Merry Christmas

As Chevy Chase so wisely put it at the end of National Lampoon’s Christmas Vacation, [paraphrasing here] each person defines Christmas in his or her own unique way.

For me, Christmas is a collage of memories and feelings. It’s also been a checkpoint in time; an opportunity to take stock of where I’ve been and where I want to go.

Thirty years ago, I celebrated my first Christmas of freedom from back braces and body casts. But even before that wonderful year – 1979 – there are many fond memories of Christmases past, spent with family and friends, that combine to create my definition of Christmas.

Time and circumstances have altered the how and where of the season. I no longer live near extended family, and many of the relatives from my parents’ and grandparents’ generations have passed on. So, the focus is now on the next generation – my children – and helping them establish a foundation, rooted in tradition, upon which to build their own Christmas memories.

Traditions from my childhood -- like meatless Christmas Eve dinner and waiting until Dec. 24 to place the Holy Family in the manger – endure. And they join new customs like delivering Christmas cookies to our neighbors, and going to the movies between dinner and dessert on Christmas Day.

May you and yours create your own, special Christmas memories and enjoy peace, love and joy now and throughout the New Year.

From the hip -- redux

X-rays ordered by Dr. Kabir, my new rheumatologist, confirmed that I have severe osteoarthritis and loss of joint space in my right hip. No surprise, as I’ve noted in a previous post.

However, Dr. Kabir said I am “nowhere near” needing a hip replacement.

That was reaffirming – and good news to share with my family, especially my eight-year-old son who wants to know when I’m getting my new hip.

So, instead of contemplating surgery, I’ve started physical therapy. Dr. Kabir said she has heard good things about a place called Aquatic PT and Beyond, so I agreed to give it a try.

In the past, physical therapy meant reviewing my exercise regimen and tweaking it as needed. I pitied those poor souls who actually spent multiple appointments -- and precious time -- working out on the gym equipment during countless PT sessions. In contrast, I mastered my new moves in a few visits and was happily off doing my home program.

At Aquatic, though, I’m being treated to the full spectrum of traditional and aquatic therapy – and I like it! Gym and pool appointments alternate with a therapeutic massage every third visit. Imagine, a massage that’s covered by regular health insurance!

Bryan is my primary therapist. At my first visit, as he gathered my medical history, he asked when my spinal surgeries were.

“In 1975 and 1978. And let me guess, that’s before you were born, right?” I said.

“Uh, yeah, a bit!” he laughed.

Damn, it sucks getting old!

After examining me, Bryan declared my right quadricep one of the tightest he’s ever seen – and that’s “tight” in a bad (inflexible) way. Visually, imagine lying supine on a table and dangling your leg off the side. My right thigh remains parallel to the tabletop. Consequently, I receive an abbreviated massage at each gym appointment in an attempt to loosen some key trigger points.

These massage sessions can be very uncomfortable. At a recent visit, I told Bryan something he did hurt – and he kept doing it! But the results are worth it. Slowly, I’m feeling fractionally more flexible – something I didn’t think was possible. Bryan has even said he can help alleviate my flat-back syndrome. We’ll see…

Grandma: the later years

Shortly after Grandpa died, we realized he’d been covering for Grandma and her increasing forgetfulness.

I remember helping Grandma search for her house keys just days after Grandpa passed away. We turned the house upside down and, as the hunt lengthened without success, Grandma became increasingly agitated. “Grandpa, help me find those keys!” I implored. And, when I looked on the dining room table for the hundredth time, there were Grandma’s keys, perched atop a stack of papers.

Mark and I married 11 months after Grandpa’s death (his last wish had been to dance at our wedding), and we moved into the downstairs apartment of Grandma’s two-family house. The rent was low, and we had access to half the basement, a two-car garage, and the double-lot yard. But, more importantly, Grandma knew we were there.

Eight years later, we moved to North Carolina seeking a more affordable area to buy our own home and start our family. Grandma managed to stay in her house a few years longer, with the help of an in-home nurse during the day. Eventually, though, Mom and Aunt Annette made the difficult decision to move her to a nursing home.

Several months ago, Grandma started choking on her food. The doctors said there were two options – insert a feeding tube, or not -- and Mom and Aunt Annette decided to do the latter.

Just days before Mom told me, my eight-year-old son, R, (whose best friend had just lost his grandfather) said he wanted to meet Grandma. Unfortunately, I hadn’t seen her in more than 10 years, but since she no longer recognized anyone, I reasoned she was not aware of that. Then, when Mom called, I decided to return to New Jersey sooner rather than later.

We flew up for a weekend in August and stayed with my brother, Anthony, and his family. Aunt Annette met us at the nursing home and, for the first time ever, all five of Grandma’s great-grandchildren circled her wheelchair, trying to keep her attention before she nodded off to sleep again.

Peaceful. That’s how Grandma looks. The nervous eye twitch and anxious facial expression that had slipped into place after Grandpa’s death are gone. The only indication that she has anything but happy thoughts is her tendency to jerk her clenched fist up and down, as if she is stabbing at something in her lap; that and an intermittent grinding of what’s left of her teeth that creates a friction-on-rubber sound -- the only sound she makes anymore.

Her skin is smooth and soft; her face almost devoid of wrinkles. For some unknown reason, I asked Aunt Annette’s permission to touch Grandma. She encouraged me, noting that, aside from family visits, the only human touch Grandma receives now is from strangers who care for and feed her.

It was probably my imagination, but Grandma’s clenched-fist jerk seemed to slow as I stroked her arms and hands. While my daughter, J, organized some of the other nursing home residents for bingo, I stood by Grandma’s side, caressing her blue-veined hands and remembering how she had firmly held my much smaller one when we crossed the street on a long-ago spring day.

“So, Easter is the day after tomorrow?” I asked.

“No, the day after, the day after tomorrow,” Grandma explained.

“Right, the day after tomorrow.”

“The day after the day after tomorrow.”

“Yes, the day after tomorrow.”

“Okay, today is Holy Thursday, tomorrow is Good Friday. The day after tomorrow is Holy Saturday and the day after that is Easter Sunday.”

“Oh…”

Grandma’s hands never learned to drive, but could de-bone a chicken like nobody’s business. They were strong hands that helped her become a forelady at Sherman’s sewing factory on Central Avenue in Orange, N.J., and scrubbed my face so hard I thought it would come off with the dirt. And her hands were kind as they pressed money into mine when she thought my mother wasn’t looking, and slipped our dog, Maggie, table scraps on the sly.

The good news (thanks to a barium swallow test) is Grandma doesn’t need a feeding tube; just a softer, more liquefied diet. So, her 99th birthday on Thanksgiving may not be her last.

Happy Birthday, Grandma!

What would Grandpa think?

Twenty-six years ago today, Grandpa died.

It started in Summer 1983. He was losing his balance and coordination. Diagnosis: a brain tumor that was successfully removed. He went for radiation treatment as an outpatient, but when he started chemo, the stress of caring for him at home proved too much for Grandma, so he returned to Orange Memorial Hospital.

Orange Memorial. The place where Essex County’s ailing elderly went and -- more often than not -- stayed until they died.

The place was a well-oiled Medicare milking machine; a sterile environment in which to languish while Nature took its course – and Medicare paid the bills.

Such was Grandpa’s fate. A few days before he died, the doctors noticed he had jaundice. The reason: liver cancer.

Based on the limited knowledge I have about cancer and brain tumors, I know that primary brain tumors are extremely rare. In all likelihood, Grandpa’s brain tumor was secondary to his liver cancer. Could he have survived if his doctors had been more thorough? Probably not. But, I think his last days may have been very different – and the final cost to Medicare, greatly reduced.

Although I try not to think about the hopeless pain of Grandpa’s last hospital stay (there are, thankfully, so many other wonderful memories of him that I cherish), I can’t help wondering what he would say about our nation’s current health care debate.

Politically, he leaned to the right – like the rest of my family (I’m the political “black sheep”), but I remember him diffusing more than one argument at the Sunday dinner table by quoting, “I may not agree with what you have to say, but I’ll defend to the death your right to say it!”

In recent weeks, I’ve been cautiously optimistic that a spark of compromise is in the works in our nation’s Capitol with regard to health care. And, if he had lived to see it, I think Grandpa would be open to the possibility of such change. As I reflect on Grandpa’s memory today, I’m hopeful that we’ll all do what we can to fan that spark into a flame.

Do you love your health care?

Yesterday, I was listening to the Brad and Britt show while I was out running errands. They’re an entertaining duo, kind of a more reasonable and subdued version of Hannity & Colmes – before Colmes got the boot. They do their homework and offer intelligent commentary on the issues of the day. Lately, they’ve been talking a lot about health care.

When I tuned in, they were taking phone calls, asking people “do you love your health care?” And, a surprising (to me, at least) number of people were answering “yes.”

The one call I was able to hear in its entirety (it's annoying, getting caught up in an interesting discussion on the car radio, only to wonder what I’ll miss because I’ve reached my destination), was from a father whose disabled daughter had passed away last year. Now, I realize everyone grieves in their own way, but this guy sounded too matter-of-fact (or, as Mark noted, “chipper”), given his situation. Brad and Britt sounded dubious, too, hesitantly offering their condolences.

But I digress.

The father said he loved his health care (via United Healthcare). As his daughter’s health had declined, UH had covered everything, except one ambulance ride – and that was because it had been coded incorrectly. He went on to knowledgeably describe how you can’t get all your health care services up front. You need to pace yourself. In other words, know how to work the system.

And that’s when I had my (albeit belated) A-Ha! moment.

Americans are complacent about our health care system. It’s become second nature to us to “work the system,” and if we don’t know how, our doctors guide us through it.

As noted in a previous post, it shouldn’t be this way. It’s time to turn this country around, and get us on course with the rest of the industrialized world – those countries who make it a priority to offer everyone the quality health care they need, when they need it, for an affordable price.

MY health care saga

I embraced Emily’s story because I could relate to it on multiple levels: 1) I also have scoliosis; 2) I totally “got” her mom, Suzette, and her will to fight for the best medical care for her child, and 3) like most Americans, I have my own health care horror stories.

Most recently, my husband, Mark, was recruited for a great job opportunity. He wasn’t even looking, but the timing was right. He felt stagnant where he was. The new job was a terrific career move with a good company, and it even paid a little more. And yet we agonized over whether to accept. Why? Health care.

The new position is a contract job through an agency that offers group health insurance to its employees. But how did this plan compare to what we already had? What were the deductibles and co-pays? How much would it cost us each month?

We couldn’t get these answers until Mark actually “accepted” the job and was entered into their system (Mark told them up front that if the health care didn’t pan out, he’d have to walk away). Only then did we receive access to the details we needed to make a final decision.

Once the decision was made, you know what comes next -- a one-month waiting period (October) until the health insurance kicks in.

Since Mark has an uncanny sense of knowing when to leave a company (his resume is a list of places that have either gone out of business or drastically downsized), I’ve become somewhat of an expert at this dance. I rescheduled dentist and doctor visits to occur after Nov. 1. When my son, R, did need to go to the doctor’s office last week, I told them we’re temporarily without insurance and they usually knock off the administrative costs of the visit to reduce our bill. We’ve asked for free samples of medication and, barring that, have received coupons to refill our prescriptions.

And then there’s the switch from Blue Cross / Blue Shield to Aetna. Ironically, the plan with Aetna will be less expensive, cutting our co-pays by more than 50 percent. But, are all our doctors in-network?

Yes, except for the rheumatologist I was planning to see for my hip. So now I need to postpone that until I can research who IS in-network and check to see if my internist has ever heard of them.

We also learned, right before our old insurance ran out on Sept. 30, that Mark has a torn meniscus in his right knee. He needs surgery, but we’re postponing it until we’re covered again in November. Hopefully, he’ll be able to get by with the help of a cortisone shot or two.

Sadly, nothing I’ve said here is out-of-the-ordinary. I’m sure you’ve encountered many, if not all, of these scenarios yourself at one time or another. But it shouldn’t BE this way!

Getting back to basics

Not much new to report on the Emily front. I’m still trying to generate some more media attention, but the growing influence of social media and the internet is having a decidedly negative impact on traditional media outlets. Space and air time are limited, but I will keep plugging.
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Back to basics
And now, if you'll indulge me, I'd like to return to the primary topic and purpose for "Maria Talks Back" -- my memoir, Growing Pains.

When you’re self-employed, it’s the nature of the beast. Work ebbs and flows. But when I’m busy it’s a challenge to carve out time each week to market myself to ensure that the work will keep flowing.

Instead, I tend to prioritize things that have a deadline – which may be why I haven’t worked on the latest revision of my memoir in awhile.

It’s frustrating. I’m just pages away from finishing this latest edit. And when I'm finally done, I'll start all over again, at the beginning.

Since starting this blog, my voice has changed – for the better (or at least I think so). And I want that same viewpoint reflected in Growing Pains. I suppose that’s part of the process as a writer. To grow and learn and change.

Ironically, I look forward to starting over. Despite my medical challenges, the people and places I’m writing about -- those who shared in my struggle -- are infinitely dear to me and I enjoy “visiting” them through my writing.

Therefore, I’ve declared my office a Do it Now! zone.

Wish me luck!

Using my powers for good

When I started writing about Suzette and Emily last month, I never dreamed that my efforts would nudge an insurance giant like United Healthcare to do the right thing.

I need to work on raising my expectations.

Indeed, Suzette recently emailed me with the wonderful news that UH finally paid the thrice-rejected claim for her daughter Emily’s Boston Brace, covering 60 percent of the cost ($1,369.23) – in-network benefits to an out-of-network provider due to “medical necessity.”

If you know anything about brace treatment for scoliosis in young adolescents, you know that Emily, as she grows, will need subsequent Boston Braces. However, Cindy, the UH rep who confirmed UH’s action on the family’s case, told Suzette to contact her directly if she has any problem with future claims.

Suzette credits the WPTF radio interview she and Emily did on Aug. 19, the result of a media pitch I made to the station’s news director, for reversing UH's previous decisions. After months of frustration, dealing with UH’s bureaucracy, Suzette wrote in her email to me: “My gut feeling is…(i)f not for the WPTF 680 AM radio interview, NOTHING would have prompted this company to ‘re-review’ this claim. NOTHING.”

If she’s right, I’m thrilled I could help, but Suzette deserves a large chunk of the credit. A fellow “mama bear,” she is one of the most tenacious individuals I’ve ever met. You only need to read (and believe) the quote at the end of her emails to understand why: “There comes a time when you have to decide whether to fish or cut bait.....And I take fishing to the EXTREME!!!!!”

Bottom line: if Suzette didn’t have a paper trail a mile long, documenting her relentless efforts to make a case for Emily’s doctor-prescribed brace treatment to UH, this story would have never sprouted the wings that it did.

It’s unfortunate that ANYONE needs to go to such lengths to be heard when they’re just trying to ensure quality health care for their family. That’s why Suzette and I have agreed to continue sharing her family’s story in the hope that other families may avoid what theirs has had to endure.

Suzette and Emily: on the radio

Much has happened since my post, “Scoliosis, Miss North Carolina and Emily.” After writing it, I wanted to do more for Emily and her family by getting the word out beyond the confines of this blog. So, I made several media calls and, a few days later, Suzette and Emily were “live” on Raleigh’s radio waves, talking about United Healthcare and its repeated denial of the claims for Emily’s Boston Brace.

Before the scheduled appearance, Suzette and I made certain that our collective Facebook friends knew about it, and WPTF contacted UH. The station offered UH’s representative an opportunity to be on the phone during the show to comment, but the company declined, citing privacy issues related to HIPAA. Suzette volunteered to fax her permission, waiving HIPAA restrictions, but UH maintained they could not comment.

During the show, Suzette did most of the talking, and she rocked! In a calm, articulate voice, she explained the circumstances that had brought the family to this point. You can hear the entire interview here: http://www.wptf.com/goout.asp?u=http://billlumaye.blogspot.com/.

Afterwards, the UH rep did a 180 on the privacy issue. According to Suzette, he emailed WPTF some “thoughts” about Emily’s case, without obtaining consent from Suzette beforehand. Basically, it was a PR-laced regurgitation of UH’s position: that the brace was not eligible for insurance reimbursement because Suzette went to an out-of-network provider to obtain it. He also reiterated that UH had referred Suzette to two in-network providers (Suzette said they only referred her to one), but failed to acknowledge that these INPs were not capable of producing the custom-made Boston Brace that Emily’s orthopedist had prescribed.

Consequently, Suzette was “angry as a fire ant!” She sent an email to the UH rep, correcting his misinformation and berating him for his company’s response – or lack thereof – up until now. To date, she has not heard anything further.

On a lighter note…
I’m happy to report that Emily has gone back to school, stylin’ and profilin’ in her new wardrobe from Peebles. Katherine (Miss North Carolina, pictured right with Emily) joined the family at the company’s Lillington, N.C. store to watch Emily model her new rags, and even let Emily wear her crown (see below).

Peebles donated a $500 gift card to Emily so she could purchase clothing that would fit over her new Boston Brace. Having first-hand knowledge of that dilemma myself, I’m thrilled for her.

I’m hoping to get some additional media coverage for Suzette and Emily soon. In the meantime, if you have any suggestions for this family, please let me know.

Scoliosis, Miss North Carolina and Emily

You gotta love Facebook. Thanks to this online community, I am now on a first-name basis with Katherine Southard, Miss North Carolina 2009 .

Turns out Katherine is a fellow scoliosis patient, and she has made a commitment to raise awareness about scoliosis and its treatment during her reign as Miss North Carolina.

Last month, during her July 4 appearance at Fort Bragg, N.C., Katherine met Emily, a 10-year-old-girl who is struggling to adjust to her new Boston Brace.

The diagnosis
Emily was diagnosed with an “S” curve (15 / 17 degrees), as well as a spinal syrinx, at age five. During the past five years, her family has played “watch and wait,” trekking from their home near Fayetteville, N.C., to UNC Hospitals in Chapel Hill, N.C., every four to six months where Emily was subjected to several MRIs under general anesthesia. Finally, on May 5, 2009, they heard the news they’d hoped to avoid. Emily’s curves had progressed to 30 degrees each, thoracic and lumbar – the magical number to warrant bracing.

If you or someone you love has ever received a fateful diagnosis, you’re familiar with the swirl of emotions that follow. Denial, fear, anger, frustration and helplessness are all present and accounted for among Emily, her parents Suzette and Michael, and her brother, Dakota (pictured above, with Emily).

Shortly after the May 5 doctor’s appointment, Emily told Suzette, “Mommy, my having this stupid scoliosis makes me feel like I am going to die.” She’s also had to give up her spot on the pitcher’s mound of her softball team, since she cannot bend or twist quickly enough to catch and grasp the ball. For his part, Dakota is angry about Emily’s scoliosis and wants an answer for the unanswerable: why? “He feels like he’s lost part of his sister because the two of them can’t play and wrestle like they used to,” Suzette said.

The health insurance
Emily’s orthopedist wrote a prescription for a Boston-style TLSO brace to be custom-made for her by Bio-Tech Prosthetics and Orthotics in Durham, N.C. However, since Bio-Tech is an out-of-network provider, Suzette said the family’s health insurance company (United Healthcare) referred her to Orthofix for Emily’s brace. According to Suzette, the Orthofix rep said he did not know why UH had referred Emily to Orthofix. “He said, ‘your daughter needs a custom-made Boston brace. Here, I have small, medium and large.’” Suzette said.

So, Suzette took Emily to Bio-Tech to fill the doctor’s prescription for a Boston Brace and filed a claim with UH. So far, the $2,282.05 claim has been denied three times. Another claim ($1,272) for treating Emily’s brace-induced sleep apnea has also been denied.

In addition to filing several appeals to UH – all of which have, to date, been denied -- Suzette, a tireless advocate for her child, also requested the physician’s reviewer notes to learn who was denying the claim and why. According to Suzette, the physician advising UH about this orthopedic-related health care decision is a plastic surgeon who has not been in active practice since 2003.

Help in the form of clothes
Since receiving her Boston Brace on June 9, Emily has gone from referring to it as “claustrophobic,” to self-consciousness about how others perceive her appearance. She wears the brace 23 hours per day, removing it only to bathe or swim. As the first day of a new school year approaches, Suzette has been scrambling to find stylish clothing that fits over the brace and will help Emily’s self-image.

During her appearance at the Ms. Statesville Pageant, Katherine told her audience about Emily, and asked for clothing donations. Afterwards, a woman from Peebles offered to provide clothes so Emily could go back to school “feeling good about herself.” Emily will receive her new wardrobe at the Peebles store in Lillington, N.C. later this month.

As a mother, I can only imagine what Suzette is going through. Dealing with your child’s scoliosis diagnosis is more than enough to handle, but having to do battle with the health insurance company – and now the mortgage company – is pushing Suzette to the end of her limits.

Health care reform cannot come soon enough for this family. So, if you have any suggestions or offers of assistance, let me know. I will gratefully pass them along.

Aug. 4, 1979

On this day, 30 years ago, I celebrated the removal of my second and final body cast with family and friends during a “coming out” party.

The cast was officially removed on July 31 and, by the time my party date arrived, I was well and truly certain that my treatment for scoliosis was over.

No more spinal surgery. No more braces and casts.

It’s ironic that I have, after a lengthy hiatus, resumed revising my memoir, Growing Pains, today. I am almost at the end of the manuscript, which is what suddenly alerted me to the significance of today’s date.

I had a great time at my party. I remember feeling that a tremendous burden had been lifted – something far heavier than the weight of my cast. I’d been set free from scoliosis. It’s a feeling I’ve never forgotten. One that still makes me smile, 30 years later.

Aging not-so-gracefully

“Don’t ever get old,” my father likes to say, to which my mother chimes, “Hey, it’s better than the alternative!”

Aging is okay if you can maintain a tolerable quality of life. In that regard, my parents are fortunate. I hope I will be as lucky.

Mary came by for lunch yesterday and we were talking about aging as scoliosis patients. We both agreed it’s scary to think about what shape we’ll be in when we’re ready to activate our respective AARP memberships.

The reality of flat-back syndrome (http://tiny.cc/aJi8H) and its gradual progression was starkly evident as I recently flipped through pictures from my college graduation 25 years ago. What great posture I had then, and how naïve my smile, thinking it would last.

Now I cannot bear the sight of myself walking, bent forward at the waist no matter how hard I try to straighten. I rationalize that my hip plays a part in my plight, and that will be corrected when I finally cave and get a new joint. But the flat-back will remain – and possibly worsen.

Writer Howard Phillips Lovecraft said, “The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown.”

That pretty much sums it up.

After all the challenges I faced during my teens –- and those I’ve realized as a wife and mother -- I don’t consider myself timid in the face of adversity. Fear of the unknown is a formidable foe, but I'm steeling myself for the battle.

Grandpa

One of the greatest gifts a parent can give a child is to teach them how to manage their money.

It’s a lesson I’m in the midst of with my daughter, J. At her age (17), the equation is pretty simple: Summer Job + Money Earned = Car. Obviously, there’s a learning curve but – after several missteps – I think she’s starting to catch on, albeit grudgingly.

She’ll thank me later. OMG, my mother used to say that! Which is appropriate. My knack for money management came from her, and she learned it from her father – my grandpa.

He was the patriarch of my extended family. The reason Grandma cooked a big, Italian meal that brought us together on Sundays. And I was the apple of his eye. His first-born’s first born, and the only granddaughter. To Grandpa, I could do no wrong.

When I think of Grandpa, I remember loving bear hugs, church, cigars, mixed drinks, American-made cars and Al Jolson tunes. During his lifetime, he was a radio personality, a bartender, an auto parts salesman, a battery expert for the U.S. Navy’s Landing Ship Transports during World War II, and a minstrel show performer. He was active in our church as an usher and “knight” and, to this day, when I go to church I feel like I’m visiting him.

Grandpa had a rich, booming voice that resonated when he sang around the house. He assumed the best of everyone, never met a stranger and was quick with a smile and firm handshake.

My continuing revision of Growing Pains allows me to return to a time when he was vibrantly alive, seated at the head of the dining room table, asking for my permission to have his customary, post-meal cigar.

I miss him, but I’m doing my best to ensure his legacy continues. Which is why J is going to learn how to efficiently handle her money. She may appreciate my efforts later, but it’s really Grandpa she should thank.

Making a Difference

June 2009 was the first-ever National Scoliosis Awareness Month. I was surprised and pleased to recently learn I was part of the National Scoliosis Foundation’s “Making a Difference” slide show (http://tiny.cc/9MEcv) marking this historic observance.

Thanks to my friend, NSF president and CEO Joe O’Brien, and everyone at NSF for including me, and for all you are doing to raise awareness about scoliosis and its treatment.

RIP, Michael

My personal media filter is up and running in the wake of yesterday’s news that Michael Jackson -- musician, dancer, artist -- has died of an apparent heart attack.

I don’t want to hear about the past scandals, the eccentric behavior and the massive debt. I just want to enjoy my own memories of Michael and the Jackson Five as they blazed a new trail in musical entertainment during the 1970s, creating their own sound and style. Michael took that groundbreaking tradition further when he went solo, securing his place as the bonafide “King of Pop.”

I grew up with the Jackson Five, singing and dancing to their albums in the privacy of my bedroom. My family had to pound on the door to get my attention, so absorbed was I in the magic of their music.

It’s amazing how many generations of people throughout the world know of Michael Jackson and his incredible talent. As I listened to the BBC this morning, folks from around the globe were reminiscing about him, and how his music and dancing affected their lives.

I count myself among them now as we all mourn this tragic loss of an icon.

Spinal fusions, pregnancy and childbirth – oh my!

A high school friend recently said she was relieved that my spinal fusions had not prevented me from having children. That surprised me. I never thought of my back being a hindrance in that way. In fact, I’d always considered my spine to be stronger than average, having been fortified through fusions.

However, I did consider if I should reproduce – and risk passing spondylolisthesis and scoliosis to my progeny. As I point out in my memoir, if I’d been born a century earlier, I would have been paralyzed by the time I’d reached child-bearing age, and my genes would have stopped with me.

It was amazing how quickly those lofty ideals fell, though, after I married Mark. Subsequently, we have two beautiful children that, thankfully, have not developed any spinal problems.

My first pregnancy was uneventful. Sure, I had some lower back aches, but what expectant mother doesn’t? I remained active by walking our dog every morning and attending a weekly, prenatal exercise class. All in all, I felt great – and very excited to meet my baby.

Then, after 12 hours of unproductive labor – and three incidences of my daughter’s heart rate dropping! – the doctor decided an emergency C-section was in order.

Enter the anesthesiologist. I had not discussed my spinal fusions and the possibility of an epidural up until that point, but when he learned about my previous surgeries his advice was succinct and to the point: “If you’re not having any problems with your back, I wouldn’t risk it.”

The OB who was monitoring my labor and delivery was the one doctor -- out of a practice of five – that I didn’t like. What are the odds? He was arrogant and cocky and actually boasted that he would get that epidural needle in me – if that’s what I wanted.

“Does it matter what I want?” I asked him.

“Of course.”

“Then, put me to sleep!”

Although Mark was in the OR for J’s birth, I hated not being awake for it. So, in the third trimester with my son (who was to be a planned C-section, since he was a Kell baby: http://tiny.cc/XBa0g), I consulted with my then-orthopedist to determine if I had other options. He mentioned a caudal block (http://tiny.cc/wD7qA), but didn’t really advocate for it.

In the end, I was asleep for both of my children’s births and, given the risks, I think I made the best choice for my future spinal health.

The redheaded stepchild of orthopedics

Make no mistake. Scoliosis is serious stuff. Just ask me – or anyone else who has it.

So, why is it so difficult for scoliosis to be taken seriously?

I’m not talking about people who are afflicted with scoliosis – or know someone who is. I’m referring to the media and the general public, and maybe even some in the medical community.

In my “Milwaukee Brace” post, I cite the scene in Sixteen Candles where a girl wearing the brace attempts to quench her thirst at a water fountain. But, that’s just one example of many I’ve seen and heard where the punch line involves “the kid with scoliosis.”

And while it may be good for a laugh, scoliosis isn’t “sexy” from a publicity standpoint.

Several years ago, I offered my services as a PR professional to the National Scoliosis Foundation pro bono to help them publicize the importance of early screening for effective treatment of scoliosis. Since many school systems nationwide have determined that in-school screenings are cost-prohibitive, the story was a public service encouraging parents to request scoliosis screening at the pediatrician’s office. The most prominent placement of the press release came from a local, weekly newspaper whose editor had an adolescent relative with scoliosis.

Even within the medical community, scoliosis is treated like the redheaded stepchild of orthopedics. So, as a condition, it doesn’t get much attention, and that inattention can extend to its patients.

Last summer I wanted to establish myself as a patient with a local orthopedist that Mary had recommended, but when the doctors learned I was an adult scoliosis patient – in pain – my file was shuffled from one to the other until the pain specialist in the practice finally delivered the news: they couldn’t (or wouldn’t) see me!

I’ve since learned that this is very common for adult scoliosis patients. Why? I have no idea, but I figure any doctor who practices in that manner is definitely one to avoid.

Grandma

When you think about an Italian grandmother, what image comes to mind? A short, plump woman in a housecoat who loves to cook and bake and watch people eat what she cooked and baked, right?

My grandmother fit most of that stereotype – except I never saw her bake – but she hated being in the kitchen. She cooked to please my grandfather and, every Sunday, she’d make a pot of gravy (a.k.a., “sauce”), meatballs, spaghetti, baked chicken, etc. for our family’s weekly “dinner” at 2:00 p.m.

Before she retired, though, Grandma worked as a forelady in our town’s sewing factory. That’s where she developed a talent for projecting her voice so it would be heard over the din of multiple sewing machines – a trait that remained throughout her life and made my ears ring after any prolonged period in her presence.

I think she got married and had children, just because that’s what was expected back in the 1930s. But she seemed happiest when she told me about her work as a forelady where she earned more money than Grandpa, as I write in my memoir:

“Remember, Maria, when you start working, it’s best to be salaried. That way, you’ll always get a paycheck each month.” Conspiratorially, she leaned closer and lowered her voice. “You know Grandpa wasn’t salaried; he worked on commission, but I was salaried.”

Straightening she’d continue in her normal tone. “And when you get a raise, make sure you save half of it; just put it in the bank and forget about it. You were doing fine before you got it, right? So you won’t miss it if you put it aside, and then you’ll still have the other half to do with as you please. That’s what I always did.”

The third of eight children, Grandma’s father died when her mother was pregnant with Grandma's sister, Dehlia. As a widow – before Roosevelt’s New Deal and social security benefits -- great-grandma re-married soon afterwards, but her new husband turned out to be an alcoholic who routinely abused his wife and children. Grandma never trusted him:

“I was so afraid that one night he’d kill Mama and all of us,” Grandma said, her eyes wide. “I’ll never forget the night I saw him go down to the furnace room and come back with a hot poker! A red, hot poker! I struggled with him and that poker until everyone else woke up and called the police. Never forget it…”

From the hip

I don’t imagine anyone wants to be in a wheelchair. Indeed, the goal of my spondylolisthesis surgery was to avoid such an existence.

However, after traversing the Animal Kingdom during our recent visit to Disney World, I conceded to being pushed in a wheelchair in Epcot, the Magic Kingdom and Disney’s Hollywood Studios. Being in a wheelchair at Disney has the occasional advantage of scooting to the front of the line at some attractions – something my kids and nieces thought was cool. My sister-in-law was uncomfortable with that particular fringe benefit but, as my niece, Bailie, pointed out -- I’d earned it.

Thing is, I didn’t need the wheelchair because of my back. It was my hip.

In 2006, while my family lived in St. Louis, I visited an orthopedic practice at the renowned Barnes-Jewish Hospital (http://www.barnesjewish.org/orthopedics/ortho.asp) to determine why my right hip was becoming increasingly stiff and achy. Both an orthopedist and a hip specialist confirmed that my spinal fusions were solid and stable. Instead, it was the severe, bone-on-bone arthritis evident in my right hip that was causing my discomfort -- and would more than likely be a source of trouble as I age.

Neither doctor could definitively explain how this had happened. My theory: the slight scoliosis curve that persists in my lower back -- and tilts my pelvis so that my right leg feels shorter than my left -- has caused above-normal wear on the right hip joint.

Bottom line: My medical future includes a hip replacement – or two, or three – depending on how soon I cave. The St. Louis team recommended that I wait until at least age 60 before the first, since current prosthetics only last about 15 years.

In the meantime, I have good hip days and bad hip days. Exercises that stretch and strengthen have helped to reduce pain and increase range of motion, so I’ll press on and hope to keep all my original parts for as long as possible.

Mom

One of my favorite movie lines is from My Big, Fat, Greek Wedding:

“The man is the head of the house, but the woman is the neck, and she can turn the head any way she wants.”

I had a front row seat watching this same scenario unfold between my parents during my childhood.

Mom was and is the touchstone of our family. She handled the money, managed our household and raised Anthony and me with a gentle strength that was both nurturing and no-nonsense. Mom taught us patience, perseverance, and pride in a job well done. She valued honesty, trustworthiness and proper grammar. And, consequently, all these things are now important to me.

As the family troubleshooter, she approached life’s challenges by developing an action plan. For example, when we found out I would be bedridden during the first three months after my spondylolisthesis surgery, she transformed our dining room into a bedroom so I would be downstairs “where the action is.”

Mom was cool and confident, with a great sense of style – traits I sorely lacked. And, in the random spirit of genetics, my daughter is just like her!

Similarly, aside from physical traits, Mom is nothing like her own mother (more about Grandma in a future post). Instead, she emulated her father’s mother, who lived with my mother’s family during Mom’s childhood.

When I think about great-grandma Chuckerel, I envision kind, gentle hands that taught Mom how to cook and bake like an Italian, and how to love a child like only a mother can. Mom was a stellar student and, just as surely as hair or eye color, these traits will continue to pass from one generation to the next in our family, because of her.

Growing Pains

I’ve talked a lot about my medical history so far, but my purpose for creating this blog centers around my memoir, Growing Pains (that’s the working title, which I came up with long before the TV show, fyi).

The memoir genre has gotten a bad rep in recent years, thanks to several infamous folks who unwisely chose to fabricate the truth to sell books.

In the May/June 2009 issue of Writer’s Digest, there is an interview featuring the unlikely pairing of Stephen King and Jerry B. Jenkins. In it, Mr. Jenkins makes an observation that sheds some light on the motivation behind the practice of making up stuff for a profit.

“…the definitions of nonfiction and fiction have flip-flopped these days. Nonfiction has to be unbelievable, and fiction has to be believable…”

And so, I wonder – not for the first time -- is my story unbelievable enough?

From the very first draft, what I often refer to as “my back stuff” continues to be a major focus of Growing Pains, but it often take a back seat (no pun intended) to the primary comedy-drama of being a teen stricken by an unrequited infatuation/obsession. It’s also about growing up in the ‘70s in a small, New Jersey town where being Italian-Catholic put you in the “majority.”

But whether this – coupled with my spinal experiences – will be “enough” is yet to be determined. In the meantime, stay tuned for more character introductions, similar to the “Dad” post, and don’t be shy about commenting. I want to know what you think!

Dad

As my parents age, I find myself in a heightened state of denial. Even though the time will eventually come, I hate to think about being on this planet without Mom and Dad alive and kicking.

The night we returned from Disney World, my father took an unexpected ride in an ambulance after he developed chest pains. Thankfully, it was just his gall bladder.

Whenever Mom or Dad has a health scare, I double my efforts on my memoir – and reflect on who my parents are and the memories we share.

The youngest of seven children born to Italian immigrants in 1931, Dad was the only member of his family to graduate high school. His linear career path led him from a stint in the U.S. Air Force during the Korean Conflict to the police academy. He served our hometown as a police officer for 38 years – even though he was eligible to retire after 25 years – and he adamantly refused to advance through the ranks because it would be “too political.”

The men of Dad’s generation knew how to waltz and jitterbug. They helped women with their coats, held doors open for them and walked closest to the street when escorting a lady on the sidewalk. In their world, there were no shades of gray – just black and white. They never warmed to rock music, voted Republican and hated the sight of boys with hair past their ears.

Being a police officer was central to Dad’s identity. He was of average build, but could summon up an aggressive intimidation that served him well on the job, spurring our town’s “little darlings” to sputter, “Yes, Mr. M.” and “No, sir, Mr. M.” when he questioned them.

However, when he was off-duty and could lower the cynical shield he wielded against the darker element of society, Dad was an amenable sort and well-liked – unless you broke one of his cardinal rules, like not reciprocating a dinner invitation or (God help you!) going against a member of his family. Then, forget-about-it. He’d cut you off – permanently.

Anthony and I grew up hearing Dad tell us three things: 1) “you’re 100% Italian;” 2) “don’t ever touch my gun,” and 3) “what’s said in the house, stays in the house.”

At home, Dad was quick to tease and play with us, and we lived for his invitation to “take a ride.” He introduced us to fishing, Mutual of Omaha's Wild Kingdom and Abbott and Costello.

Dad was the first person to nickname me “Ri.” He taught me how to ride a bike and drive a car, how to protect myself by being aware of my surroundings, and how to love without actually saying the words.

This time it was just Dad’s gall bladder, and that’s good because we’re not done yet, making memories.

The Disney parallel

I’ve just returned from a Disney trip/cruise. My parents took my family and my brother’s along with them to celebrate their 50th wedding anniversary. It was great! We couldn’t have asked for nicer weather and everyone had a wonderful time.

Being in the Magic Kingdom stirred memories of the 1970s when my parents first took my brother, Anthony, and me there.

My memoir takes place during the ‘70s. And, when I mapped out the dates of my childhood Disney visits, there’s a coincidental parallel.

The first trip was in July 1973. It was a halcyon time for Disney, as well as for me. I was 11 and Anthony was nine, and the Magic Kingdom had only been open a couple of years when my family drove down to Florida from New Jersey in the new Chevy Impala.

In 1974, we took the Auto Train -- in August! Space Mountain was under construction, and Epcot had yet to become a Disney imagineer’s aha! moment. There was no such thing as a park hopper pass, because there was just one park, and your vacation package included a limited number of tickets entitling you to visit rides that were categorized “A” (i.e., Cinderella’s Carousel) through “E” (i.e., It’s a Small World and Pirates of the Caribbean).

Then, in 1975, Disney’s first thrill ride -- Space Mountain -- opened, and I received my spondylolisthesis diagnosis. Things would never be the same.

We returned to Disney in April 1977. The golfball icon of Epcot was under construction, and I was wearing the Milwaukee Brace, unaware I’d be having a second spinal fusion the following year. More than anything, I wanted to ride Space Mountain. Dr. Keim had said I could, but my mother had other plans, as detailed in this excerpt from my memoir:


“Maria… If there’s a sign at Space Mountain that says people with back problems shouldn’t ride, you’re not going on it.” I flushed with angry disappointment. Dr. Keim said I could go on Space Mountain. Mom knew that, but she also knew I wouldn’t argue the point in front of everyone. Well played. Mom thought she was doing what was best for me, so arguing was pointless. Which is why my first Space Mountain ride was years later with my own daughter.


During this latest trip to Disney World it was hard not to be nostalgic about how much things have changed. Now, my children and Anthony’s have the same level of excitement for Space Mountain, Test Track and Tower of Terror that we had for the Haunted Mansion and Pirates of the Caribbean. But, this time, I rode them all.

Talkin’ ‘bout that degeneration

Now that I’m on the wrong side of 40, it’s difficult to discern which aches and pains are a consequence of my spinal fusions, and which just “are.”

I credit my friend, Mary, for ending my blissful ignorance about flatback syndrome. She also helped me realize the burning sensation I sometimes have mid-thoracic is caused by disc degeneration. You can read more about it at this link from the National Scoliosis Foundation’s site: http://www.scoliosis.org/resources/medicalupdates/pain.php.

I’m a big fan of endorphins. You know. Those wonderful, pain-blocking neurotransmitters that pump through your body when you work up a good sweat. It’s another reason why I’m such an exercise advocate. Many a morning, when I’ve awakened with stiff joints, I press on knowing that relief is just a brief treadmill walk away.

But brisk walking doesn’t alleviate every pain.

Disc degeneration is very common in scoliosis patients, often occurring above and below the fusion site. A few years ago, mine was occurring too often and I went from panic, to misery, to annoyance and, finally, anger. This is a cycle that occurs every few years, prompting me to visit my orthopedist. He’s just a stepping stone, though; my true goal is a prescription for physical therapy to review my daily exercises.

I don’t want to sound like the proverbial “broken record” [and if you’re under 30, you may not even know what a “record” is!], but exercise (of the isometric variety) is an effective means to minimize -- and even eliminate – much of my pain.

Often, it’s just a matter of tweaking what I’m already doing to accommodate the changing needs of my body. Here’s some good info about exercise and maintaining a healthy back: http://www.spine-health.com/treatment/physical-therapy/rehabilitation-and-exercise-a-healthy-back. But my best advice – if you’re in pain -- is to visit your doctor to rule out more serious causes. Then, ask about exercise and request a referral to a reputable physical therapist for an exercise strategy that is designed specifically for you.

Exercise and me

Mary, my “twisted sister,” and I have found several contradictory instances in our respective experiences with Dr. Keim, and exercise is one of them. Unlike Mary, Dr. Keim sent me to exercise therapy to “help the brace work more effectively.” And, while Dr. Keim encouraged me to “stay active” throughout my care and beyond, he specifically told Mary to limit her activity, even after her surgery.

Since I’d had spondylolisthesis surgery prior to starting brace treatment, the exercise therapy may have had the dual purpose of rehabilitating my muscles. Or maybe Dr. Keim just told me the exercises would help my scoliosis as an enticement to actually do them. Since I approached the idea of exercise with all the enthusiasm of a teenager being coerced out of bed at the crack of dawn on Saturday, he obviously knew his audience.

Regardless, the exercises did help me gain more strength and flexibility to do things I hadn’t even known I was unable to accomplish – like lifting my unbent legs while lying on my back. But, after my last cast was removed, I slacked off. I was young (17), pain-free and focused on making up for the years I’d spent in braces and body casts.

Fast-forward to 1985. I was newly married to my husband, Mark, whose commitment to exercise had been reinforced during his four years of active service in the U.S. Navy. Now he was trying to convert me! I vehemently resisted, using my spinal history as a convenient excuse.

Then the muscle spasms came. They originated in the trapezius muscle and radiated up my neck. They came on quickly and without warning, like a bolt of lightning, and lasted for days. The pain was debilitating and the spasm’s strength made my neck tilt on a diagonal.

Mark took me to see Dr. Keim, the only doctor I trusted to give me an answer. X-rays showed two solid fusions and no skeletal issues, leading Dr. Keim to recommend weight training to strengthen my upper body muscles. Mark was thrilled.

Pain is a powerful motivator so, grudgingly, I learned how to use our weight machine to tone and strengthen. And, as Mark and I started making nightly visits to the homemade ice cream store just around the corner, I started to do aerobics as well.

We planned to start our family after we moved to North Carolina 1990 – plans that I thought would be detoured when I started having unexplained spasms in my lower back. Again, the answer was exercise, targeted to strengthen what is now called one’s “core,” as well as the muscles in my back.

Now, the reluctant convert is an enthusiastic advocate. Over the years, when my body’s needs have changed, so have the exercises I do every day. I’m committed to that hour every morning. It’s sacred time that everyone in the house – even the dog! – knows not to disturb. By taking an active role in the future of my health – as well as ensuring my continued mobility -- I am in control, and that feels pretty good.

Comments and "Following"

If you're here, reading my blog, I would very much like to know what you think about the information being provided, so please comment! Several folks have said they wanted to comment on this blog, but didn't want to go through the process of registering. Problem solved! I've reset the comment section so that anyone can post a comment -- anonymously if preferred.

Also, I would encourage you to "follow" my blog by clicking on the link to the right. This will NOT load your in-box up with every update to the blog, but if you have a google page, you can customize it to include blogs you follow and you'll be able to see when a new post has been added.

Thanks!

The Milwaukee Brace

I love the movie, Sixteen Candles. It’s a terrific “coming of age” story. The exception, for me, was Joan Cusack (a.k.a. Geek Girl #1) trying to get a drink at the water fountain while wearing a Milwaukee Brace.

The first time I saw it, I was startled by the fact that scoliosis – or at least a treatment for it – had “made it” into pop culture. But, the stereotypical overtones bothered me. They still do.

But I digress!

My spondylolisthesis had been so severe that my scoliosis was barely a blip on the orthopedic radar screen. Dr. Keim said if my curve didn’t worsen after my first body cast was removed, I’d be in the clear. My spine, however, had alternate plans and, seven months later, I was off to meet my brace man, Mr. Zamosky, who would custom-fit me for a Milwaukee Brace – an exceedingly awkward contraption created in 1946 by Walter P. Blount and Albert Schmidt as an effective alternative to surgery in treating scoliosis.

It was the “alternative to surgery” part that motivated me and my parents to give it try.

These days, doctors are more likely to prescribe a Boston Brace or Charleston Brace for scoliosis, depending on the nature of the curve. Both braces are lighter, less visible and more comfortable for the patient. You can see photos and read about all three at this link: http://www.iscoliosis.com/articles-brace_types.html.

Back in 1976, though, the Milwaukee Brace was the headliner in scoliosis treatment, particularly for “S” curves like mine -- which looked similar to the X-ray at this link: http://en.wikipedia.org/wiki/Scoliosis.

So, into the Milwaukee Brace I went, for 23 hours every day. It was a gamble, whether the brace would cure my scoliosis. No one – not even Dr. Keim – could know for sure if it would pay off.

Then, 2 ½ years later, I had my answer, and my second surgery was scheduled.

Dr. Keim

Unlike my scoliosis, pain was the symptom signaling the presence of my spondylolisthesis. It was at its worst when I first woke up, as this excerpt from my memoir details:

The cacophony of morning songs from assorted, northern New Jersey birds swirled through the open window with a gentle, early autumn breeze, waking me from a restless night’s sleep.

The pain was waiting for me. It would be sharp, breath-taking and unavoidable.

With a resigned grunt I rolled onto my stomach and slid my body – knees first – toward the hardwood floor. Gripping the headboard, I pulled my 13-year-old self up and grimaced at the familiar, yet surprisingly intense, sensation of an ax grinding into my lower back.

On my feet, but bent at the waist, I walked the length of my room. As my feet shuffled along the cold, dark wood floor, I massaged the muscles of my lower back. Minutes passed and the tight ache subsided, rendering me an upright Homo Sapien, as opposed to a hunched Neanderthal.

After more than a year of this daily ritual, my parents took me to a general practitioner, but he was less than clueless. Subsequent visits to two different orthopedic surgeons were equally frustrating. They knew what was wrong, but wouldn’t tell me -- much less offer a solution. The reason for their silence was yet to be revealed (can you say “fear of malpractice?”).

Enter, Dr. Hugo Keim.

He was slight of build – not much taller than my own 5’ 3” frame – with a thinning hairline and round, wire-rimmed glasses perched before two eyes -- one normal, the other not. We’d heard he was “da man” when it came to adolescent orthopedics, and I will forever credit him for saving me from a wheelchair-bound existence.

Dr. Keim explained that one of my vertebra (the fourth lumbar, aka L-4) had fractured and the two halves were separating, or "slipping." His plan: surgery, post-haste, because the severity of my slippage – measured from Grade I (minor) to Grade IV (severe) – had already progressed to DEFCON 5. There was only a 45% chance that the surgery would be successful. If it wasn’t, I would eventually become paralyzed. If I didn’t have the surgery, same outcome. Nothing like having circumstances dictate a major decision. I took my chances with the surgery.

Dr. Keim corrected my spondylolisthesis with a spinal fusion, taking grafts of bone from my right hip iliac. No instrumentation was used, and I was in a body cast for six months post-op -- bed-ridden for the first three, to enable the fusion to properly heal.

I continued under Dr. Keim’s care for my scoliosis. He’s retired now, but I thank God for his knowledge and expertise, and the impact he had on my life.

Something about Mary

Every individual is a product of his or her unique life experiences, and my spinal history has played a starring role in how I have become the person I am today. However, I don’t want that part of my life to define me because I’m much more than a spondylolisthesis/scoliosis patient.

I feel a special connection to friends and family who were “there” when I was living through my surgeries, etc. And, as I have made new friends during my lifetime, I have eventually, for one reason or another, shared at least the Reader’s Digest version of my story with them.

That’s how I met Mary.

In 2002, I met Marguerite, a woman in my neighborhood who was a fellow stay-home mom. As we became acquainted, the story of my back came out. She told me about her friend, Mary, who was also from New Jersey and had had scoliosis surgery. Marguerite offered to put Mary and me in touch and, days later, Mary called. We talked for over an hour, comparing medical notes, and soon discovered we’d had surgery in the same hospital – Columbia Presbyterian in New York City – with the same surgeon, Dr. Hugo Keim. Like me, Mary had worn the Milwaukee Brace before her scoliosis surgery and now her daughter, Emily, was in a Boston Brace, hoping to avoid surgery.

We started calling ourselves "twisted sisters." I told Mary about my memoir and she asked to read it. And I was so excited to have someone outside of my family give me feedback about it.

Mary told me about flat-back syndrome. She had it and wondered if I did, too. Unbeknownst to me, I did.

I’ve read many horror stories about aging scoliosis patients. I’m a worrier by nature so tales of agonizing, nonstop pain, and Harrington rods and other hardware breaking through the skin were not giving me a warm-and-fuzzy feeling about my medical future. But, my friendship with Mary has helped me see that every scoliosis patient is different, with their own unique issues. In return, I think I’ve shown her how exercise can help ward off or even prevent potential future problems. So, it's a mutually beneficial situation, and a very special friendship.

Flat-back syndrome

I had my surgeries during the 1970s. At that time, the Harrington rod was widely used as a “cutting-edge” technology for spinal fusions to correct scoliosis and, consequently, I have a six-inch rod aligning my spine. It’s held up pretty well through the years, with the minor exception of a dislodged hook – the result of a tumble down the stairs just a few years after my scoliosis surgery. The errant hook is a topic of discussion every time I have a chest X-ray. I’ve learned to anticipate the doctor’s efforts to break the news to me gently by politely waving him/her off with an “I know, a hook dislodged from my rod. Now let’s talk about…”

Over time, though, my Harrington rod has contributed to a malady known as flat-back syndrome. Until recently, the medical profession didn’t recognize this condition for what it is – a loss of the spine’s natural curve that enables “normal” folks to walk with a good posture. However, through much effort on the part of aging scoliosis patients and other advocates, orthopedists now acknowledge flat-back syndrome and the problems it creates for those afflicted with it. You can read more about it at this link to the National Scoliosis Foundation’s website: http://www.scoliosis.org/resources/medicalupdates/flatback.php.

I recently had the degree of my flat-back syndrome measured at my orthopedist’s office and was told that a worsening of the condition is NOT inevitable if I can keep my hip and spine muscles flexible and strong. My daily regimen includes stretching and strengthening exercises for that precise purpose, so I’m hopeful.

My flat-back isn’t painful, but it does make me feel like a half-folded lawn chair sometimes. And I am very self-conscious about people noticing – and sometimes commenting! – when I’m not walking “right.” But it is what it is. There are surgical options, but I’ve had several doctors tell me not to bother if I’m not experiencing extreme pain….basically, “if it ain’t broke, don’t fix it!”

Welcome

This is momentous. My first blog, first post. And I don't have a clue where to begin!

I'm starting to blog to talk about my life after spinal surgery. I've had two operations, one at age 13 (for spondylolisthesis) and the other at age 16 (for scoliosis). The experiences made adolescence that much more challenging, but I survived -- and now I'm writing a memoir about it.

When my last body cast was removed, I thought my back troubles were over. Ah, the naivete of youth! However, I admit I have had a much easier time than many others who have had similar procedures. I look forward to hearing about your experiences with the aforementioned conditions -- or anything else you'd care to share.

Thanks for visiting. TTFN.