Today, I am turning 39. Birthday month has been a difficult month, historically. More thoughts about what had changed in my life and what remained the same… Better or Worse… Last few years, I was able to say that I think I finally learn to enjoy my birthday without this thought process. This year, for some reason, it is hard to not think about what a journey I had throughout my life, especially living with my facial condition, Hemangioma. Particularly, how people treated me because of my face, some questions and comments I received from strangers, classmates, or so-called friends have been on my mind a lot during this month. I told myself that it is time I let go of the memories, it is, I, that is holding onto these bad memories. Finally, nobody is asking me about my face…I am respected for the work I do, the career that I worked very hard to pursue….
Well…… the universe had another plan for me. During my work on Monday, at a school, my usual weekly visit to observe one of my clients, my client’s classroom teacher asked me the following question:
“How did you get burned, if you don’t mind me asking?”
The question opened up a flood of memories, not-so-good ones. The innocent look on the teacher’s face made this situation more challenging. I realized that it’s been a long time since I had a ready answer for this type of question. I tried so hard to hide that I was caught off guard or actually truly offended! So I began the speech that I have learned to do ever since I could remember in the style that I have done all my life: 1. Big Smile (Well, most of my facial expressions were hidden under the mask, thankfully ??) 2. Say, “Oh, I was born with a facial condition called Hemangioma. I have a long medical history. (Big Smile and chuckle.)” When I became an adult, after moving back to the U.S., oftentimes, this response satisfied people somewhat, and people who asked, kindly move on by saying something like ” oh wow. you’ve been through a lot” or ” I am sorry I was asking but thanks for sharing.”
This conversation could not have gone any more different than what I “hoped.”
The teacher began with a very perplexed expression on her face, perhaps even with dismay. Unfortunately, she wasn’t wearing a face mask so I was able to see ALL her expressions. These expressions were followed by the comment, “What is it??? He….mo… (Typing into her computer in the Google Search Engine)” I gave her the correct spelling as it was too late to stop her, and I might as well as give her the correct information, so I thought. As I continued with the explanation, her eyes were only glued to the computer, the search result. Then she asked, ” You got it on your liver???? (she interrupts my explanation…) oh.. here it says face too. (pointing at her computer screen)” When I proceeded to mention that it is part of a syndrome… well, of course, she needed spelling for that condition, too, PHACE syndrome. She proudly then continued her research as I was continuing to explain.. that PHACE stands for each body part/area that the syndrome may affect….. She pointed at the word, Posterior Fossa, as I was explaining that occurs in the part of the brain, and said, “This is not Brain! Posterior doesn’t mean Brain!”
Well, at this point, I began to wonder what universe I was in or have I had fallen asleep, and I am having a nightmare?? If it was a nightmare, it was certainly the one I couldn’t wake up from because it continued with the following question from the teacher.
“Did your parents ever tell you why this happened to you? I mean… did your mom have something?”
I had to use all my strength to keep that BIG Smile and my Professionalism. You see, she wasn’t a stranger that I didn’t have to see the following week. Also, one wrong move on my end can be a problem for my job. That final question, the first question, and the reactions… it’s familiar.. very sadly familiar… I was asked before multiple times in my life, especially during childhood. Also, my parents went through those questions and more. Each time, we dealt with them in with the kindest responses and explanations with the idea that if we want to teach other people what is appropriate things to say, we should model those behaviors. Well, the very philosophy behind the work I do as a behavior analyst working on people’s behaviors. It was needless to say that I was very glad that I had my own therapy session (counseling) session scheduled for Wednesday.
The fact is… no matter how old I become, no matter how long I have heard these questions, these questions bring me right back to when I was 5. The feeling I have about what people said to me about my face…all the assaults I received… all the nicknames I was given… So, I went through the last two days of thinking and thinking about what I could have said better that could have stopped this teacher.
Then I stopped and said to myself…
“I am very proud of myself… VERY Proud that I did NO HARM to this teacher!” I am going to leave it at that because the truth is… Some things Never Change, good or bad… It is okay that I give myself a break from taking on this un-told mission of mine to change what people say and think about my face because it’s Simply Just Mine.
Happy 39th Birthday to Me and Happy 9th Birthday to Simply Just Mine! Cheers to all of us living with facial differences enduring the ignorance of others~
Sincerely,
Simply Sarah
