This is the third in a blog series on Epidermolysis Bullosa (EB) as part of EB Awareness Week (October 25-31).
My mother turned 28 on October 25, 1974. On that same day, she received a phone call advising her that her one-week-old infant would only live for about two weeks. As a mother now, myself, I can only imagine how much her world sank around her. I had been diagnosed with Epidermolysis Bullosa Dystrophica at birth. The doctor that delivered me had seen one other case before in a set of twins. They died.
On November 12, 1974, I was released from the hospital. I was kept under sedation for much of that month to minimize my movements and thus, minimize the damage I did to myself. They took me home to die that day… Or I guess, to live.
I was kept under sedation at home as well. I could not wear clothing, as the elastic and lace would blister and peel off my delicate skin. Diapering was also done precariously. Cloth diapers were the protection of choice, but could only be laid under me and not wrapped around my legs and waist. My parents could not pick up and cuddle their newborn whenever I cried, as that would have done more physical harm than the hug would have done good. I couldn’t be held under my arms. I had to be carried carefully; one hand under my rump and the other under my head, with a barrier (ie a blanket or towel) between our skin. Even then, sometimes that wasn’t enough to prevent the inevitable damage.
By the time I was six months old, I was able to wear diapers. Sedation was stopped since I wasn’t interacting or reaching the milestones I should have by now. Soft, loose-fitting clothing was special-made by my 85-year old great-grandmother.
Those two weeks went by. I turned one, then two, and three and four. By this time, my parents had been told that the risks were high of having another child with Recessive EB. They chose to not have any more children and took appropriate measures to ensure that.
My physical delays were becoming apparent. I could crawl, but wasn’t using the palms of my hands. My knees were bandaged constantly due to the damage crawling had caused. My ankles were becoming severely pronated, which resulted in me having to wear special orthotic shoes.
I remember my first steps. I was four. I couldn’t walk long distances, however, as simply walking from the living room to my bedroom would cause severe blistering. The orthotic shoes would also blister my ankles.
Treating EB was never easy. It was a nightly course of pain, migraines and pills. My sores had to be opened and all wounds had to have antibiotics applied to prevent infections. I was too young to do this myself, and so it was up to my parents to hold me down, kicking and screaming while the painful, often stinging, routine was drug out from head to toe. I had my birthdays and Christmases ‘off’. Summers were even worse as humidity worsens the symptoms. Lesions become larger and more rampant during summer months.
I was placed on dilantin, to again lower my metabolism and movements, hoping that this would lessen the rapidity of blistering. The already arduous routine was now accompanied by another hour of counting every bullous. I became inattentive and lethargic and my sore areas failed to decrease. The drug trial was a failure.
I started Kindergarten just before my fifth birthday. My teachers were taught how to carry me properly. Due to my small frame, I was still easily fitting into a small umbrella stroller. This was my mode of transportation.
Halfway through that year, in early 1980, we moved to Monroe, Louisiana. My mother briefly inquired about putting me into a small kindergarten, but they turned her down, saying that they could not accommodate my needs. I spent the remainder of the school year at home while my parents searched for a school that would best suit my needs. A smaller environment was decided to be best for me, where the teacher could give me the 1:1 attention I needed. And so, in September of 1980 I started my first grade year in a small parochial school. That same day, a wheelchair was delivered to the school for me to use.
I continued to use a wheelchair throughout my elementary years, while only being able to take a few steps at a time. I dealt with the teasing and discrimination that comes with that territory. I was called ‘retarded’, ‘leper’, ‘gross’, ‘ugly’, ‘stupid’.. you name it. People would pinch, hit, push or simply loathe me just to see what the poor disabled girl would do. Sometimes, it would land me in the nurse’s office. I would be teased, taunted or even ridiculed. I remember once, in fourth grade, even a teacher made fun of me. My mother had even once been accused of child abuse. I had friends though. I had plenty of them! Even today, I still communicate with and regularly see several of them. They unfortunately didn’t mask what was slowly causing self-consciousness.
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 shell-shocked. I had become shy and started feeling that most kind gestures by others were simply acts of charity. 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? While in eighth grade, I was kicked once, pushed several times and was relentlessly taunted by “Mike”. In the middle of my freshman year in High School, we moved to Minnesota. Like many teenagers with EB, I became depressed.
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, thank goodness, 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. 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 my Senior Prom, 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. I didn’t go to Homecoming dances or any formals throughout high school for the same reasons. By my senior year, however, I started opening up. Were people becoming more accepting or was I becoming more self-confident?
By this time, I was seventeen. 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. My teeth were perfect (no cavities!). 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… (To be continued on Saturday)
Recommended: Garrett: The Boy Beneath the Bandages Warning, EB is not a pretty disease. It’s not neatly packed into one nice box with a bow. It’s not a hidden disorder either. EB is blunt. It’s tactless and almost impossible to hide from others. EB can be disturbing to some. If you chose to watch the video (which I encourage you to do!) know in advance that the most severe forms of EB (as is depicted in the video) closely resembles a third-degree burn much of the time. Choose your surroundings when watching the video carefully.