I wonder what they’re thinking when they look at me. Are they looking at the bruises on my arms and legs? What about the needle marks on my arms? Perhaps they notice my medical bracelet.
Living with hemophilia often leaves visible marks on one’s body that the outside world may not understand. Sometimes, even a minor bleeding episode can leave hemophiliacs looking like they’ve been beaten with a baseball bat. People stare. Some give looks of pity. Others give looks of disgust. And some just gaze in bewilderment.
I got used to both the bruises and the stares early on. When I was in the first grade, I was playing outside with our dog when I fell and smashed my face on a wooden beam on the ground. I wrote about this incident in a previous post. What I didn’t write about was the aftermath.
In less than 24 hours, the entire left side of my face had swollen so badly from the bleeding that my left eye completely disappeared, my nose melded into my face and my mouth pulled severely downward on the left. At that moment, I was in such horrific pain (it makes me cringe recalling it) that the last thing I cared about was how I looked.
After repeated trips to the hospital for transfusions (this was around 1974 or 1975) over a week or so, the bleeding resolved and the swelling subsided somewhat. I was left with a nearly unrecognizable face with deep black and purple bruises, a caricature of my former self.
Out in Public
Again, I didn’t think once about what I must look like to others. I was just a child, after all. About two weeks after the incident, I got a dose of reality when my mother took me along with her to run errands. Our first stop was the bank. I happily walked in with my mom holding my hand. The woman at the desk near the front door nearly gasped when she got a good look at me. The teller gave my mother a dirty look as she cashed her check. Perhaps she thought my parents had beaten me. Who knows?
The next stop was the grocery store. On this particular day, Safeway was pretty crowded, mostly full of housewives, like my mother, doing their weekly grocery shopping. As we passed people in the aisles, I noticed the stares. It made me very uncomfortable. I saw the looks of pity—you could almost hear them saying, “Oh, you poor little thing!” I saw another lady with a wrinkled-up face. You could tell she must be thinking, “Gross! What happened to him?”
The final woman is the one I remember most. She took one look at me and marched right up to my mother and demanded to know what had happened to me. Now, if you knew my mother, you’d know she was quick-witted and had a sharp tongue. There was no mincing of words with Edith.
Before my mom could offer an explanation, the woman blurted out, “You should be ashamed of yourself! How could you let this happen to a poor, defenseless child?” Now, like I said, I was only about 6 at the time, but I knew to hold on to my Buster Browns, because this woman was about to get a big dose of Edith! My mom didn’t take criticism too well, especially when it came from ignorance.
Find out what happened next and how I deal with the outward signs of life next time in “Signs of Life, Part 2.”