Born with a rare form of rickets, 45-year-old Heather Crosby’s childhood was shattered by a series of excruciating—and unsuccessful— surgeries. But after she met Romana Kryzanowska, everything changed
I G REW UP IN DUXBURY, M A , 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.
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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 sixweek 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 teachertraining program. Unfortunately, I didn’t have enough time or money to enroll before starting veterinary school at CSU. (I got in!)
LETTING GO OF A DREAM
I moved to Fort Collins for school, but within a semester, I started having all kinds of problems with my thyroid and my lower left leg. I didn’t find out until recently that thyroid issues are another symptom of rickets. It got so bad that I had to quit school and move home. Needless to say, I was crushed.
BACK TO BOSTON
I went back to Dr. Hresko and he said, “We need to take out all of the metal, and I need to break this leg one more time. So let’s just do it once and get it over with.” So at 27, they broke my leg in four places and put an external fixator—like a halo—on my leg. There were pins sticking out of my legs. I couldn’t leave the house because it would gross people out so much.
Eight months after that surgery, walking with a cane, I got an administrative job in Boston for a construction company. Even though I was going to one of the best physical therapy places in the city, I still couldn’t get the last 15 degrees of extension in my leg. I started to swim for exercise, but the long fins I used gave me shin splints. Then I got heel spurs. As my pain increased, so did my depression. Just walking to the car, and then from the car to my office, was excruciating. I was 28 years old and didn’t even want to put my feet on the floor. And then I remembered Pilates. The next day, in 2001, I went out and bought Brooke Siler’s book, The Pilates Body, which soon became my bible. I called her studio, explained my situation and was referred to Romana Kryzanowska, one of Joseph Pilates’ students.
OFF TO MEET ROMANA
I was invited to come to Drago’s gym in Manhattan, where Romana was working, the next week. At that point, I believed she was my only hope! When I arrived, I handed Romana my X-rays. She promptly put them aside, and said, “Let’s just see what you can do, little girl.” She put me through what I know now to be an advanced-beginneror intermediate-level Reformer series. Then she led me to the Cadillac for the first five mat exercises, some breathing exercises and finally the RollDown against the wall. At the end of that first private session, she said, “Practice those mat exercises and come back next week, same time.” So I did. I did everything she told me to do from then on.
FAST PROGRESS WITH ROMANA
By the third session, I had regained that last 15 degrees of extension in my leg, and I knew that Pilates was the answer to my lifelong pain and limitations. It helped build the muscle necessary to support my weak bones. Romana didn’t guarantee results, she just said, “Mr. Pilates did this, and it worked for him.” So for two years, every week, I would drive from Duxbury to New Haven, CT, take the train to Grand Central Station, then put on my air cast and walk to West 57th Street for my Tuesdayat-noon appointment with Romana. Every week I became a little stronger, experienced less pain and felt more confident. Three months in, Romana recommended a teacher in the Boston area—Lisa Silveira—so that I could have a second weekly session near home as well. It wasn’t too long before I got rid of the air cast and stopped having shin splints. I had always been ashamed of my legs, and here I was developing muscles and seeing them getting straighter. I started loving them for the first time ever. Another time, I was walking down three flights of slippery stairs when my feet slid straight in front of me. I thought, This is it, you are going to be seriously hurt, but I managed to catch the railing with my pinky finger and make the connection to my core. I pulled my feet under me and landed like a cat! I knew Pilates work had saved me in that moment, as it has on countless other occasions.
Romana respected my determination and willingness to go through a lot of discomfort to get better. We had an incredible relationship. After a year and a half of studying with her, I invited her to lunch. I told her, “I feel like Pilates is something that I need to teach, and I want to know if you will give me your blessing.” She said, “Of course!” She recommended the Pilates Center of Boulder—the very same place I had visited before vet school! It turns out that she had trained the sisters who owned the studio, Amy Taylor Alpers and Rachel Taylor Segel. In 2002, I started the year-and-ahalf program.
A STUDIO OF HER OWN
I finished my training in 2004, and the next year, I opened my studio, Liquid Movement Pilates Center, in my hometown of Duxbury. I know it’s a cliché, but it was really a dream come true. So often a new student comes in the door, and they’ll say, “I’m not going to be able to do that.” But just like I acted with Romana, they keep doing what I tell them to do, and it works. I even had a 97-year-old male student tell me, “You know what, Heather? You’ve taught me you can teach an old dog new tricks.”
THE ULTIMATE GIFT OF PILATES
Today, in addition to teaching six days a week, I bike or walk with my dog 25 to 50 miles a week. I still experience pain—in my bones, nerves, joints, muscles— every day. I have to do some Pilates daily, to loosen my joints. My legs will never be straight, but they’re not as bowed as they were when I was a kid. I hope to someday regain all of the range of motion that was lost from being operated on, and being bound in casts. I know Pilates will make it possible, because Pilates has given me everything I am today.
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