The Second Floor

The second level of Shriner’s Hospital was the inpatient floor, where children from all over the world came to call home while they were being evaluated or treated for various physical disabilities. Between the ages of seven and twelve, I stayed there overnight more times than I can count.

The memories bring up a lot of mixed feelings. Sure, there was the time Santa Claus visited my hospital room on Christmas and brought me a stocking full of toys; but then there were the needles, the endless blood draws, the morphine drips and painful incisions. Sure, there was the arts and crafts room, with colorful activities to keep our hands busy; but then there were the excruciating screams echoing through the halls at night.

I remember the day I first found the hospital library — a tiny room filled with messy stacks of books, overflowing bookshelves, and the strong smell of stale paperbacks. There were no windows, and the overhead florescent light was almost never on until I got there and flipped the switch. A little handwritten sign on the wall said “Feel free to take a book, and return it when you’re done.”

I felt like I had stumbled upon a magical, secret garden; this small library quickly became my favorite place in the whole hospital. The books I discovered allowed me to get lost in the exciting lives of other, more “normal” children. The Babysitters Club, Goosebumps, and Sweet Valley High were my drugs of choice to keep me going through countless days and nights spent preparing for, or in recovery from surgery. They got me through painful physical therapy, cast and brace fittings, and the monotony of days and weeks spent primarily indoors.

It is because of the hospital library that I learned to read, well above my grade level, from a very young age. It’s how I discovered that writing can have the power to transform the reader into something, someone, somewhere, else.

Because I didn’t have much of a social life at the time, being cooped up in the hospital all day, the characters in my books became my best friends. I would spend hours telling my mom all about Claudia, Mary Anne, Stacey, Kristy, and Dawn, and how they came together to form the Babysitters Club. Claudia was the eccentric artist who loved to hide candy in her room; Kristy was athletic and business savvy; Mary Anne was sweet, smart, and shy; Dawn was the cool California girl; and Stacey was the stylish one from NYC, who had diabetes and—like me—had spent some time in a hospital.

Obviously, Stacey was my favorite.

My mom listened attentively, asking me questions about the girls and getting lost in my fantasy world right along with me. My mom was always there. Even when the hospital suggested she go home, saying they would take good care of me, she put her foot down and insisted on staying right by my side. It was a big, big deal. Most kids’ parents left at night to go home and sleep; but not my mom. No, my mom slept on a rock hard reclining chair beside my hospital bed every single night I was there.

It couldn’t have been very comfortable, but I wouldn’t have known it because she never complained. She was simply existing as I was — rolling with the punches, doing what we had to do to get through it all.

Sometimes now I hear parents of young children with Perthes ask what they can do to help their children… my answer is, be there. Take care of their daily needs beyond what the nurses can provide, and stay positive by helping them continue to engage in the things they enjoy.

The First Floor

I remember the long drives back and forth to the hospital. Slumped in the back seat, watching the power lines dance by, pole by pole, through the window of my parents’ station wagon. The endless swoops of wire, punctuated periodically by trees, birds, and traffic lights. I flipped the tape in my Sony Walkman and waited for Mariah Carey’s voice to take me away to another dimension.

The main entrance of Shriner’s Hospital led into a sunny atrium full of windows. The staff was friendly and welcoming as we checked in and made our way down to the waiting area for my appointment with the doctor. The waiting room felt as large as a cathedral. A bright sunny skylight and colorfully painted panels in primary colors adorned the ceiling and walls, and in the middle of the room was a large, recently-built play structure filled with toys.

While I was only seven years old at the time, I saw kids even smaller than myself – two, three, four year old kids with both visible and invisible physical challenges – running around and playing with the toys. I saw parents holding little babies whose arms and legs were in casts. I saw families who didn’t speak English, who had traveled from other countries specifically to come to Shriner’s, struggling to figure out where to go. Some of the other children were wailing, their painful screams filled with dread. I held my mom’s hand and waited for the nurse to call my name.

The doctor’s offices on the first floor of Shriner’s were decorated with Norman Rockwell prints. Strange, offbeat, vintage… crudely drawn characters up against stark, sparse backgrounds. The orphaned children, the clowns, the dogs; the excessive detail in the folds of clothing, skin, and hair of his subjects. I didn’t have the words to express it at the time, but the artwork felt wildly out of place, and made my skin crawl.

This was a place of uncertainty; a place where you’re going to be be evaluated, poked, prodded, and examined by a stranger. A place deeply fraught with worries and fears, where you may very well hear news of things that will cause you endless amounts of pain for years to come. Norman Rockwell’s drawings were not comforting in the slightest.

I saw so many doctors in these rooms. Doctors, residents, interns, nurses. Many of them were still doctoral students, who, while obviously passionate enough about their interest in medicine to pursue becoming a doctor, had most definitely not yet honed their bedside manner; or their ability to talk to children. Most of them would talk to my mom, rather than directly to me, as I was still so young. For me, it wasn’t always what they said that left an impact, it was the way they said it. And while some of my doctors were wonderfully warm and compassionate people, there were definitely a fair share of those who were arrogant, insensitive, and terse.

The information they told us about Perthes was always very limited. There were so many questions, and so few concrete answers. Questions like:

1. Why someone develops Perthes (nobody knows why; there are theories, but nothing has been proven.)
2. How exactly it came to be (they say it is caused by a lack of blood flow to the hip joint, but why that occurs is still uncertain.)
3. Why does it afflict more boys than girls? (It’s five times more common in boys than in girls, and girls tend to have a worse long-term outcome.)
4. What exactly is the long-term prognosis? (They would say that eventually I would need a hip replacement, but that’s really all they knew.)

This was the early ’90’s − before the time of Google. We had no smartphones, no internet browsers where we could search for scientific research and articles. There was no Wikipedia, and, believe it or not, the Encyclopedia Britannica had very little to say about Perthes. (It wasn’t in there at all.) We had to figure it all out on our own… and there was a lot to process.

For the next ten years, I would spend months of my life in that hospital, having seven major surgeries on my hip. I think it’s safe to say that part of me grew up very fast during that time. Life hit me like a ton of bricks, and there was really never any going back to the childhood I had before Perthes.

Before Perthes

Sometimes it’s best to start at the beginning.

I was a child of the 80’s. My earliest memories are filtered with a reddish sepia hue; faces smiling, hands reaching out to pick me up, and being surrounded always by toys, dolls, and musical instruments. The sweet sounds of my dad’s guitar playing and my mom’s vivacious laughter were my earliest soundtrack.

My older sister Karen and I were the only two kids in the family, but we always had friends around. My mom was a big proponent of “gallivanting,” a.k.a. driving from town to town visiting one friend after another. Those were the days when you could stop by someone’s house and say “What are you doing? We came to visit!” It was a wonderfully spontaneous existence and every day felt like a new adventure.

I took my cabbage patch doll, Tracy, with me everywhere, and as I got older, my sister and I would sing Madonna and Michael Jackson songs as we danced around the house in our pajamas.

I loved to perform from an early age, and would take any opportunity to get up on stage and sing. Whether it was my dad’s band playing on a float in a parade and me sitting on the edge singing along and waving at the crowd, or a school recital where I wore a costume and sang songs with my class; I felt at home in the spotlight.

It wasn’t until I was in first grade that we had any idea that something was wrong. By then, I was six years old, and had been having increasing pain in my left thigh and knee. My parents chalked it up to a pulled muscle initially, as I had taken my share of tumbles throughout the past year running around in our yard and playing with my friends.

I remember one day I was walking down the hall at school and an older boy pointed to me and said “You’re limping!”

“No I’m not!” I replied. (I didn’t know what limping was and my immediate reaction to anything I didn’t understand was, apparently, denial.)

“Yes you are,” he said.

It wasn’t long before my mom took me to the doctor for a cold, and mentioned that I had been limping lately. The doctor took one look at my walk, and sent us off for an X-ray. That day I was evaluated by multiple doctors, and by the end of the day we were sent to Shriner’s Hospital. It was there that, at the age of seven, I learned that I had Legg-Calvé-Perthes Disease of the left hip.

From that day forward, everything changed.

(To learn more about that day and my initial diagnosis, check out my About page. Thanks for reading!)

First blog post

Hi, I’m Brandee. As you read this right now, I want you to think about your hips. Not the fleshy matter that makes up the side sloping curves at the middle of your body; I mean, your actual hip joints. The part where the ball at the top of your femur meets the socket in your pelvis. Can you feel them?

I can always feel them. Well, mainly my left hip. I have something called Legg-Calvé-Perthes-Disease. LCPD, or Perthes for short, is a deformity of the hip joint that occurs in young children. There are many theories as to why it occurs, but there is no one definitive answer. Because it is fairly rare (affecting approximately 1 out of every 1200 children) it is not studied with the same level of resources, research and urgency that other, more common conditions are afforded. That being said, there has been more and more research published in recent years; more on that later.

For now, I want to tell you my reason for starting this blog. LCPD has, for me and so many other sufferers, been so much more than just a childhood disorder. It has been something that has affected my entire life. There are so many adults living in the aftermath of Perthes, yet for most of us, the medical community has largely ignored us after the age of 18. (More on that later, too.)

Because we tend to suffer in silence, having lived with the disorder our whole lives, we are an interesting hybrid of disabled/non-disabled; visible/non-visible. Obviously each person is different, and I can only speak from my own experience and reflect on stories I have heard from other survivors; but I know that for me, there is part of me that mourns the loss of a “normal” life and seeks to raise awareness of this disease so that others who have it, or whose children have it, can begin to find more community, common ground, and resources that can help with the tricky task of navigating life with Perthes.

I plan to use this blog to share my personal story of living with Perthes, as well as links to articles and information, and hopefully, as time goes on, stories from other survivors as well. Thanks so much for reading this, and please feel free to reach out to me with any thoughts, ideas, or questions!

-Brandee