By Emily Spurrier
From her Blog: Dys-Located
This is the fourth in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31).
By the time I was fourteen, I was able to walk long distances, but could not do so in shoes. I was in an adapted physical education class because I was not able to do pushups. Pull-ups would shred my hands. Asking me to run sprints was like asking a turtle to play fetch. It was impossible. I had days where I would come to school in slippers because my feet were so swollen and sore. Other days, I would walk a mile.
That same summer, I had my first of many orthopedic surgeries. Because the pain involvement on my left foot was often greater than that on my right foot, I had a tendency to walk on the ball of said foot, while the right foot remained pronated. My achilles tendon was lengthened to help bring the left heel down. Now, I was wheelchair bound with a cast for the next six weeks.
Shortly afterwards, we moved from the Los Angeles area to Minnesota. Almost immediately, my skin started healing faster and my endurance was higher. As previously stated, however, I was depressed and immensely self conscious. My feet were my biggest issue. Shortly before my sixteenth birthday, I had a second surgery to completely reshape my right foot. Years of walking incorrectly had collapsed the arch on my right foot and caused several of the bones that are naturally on the top of a foot to shift to the inside. I spent another six weeks in a cast, found out I was allergic to morphine and learned that I could never use crutches. A week later, my aunt died suddenly.
Outside of school, anonymity had become my friend. I acquired a pen-pal through an international service. I consciously chose not to tell him about my EB. I didn’t want him to treat me any differently than he would treat anyone else. I held my tongue often when he would ask me about outside activities, but still shared with him stories about my friends, trips to the mall, and most any other typical teenage angst story that was common for anyone my age. Within a short time, we were sending audio letters back and forth. He talked me through getting over the death of my aunt, the loss of a close friend and several other issues that contributed to my depression, but never did I mention to him that I had EB. We remained close until we were 18 and then, the letters stopped. To this day, I credit him for being that person to talk to and open myself up. It was him who helped crack my shell.
By the beginning of college, I was no longer using the wheelchair, at all. I walked to all of my classes (in shoes… sometimes boots) and conquered the Mall of America on foot. When this new-found freedom came boys, parties and the college and life experience that I personally felt I had been hindered from for so many years. I rarely told people about my condition, and felt that it was only a need-to-know basis. At the same time, however, I’d wear shorts or tank-tops that obviously revealed my scarred legs. This became an issue at one point a few years later… One that I never thought of.
I attended three colleges between 1992 and 1997. I had many friends of both genders. My best friends, however, were male. They were my protectors, my rocks and my brothers that I never had. None of us ever talked directly about dating each other. It was sort of an unspoken rule between us all that we never would.
While in college, however, I managed to dislocate my knees twice. Once, it required an ambulance ride and an immobilizer. My years without walking had weakened my knees and caused my kneecaps to grow higher up than other people’s. This instability led to countless rounds of physical therapy until my muscles strengthened enough just from walking to keep my knees stabilized. Additionally, arch supports had become mandatory. Without the support in my foot, my ankles still turned inward, causing the rest of my lower body to become misaligned, which, in turn, caused my knees to ‘slip’ in and out of place.
Then, I turned 21. While enjoying one of my only “quiet” evenings of the week in my friend’s dorm, I was asked out by one of her friends. Perhaps it was my rookie status in the dating scene, but we only lasted two weeks. I never told him about my physical health. Shortly afterwards, I accepted a date request from someone I had previously turned down. At the end of the date, I opted to open up to him and tell him about my EB. If it was going to turn him off, it might as well be then… before anything became serious. I approached the topic cautiously, telling him there was something I wanted to tell him about myself and that if he changed his mind about a second date, I would understand. “I figured that’s what it was from day one,” he replied. “We studied about it in genetics class.” I was hooked. We were together for four years.
In those four years, he witnessed one more emergency orthopedic surgery, and several infections that come naturally with EB. He also witnessed me question my initial diagnosis of RDEB.
With the increasing popularity of the internet came the accessibility to directly speak to others with EB. I discussed my symptoms with others, including my hypermottled pigmentation, elongation of wrists and vast improvement with the onset of puberty. These were all characteristics of those who had EB-Simplex, not Recessive Dystrophic EB as I had been diagnosed with at a very young age. In fact, back in the 70s, many people I spoke with who had EB-Simplex had been misdiagnosed with RDEB around the same time and questioned their diagnoses themselves as they, too, were still alive. Second biopsies had confirmed for them the misdiagnoses. My first biopsy at the age of 2 was traumatic and consequentially caused a phobia of such procedures. Thus, I opted against getting a clinical re-diagnoses and settle for a personal one of EB-Simplex Dowling Meara.
Following my graduation from college, came the question of vocation. EB, naturally, limited my choices for employment. I couldn’t work with my hands. Waitressing was out of the question, as there was little chance my feet could endure an intense eight-hour shift. I assumed I wouldn’t have made much money as an exotic dancer. My potentiality at a career in professional sports was shot at an early age and I would have never survived boot camp had I entered the military. Sarcasm aside, my choices were limited. I chose journalism, which later led to two years managing a book store and then ten years in customer service. While at the book store, someone noticed my skin and scarring. The customer pulled me aside and provided me information on domestic violence. She told me that if I needed a place to go, she could help me, that it was never OK for my boyfriend to beat me. I explained to her that he never laid a finger on me, that I’d never been beaten by anyone and that I was born this way. Embarrassed, she apologized profusely and thanked me for understanding…