of cardstock the right size to fit in a bag with a bead - but why not just offer me Story Cards? Did BOC want me to purchase kits as a donation when I already was donating the beads, when the beads I carried and donated were much more substantial and intricate than the beads in the kits?
To help me think it through,I drafted several versions of a response. The last and best draft is this one.
Hi Angeline! I'd be happy to complete Story Cards for the beads, depending on what you meant by "with a donation." Please let me know.But in the end, I didn't send it. I really have no words. It's their program, their protocols, their guidelines and I can't tell them how to run it. It's not up to me to persuade them to run it differently. I'm hurt and a little angry but I don't want to hose up my relationship with them. The kids will still get the beads, and although they won't know that they've been carried, I will know.
I know a lot of people like to follow the journeys of my BOC beads, on Facebook and on my blog, which is also a way of raising awareness for the Carry-A-Bead program.
By telling where the beads traveled, I hoped to make them more special, personal and meaningful. As it says on the BOC website "Your commitment to care will connect with a child or teen who receives the bead you carry."
It would be great if there was a way for me and other artists who donate beads, and who would like to carry beads, to participate in the program.
And face it, I admitted before all this happened that by carrying beads and posting about it on Facebook, I might be guilty of being an attention-seeking diva. Does it really matter where the beads have been? They are still just beads, small trinkets made of glass that don't absorb the atmosphere or ambiance of the places they go, the visceral experience of the person they go with. They are only invested with the majesty and magic of the places I take them in my imagination.
They are inanimate, insentient objects, not living, breathing things. This is not to say they don't have meaning, but their meaning is intrinsic, integral. After the flame and the kiln, they aren't changed or enhanced by travel.
You can't teach them to feel. You can't teach them to understand. You can't teach them to communicate. You can't teach them to love.
So I have made a decision. I will continue to carry beads and I will post pictures on Facebook and I will reference the Carry a Bead fund raising program, in case any of my readers want to contribute in that way. I will continue to donate Act of Courage beads. If BOC asks me again, I will continue to make Carry a Bead pairs for their kits.
But I don't need to have a dog in this fight. I don't need to have any monkees in this circus.
And there are times when silence speaks more eloquently than words.
I pulled into Nazareth, was feeling 'bout half past dead
I just need some place where I can lay my head
Hey, mister, can you tell me where a man might find a bed?
He just grinned and shook my hand, no was all he said
Take a load off, Fanny
Take a load for free
Take a load off, Fanny
And you put the load right on me
I picked up my bag, I went lookin' for a place to hide
When I saw Carmen and the Devil walking side by side
I said, hey, Carmen, come on let's go downtown
She said, I gotta go but my friend can stick around
Go down Miss Moses, there's nothing that you can say
It's just old Luke, and Luke's waiting on the Judgment Day
Well, Luke, my friend, what about young Anna Lee?
He said, do me a favor, son, won't you stay and keep Anna Lee company?
Crazy Chester followed me and he caught me in the fog
He said, I will fix your rack if you'll take Jack, my dog
I said, Wait a minute, Chester, you know I'm a peaceful man
He said, that's okay, boy, won't you feed him when you can
Catch a cannon ball now to take me down the line
My bag is sinking low and I do believe it's time
To get back to Miss Fanny, you know she's the only one
Who sent me here with her regards for everyone
Take a load off, Fanny
Take a load for free
Take a load off, Fanny
And you put the load right on me.
(The Weight, Robbie Robertson)