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) and ranges from severe to mild. I now live in mostly a moderate version of it. I function at about 45% 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.
When you enter the world of chronic illness you enter a parallel world. ME is 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 says: “I’m grateful for my past opportunities to travel, to pilot criminal justice alternatives at work, to take art classes, and dance up a sweat in the silliest ways.”
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 love my partner, my family, my friends, more deeply. Three hours of jewelry making or painting has become nearly as fulfilling and exciting as jumping on a plane to Sri Lanka.
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 creating. I now truly know what a labor of love is. My work is a celebration of life, my life, my hours, my moments.