A Beautiful Mosaic

(For the Lupus Magazine: September 2011)


            Two years ago, as I ambled through Istanbul and marveled at the sights, I eventually ended up at the Grand Bazaar as most tourists do.  Through the seemingly endless stalls and hallways selling carpets, jewelry, clothing, and a gregarious array of items my eyes caught many things.  One item, or items per se, that continually fluttered into my line of vision were glass lamp shades.  These beautiful pieces of handmade artisan delight cast irregular rays of light from their covers.  Colors of every shade shimmered, but the mosaics of the lamp shades made the light bounce and literally dance around the area. 

           The lamps are made from glass shards, blown glass, and colored glass.  Some are singular in color and others depict designs and images.  In the end, they are all connected through their beauty and simplicity.  A small cachet of everyday use, one of commonplace within homes and businesses, and something often glanced over because it is seen as a product of the everyday mundane.  Yet, these lampshades are art of their own making.  They reform light, take the shade from a traditional cloth to glass, and bring a different look to every viewer and surface.  In many ways they resemble the body and life of a Lupus patient. 

The rash of Lupus is misshapen, ugly, varied in reds and purples, usually attacks our faces and stands out like an overdressed Cinderella at the local sports bar.  It stings, it burns, and it aches.  It makes you want to cry.  Or, if you are like me, it makes you spew delightful obscenities at your mirror.  On the other hand, the bruises are purple and surface in any unfathomable place.  Sometimes they are über special and appear under your nose, on the bridge of your nose so that wearing glasses is painful, and on the tip of your writing finger.  Joy.  Total joy. 

Then, of course, the joints swell and take on their own new shapes.  Though reading about the endless ways Lupus can reshape, retexture, and recolor the body is . . .well, it is just depressing.  But, with everything in life, there has to be a bright side.  Or at least, if you are one of the millions with the stupid butterfly weaving its endless path through your body and dreams, you have to find a bright side.  Well . . . Every bruise, needle stick, bruise of the week and hour, misshapen rash, and procedure scare are pieces of glass fused together with glue, clay, and paint to create the multi-colored picture that we are. 

Each bruise can tell a story.  They can be from a trip to the grocery store, rough-housing with the dog, or embracing your great love affair in a too-tight final goodnight kiss as you leave for the airport.  Waking up with them, and being unsure where they came from, can derive from the high adventure dream you had of rock climbing to the top of Mount Everest in a pair of Manolo Blahnik sling backs  while you slumbered.  The rashes can be from the normal course of the disease, or they can be from your own making.  It could be from a summer’s day when you felt alive and Lupus-free, spending long hours absorbing sea salt and vitamin D at a nearby beach.  They can be from cobbling together twenty bucks and gaining lawn seats with your friends to a rock concert to wake up without a voice the next day.  They can be from a long run in preparation for a marathon.  In the end, they are still rashes and bruises.  But, each tells its own story.  They are the story of your life, your time, and even your personality.

Lupus defines the people who live with it, in many ways.  We can wallow in the misery of daily aches and pains, phantom symptoms, kidneys revolting that you must use them on a regular basis, chest pains that make it difficult to breathe, and the list is endless.  Beyond the horrible life Lupus can make, it can also make an interesting one.  A life where that you become eclectic with days of energy and life and others where you “recover.” The bruises color you in ways your friends can not duplicate.  Swollen joints, while painful as all get out, make you unique in a crowd.  The rash . . . transforms into this season’s new “it” blush only available to a select few and is unobtainable to most.  Much like the glass lamp shades I became enamored with in Istanbul, the ills of Lupus are an accessory to life.  They change with the seasons, with the light, and with each person.  The Lupus patient is now the metaphoric viewer of those lamp shades.  Every time you see her (or him) the picture is different.  The purple bruises deepen, they fade, and they reform.  The rash grows and shrinks.  It hides.  The light of the lamp shades plays with your eyes, always changing, and making news pictures on the walls as shadows dance with the light and lines of clay connecting the small pieces of glass together.  They, the Lupus patient, become a beautiful mosaic themselves.