Fracture Free Friday

In last week's Fracture Free Friday post I had a lot of fun reading the questions that folks had emailed in for me to respond to. I ended up choosing three but have decided to keep this going! Now in EVERY Fracture Free Friday post I will answer one question a reader submits.

*Note: Fracture Free Friday question is a question submitted by a reader that I choose to answer. It does NOT have to be related to O.I. and can be about anything you wish to know about me. These questions can be emailed to me at:

Fracture Free Friday Q: How do you feel & respond when doctor's you see bring in a "trainee" or other professional to observe and use you as an example of O.I. characteristics? 

A: My answer to this will be slightly biased because my older brother is currently a resident at Children's Hospital in Boston (a teaching hospital). Having a family member who is a doctor-in-training can really skew your perspective on the medical world but I will share a story with you nonetheless.

I don't remember how old I was but certainly old enough to remember feeling embarrassed and to understand what an animal at a zoo must feel like. It was an "eye-ologist appointment," at least that's what I told teachers that day I was dismissed early from school. 
It was an annual check-up, just a check-up and I was expecting the usual routine. Reading letters from the chart, watching cartoons on the t.v. while various sized lights were shone into my pupils, following fingers around the room, and those stinging eye drops that makes everything blurry. My younger brother went first and I watched as he went through the usual exercises without any hoopla or concern. After Andrew's eye drops were put in the doctor swiveled around and that's where any vision of a 'routine check-up' vanished for me. 
"Now, Sandy, it's your turn!" He flicked the lights back on in the room and flipped open my file. My mom picked me up and put me into the exam chair. 
"Alright, so let's see what we have here..." A small light was shone into my eye, then he flicked it off and looked at me, then he shone the light into my other eye and looked at me again. I began to get a little worried as I didn't remember Andrew having had to go through this, what was going on? My eyesight is fine, nothing was hurting or bothering me. 
"This is so cool" he murmured. I sat there with my eyes now propped wide open out of curiosity and fear, as far as I knew there was nothing 'cool' about my eyes. They were just.. eyes. 
"Did you know that your sclerae is blue?" He turned off the light scope and looked at me, and then at my mother who just smiled amusingly. I relaxed in the seat immediately and breathed a sigh of relief, so that was what he thought was "so cool?" Big deal. I see them every day, every morning. 
"Yea I know" I replied. How could he expect me to NOT know? Did he think I was some dumb kid in a wheelchair?
"Do you know why?" His eyebrows shot up as he grinned at me.
"Cuz of the O.I..." I said now unbelievably bored. 
"Exactly! Excuse me, but do you mind? I'd like to bring in some colleagues?" He turned to ask my mother and flicked the exam room lights on again, he was already half jumping out of his seat and out the door before she responded. The door was flung open and I could hear him hurriedly rushing down the hallway and calling out to his doctor-friends "hey guys, you gotta come see this. This is so cool!" 

Then they came in. All of them. I sat there rigid in the exam chair that now seemed like a throne as my subjects came humbly before me. So many white coats and suits, all of them with the same nervous smile standing there uncertain as to what to do. I'm just a harmless kid, it's not like I am going to bite you. I wish I could have told them how idiotic they looked to stand there timidly - looking afraid of whatever disease I might spread that their brains were now trying to guess at, I'm not a sick bear at a zoo for christ's sake!
"Okay, now, this is Sandy. I want each of you to take a turn looking into her eyes and tell me what you see." 
They all shuffled into line in front of me and I continued to sit there disappointed that my humble subjects were not going to present me with royal gifts. One-by-one they knelt down and poked their faces at mine peering into my eyes. I remember awkwardly trying to not stare back at them but to look around their faces instead. 
"Oh, her sclerae is blue. A characteristic of O.I." the first one mumbled at me. Good job you answered correctly, you get to keep your head on your shoulders my loyal subject I thought to myself. After the last one had shuffled forth and everyone's curiosities were satisfied the crowd was herded out of the examination room and the check-up returned to normal. 

I grew up knowing that I have a rare disease and had experienced first-hand the consequences of having a rare condition. Most doctors and nurses had never heard of O.I. and if they had it was only in textbooks or med school lectures. It's frightening though, as a child, to have a room full of white coats gawk and poke at you like you're some unidentified object under a microscope. 
From my experience the best curious doctors have been able to humanize their medical curiosities. They didn't just treat me like a rare disease - they realized that I am a patient and a person first. Though it doesn't make me feel any less embarrassed about the whole situation, at least I am comfortably embarrassed.

Now that I am older (and have an older brother who was a medical student) I understand the importance of experts in the field using their learning experiences. Sometimes though I am wary of being mistaken as "the classic O.I. case" (I don't believe there is one!) So my responses are appropriately framed to their questions to make sure that they know I should not represent every O.I. person that has ever ruled the world!  

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One Response to Fracture Free Friday

  1. I vividly remember those days. I would go in for a checkup at my doc's office, which of course was very frequent. Most of the time, it would be just me and my mom. I would be sitting on the examination table with the paper lining and the door would burst open. He would pop in holding my huge folder (it was so thick it wouldn't fit in the slot on the door, so they had to put it on the floor in the hallway) and the next thing I know 4-5 people would quickly follow behind him. Oh crap! Again! I would throw my mom a quick, mean look hoping she would put a stop to it. lol. I knew exactly what he was going to ask me to do. He would, of course, introduce me and my mom and then he would ask everyone to "guess my age." They would all get it wrong. They would guess 4-5 but I would be well over ten. Which of course irritated me. What ten year old wants to be confused for a five year old? He would then ask me to "show them my bottom teeth." So I would stretch and lower my bottom lip and make that Bart Simpson look. They would all take their turns. Then he would ask them to look into my eyes. I would widen my eyes, feeling absolutely stupid. He would then tell me to stretch out my legs, arms, etc. Sometimes he would even lift the back of my shirt so they can take a look at my back. Then he would finally ask, "So, can anyone guess what she has?" Most of them would get it wrong but occasionally some would answer correctly. I never liked that at all. I felt so self-conscious. They would never say anything to me. Just stare. Seriously, I get enough of that from the public and I come here and get it too!? Totally annoying! Now that I'm older I guess I can understand the need to learn what to look for and the best way is to physically see people with rare diseases, but still, I hated those moments.


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