This awareness raising necklace was created in honor of the non-profit #ME Action’s #MEAction Network #MillionsMissing ,
a global movement to raise awareness and fight for recognition, education, and research, for people living with Myalgic Encephalomeyelitis (ME) or ME/CFS). #MillionsMissing was named for those of us who have gone missing from all or some of life–those who can’t interact with their own children, go to school, work, attend gatherings and holidays, go outside or those who can do these things only some of the time. It also acknowledges that many have disappeared from the world and the medical community has taken little notice or care. I dare say we have all been victims of medical neglect and abuse by the medical establishment at one time or another. #Million’s Missing movement is celebrating it’s 6 year anniversary and combines political action with events and providing support to those with ME.
#ME Action itself is run by Jen Brea, director of a truly groundbreaking documentary, UNREST.
My first interaction with #ME Action, including the movie UNREST, came at a time in my life where I was very sick and isolated. Both the group and the movie felt like a new home and gave me the support and hope I needed to continue trying new medications, connecting with the ME community for support, and ultimately grieving my past life and discovering a new one.
5% of every sale will be donated to ME ACTION
172 total views, 1 views today
This necklace is made from animal free polymer clay. To me, the clay is odorless. The letters are created individually using stamps and embossing powder. The shoes, the symbol of the missing, are made of brass (and were purchased!) The necklace is gold plated. The length of the entire necklace from its tip to its end is 44 inches. The length of the necklace without the clay is almost 15 inches. I use an acrylic varnish to coat the letters. When its dry, it is odorless.
I’ve had Myalgic Encephalomyelitis (ME), a neuroimmune disease for 21 years. ME is a “mysterious illness” (meaning there has been very little research dedicated to it, I won’t get too political here but women are much more likely to have ME than men) It ranges from severe to mild. I now live in mostly a moderate version of it. I function at about 60% of who I once was. When you have ME you pay for overdoing it– one day you do 15 minutes of yoga, the next week you are bedbound. You learn to live permanently on this tightrope, doing as much as you can without falling off. We all fall off.
For myself, ME can be extremely unpredictable. Some days I live the joys of being outside with my dog, working, and after a long nap, making art. Other days/months, I have the feeling of poison coursing through my veins, display neurological symptoms, and experience pain, vertigo, and extreme exhaustion. On my worst days, laying still with my eyes closed in the dark, is the only way to get through it.
To live with any grace with this illness, I’ve had to shed much of my old identity and embrace a new one My new identity uses a wheelchair as an act of self-love, participates in disability activism when able, is kinder, more present, and savors the joys of life that have become so, so much richer.
I’ve been crafting since I was 13 years old. I’ve dreamed of selling some of my creations online for years, but I never had the bandwidth to do it. Lately, with a new medication, I’ve been gifted more time out of bed and more time indulging my love of art. For a life counted my hours out of bed, I am present for each moment I am gifted the opportunity to create art.