Puberty in a shell

It was summer in New Jersey and a friend had invited me to her house to go swimming in her family's pool. I told her I would walk there (less than a mile away from my house) and she expressed concern.

"What if you fall? You'll be a like a turtle on its back. 'Help me! Help me!'" she mimicked the infamous line from "The Fly".

I laughed and assured her I'd be fine. And I was.

Another summer, during a family trip to the Florida Keys, I spent some of my "brace-less" time in the sun ~ and fell asleep. The resulting case of sun poisoning made wearing my Milwaukee brace unbearable, so I went without for awhile. I remember feeling vulnerable, sleeping without the brace's support. Or maybe I was feeling guilty, not wearing it as prescribed.

This story reminded me of those instances. It is Hannah's story, seen through her aunt's camera lens. This touching tribute, by photographer Julia Cybularz, chronicles Hannah's scoliosis treatment. The story title is the first reference to "living in a shell" that I can recall ~ a very accurate description. Scroll through the photos of "Breaking the Girl" to see Hannah's journey of strength and courage.

This July will mark 36 years since my last body cast was removed, finally freeing me from my shell.

No height gain for me

When, after two and one-half years of treatment with the Milwaukee Brace, Dr. Keim decided that I needed scoliosis surgery, I wondered if I would be taller. Seemed logical to me: curved spine made straight should add a few inches, right?

That was the subject of a recent study at Boston Children's Hospital, published in the National Library Medicine. The conclusion was that, yes, among the 116 patients (average age: 14.8 years), additional height was gained after scoliosis surgery, and some patients continued to grow post-operatively.

In may case, though, I did not gain any additional inches on my pre-surgery 5' 3" frame. But then my surgery was likely more extensive than those patients participating in the study. I was also older (16) and had probably achieved my adult height by that point.

But thanks to the study's authors for confirming my hypothesis lo, those many years ago.

Decision in King v. Burwell will affect everyone

It's been awhile since I vented about the state of health care in the U.S. However, as 2014 winds down, I am very concerned about the King v. Burwell case, which will be decided by the Supreme Court in July 2015.

Since the Affordable Care Act was signed by President Obama in 2010, it has been gradually implemented, culminating with the launch of the (albeit flawed) website that enables folks to sign up for affordable health care. Prior to healthcare.gov's rollout, several other components of ACA were put into place, including provisions that allow children to remain on their parents' health insurance plan until age 26, and preventing insurance companies from withholding coverage for people with preexisting conditions.

Republicans have wasted time and energy trying to overturn ACA, and I would argue that they have succeeded in preventing the law's full implementation, since the majority of states (with Republican governors and/or legislatures) have refused to establish a state health care insurance exchange, and almost half have declined millions in federal funding by not expanding Medicaid.

Ironically, the crux of the King v. Burwell case is that federal subsidies should not be given to folks living in states that did not establish state-run insurance exchanges. Well played, GOP.

Despite the political opposition, a recent poll shows that more Americans are supportive of the ACA. But, ACA's funding is on the line with the King v. Burwell case and, depending on how the Supreme Court rules this summer, it could all unravel.

Preexisting medical conditions affect my entire family, so this is personal for me. If ACA goes away, it will have a negative impact on my children and their future health and well-being. All any of us can do is hope and pray that the Supreme Court justices will deliver a commonsense ruling that will keep this important legislation in place for every American.

Meet Phoenix

I love hearing from Maria Talks Back readers because that's how I meet people like Phoenix and her mom, Audrey.

A few months ago, six-year-old Phoenix was diagnosed with severe early-onset scoliosis (60-degree C curve).

For the first two weeks after Phoenix's diagnosis, her mother Audrey was "numb." But by the time we met through a mutual friend, Audrey was immersed in her crash course on scoliosis, and preparing Phoenix for her treatment in a Wilmington brace.

By all accounts, Phoenix handled the casting and brace fitting like a

champ and has been responding well to wearing her new brace for 23 hours each day. She is also receiving physical therapy and Cranialsacral Fascial Release.

Cranialsacral Fascial Release is actually two therapies: Craniosacral and Fascial. And, according to Lynn Demarco, Phoenix's therapist, these therapies can work in concert to relieve "blockages in the energy system [and]. . . restore energy flow, alleviate pain, decrease stress and improve overall function."

Reviews on the effectiveness of this holistic approach to healing are mixed, but so far it is working for Phoenix, and that is what matters to Audrey.

Since she had to learn more than she ever wanted to know about scoliosis, Audrey has become an advocate for early detection: "I didn’t think a curvy spine could be such a big deal. Believe me, it’s a big deal. Scoliosis can cause a host of problems to a little one’s development if not taken care of. If you’re reading this and have a child, check their back. Usually the back check happens at the pediatrician or at school, but for Phoenix, she progressed very fast and it happened in-between visits [within] a year and a half’s time. If you are looking at your child’s back and it looks odd, get it checked out."

A funny thing happened on the way to get my driver's license

This past week (July 31) marked the 35th anniversary since my final body cast (pictured below) was removed.

I still remember how "free" I felt. Finally. I was 17 years old and had a long to-do list of things I had delayed until I was plaster-free, not the least of which was getting my driver's license.

Although I had earned my driver's permit while I was in my cast, I had postponed my on-the-road driver's test because Dr. Keim said I would receive a disabled license if I took the test before the cast came off. He would know about such things, himself having only one sighted eye.

I chose to take my test in Newark because, according to my friends, the DMV folks were more lenient there, and that would greatly increase my chances of passing the test.

So, with me behind the wheel, my dad took me to the Newark DMV one brisk autumn morning before he went to work.

It had been awhile since my father had navigated the congested streets of downtown Newark, but we were doing okay until he told me to make a right. As I completed the turn we had to wait for a solid line of pedestrians to pass through a crosswalk. That's when we simultaneously saw the "No Right Turn" sign ~ and the flashing blue lights in the rear view mirror.

"Stay here!" dad said as he threw open the passenger door. The car windows were closed, but the rear mirrors provided an excellent view: my dad (in his police uniform) facing off with a very irritated Newark cop. Pointing. Gesturing. Arguing. And then, as their voices rose, audio:

"I'm taking my daughter down to get her license," my dad explained.

"Yeah? Well, she's not gonna get her license, if that's the way you taught her to drive!"

And on it went.

Finally my dad said: "Look, I'm on the corner of Northfield and Main Street in West Orange. Go through the red light there and we're even!"

He got back in the car and told me to go.

And, yes, I did pass.

Scoliosis Infographic

As a follow-up to the scoliosis chat that took place recently on Facebook, here is a comprehensive infographic about scoliosis:

Scoliosis chat

I received an email today that I wanted to pass along.

The Hospital for Special Surgery will be hosting a Facebook chat focused on scoliosis on Tues., June 24, at 5:30 p.m. EST. Dr. Roger Widmann and Dr. Lisa Ipp from HSS will be available to answer questions from the scoliosis community.

Located in New York City, HSS is a world leader in orthopedics, rheumatology and rehabilitation, and is a member of the New York-Presbyterian Healthcare System and an affiliate of Weill Cornell Medical College. The hospital's research division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Visit HSS's Facebook page for further information.