My throat is sore when I swallow. When I try to speak, I can hear a rasp in my voice. “Oh, no, I must be coming down with a cold.” I start preparing my comfort foods, ginger-lemon tea and homemade soup. I check the medicine cabinet to make sure there are still cough drops left from the last time I had a cold and while I’m in the bathroom I gurgle with warm salt water.
Nostalgia settles in my chest with the tickle in my lungs. I want my mother to tuck me in under the warm blankets and put the soup to simmer on the stove. I crave her care, just as I did when I was a child, more than the tea or the soup. I think of all the children who rarely get noticed by their mother or other important adults in their life unless they are sick. I’m thankful that was not the case for me, nonetheless, my unusual bleeding disorder brought a level of benefit. Many of my childhood friends were jealous of me. They wanted the special consideration I received from their parents or teachers. Doctors, nurses, even phlebotomists were more interested in my “special case.”
For years it seemed to me that the thing that made me special was my bleeding disorder and over the years it became more and more a part of how I defined myself. I was in high school when my hematologist said, “I believe we will have a cure for afibrinogenemia one day,” I was frightened by the idea. Who would I be if I had blood that clotted? What would make me special then? I had received enough attention that I realized there was a downside to being ordinary.
If you had asked me, I would have said that I disliked being treated differently than other children. That was true, but it took me years to admit that there were some perks. By that time I was an adult and I had developed strengths and abilities that had nothing to do with my bleeding disorder. It seemed shameful to me to face up to the reality that I actually liked being a certified princess, one that bruised easily and required special care.