Cementing Her Identity in Disease

of denial about her disease. She decided to become the first “gimpy”
bodybuilder, returning to the sport with complete devotion. Blindly obsessive, while white-knuckling it and forcing a positive attitude solely with her conscious mind, Laurie found creative ways to bear weight that wouldn’t twist her limbs.
She thought that by trying to push through the pain, she’d become healthier—although in truth, here orts backfired, because she felt awful most of the time and her pain worsened. As sometimes happens with polyostotic fibrous dysplasia patients, Laurie also developed scoliosis and suffered from severe back pain daily. By the time she was in hers, she began to develop arthritis in her spine and elsewhere.
After she graduated from college, despite shuttling herself between anew house and anew job, Laurie became very sedentary and felt even more removed from life. Her fear, anxiety, and depression remained. She envied most of her peers and lost friendships and romantic interests because she lived more like her elderly parents than like a young adult.
By her late s, Laurie used a cane all the time to get around, even when she wasn’t nursing one of the 12 serious fractures she’d eventually endure. As if those issues weren’t enough, she also experienced dangerous microfractures. Her bones were so weak that bigger stress fractures would appear beneath the microscopic fissures and connect to other areas of weakened bone to form even bigger fractures that could be seen on an x- ray.
By age 30, Laurie had more back problems than her 72-year-old father,
and she essentially became old before her time. She rested in bed for days and missed so many weeks of work that she was forced to quit jobs. She put graduate school on hold, because the school that accepted her didn’t have a working elevator. She had to forgo parties, museum outings,
shopping, traveling, concerts, and other activities that would have involved a lot of standing or walking. She was caught in the thinking-and- feeling loop I talked about earlier thinking that she was limited and fragile on the inside, while her body manifested limitedness and fragility on the outside. The more she felt vulnerable and weak, the more vulnerable and weak she became—while continuing to experience fractures that reinforced her belief that she was frail, and further reaffirming her identity and validating her state of being.
She adjusted her diet and took various vitamins and supplements in addition to bone-strengthening drugs, but nothing seemed to stop the fractures. She could fracture a bone from just walking up a flight of stairs or even stepping off a curb. It was like waiting for the next nightmare in a series.
198

Ironically, when Laurie wasn’t using crutches or limping, she looked perfectly healthy. Most people assumed that her cane was some sort of eccentric accessory, and many didn’t believe Laurie really had a debilitating condition, which made it difficult and frustrating at times to receive the special treatment she often needed. Trying to convince people that she really had a disease further solidified her identity as a sick person, set her intention to prove she was handicapped, and anchored her belief about her disabled status. While the rest of the world seemed to work very hard to hide their weaknesses and vulnerabilities, Laurie found that she was constantly announcing hers.
She spent a lot of energy trying to control as much as possible in her environment. She paid careful attention to everything she ate and drank,
measuring everything she consumed. Every walk around her neighborhood was calculated. She even weighed how much she could carry home from the supermarket ten pounds, which was also the limit of the weight she could gain before her bones would worsen.
It was exhausting, but it was all Laurie knew to do. Her range of options got narrower and narrower as she kept limiting the scope of things that she could do physically in an attempt to keep from fracturing.
As her lifestyle became narrower, her mind became narrower along with it. Laurie’s fears increased, her depression worsened, and eventually, she tried to work again but couldn’t even hold down a job.
This same woman who’d once been a runner, dancer, and competitive bodybuilder was now limited to doing only yoga for fitness, and by her late seven hatha yoga had come to be too much for her. For years, her exercise was limited to sitting in a chair and doing vigorous breathing
(although in her early s, her doctor finally allowed her to take up lap swimming).
She did make some attempts at healing through therapists, holistic doctors, energy healers, sound healers, and homeopaths—always seeking solutions outside of herself. A few times, she’d feel better after an energy healing and go straight to the orthopedist and demand new x-rays—only to be deflated when the results came back unchanged. She thought,
Maybe this is as good as it’s ever going to get. She awoke overwhelmed each morning, overcome with a feeling of dread, convinced she couldn’t handle whatever the world had in store for her.

Download 5.46 Mb.

Share with your friends: