By Heather Crosby, as told to Beth Johnson
I grew up in Duxbury, MA, on the shore south of Boston. I was hesitant to walk as a child; I preferred to sit in my little red wagon and point to things. When I was two, my parents realized something was wrong and brought me to Boston Children’s Hospital, where I was diagnosed with hypophosphatemic rickets. It is a very rare form of the disease that causes the kidneys to reject vitamin D and phosphorus. It caused my bones to be porous and weak.
The treatments that followed were brutal. When I was seven, I was hospitalized so they could put a nasogastric tube through my nose, down my throat and into my stomach and for 24 hours, pump massive doses of vitamin D and phosphorus into me. I vomited and had diarrhea the entire time. The next day, they did it again; this time, I was so traumatized, they had to tie me to the table. And after all of that, it didn’t help at all.
Limited, but Athletic
As I grew, all the bones in my body were misshapen, especially my legs, which were severely bowed. Amazingly, I loved being active. We had a tire swing with big knots, and I’d climb all the way to the top of the tree. I loved playing on the jungle gym and riding my bike. But any impact on my bones was painful. I could never jump off the swing; I had to wait until it stopped, and then carefully stand up.
Not a Textbook Case
At the same time, the doctors were telling me that I should be very emaciated and pale, with stringy hair. They even gave me dentures for my top teeth in second grade, because they said I’d never grow adult teeth. Meanwhile, my hair was thick and long, I had beautiful skin, my teeth grew in fine, and I was really strong. Deep down, I knew that the doctors knew very little about how to treat this disease. But they insisted on even more excruciating operations.
On my ninth birthday, they broke both of my femurs (thigh bones) and implanted pins in an attempt to straighten my legs. I was under anesthesia for 17 hours, and afterward, the pain was horrible. I was in a full-body plaster cast for four months.
Every Year, the Same Misery
Every single year after that, until I was 15, I had some sort of surgery on my legs. At 11, they broke the femur, tibia and fibula of my left leg, and put in pins and screws. I fell down the stairs at home a few days later, which led to gangrene, and I almost ended up losing that leg. When I was 12, they hammered a titanium rod into my right femur, and I was in a cast for almost six months. At 13, they had to redo that surgery. When I was 14, they jammed a titanium rod into my other leg. It just went on and on.
Each surgery left me in more pain, with more scar tissue and less range of motion.
After the first operation, when I was just nine, I said to the doctor, “If you make the muscles strong to support the bones, that makes more sense to me than breaking them.” The doctor replied, “What do you know, you’re just a child.” But by the time I was 15, I started to rebel. I would go to a doctor’s appointment, and if the doctor didn’t listen to me, I’d just walk out.
While recovering from all the surgeries, I had to have a lot of home schooling, and when I was in school, I was cruelly teased about my bowed legs. Animals were my solace, and horses were my favorite of all. I thought that since I’m short with bowed legs, God made me perfect to be a jockey. So after high school, I earned my bachelor’s in equine science at Mount Ida College in Newton, MA.
After graduating, I went to work for a large animal veterinarian—my dream was to become a vet—and I rode horses daily. But one day when I got on the horse, I couldn’t sit all the way down on the saddle. It felt as if there was a door-stopper under me.
New Doctor, Different Outcome
My boss, the veterinarian, recommended a great surgeon, Dr. Timothy Hresko at Boston’s New England Baptist Hospital. It turned out that the titanium rod I’d had implanted when I was 12 was now sticking out of the top of the femur by about two inches, which is why I couldn’t sit all the way down on the saddle.
I told Dr. Hresko, “I can’t take being in a cast again.” He replied, “If you promise not to put any weight on it, I promise I won’t put a cast on you.” (We both kept our promises.) In 1993, he broke my leg in three places and took out the rod. His kindness and understanding made such a positive difference in my recovery, as did the advances in physical therapy since I was a kid in the ’70s.
While recovering, I had a lot of time to think about my future. I decided I wanted to go to veterinary school at Colorado State University, one of the top-three large-animal veterinary-medicine schools in the country. If I set up residency in Colorado for two years, I could go to school at in-state rates. So I decided to move to Boulder, attend the Boulder School of Massage Therapy so I’d have a skill I could use to support myself, and then go to CSU.
In the summer of 1995, I did just that. Massage school opened me up to things I never even knew existed, from acupuncture, Reiki and Rolfing to lomilomi massage. It’s also where I first heard of this man named Joseph Pilates, who had also had rickets. I learned he had managed to straighten his legs without surgery, and went on to lead a full, healthy life. I was stunned!
A Bit of Pilates
I went straight to the local rec center and signed up for a six-week mat class. When I saw the teacher do Climb a Tree, I thought it was absolute magic. I knew in my soul that Pilates was something I had to do. The day after I graduated from massage school, in September 1996, I walked into the Pilates Center of Boulder to inquire about their intensive teacher-training program. Unfortunately, I didn’t have enough time or money to enroll before starting veterinary school at CSU. (I got in!)