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…”