"What lies behind us and what lies before us are tiny matters
compared to what lies within us."
-Ralph Waldo Emerson
| News Update: In 2004, I participated in the making of a documentary about Treacher Collins syndrome that aired on the Discovery Channel for the first time in June 2004. The title of the documentary is "Unmasked: Treacher Collins Syndrome" and it features the stories of six people with Treacher Collins syndrome, including my own story. For more info please see my webpage about the documentary, which includes info for how to order a copy of the show. |
In most every way, I am your typical, garden-variety human being. I am a third year Med-Peds (i.e. Internal Medicine and Pediatrics) resident at Baylor College of Medicine in Houston, Texas as of July 2006. I graduated medical school from the University of Texas Health Sciences Center in Houston. However, many people assume right from the start that I must not be "normal" since I don't look "normal." I have Treacher Collins syndrome.
Treacher Collins syndrome is a genetic, craniofacial birth defect that is characterized by a range of distinctive facial anomalies. The main characteristics of TCS are downward slanting eyes, small lower jaw, and malformed or missing ears. These anomalies can cause hearing, breathing, and eating problems. About one in ten thousand babies are born with it. A person with Treacher Collins syndrome has a 50% chance of passing it onto their children. In my family, my grandfather passed it down to my mother who passed it down to me.
Treacher Collins syndrome is a lot more than a pile of statistics and facts. It is about the person below the surface. People tend to give wide berth to the things and people that they perceive as a threat to them – those people who are “different” or who they don't understand. In some situations, this defense mechanism can be good. In excess, however, it breeds ignorance and heartache and leads society to shun those that aren't "normal." Thus, society does not take the time to see what lies beneath the outer shell of a person and never sees that below the surface these "different" people are just as "normal" as anyone else. It is part of my goal as a doctor-in-training to educate people about Treacher Collins syndrome and to prove to them that looks can be very deceiving. I hope to start a new trend in society where society reads the book before discarding it because the cover looks a little odd.
Given the chance to live my life over again without Treacher Collins, I would have to politely decline. I believe that the experiences in my life as a result of Treacher Collins have molded me into the person that I am today. Like anyone else, I've had many ups and downs, and to give up the lessons I’ve learned on the roller-coaster ride of life would be to give up part of myself. Having Treacher Collins syndrome, or any other medical condition, does not make someone “abnormal,” it only makes him human.
Accessories:
Batteries not included!As a result of Treacher Collins, I have a few accessories that are required to complete the picture. First of all, I don't have any external ear to speak of, so I wear a bone conduction hearing aid that is worn on a headband. One part of the hearing aid turns the sound into electrical energy, and the other part turns the electrical energy into vibrations and vibrates against my skull behind my ear. Skipping all the technicalities, the sound travels through my bone to my inner ear, and I am able to hear pretty normally. My second accessory is my tracheostomy, trach for short. A trach is a hollow tube that is inserted through the neck into the airway. (If you watch ER or Chicago Hope, you've probably seen the doctors put in an emergency trach when a patient couldn't breathe through his mouth.) I had a trach to help me breathe at night, because when I slept, my tongue would fall into the back of my mouth and block my airway. Essentially, I breathed through my trach at night and had it blocked off during the day. I no longer have the trach in...something I'm extremely happy about! With the trach, I couldn't swim or do any water sports, because water could get into my lungs, and I could drown. And yes, I could take showers, but I just had to be careful not to let the water run into my trach. Now, instead of the trach, I use a machine, called a CPAP (Continuous Positive Air Pressure), at night that blows air into my nose and therefore into my lungs. With the CPAP, I don't have any more trouble breathing at night.
My latest accessory is an electronic stethoscope.
Pinocchio's Family Tree
From the early on to the present, I have run across people that could have easily shattered my self confidence if I had let them. Junior high kids are the worst. There were many times when I was the butt of their jokes. When I was in high school, I had to ride the bus to and from school. In our small town the high school, junior high, and elementary kids all rode the same bus to a particular part of town. One boy from the junior high always entertained himself on the bus by making fun of everyone so it was inevitable that he should get around to making fun of me. He sat behind me one hot, sticky afternoon. Leaning over the seat he asked in a snide voice, in reference to my rather large nose, "Are you related to Pinocchio?" After a moment's hesitation to get over my surprise, I turned to him and calmly said, "Why, yes I am. He was my mother's great uncle's cousin's nephew. How ever did you guess that we were relatives?" Stunned, the boy clamped his mouth shut, sat down in his seat, and never said another word to me again.
Many people ask me how to deal with people like the boy on the bus, or how to teach their child to deal with such situations. Unfortunately, I don't have a magic solution to either of these questions. I do have a few words of advice. If people come up and ask questions, be open and answer their questions. Remember, it took a lot of guts on their part to ask, and by answering their questions you're helping to dispel the ignorance surrounding the unknown. If people are acting rude or staring, I do one of a couple of things. Often I just kind of smile at them and say hi. Sometimes they'll respond to my hi and move on. If they continue to stare, I'll just ignore them for the most part. Of course, if there is a really obnoxiously rude person, staring directly back at them usually makes them feel as uncomfortable as they're making you feel and they quit. If someone makes some rude comment, you could always take the path of Steve Martin in Roxanne. Here is the complete list (just for fun) of C.D. Bales' famous nose jokes given in response to a lame, but rude, comment about his rather large nose:
orchestra keeps changing tempo.""Obvious: "Excuse me, is that your nose, or did a bus park on your face
Meteorological: "Everybody take cover, she's going to blow!"
Fashionable: "You know, you could de-emphasize your nose if you wore something larger, like Wyoming."
Personal: "Well, here we are, just the three of us."
Punctual: "All right Dellman, your nose was on time, but you were fifteen minutes late."
Envious: "Ooh, I wish I were you, to be able to smell your own ear."
Naughty: "Pardon me sir, some of the ladies have asked if you wouldn't mind putting that thing away."
Philosophical: "You know, it's not the size of a nose that's important, it's what's in it what matters."
Humorous: "Laugh and the world laughs with you; sneeze and it's good-bye Seattle."
Commercial: "Hi, I'm Earl Scheib, and I can paint that nose fo Thirty-Nine Ninety-Five."
Polite: "Ah, would you mind not bobbing your head? The, ah,
Top Ten Reasons to be dIFfEreNt!!
Inspired entirely by my weird friend, Laura.10. Being Different is cool.
9. You attract the weirdest (and coolest) friends.
(i.e. Jonna, Laura, and Jenni)
8. The human scientific experiment...nuf said.
7. Noise in the middle of the night (hallway soccer,
neighbors, roommates, roommates losing chess to neighbors, etc.) all go unnoticed.
6. Everyone remembers who you are.
5. You don't have to invest in earmuffs, or
look like Princess Leia wearing them.
4. The strangest things happen...
3. All the reasons Steve Martin gave in Roxanne
2. Since everyone is different from everyone else,
being different is as normal as you can get.
1. Cinderella.
Take a look at Volume
I of my guestbook!
To talk to other people with Treacher Collins Syndrome, I highly recommend joining the eGroups email discussion group if you have TCS or have family with TCS. To join, sign up below.
Any comments, questions, thoughts, or opinions are most
welcome...., e-mail me
at amie@treachercollins.org Thanks!
Work is
quite hectic, so please forgive me if I can't reply to your emails.
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Copyright © 2006 Amie Osborn. All rights Reserved
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