Married in Sequined Slippers (Part III)
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 the things everyone else could. Pull-ups would shred my hands, as would push ups. If I had been hit by a ball, my skin would have come off upon impact. 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.
Junior High was brutal. In a time where awkwardness is already looming, I had six previous years of taunting behind me. I faced those three years of middle school shell-shocked. I had become shy and started feeling that most kind gestures by others were simply acts of charity or pity. Who would want to hang out with the grotesquely skinny girl in the wheelchair with difficult-to-explain bandages and sores? Who will want to date her when that time comes?
The summer before my freshman year of High School, 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 that left 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. I spent my lifetime moving every two years and now, I had to again. Again, I had to deal with new stares and new questions. Again I had to explain to my peers that they wouldn’t catch what I had. Again I had to create a new set of friends that I could trust. Again, I would not only be the outcast because I was the new kid, but I was again the new kid in the wheelchair with some unknown anomaly.
By High School, I was a wallflower. I had few friends and felt ‘categorized’ since some of my classes were slotted with others with physical and mental impairments. Much of the teasing had stopped by this time, but with the constant plague of staph infections and small breakouts, self-consciousness was still an issue. With the onset of puberty, however, I was able to walk more and blisters were less frequent.
My feet were always 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.
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 my senior year of high school, I was leaving my wheelchair in the office in the mornings and spending my entire day on my feet at school. Dating, however, was still out of the question. I was never asked to any of my proms, so I didn’t go. Even if I was asked, however, I would have probably felt shy and that it was a gesture of charity. Any time I was asked out, it was as a prank and thus, I shied away from the notion of dating and kept to the few friends I trusted. By my senior year, however, I started opening up. Were people becoming more accepting or was I becoming more self-confident?
Over the next few years, I discovered the internet, and began second guessing my initial diagnosis of Recessive Dystrophic Epidermolysis Bullosa and accompanying ‘death sentence’. Things were not adding up. I didn’t have the classic webbed fingers. Only one toe on my left foot was webbed to the ball of said foot. I had no esophageal closures. I had no dental issues at all. I was improving with age instead of getting worse. My childhood friends and hospital roommates from childhood were all passing on. Ben was gone. Ray had died. Bobby had passed on as well. Most impactful was the loss of my personal hero, Eric, who lost his own battle with EB not long after I graduated from High School. Something was just not right. I was still here and they weren’t. It didn’t seem fair…
Posted on October 30, 2012, in Current Events, Epidermolysis Bullosa (EB), Family & Marriage, Parenting and tagged adolescence, dermatology, disabilities, disability, disease, disorder, EB, EB awareness, Epidermolysis, epidermolysis Bullosa, family, health, skin, special needs, teenagers. Bookmark the permalink. Leave a comment.