I am a vampire. Two stalactites fit in perfectly between the monolith that is my single bottom tooth. 'Fangs' are what my Uncle Mark (second to be born with the disorder) and I call them. Along with blindingly light skin, long nails, and fear of sunlight, I might as well be devouring helpless heroines in the dead of night. Maybe I'd feed solely from their sweat in pursuit of immortality and the ability to be out in 95 degree weather. I wonder if anyone pitied Dracula.
I and approximately 7,000 others worldwide are afflicted with a group of at least 150 syndromes known synonymously as 'ectodermal dysplasia'. The disorder is medically defined as "heritable conditions in which there are abnormalities of two or more ectodermal structures such as the hair, teeth, nails, sweat glands, cranial structure, digits, and other parts of the body." My family and I have come to refer to it simply as 'ecto'. 'Ecto' is mainly diagnosed in fair Caucasian males; like God's getting back at us for general bigotry. A genetic disorder, Ecto is therefore hereditary and can be passed to a carrier's children in 3 ways: if Ecto is an Autosomal dominant trait, there is a 50% chance that each of one's children may be born with the disorder. Recessive, and there is an only 1 in 4 chance. In my case, the X-linked recessive, "there is a 50% chance that each male child will receive the abnormal gene and be affected and a 50% chance that each female will receive the abnormal gene and be a carrier (like the mother)". My hypothetical daughter will have the disorder, and my hypothetical son will not, as she would receive my x-chromosome and my son would not. I wonder if they'll be lactose intolerant. I am.
The origin of ED in a family is comparable in the medical field an immaculate conception: the mutation of a gene in a Mother or Father for no other reason than to exist. Edna, my Great-Grandmother, unaffected by the disorder, has 3 out of 5 children, 2 out of 15 grandchildren, and 2 out of 16 great-grandchildren with Ecto. 86 years of age at the time of writing this, she has lived in Sylvan Lake, Alberta with her husband John for 30 years, moving there after her divorce from my Great-Grandfather, Stanley. A professional horse-racer in South-western Ontario, Quebec and the United States, my Great-Grandfather remarried and produced two daughters (my Aunts Sarah and Katelyn) and, passing away last year at the age of 88, is lived on by the both of them and Sarah's three children, all unaffected by ectodermal dysplasia.
Our family is as tight-knit as one can be. Coiled in binding double-helix handcuffs. My Grandmother calls me every day, as does my Mother, Grandfather and Uncle. The genetic rope is thick between us. Claustrophobia ensues. A suffocating love. The questions of adoption common among adolescents in straight-to-TV movies aren't asked, can't be. But someone doesn't fit. I drown out the arguing upstairs. I pinch my nose in wait of oncoming smoke. Cigarette or forest fire. Arson. "The disorder is passed from one parent to either children". Mother to sons. Father to daughters. It's hot up here. I can't breathe. "The ax is already at the root of the trees", and we are rotten fruit.
My Mom told me once that she wasn't sure whether or not she was going to have me. I remember feeling the weight of an alternate universe in which I did not participate. Picked last and too late to play in the pick-up soccer game. My Mom, charged to carry all of the what-ifs. I saw in the almost too-much love of her face a guilt abolished in admittance. She said that she feared how I'd turn out. What the disorder would do to me. I lump the two together. She does not.
The fame of my condition proceeds me. A person with ED is generally a beacon for the abnormal: a porch light on Summer nights, beckoning curious bugs. I get asked if I'm undergoing chemotherapy. I used to wish that was it. That I had cancer and I was gloriously fighting every day for my life. Instead I was vomiting up medical terms that no one understood nor cared to. They were too busy wondering when I was going to spit my too-big set of dentures out on another hard 'K'. Chemo-"oh wow, he can juggle his own teeth!" The physical manifestations of the disorder can vary from mild to stark. Some general characteristics are thin hair, abnormal cranial structure, odd skin pigmentation or redness, long nails, and myriad others. Superficiality aside, these often do not stunt a person with Ecto medically. People born with ectodermal dysplasia often show little-to-none of the formal 32-teeth and a range from minimal to no form of perspiration. These are the pillars of Ecto: defining the disorder medically and, depending on the severity of one's particular disorder, are the hindrances in the pursuit of 'normality'.
Sitting in my Grandmother's brownish-orange living room between her and my Grandfather watching Leslie Stahl of '60 Minutes' on mute. The three of us sit in this room, my Grandpa unabashedly silent. I'm asking her what it was like to be the first in our family with Ecto. She didn't humour me for long, briefly mentioning a 'Dr. Valentine' who finally put a name to her many seemingly isolated 'syndromes', tying them together with arrows 'til death do they part. Her major concern is to know how I have dealt with the disorder, while I shoot the same questions back. I had the comfort of knowing what the hell was going on with me, and, therefore, the ability to respond to my braver classmates' questions of "why I look like that". "Can I catch it?" was generally the next question, as the, wide eyed, backed away. They were reassured. For 65 and 21 years, we have attempted to assimilate into a world sick with the fear of the ill. Paranoia-mongering is the plague of innocently non-contagious disorders, cancer sufferers, and ethnically convenient persons at your local airport.
My 76 year old Grandfather does not have the disorder. His wife, both children and both grandchildren, however, are all affected. His life has brought him to and from either coast of Canada: the majority of it spent working on the banks of the St. Lawrence River and frequenting bars in the area. I wonder if he ever imagined what his family would be like. If he'd read this story if he weren't a part of it. I wonder if he tells it.
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