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

 

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.

 

 

 

My Introduction to Seattle Nightlife

Cabbie at 17

My introduction to Seattle nightlife came through a loose-knit, rowdy bunch of Catholic Prep School boys with family ties to the happening coffee houses of Pioneer Square during the late 1960’s.

The most happening place of them all was a folk-music joint, coffee house/pizza parlor with an address for its name: 92 Yesler.

Affectionately known as “92” by customers, servers, and entertainers alike, the club presented a kind of subterranean ambiance owing to its rumored history as a Speakeasy during Prohibition. It’s modern-day incarnation quickly earned it the reputation of a trend-setting hangout where mature teens and young adults could enjoy an evening of live music and refreshments in an alcohol-free environment. (I seem to recall no shortage of cigarettes, however. Hey, it was the 60’s! Everybody smoked.)

The casual passerby, out for a pleasant stroll through one of the city’s oldest and most storied communities, perhaps planning to join a tour of the famous Seattle Underground with its dimly-lit boardwalks and dusty storefronts of a by-gone era, would find themselves accosted on the sidewalk by a spirited Rudy Valley look-alike sporting a raccoon coat and barking a fast-talking stream of witty verbal enticements through a giant, hand-held megaphone. What made this a such successful marketing tool was the fact that the boys who took turns stepping into the 1920’s doorman persona were all part of their school’s Drama Club and came armed with a seemingly limitless supply of thespian’s tricks for getting into and staying in character. My favorite was a strikingly handsome, black-haired young actor named Mike. I developed an instant crush on him.

I will never forget the time my best friend finally screwed up the courage to audition for a coveted slot on stage as a folk singer. Robin possessed an angelic voice and even trained as an opera singer, but she was exceedingly shy and dreaded facing the possibility of rejection. The night of her interview, she took cover in the shadows until nearly closing time after all the Bob Dylan-wannabes and Joan Baez clones had gone home.

At the urging of another of our friends, Robin timidly approached the owner/manager, guitar case in hand, and asked if he might squeeze in a few minutes before locking up to hear her play. She was utterly unprepared for his reaction. The first notes out of her mouth were enough to convince this business-savvy entrepreneur – an engaging, humorous fellow not much older than ourselves at the time – that he had stumbled into a gold mine, or, more accurately, that the Golden Goose had walked into his office and placed the Golden Egg directly into his hands, dazzling him with possibilities. He hired her on the spot.

The weeks and months that followed changed our lives for all time. To a couple of middle-class Bellevue High School girls with oversized crushes on The Beatles and a shared aptitude for songwriting, the prospect of landing a regular Friday night gig at a popular Seattle coffee house could not have been more exciting.

In fact, we were convinced it was the coolest thing either of us had ever done. We got PAID to stay out past midnight and perform some of our own material in front of a live audience. During intermissions, we flirted and laughed with the cute 16 and 17 year old boys who worked there part-time as waiters, busboys, ushers and bartenders.

Driven by a desperate longing to flee the unbearable monotony of the affluent, WASP-ish Eastside, the two of us seized every occasion to practice our repertoire and learn new ballads and classic folk tunes. My alto when combined with Robin’s clear, bright soprano produced musical duets equivalent to the female Everly Brothers. Blending our voices became such a natural process, we would spontaneously launch into a chorus of the #1 Top Forty Beatles’ tune, or start singing Donovan’s “Catch The Wind” in the same key in perfect 2-part harmony.

Thrilled, excited, grateful, and poised to spread our wings as young women, we essentially lived from Friday night to Friday Night, dragging our asses through the excruciating tedium of another week at Bellevue High School. We walked like the Living Dead among the endless plastic smiles, the expensive wardrobes and sports cars, the agonizing pep rallies, the attitudes of “entitlement” and the hypocrisy, restlessly counting the days, the hours, the minutes leading up to another fun-filled night in Pioneer Square.

92 symbolized for us a metaphorical magic portal into a realm of self-discovery, romance, fantasy, folk and pop music. Our Irish boyfriends all secretly dreamed of joining a band and touring the world, following in such illustrious footsteps as John, Paul, George, and Ringo. The friendships forged during those heady weekends have indeed lasted a lifetime and the memories of those youthful escapades will forever endure in our hearts.