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.