"What's your name?" I asked the girl walking next to me at freshman orientation, ignoring her friend beside her.   "Jonna, and this is Amie.   I live in California but Amie is going to school here next year."   I think Amie and I might have said hi to each other, but nothing more.   Her appearance made me very uncertain of her reactions and what I should say.   She must have only weighed about eighty pounds and was very petite, but what bothered me was her face: it was drawn in where cheekbones should have been, making her abnormally large nose stick out more, and her eyes, that were partly covered with extra skin, looked even smaller.


On the first day of school, Amie was the only person I recognized from orientation.  Since I lived in a different district from all my friends in middle school, I did not know anyone so Amie and I ended up eating lunch together.   We had the same English teacher, so we began calling each other to study and talk about homework.  I called her from my baby-sitting jobs when the children were in bed and we talked forever.   At that age we had just begun to explore thinking on our own and we tested our ideas against one another.   We talked about our moves from other states, friends, and other important things.


One night, around ten, which seemed extremely late then, Amie and I were talking seriously when I quietly asked her if I could ask her a question, but she would have to promise not to get mad.   I was so unsure of her reaction and my decision to ask her that I made her promise not to get mad until she exclaimed, "Just ask!"   So I asked her, "What is wrong with your face?"  I wasn't sure about asking, but on the other hand I wanted to know.   We had been friends almost a complete semester before I could find the courage to talk to her about it.   "I have Treacher Collins Syndrome," she said, then she explained it.   It is a genetic disease that affects certain facial structures.  The disease made it impossible for her to sleep during the night with out a surgically inserted tube into her air passage way called a trach.   Amie was also born deaf but because of the presence of an inner ear, she could wear a type of hearing aid that is wore like a head band, giving her almost completely normal hearing.   I asked her if people had teased her as a little child; "A little" she replied.   I asked her if she minded talking about this and her response was that people automatically assumed she did, but she really did not mind at all.   I thought then how stupid I was to be afraid of asking and how dumb it was for people in general to be afraid of getting to know people like Amie.


We grew together to be best friends.   Some nights after baby-sitting, if I was in her neighborhood, we would on the spur of the moment have a sleepover.   Our friendship grew.   We laughed through my many guy problems and her lack of them.  We shared our secrets and problems.  Amie was always there with some words of wisdom that seemed to fit into every situation, even ones she had never been in.   She was there to tell me I was being stupid or to tell me to shut up.   I do not know why I was there, because Amie already believed in herself, even more than I believed in myself.   She showed me her confidence in everything she put her heart into, but sometimes also in the weirdest ways.


At the semester I was transferred into Amie's English class and we sat next to each other.  I was on the other side of her hearing aid, so when I was dreaming in my own private world and missed what the teacher was saying, I could not call out Amie's name because she would not hear me.   I always tried whispering her name first, but to no avail.   In desperation for the answers to whatever I had missed, I got creative and threw my pen cap at her.  She was at first startled by it but then quickly laughed at my idiocy.   Throwing my pen cap became the easiest way to get her attention, so I used it often.   The only problem that arouse was that ever time I threw my pen cap she had to retrieve it and give it back.   On my birthday Amie handed me a beautiful red little box.   It had a gold castle embossed onto its lid.   Its color and neatness intrigued me, so I opened it carefully.  Inside the little box were more than a dozen pen caps, all for me!


Amie has had a few surgeries since I have known her.   One surgery that took place after my sophomore year was done in hopes of creating an air passage that would stay open at night.   The doctors believed her breathing problem was in her receded jaw.  They managed to take some rib grafts from Amie and put them into her jaw.   The major surgery took place while I was on vacation, but I sent her a have fun in the hospital care package, and it became a tradition.   She had her trach removed in December that year, and despite all her self confidence, I know she never wants to have a trach again.   It is one step closer to being normal all the time.


She had an opportunity the next summer to have extensive reconsructive surgery.   I went on the final doctors' visits with her.  Bringing out every test results they could find, they showed us that they would reduce her nose, cut open her eyes farther, and take bone grafts from her skull to create cheekbones.   I was nervous about all that cutting up and rearranging so I made jokes with her about being the human scientific experiment.   The doctor leaned over toward Amie and told her a trach would have to be placed in, possibly for good.   Amie burst into tears hearing that news, showing us how much she abhorred the plastic jail that kept her from swimming and taking showers easily.   In response both her mom and the doctor said she did not have to have this surgery.


Amie called me the day after I gave her an envelope with water colors and some busy things for her hospital stay, and told me she was not going to have the surgery.*  I was neither happy nor sad, I knew that was completely her decision, but I was bursting with pride.  Amie decided she liked herself just the way she was; for the same reasons that I love her as my best friend.   Her face was only a Mask.


I have learned not to look at people on the outside, but to see their worth from the inside.   Amie brought back to me the innocence of a child that does not understand differences.  To any fool Amie looks strange and unique; to me she is more beautiful on the inside than any of us could dream about being.



If you'd like to email Laura, her email address is laura@spaceship.com


*Note: I did end up having the surgery that Laura referred to the following summer. It was entirely my own decision to have it done. I do not regret my decision.

“Amie’s Mask”

by Laura Albright

About Me



Click on one of the pages below to read more about my story:


Accessories

Pinocchio

Amie’s Mask

Top Ten


From the parents’ perspective:

Surgeries

Dealing with Insurance

School and Social Issues