Shar - Living Beyond Acceptance
(This is my story, still unfolding, with the horizon ever extending before me. For all of us, there is more to come, more to learn and much more to discover. Break ou the bugles and kick up your heels; this parade rolls on forever.)
Exhilarating, terrifying and illuminating, this life is a crash collision course in Human Potential and I'm working my way through college, going for my Master's Degree. An eager student, I'm majoring in Mettle Crafting and minoring in Systemic Lupus Erythematosus (SLE), with the snappish Professor Wolf forever nipping at my heels.
Lupus, or the wolf, became namesake and totem of this complex autoimmune disease centuries ago when physicians compared its raw, red lesions to wolf bites. The butterfly was adopted, partly for the shape facial rashes may form but lesions and rashes are just two of this disease's countless perplexing symptoms. An adept mimic and master of disguise, this enigmatic illness keeps doctors guessing, while it lurks undetected in the shadows.
Research and medical training are finally refining their focus on this little-known, long neglected disease, playing catch-up with the wolf. Lupus so defies diagnosis that although some studies show about 6 million Americans alone have symptoms, at best, 1.5 million of them are on a first-name basis. Over half will see at least three doctors and wait a minimum of four years for diagnosis. Many, like me, will wait much longer, often as their lupus rages. Globally, it’s said 10 million people are diagnosed, while millions more seek help.
Our wolf runs with a large and rowdy pack. The American Autoimmune Related Diseases Association (AARDA
), claims lupus and at least 79 fellow syndromes. When this lupine canine crashes our party, he usually brings some of his kissing cousins, to chow down on the snacks - us. We're forced into a fox-trot with a very persistent partner and, my, what big feet this wolf has, as he tries to make us dance to his tune.
Ol' Wolfie has a taste for the ladies so about 9 times more women are bitten than men but men receive a mighty munch indeed. Those of us with predominately African ancestry get wolf-bit 3 times more than those of primarily Anglo-European descent. Folks with Mediterranean, Hispanic, Asian, Pacific Islander and Native American forebears get chewed on at a high rate, too. People like me, from multi-ethnic families, arouse this wolf's eclectic, gourmet appetite but children are his most tender morsels.
It seems the wolf was midwife at my birth, but my SLE first drew fiery breath when I was three. I was living in San Francisco's vibrant, multi-cultural wonderland, the Mission District. Just outside Grammy's victorian was the Miracle Mile, the liveliest international bazaar in the USA. Kiosks straddled sidewalks and a potpourri of goods spilled into our path. Vendors sold food, clothing, books, records, jewelry, furniture and previously unimagined essentials. A festival of cuisine, color, music and language, it was paradise to me.
Decades later, two doctors asked where I'd lived in 1950, and each one spun the same terror tale - I met this wolf at Grandma's house. That year, "Baghdad by the Bay" had attracted some unusual tourists. Word of US military biological warfare experiments on American communities began leaking in the early 1970's and these physicians had done their research. In 1977, during Senate subcommittee hearings
, the US military admitted deliberately causing infections and pneumonia, by spraying Serratia marcescens bacterium and other "harmless" agents into San Francisco's air.
(Wall Street Journal subscribers, will find "Of Microbes and Mock Attacks: Years Ago, The Military Sprayed Germs on U.S. Cities
by Jim Carlton, published October 22, 2001, now in the WSJ archive.)
While disease secretly prowled the city streets, we'd scurried back to the countryside but fever followed by penicillin injection ignited my SLE into bonfire, with my life at stake. Doses of tetracycline and sulfa morphed infections into superinfections. Allergies, nausea, stomach pains and digestive distress dwindled me down to starvation rations. I was small for my age, with severe growing pains and the palest face in my tribe. Puzzled doctors duly noted my "failure to thrive" as my lupus signaled SOS but nobody broke the code.
Like most country youngsters, I had chores to do, tending our big garden plot and large chicken flock. Home grown produce kept us and many of our neighbors fed. As rural families do, we traded eggs, vegetables, fruit, livestock and homemade preserves with dairy farmers and other industrious folks, for food we didn't raise and items or services we needed. Much of the food spread across our table made me ill but, with my SLE unknown, I was teased for being "picky".
The year of the chicken came, my fourth summer. I saw them hatch and held the downy, yellow, bright-eyed birds in my hands. We were near constant companions, since I met their needs all season. Being used to farming cycles themselves, nobody'd thought to tell me that fowl weren't friends and these would all be gone, in one sky blue and scarlet morning. Shocked by the axe, the chopping block and the screams - the hens' and mine - I turned vegan on the bloody spot.
My heart may have been rightly placed but my stomach was completely out of line. It flipped and flopped, doing inside-out somersaults, no matter what I ate. I couldn't digest most vegetables raw, stewed, fried or marinated and those were the only choices on our family menu. I didn't want to eat meat, which my body couldn't process anyway and fruit often gave me intense, vise-like cramps. I heard it said I'd "never make old bones."
As my innards grew more rebellious, my diet more restrictive, I lived on whatever behaved best and left without undue ruckus. I nibbled saltines, tortillas, canned tuna, sunflower seeds, almonds, walnuts, apples, berries, lettuce and carrots. I drank chocolate milk that was mostly sugar and cocoa, which sedated the hostile sentries stationed along my digestive tract. Deer hung, bleeding-out, from the cottonwood tree, as I tended a garden I couldn't eat and animals I wouldn't, if I could have.
At harvest's end, neighboring farmers drove up and down our roads in trucks full of fresh surplus produce, free for all. Children climbed over truck sides, handing nature's beauties down into waiting arms. There were green striped watermelons, sun bright pumpkins, velvety peaches and apricots and juicy plums. Folks shared their bounty, filling canning jars, freezers and pantries for the leaner months ahead. My stomach rebelled at most of these riches but blackberries and strawberries clambered over fences and into my grateful tummy.
As my symptoms progressed, I coped quietly, working summers and part-time throughout school. Mine was a big family and most country kids were expected to do their part. On my own time, I'd read and write, ride mustangs, motorcycles and hike miles for pure pleasure. Other days, I couldn't walk across the room and some, I'd sink into sudden puddles, without a muscle to hold me up. Doctors ran tests, filled me with antibiotics, scratched their heads, patted mine and passed me on to the next physician.
Then, right after my twentieth birthday, I hemorrhaged into unconsciousness and woke to find a wall of white coats surrounding my hospital bed. When I quipped, "Who's taking care of all the other patients?” the wall stood still, stunned silent. I'd unexpectedly awakened from a deep coma. Having tried everything but exorcism, those shocky docs had decided my demise was a done deal.
My medical options shrank to surgery every 3 to 4 months or death - do not pass Go, do not collect $200, do not make plans that don't include bedpans. Being a good patient with a strong survival streak, I complied but each unkind cut nearly did me in. Every medication created more problems than it solved and more complications arose, until the search for a magic bullet became a game of medical Russian Roulette.
Advocating for others while coping with my SLE, I've seen flesh and blood people fade into invisibility as they step over medical thresholds. Many medicos are skilled and sensitive but some visitors to my body behaved as if they owned it, knocked me cold and ransacked the place. Any illness can be aggravated by those who view us as lab rats, to be seen, poked, prodded and bled but not heard.
Dr. Jerry, the best of them all, admitted, "Medical science has reached the point where we can do you a great deal of harm but not the point where we can necessarily repair the damage." He'd seen me rally against stacked odds time and again and he’d always acted with intelligent care and compassionate dignity.
Unable to decrypt the lupus enigma, a slew of specialists agreed I was beyond hope, so at the ripe young age of twenty-six, I was left to rot at the bottom of the veggie bin. Doctors who'd called my continuous rebounds miraculous didn't wait around for my resurrection. They'd surrendered but I'd survived the unsurvivable and like a reprieved fish, released from the hook, I wriggled back into the flowing stream of life.
Science may have been stymied by my lupus but I couldn’t afford to give up. My wolf went so wild that he finally blew his own cover and we cracked the case. According to the American College of Rheumatology, there are 11 clinical criteria for SLE, with only four positives needed for diagnosis but, lucky me, I've had 'em all. With my secret nemesis unmasked, a rabid werewolf was revealed and, making the sign of the cross, doctors boarded up their buildings.
After years of misdiagnosis, multiple complications and cycling medical traumas, I was in constant, excruciating lupus flare. Between surgeries, I'd done college and worked in classrooms, libraries, nursing homes, canneries and newsrooms. With my unpredictable, uninsurable health, adaptation became a well-honed survival tool. Then, Ol' Wolfie banged my brain, with the first in a series of strokes that would challenge all my resources.
Once blessed with a near photographic memory, suddenly I couldn't remember my birthdate, address or phone number. I didn't know left from right, couldn't decipher written words or numbers and lost my place while counting to ten on my fingers. It seemed that common sense and science had mutually decreed that woe was me and that was that but, too stubborn to slip into a shroud, I set out to save my life.
Left to my own devices, I devised my own physical therapy. Prayerfully, meditatively, doing breathing exercises, feeling oxygenation blessing my anatomy cell by cell, I befriended my battered body. Exercising isometrically by gently contracting, holding, then releasing one indifferent muscle at a time, I nudged my body to awaken, remember and respond.
Soon, I could drag myself off the bed and across the floor toward the bathroom - my aversion to bedpans was a great little motivator. One twenty-foot round trip was an all day excursion, with frequent breathing spells, as I re-educated my legs and feet on their roles in this forgotten routine.
With primers, notepads and pencils stashed along my route, I spent my downtime studying readin', writin' 'n 'rithmetic. Stretching my mind and flexing my fingers in the language of the deaf, I sparked remembrance and synapses as I slowly reconnected the scattered dots that star-crossed my shattered memory.
After each brainquake, I dug out from the cranial avalanche, working my way through the wreckage, rising ragged from the ruins. Gradually, I built enough strength to grab the furniture in case my legs fell down on the job and I dragged myself up. From sliding shuffles to baby steps, I slowly began to walk again. I fainted often, gone like a flash in mid-step, fracturing my foot, toes, tailbone, fingers, ribs and nose, on the trek to win my life back.
Zealous to save me from an unknown adversary, doctors had gone ballistic, emptying armories into me, in biochemical warfare. Stewed, simmered and basted in a caustic brew, I was so toxic, mosquitos preferred to bite each other. Pickled and pixilated, I slowly detoxed, drinking pure spring water and enriched juices, nutritious broths and purees.
I progressed anew after every stroke but without medication to baffle my banshee, walking was painful, exhausting and downright dangerous. The whole world was bustling right outside my door and I wouldn’t let the parade pass me by. An electric wheelchair became a silver skyrocket and my round-trip ticket to ride. Donning my brightest duds and my biggest smile, I'd slip on my kneeboots, hike up my attitude and cruise the crowd.
Sitting staunch, in feathered beret and bright plumage, I encouraged friendly grins and most folks were fine as I whirled by. Still, most wheelchair junkies - strung out on steel - didn't circulate much then and I nudged some preconceived notions. There were one or two loose wheels who tried to climb the chair, a couple who climbed the store displays and some who were out of uniform until their brownshirts came back from the cleaners.
In my travels, I made new friends among folks on heels and those on wheels and, standing up or sitting down, we met on even ground. Riding my chariot with eyes wide open, I learned more of human nature, our secret fears and our hidden strengths, than equal footing could have taught. As I kept stretching, rediscovering and rebuilding my being, with my brain busily rewiring enroute, "Appreciation" became my mantra and this simple prayer still permeates my life.
Lupus is a changeling, unique in each of us, making individual self-defense creative and diverse. My remedies include an organic plant-based diet, herbs, NSAIDs, music, books, comedies, caring family, good friends, compassionate caregiving, the finest of physicians who is also my true friend and my useful lupus work . My transfigured SLE is now more Jekyll than Hyde but I'm not the anomaly doctors once believed - I'm just one of the often uncounted and usually unheard.
Scientifically, lupus and its fellow autoimmune diseases are linked partly to our inherited genes and greatly to our environment. Many of us can trace them through our lineage and they twine my family tree like kudzu. It seems a combination of ancestry, surrounding conditions, misdiagnosis and not-so-divine top-secret intervention has kept the wolf at my door.
Because my SLE is antagonistic and easily incited into flare, I must be very cautious about exposure to others. This wily werewolf's alienated any family and friends who just don't get it and can't take it impersonally. From childhood, I'd been a rescue rider for my family and, between blazing flares, I helped care for my mother and my diabetic sister before their deaths.
My sister and I were toddlers when she lost most of her hearing to fever, tangling her lines of communication. Sis's accented speech was as difficult for hearing people to understand as their hushed mouthings were to her. She became shy when unsure of others but we were very close. Sis loved music so I sang for her and when she mastered American Sign Language, she taught me and we sang together, with flashing fingers and soaring spirits. Years later, diabetes took her life. In tribute, I've written of her in On Butterfly Wings.
At twelve, I began working half school days as a teaching assistant for children and adults with developmental challenges, including Down Syndrome. I felt tiny as a mouse and less equipped to instruct but little by little, I grew, with Sis and my students as mentors. I learned early on that focusing on assumed limitations doesn't just sell others short; it keeps us short of the awareness it takes to get past that dehumanizing concept.
This disease has the power to transform my bones into spun glass, shrivel my kidneys and conjure my fingers into claws. This cunning conniver can turn the tooth fairy against me, drum on my lungs, stroke my brain and play hearts tournaments in my chest. The Big Bad Wolf's been huffing and puffing up howling hurricanes for over fifty years but he still hasn't blown my life down.
Lupus hasn't strangled my sense of self or crippled my ability to lead a worthy life. I don't waste my life weeping over past losses or dreading the future - surviving with regret would tarnish this gift I love exploring. I don't live my life inside self-imposed walls or even wholly within my body but within my potential, which can only be limited by my ability to envision life on a deeper level and my determination to follow through. So, yes, I've got lupus, but it ain't got me.
I feel kinship with concentration camp captives and prisoners of war who've survived confinement, isolation and torture to emerge with expanded appreciation of life. Nelson Mandela lived so fully beyond his over twenty-seven years in prison as to become President of South Africa, leading his embattled country beyond apartheid. By reconnecting to life in a deeper, broader, more dimensioned mentality, he developed a stronger connection to all life and a definitive realization of purpose.
For me, life well and truly lived ultimately has less to do with the space we occupy or the mobility of our bodies than it has to do with what occupies us and the mobility of our minds and spirits. I agree with the imprisoned poet John Donne, who said, "Be thine own palace, or the world's thy jail." Physicality can't cripple us so totally as mentality surely will. Life may demand more of us than we wish to contribute but if we can increase our courage, expand our minds and extend our grasp, we can accomplish far more than we imagine and become much more than we ever were.
I dig up research, translate medical mumbo-jumbo into ordinary english and write it up, while the wary wolf catnaps, one eye cocked, at the foot of my bed. With my cats curled up beside me. I investigate and share information that can help people with lupus or other autoimmune diseases, those who love them and folks who want to avoid those illnesses.
In my work and throughout our online community, good friends and kindred spirits inspire and invigorate me. We're resilient strivers determined to thrive. Together, we're changing the world's awareness of lupus and chronic illness. The
friends who share their stories here face the hazards of their own lives with heroism and humor. They didn't see a winning hand in the cards they were dealt so they reshuffled and now, despite the joker in the deck, they're coming up with aces. Every day, they carve courage from their rocky roads and blaze trails through unknown territory, that others may follow. I am truly honored by the company I keep.
Once we lupies were cloistered, alone with our secret shadow, the insatiable wolf. Our medical care was comprised of guesswork, stitched into patchwork, bound by superstition. Our treatment, if any, was based solely on which symptoms waylaid us at the time. Many doctors lost hope and threw us to the wolves. Once, most of us died very young. My grandmother's twin, who had SLE and diabetes, died when she was only nineteen.
In our Dark Ages, doctors were blindfolded by a lack of research and training, their ears plugged with dogma. Now, "orphan" diseases, including lupus, are studied internationally. The blindfolds are coming off and our voices are being heard. The times are changing and we are catalyst to that change. We healthcare warriors represent a new gathering of the tribes and the threads we string together online weave our safety net.
In 1808, Tecumseh, who was philosopher, leader and spiritual mentor of the Shawnee Nation, advised his people, "So live your life that the fear of death can never enter your heart--- Love your life, perfect your life, beautify all things in your life. Seek to make your life long and its purpose in the service of your people". Nearly 200 years after "The Shooting Star" scattered these sage sparks, they still shimmer with insight.
This work is so stimulating, clarifying and soul satisfying that it makes my journey, lupus and all, a pilgrim's progress. Learning and growing beyond presumed barriers to surmount the supposed limitations of this illness and being able to use this experience for the good of others is, for me and for my friends, a transcendent fulfillment of purpose.
Much like Mark Twain's, my death wasn't so predictable, after all. Somebody must've dropped the crystal ball. By now, I've outlasted the doctors who'd held the portal, expecting me to exit first. After over 30 years with zero life expectancy, I endure. Science is still learning and so are we, discovering possibilities in our world, ourselves and in each other that we never knew existed.
I don't relate to life in terms of restrictions but in terms of creating or recreating options and exceeding preconceived grasp. It hasn't occurred to me in years that my life is less than it might be - it's just different than I'd expected. My life is my gift and my responsibility, progressing as far, as dimensionally, as my imagination and determination can reach.
© Shar Phoenix