My Birth Defect and its Impact on My Life

Spica Cast

As usually happens, this blog article started out as a comment in response to someone’s Facebook post and metamorphosed into the following essay.

Fifteen years ago, I underwent double THR (Total Hip Replacement) also known by medical professionals as Arthroplasty.

I entered this lifetime in the year 1948, arriving with a yet invisible Karmic defect: congenital acetabular hip dysplasia (the ultimate “pre-existing condition”). Unfortunately, no one discovered the problem until I started walking. By then, the cartilage had ossified, which meant that to realign the joint, I, and by default my parents, faced an undetermined period of corrective therapy. (Today, a simple physical examination performed at birth can usually identify the condition) My pre-school years were unquestionably more of a trial for my long-suffering parents than for me.

Alice and Norman, pioneers that they were, envisioned the grand adventure of traveling to Australia to raise their family. I was a toddler at the time, but I seem to remember the two of them sitting at the kitchen table in Jonesville, New York, poring over maps and brochures, excitedly picturing the possibilities. Later I learned that they also considered settling in the mountains of Colorado until my prognosis dashed their dreams.

The underlying deformity (an abnormally shallow acetabulum coupled with a flattened, severely misshapen femoral head) turned out to be not only serious, but rare. A total dislocation of the left joint forced a noticeable and potentially problematic size and length disparity between my left leg and my right. Early onset of osteoarthritis is common with this type of birth defect.

Wikipedia explains that this condition may be due to a hormone imbalance carried down through the generations. Now I am more eager than ever to receive my DNA results from Ancestry.com, although it may not include the details I’m hoping for since I chose not to order the extended report which focuses primarily on health issues.

Reading over Mom and Dad’s extensive hand-written notes, I learned that my first harness was the kind with the giant padded pillow between the legs to keep me from bringing my knees together, which would have caused further dislocation of the joints.

I soon graduated to a full cast that encircled my waist and extended to my ankle on the left side and to my knee on the right, completely immobilizing my pelvis and both legs in the “frog-leg” position. The doctors put me to sleep for the procedure. When I woke up and realized I couldn’t move, Mom reported that I cried. I cried all the way home in the car. Not until we returned to a familiar setting did I begin to settle down. Eventually, I accepted that I was not going to be able to move my legs and figured out how to fall asleep on my back.

Later, a new, less restrictive cast (called a Spica Cast) allowed me to move my right leg while the left side remained immobilized. Changing the cast proved a traumatic event for me. I became convinced that the doctors would accidentally saw off my leg during the procedure, causing me to scream pitilessly for my Uncle Eddie until they finished. (Why Uncle Eddie and not Daddy? This I can’t explain.)

The Orthopedic Pediatrician gave Mom and Dad the grim news that I would need to wear a cast for a full year. I can only imagine what parenting an active toddler in a full body cast must have put them through. Understand that this was the era of cloth diapers, long before the advent of Huggies and Pampers!

I vaguely recall a series of harnesses, slings, and splints which followed the cast, along with an unsuccessful trial pair of crutches. The apparatus I remember best was the hip abduction brace which encased my left leg from hip to foot and allowed a greater range of motion than any of the earlier contraptions. The doctor recommended I wear the brace at all times, except bath time.

During my frequent visits to the Hospital for regular progress exams, the doctors always told me that someday I would need hip replacement surgery.

An employment opportunity arose for Norman in Fort Lauderdale, Florida. Due to a recent housing boom, construction jobs were plentiful. A buddy of his, excited by the prospect of good paying, steady work, encouraged him to leave New York State and join him in sunny Florida. So, he and Alice bought a trailer, hitched it to their station wagon, and loaded up the back with me and little brother Stevie along with all our possessions, and off we went on a quest of another kind.

I clearly remember the day the brace came off for good. I think I was four years old.  Standing on the hospital bed looking down at my mother, I obediently kept the weight off my left leg as I had been taught. “You don’t have to do that anymore,” Mommy explained cheerfully. “You can put your foot down; it’s all right!” Tentatively, cautiously, I lowered my left foot. Mom lifted me down from the table and together, hand-in-hand, we walked out of the hospital unaided.

For the remainder of the afternoon, I worked on perfecting the art of running, dashing from one end of our patio to the other until a crowd of curious kids gathered to watch. My only regret was finding that my ability to “gallop” no longer felt the same.

Being more the artistic type than the physically active athlete allowed me to get by without too much pain and suffering as I matured, other than the occasional bout of sciatica and a goofy little limp, which I always considered part of my charm. My friends told me I walked like Charlie Chaplin.

By my late forties, however, things were starting to get bad. The cartilage had all but disappeared, leaving me with excruciating bone spurs and advanced osteoarthritis. I used to tell people it felt like driving around in an old beat-up car with no rubber left on the tires – just the metal wheels. After a while, the rims themselves bent and rusted and the Old Gal became destined for the junk yard.

I delayed surgery because of a lack of decent health insurance. When I could no longer tolerate the chronic aching, grinding and clicking, and the cramps that aggressively clutched at my calves and my toes, I finally summoned the courage to call my local Social Security office. I remember crying as I described my predicament to the hapless clerk who picked up the phone that day.

Horror stories abounded about people with disabilities not qualifying for benefits. I worried I would need to hire an advocate to fight on my behalf. Fortunately, my Mom took meticulous notes from the day of my diagnosis and kept track of every X-Ray and doctor visit throughout my childhood. In addition to her excellent record-keeping, I also had archives of old black and white photos of me in my cast, me in a succession of harnesses, slings, and splints, and me in my full leg brace with the 6” tall shoe my Daddy built for the opposite foot – all to prove to the government that I was no deadbeat.

I compiled pages of detailed background information on every doctor I had visited over the past decade, including names, addresses, phone numbers, and appointment dates, and whether they took X-Rays. I filled out all the SSI forms exactly as instructed and made sure to use my best penmanship. I documented every step of my harrowing life’s journey, and chronicled the emotional and physical ordeal my suffering imposed on my friends and loved ones. I pleaded for the faceless administration clones to show compassion and grant me my earned government aid.

My next-door neighbor, a former IRS employee, guaranteed that while she personally could not grease any palms for me, the typical social worker would be happy to receive an application packet like mine.

She was right. My submission sailed through the red tape, and even though it seemed to take FOREVER before I started receiving Medicare (I was only 54 at the time) the day finally arrived when I could confidently schedule an appointment with the best Orthopedic Surgeon in the state – indeed, the country.

After marking the date in my calendar, no amount of poverty or despair had the power to dampen my spirits. The first surgery was a success. I had to wait over six months for the second operation due to a delay in my Medicare Insurance, but it was worth the hold-up to get the doctor I wanted. I didn’t gain an inch in height, but my legs are finally the same length. The casual observer would undoubtedly notice that I still tend to walk with a slight waddle – a little like a Penguin, I suppose.

I have stayed healthy these past fifteen years without having to give up things I enjoy, like playing the piano, and indulging in my many creative activities. While I do suffer from continuing lower back pain and peripheral neuropathy (a condition which causes a sensation of intense burning, tingling, and itching in my swollen ankles and feet) I still have the stamina to run the vacuum occasionally, spend over an hour pushing a shopping cart around my local Costco warehouse, and devote hours to revising the first edition of my medieval fantasy novel in addition to working on the sequel and hammering out memoirs like this for my blog.

Though separated by nearly 3,000 miles, I treasure any time I get to spend with daughter and baby granddaughter. I even experienced RUNNING through Grand Central Station a couple of years ago while delighting in a brief, but exhilarating, summer vacation. And that was after a full day of shopping in downtown New York City!

Before Diagnosis

 

Ciaran Looks Back on the Perils of Childhood

Kid Ciaran_005
Ciaran as a Child

I can imagine the confabulation as Ciaran paints for Evaine a portrait from memory of what it was like to grow up in a castle full of vulgar men and unfulfilled women. What ordinary mortal could resist this curious child born under a cloak of secrecy and taboo? Who could avoid falling under the spell of his angelic appearance? What ordinary human would be immune to the speculation and suspicion that seemed always to hover around him? The unorthodox circumstances of his birth left much to the imagination and prompted many to question the legitimacy of his lineage. For some it might have felt safer to objectify and demonize him in order to avoid examining too closely their own sins.

“For years, everyone thought I was a girl!” he said, his voice brittle with indignation. “My foster-brothers dubbed me “Princess of Narberth” until I turned ten, when I at last developed the skill and the muscle to fight back. The ladies of the court fussed over me relentlessly. The nuns and the nursemaids used to chase after me with their hair brushes! Can you imagine?”

Keeping a straight face, Evaine pressed a palm to her heart, frowning at the injustice of it all. “How on earth did you defend yourself?” she asked earnestly.

Ciaran continued without pause. “Most of the time, I contrived to elude them,” he claimed, thrusting out his jaw with an air of self-importance. Adding an aside, he explained, “I knew all the castle’s hiding places. Whenever I spied one of them coming, I would scramble for the nearest hole-in-the-wall where I could keep out of sight until they grew weary of the search.”

“What happened when they found you?” Evaine wondered.

Ciaran scowled. “They sought to adorn my hair with ribbons and dress me in skirts!” he said contemptuously. “I complained bitterly, of course. But no matter how loudly I bellowed, the sisters would have none of it.”

He then commenced, in his most theatrical falsetto, to deliver a scathing parody of the dreaded voices of courtly female authority: “Sweet child, you’re just going through a phase.  All little girls like to pretend to be boys up to a certain age. You’ll see. Eventually, you’ll outgrow it. Now be a lamb and fetch my comb. That’s a darling. And please do try to sit still whilst I work the snarls out of your hair. Spun silk such as yours would be the crowning glory of most young ladies. Why you resist the necessity of grooming it is beyond me! Such abuse of one’s God-given endowments is an insult to the Lord!”

The Flamebearer-Narberth

The real Castle Narberth of Pembrokshire now lies in ruins. It played a significant role in Welsh mythology as the primary seat of power in the tale of Pwyll, Prince of Annwn. The Mound of Narberth also came into play as the portal that led into the Otherworld.

After spending a majority of the past three decades viewing the world through Ciaran’s eyes, the shock upon returning to a place that held such significance for him to find it overgrown, crumbling and neglected required a serious attitude adjustment. I had to sit down with him for an extended heart-to-heart talk on what to make of this unexpected turn of events. Needless to say, he did not take it well. His understandable disorientation tugged at my heart and brought me close to tears.

He immediately concluded that returning to the world of men had been a momentous mistake. Surprised at this, I asked him what he intended to do. “I must go back at once,” he declared. “Are you sure?” I pressed. “Aren’t you at all curious about how things have changed? You aren’t interested in exploring further?” He did not hesitate, but insisted his only option was to find a way back to the Otherworld with all haste. “Why would I want to tarry in a world where everyone I once knew and loved is gone?” he said, his face gaunt with anguish.

I do not know how I could have expected any other response from him. My heart filled with regret. We both decided not to linger any longer for fear of conjuring an army of ghosts.

 

 

 

Thoughts on the Creative Process

As I continue to explore my characters and their fictional world through words and images, it is my hope that readers who have enjoyed the book will gain deeper insight into the story through the illustrations. I’ve always believed in the power of images to inspire, captivate, and enchant — my favorite books as a child were always the ones that included pictures, the more detailed and fantastic, the better.

Ideally, I prefer total immersion in the creative process – words, music, and pictures working in harmony to create a truly all-encompassing experience. This is the way I work – consciously seeking to lose myself in the fictional realm by creating not merely an intellectually stimulating atmosphere, but a visual and emotional one as well.

This allows me to connect on a visceral level with the world I am seeking to create, and to empathize with and understand my characters in a way that allows me to explore the nuances, flaws, and contradictions in their natures. I am personally drawn to complex characters whose personality quirks and occasional bad behavior are the engines that propel the story forward – the traits that bring inner conflict, shame, and self-doubt upon the character’s psyche inevitably determine each character’s destiny, whether for good or ill.

I plan to update the Flamebearer Illustrations here and elsewhere on the web as scenes, portraits, and other images emerge, and as my skill as a 3-D Artist evolves and improves. At present, I am using Daz Studio 3, even though a newer version of the program is available. I have grown comfortable with version 3, and all of my scenes and characters to date have been created using this version of the program. It is partially for that reason that I am reluctant to switch to the more advanced Daz Studio 4.5. Also, my current hardware – including processor speed, hard drive capacity, memory, and graphics card are working at their maximum performance levels; in order to upgrade my software, I will also need to upgrade my entire system – an aspiration which remains, unfortunately, unachievable unless and until I am somehow able to generate huge sums of cash from my creative work.

The Flamebearer Synopsis

Abandoned in infancy by his Faery mother, the young Cambrian lord, Ciaran ap Morgan, loses his beloved father to death at the hands of Norman Marcher barons when he is still a boy. Raised by his mortal uncle and trained as a warrior, he hungers for blood and glory, driven by a fierce desire for revenge and a restless, fiery spirit.

His destiny changes the moment he meets Evaine, the human girl he calls his “dark lady.” Despite his best-laid plans, he finds instead of longing for battle, he is beset with visions of love.

For the maiden Evaine, the future holds little expectation for joy. In a culture notorious for its glorification of war and long-standing devaluation the Feminine, she resigns herself to a life of sacrifice in a loveless union arranged by her family to deter hostilities along the border. The enigmatic prince breaks open her heart, awakening her to a promise of love she had never dared to dream.

As the preordained wedding approaches, the two secretly confess to a mysterious and overpowering attraction akin to the reuniting of souls, pitting the young lovers in a dramatic struggle against the tide of circumstances and events.  Do they dare defy the ruthless overlord, Lionel de Barre, to follow the path of their hearts? Are they willing to gamble everything on the strength of their fragile, newly-discovered connection and risk provoking a bloody war they cannot hope to win?

 

 


Shakespeare Glossary

Basilisco-like:
(Nares: “This is in allusion to an old play, entitled Soliman and Perseda, in which a foolish knight, called Basilisco, speaking of his own name, adds, Knight, good fellow, knight, knight. And is answered immediately, Knave, good fellow, knave, knave”)
Childishfoolish like a child
Dagonet-a foolish knight at the court of King Arthur
 Drivelling-doting, foolish

Folly-fallen-grown foolish
Fool-The gerund –ing, substantively, == jesting in the style of a fool
Fool’shead-the emblems of a fool on the head
Fool-born or Fool-borne?foolish from the birth, or tolerated by none but fools? (O. Edd. always borne, never born)
 Foolishwitty; wise in folly and foolish in wisdom

Fop- subst. a fool, a dunce
 Foppish-foolish
Gratillity-a word framed by the fool; corrupted from gratuity?
Greenly-novice-like, sheepishly, foolishly

Idiot-a stupid person, a natural, a fool

Idiot-worshipper-one who worships fools

Idle-headed-foolish

Impeticos-a word coined by the fool, meaning in pocket or something like it
Jester-a buffoon, a licensed fool
 Lean-witted-stupid, foolish
Lout-subst. an awkward and foolish fellow, a bumpkin
Louted-made a fool of
Mad-headed; Mad-brained-wild, foolish
Madonna-the address used by the fool to Olivia
Motley-a fool
 Motley-minded-having the habits, though not the dress, of a jester; foolish
Nuncle-the customary address of a licensed fool to his superiors (Nares)
Pantaloon-an old fool; a standing character of the Italian comedy
Party-coated; Parti-Colored=dressed in a coat of divers colours, like a fool
Peevishfond wayward or silly and foolish
Ride-to treat at will, to tease, to make a fool of
Unfool-to make satisfaction for calling one a fool, to make the reproach of folly undone
Unreasonablenot agreeable to reason, absurd, foolish
Wildly-inconsiderately, foolishly
Wiseman-(spelt as one word in O. Edd. and accentuated on the first syllable) one not a fool or a madman

The Flamebearer Preface

This is a work of fiction. I have drawn from time-honored Celtic and medieval romances, and other western European mythologies, and while elements of these traditions permeate much of my writing, I have let my imagination weave a story which reflects my personal vision, rather than adhering to exalted legend or chronological fact. I do not claim to be a writer of historical fiction so much as a spellbinder, inviting the reader into a world where fantasy and reality gradually become indistinguishable, where the veil separating the ordinary world from the realm of Faerie disappears.

The drama unfolds against the backdrop of the Norman conquest of Wales, an effort which surprisingly lasted several hundred years. As French and English authority spread throughout the Celtic lands of Ireland, Scotland, and Wales, occupation and insurgency dominated the times. Lance and sword ruled the “marches” – the constantly shifting border regions dividing the established Anglo-Norman power structure from the untamed, (and possibly “ungovernable”) natives.

Many claimed the land itself, with its misty remoteness, its winds and its vast stretches of moorlands dotted with strange stone monuments to antiquity, bred anarchists and poets. Religious superstition, coupled with widespread belief in witchcraft, sorcery, and other sinister forces that threatened to undermine one’s faith and sanity permeated all of society, affecting common folk and nobility alike.

Where possible I have given Welsh (or least distinctly Celtic) names to my characters, and have chosen to use the native spellings, rather than the Anglicized versions. I’m pleased to provide a pronunciation guide for readers who are unfamiliar with this ancient and beautiful language.

This is primarily a love story, a personal quest undertaken by two idealized, yet deeply flawed and vulnerable characters. To risk entering the mysterious territory of passionate devotion, erotic intimacy, and emotional honesty is perhaps the greatest uncertainty either of them will ever face. In telling their story, I aim for the highest romantic ideal, while scrupulously observing the raw imperfections, doubts, fears, lusts, and complexities of an unfolding relationship.

Can enchanted soul love survive the thrilling yet perilous journey into the fires of intimacy, while the ordinary world seethes with violence, ignorance, inequality and greed? I imagine every lover hungers for such perfection, but so many forces align against its earthly attainment that we ultimately despair of finding it anywhere but between the pages of a romance novel. In the end, if we truly believe, perhaps we’ll find it within the fragile boundaries of our own beating hearts.

My Lady, My Love

    This is a short writing exercise in which I borrowed liberally from another work, revising and paraphrasing the content while adhering to the lyrical style of the original piece. The original text is from a book entitled The Virgin’s Promise by Kim Hudson, in which the author demystifies the complexities of the archetypes and clearly outlines the steps of a Virgin’s Journey to realize her dream.  I was deeply moved upon reading this passage for the first time and could not help relating it to the Male and Female lead characters in my fictional romance, The Flamebearer. The purpose of this exercise was to try on the prose style of a writer I admire by applying it to my own content and genre. *Disclaimer: I am in no way attempting to pass off Kim Hudson’s writing as my own. The piece serves as an exercise only and is not designated for publication in any of my books.

Ciaran & Evaine_04_18_2017_007
Original Illustration by Cabbie Glass created and rendered in Daz Studio

 

As I go into her, she pierces my heart. As I penetrate further, she exposes me, lays my soul bare. By the time I have reached her moist, exquisite center, I am weeping openly. I feel I have known her all my life. She reveals truths to me and these truths are revelations, and with each discovery I am transformed. Each time I go inside her I am reborn like this. Her healing washes over me, her wounds penetrate me, and I become aware of all we have allowed to come between us. Now my body reaches for hers, and in the body’s language, we speak effortlessly, and I learn that she never fails me in her presence. . .

This woman is my sister, my lover, my wife. Through her grace, her silent courage, I feel how loved I am. We admire the strength in each other and remember all we have lost, all we have suffered, all we know, and we are stunned by this beauty. We vow never to forget: what I am to her, what she is to me.

Welsh Language Pronunciation Guide:

Celtic Fire

The Welsh language uses a few letters not found in English

Consonants: As in English, with a few exceptions:

  • The Welsh “c” is always hard, as in “care
  • “ch”, as in the Scottish “loch” or the German “bach
  • “dd”, as in the English “them
  • The Welsh single f, a soft “v” sound, as in the English “David
    The Welsh “ff”, as in “farm
  • The Welsh “g” is also always hard, as in “garden.”
  • The famous Welsh “ll”, something like “thl
  • The Welsh “rh”,  something like “hr”
  • The Welsh “s” as in “sin
  • The Welsh “th” as in “thistle

 

Vowels: Roughly as in continental languages:

  • a: father
  • e: met
  • i: pin, sometimes like the “e” in “me
  • o: not
  • u: pin
  • w: as in “book”, but consonantal (as in root”) before vowels (except y) and in
  • Gwylim, Gwenllian, Gwydion
  • y: sum; (Cymru); sometimes as in “slid” (Gwydion)

Diphthongs: Usually as a combination of two vowels:

  • ae, ei, eu, ey”: tiger
  • aw: out
  • oe: oil
  • wy: dewy. Following g or at the beginning of a syllable: win
  • However, gwy: gooey

The emphasis is generally on the penultimate syllable

  • Ciaran: KEA-rn (don’t forget to trill the “r” in both first and last names)) ap MOR-gun
  • Cei: KAY
    Robyn ap Gryffin: Same as in the English Robin ap GRIFF-in (ap means “son of”)
    Ifanwy: e-VON-wee
    Evaine: e-VANE
  • Bach: as in Johann Sebastian
  • Gwylim: Goo-WILL-im (William)
  • Rhiannon: Rhee-ONN-on
    Tomas: TOM-as (Thomas)
    Gwenllian: GWEN-thlee-an
    Dafydd: DAV-ith; pronounced as in lavender (David)
    Hywell ap Gruffydd: HOW-ethl ap GRIFF-ith
    Iolo: YO-lo
    The Bruce: Just as in English, but with a pronounced trill
    Bwcca: BOO-ka (rhymes hookah)
  • Bri Leith: Bree-LAY-th
  • Caer Blaen: Kire Bline
  • Narberth: Just as it looks
  • Castell y Arberth: The Welsh spelling; Cas-TETHL ee AR-berth
  • Deganwy: Deg-ANN-wee
  • Gwynedd: GWIN-eth

 

Dreams

I dreamed about sleeping.

In the dream, I had a revelation about the concept of sleeping: I understood at a fundamental, archetypal level how to organically facilitate the process of falling asleep, how to achieve deeper levels of REM sleep, and how to easily navigate through the various stages of sleep. My Dreaming Self seemed to be saying, “Oh, I totally get how this works! It’s a simple matter of following a few basic steps.” I was able to grasp the meaning and purpose of sleep in a profound way.

As my consciousness gradually began to shift from the dream state to the hypnogogic “twilight” of half-sleep, I continued to reflect on the concepts I had been dreaming about.

I soon realized that I was no longer sleeping, nor was I dreaming. I became aware that I was now thinking about dreaming about sleeping.