When I read that Seth Apter was launching another Buried Treasure adventure it wasn't difficult to figure out what post I wanted to use. This post (published last year) is the essence of who I am and why I am an artist. Thanks, as always, to Seth, such an amazingly creative artist and even greater person. He shares so much of himself with this community and for that I give him thanks. Extra appreciation for the support he so easily provides, just because he's that's kind of guy!
Invisible Illness (Awareness) Week has begun! In keeping with the theme, another of my choices is to be my best possible self. And that includes reaching out, sharing, caring, helping when I can... all qualities of being a good friend. There's an old saying, to make a friend you first have to be one. True, but. Sometimes those of us with chronic illness get overlooked, passed by as though not being able to able make the party means we don't need to get an invitation.
The text I used in this piece of art, called Thoughts on Friendship, is an excerpt from a friendship 'manifesto' I wrote several years ago, after experiencing what I call being tossed from the merry-go-round. When life as I knew it ended and, unlike those with visible injuries and acute illnesses (especially cancer - God forbid), the carousel kept right on turning without me. Don't get me wrong, my family has always been really supportive and I do have good friends. But there were a couple of years when, along with being really sick, I felt isolated, lost, alone. Walking away from my business, my horse, my fiction-writing venture, my social identity, my life, turned out to be far more painful than I'd bargained for; it was, in a word, grief.
We chronics endure repeated, sporadic grief cycles because we mourn the loss but there is no end. Just lots of beginnings, I can now say with gratitude. But before the warm fuzzies there was pain, feeling abandoned, let down, forgotten and it took time and effort to mend those wounds. The (almost) funny thing is, I was taking so much medication that for a few years I did look fairly sick. But in a vague, perpetual sense. Three years ago I scaled back on the prednisone and lost the moon face and extra 50 lbs. and that's when the invisibility factor really hit. Hard. People said things like, "oh, you're back" and "you seem like a completely different person" as I struggled through an evening. There wasn't an obvious reason in the world for the fatigue gnawing its way from the inside out, the cognitive disfunction (brain drain) that settled like London fog, the flu-like feeling that is my last-chance signal to get the hell out of wherever I am and go to bed! I've had lots of practice. I cried, grieved, learned the bits and pieces of acceptance, made lots of art and built a close, fabulous new community of online friends with whom I communicate regularly.
So now, when I do venture out of my studio wearing my former-sized (healthy) clothes, jewelry and makeup I no longer even think about guilt or apologies. I am fierce. And I'm a better friend now than ever before. And my friends here, the ones who really know me get it, and that's enough, for now.
Following is the entire piece - I welcome thoughts and comments about attributes I've overlooked, points I may have missed, i.e., YOUR opinion.
Happy Tuesday - hope it's creative and filled with friendship.
Thoughts on Friendship
When you think of a ‘friend,’ who comes to mind? Someone with whom you can go to a movie or fishing? A neighbor who always has a cup of sugar, the person who sits next to you at church, school or work? Or, a person with whom you can entrust your life, your deepest fears, dreams you’re afraid are too big to come true?
Friendship can be defined, classified, measured in so many ways. Perhaps the most important element is simply the willingness to be there. To be tuned to the fine strings upon which our friends’ lives are balanced. To reach for part of the burden when there is immeasurable grief or sorrow. And to multiply the joy of triumph, celebration, good news.
Authentic friends speak the truth even when it isn’t universal because there is freedom to reveal oneself and an openness to another’s worldview. Friends don’t quit when the air grows heavy with misunderstanding or tension. They work harder to breathe instead. Connecting with a friend at the soul level is sharing the life force that keeps us trudging, skipping, lurching, running toward whatever our destination might be. They are the fuel that sustains our journey. The food that fills our longing, hunger, blindness so that we might walk closer to our true path.
The world is full of magic. The way leaves swirl in random patterns through the air in fall. In spring when the first evidence of new life comes in the purple and white crocuses urging their way up through matted yellow grass. It is the triumph that comes with achieving a personal goal. A letter or phone call or hug given at the exact moment that it is needed. The fullness of spirit after sharing a meal.
It is also sick and cold and dark. Bombs, terrorists, pornography, insecurity, accidents, extinction, natural disaster, illness, loneliness. People, material possessions, financial security, peace, health and happiness can come and go so quickly that our lives can be changed in a single moment. What do we do when confronted with the raw instability of life? When the unthinkable happens, our world is shaken, or compromised? Most of us turn to those whom we love, and who love us back, in spite of our flaws and failures. This is the reality: the only tangible worth of living in this world is the people with whom we fill our lives.
Without these relationships all of the glory and accomplishment, health and happiness, is poised on a shell that could crack under the slightest pressure. Who are those nearest and dearest to your heart? Have you invested in them all that they are worth to you? Open your heart, reach out and whether or not you are needed, be there. Breathe each day the fragility and wildness and wonder of life and love.
Celebrate yourself and your friends. Know that I celebrate you.