Media Monday: Barrow Neurological Institute Takes Stand Against Bullying

Time for a Media Monday post that will warm your heart and truly inspire you. Watch this video from the Barrow Neurological Institute and read below for the article about the project.



SOURCE: http://sports.yahoo.com/news/barrow-neurological-institute-takes-stand-192900746.html

Barrow Neurological Institute Takes Stand Against Bullying

Produced by the Barrow Cleft and Craniofacial Center, the two-minute video features patients with craniofacial differences, including cleft lip and palate. The video’s message is simple: There is beauty and “wonder” in everyone.

From birth on, children with craniofacial disorders encounter a multitude of challenges, including special feeding during infancy, multiple surgeries and dental procedures, speech therapy, and other intensive care.

But for many of them, accepting themselves and being accepted by others remains a challenge.

“The piece that makes or breaks our patients in life is acceptance,” says Patricia Glick, DMD, a member of Barrow’s craniofacial team. “It is an important part of their lives—to connect with others and be accepted.”

The Barrow medical professionals believe that children who see and learn about craniofacial disorders are less likely to stare, ask cruel questions, taunt or reject peers with facial or skull differences, and are more likely to be accepting.

“I would like our patients to be able to feel like just another face in the crowd,” says Lori Takeuchi, Program Coordinator at Barrow.

Nearly 7,000 babies with cleft lip and palate are born in the U.S. each year. The Barrow Cleft and Craniofacial Center, supported by the Inzalaco family, is among the largest, most comprehensive craniofacial programs in the nation.

Awareness of craniofacial disorders is growing. The Children’s Craniofacial Association is sponsoring the 12th Annual Craniofacial Acceptance Month in September, andWonder, a movie based on the best-selling novel by R.J. Palacio about a child with a severe craniofacial disorder, will debut in theaters in 2017.

Schools reading Wonder can contact Barrow at 602.406.3560 to learn more about educational anti-bullying sessions for accepting children with facial differences.

About Barrow Neurological Institute

Barrow Neurological Institute at Dignity Health St. Joseph’s Hospital and Medical Center in Phoenix is internationally recognized as a leader in neurosurgery, neurology, neurological research and patient care. Learn more by visiting barrowneuro.org.

Watch and share the video.
Read about how Barrow is interacting with Wonder.

View source version on businesswire.com: 

http://www.businesswire.com/news/home/20160914006282/en/

Ellia Shares Her Story

Last month, 8 year old Ellia Schultz from Ohio presented her story during Craniofacial Acceptance Month. She created this presentation almost completely by herself and then presented to her Diversity Club at school. We hope Ellia's presentation will inspire other CCA Kids to share their stories at school. With every presentation, school visit, or Skype session, we are widening the circle of acceptance and making the world a kinder place.

Ellia, we are so proud of you! Thank you for sharing your story with us, too!

Check out her awesome presentation via SlideShare here.

Ellia's Class Presentation from E_Mossholder

#ClickwithCompassion: TED Talk

This week, we're examining how we can prevent bullying and make the world a kinder place. Today on the blog we are featuring a TED Talk released this spring, when Monica Lewinsky reentered the public sphere with a new campaign #ClickwithCompassion. Her story, now infamous, is also a powerful examination of the culture we've created. Her critique of the "Price of Shame" is a way to reframe the conversation on shame, differences, bullying, and kindness. Her advice is to consume media responsibly and #ClickwithCompassion - your choices are your voice and your voice can overwhelm the bullies.

Standing Up to Cyberbullying

CCA wants to make the world a kinder place.

One way we accomplish that mission is to prevent and end bullying, in schools and online.

Unfortunately, many of our CCA Alums & Adults are familiar with bullying tactics and have been bullied by classmates, peers, and even adults. Today's post is a personal account of how CCA Adult Frederick Seitz handled a bullying situation. 

Stay tuned this week for informative, inspiring posts about living life beyond bullying. 

Together, we'll #EndCyberBullying through education, empathy, assertiveness, kindness, and courage.

Be Ruthless to #EndCyberBullying

by Frederick Seitz 

Little over four years ago, in the September of 2010, I bought my first car -- a 1999 Jeep Wrangler Sport. I saved up a lot of money from my birthdays, holidays, and special occasions over pretty much all my life up to that time. I was in my senior year of high school at the time. I was thrilled to show it off to my friends, classmates, and family. Little did I realize that only a week later, I would become a victim of cyber bullying on Facebook.

A female classmate wrote a Facebook post that didn't mention me by name directly but described attributes that people knew were only related to one person: ME. I don't remember her exact words but the post mocked my disabilities including my craniofacial difference, my deafness, and even my religious beliefs. It was clear to me that she was extremely ignorant of my true abilities and of the fact that deaf people can really do anything EXCEPT physically hear sounds. She mocked my ability to drive and went far to question why I even have a driver’s license.

Unfortunately for her and lucky for me, her post backfired completely on her.

Soon, dozens of comments from my classmates posted, all rallying behind me as they called her out for cyberbullying me. I remember reading the comments and I was surprised at how many people were defending me. That time was one of the times I learned who my real friends and allies were. The next morning after I learned of this harassing post, I brought a printed-out hardcopy of it to the principal’s office. It wasn't long before the word went around most of my other classmates about this disturbing incident. Shortly after this, I confronted this female classmate face-to-face and told her that I knew what she wrote about me.

What happened next proved what I suspected to be true: she claimed that she thought my deafness and my craniofacial difference would impair my ability to drive.

Honestly, her excuses enraged me. How could she - how could anyone - believe this about me?

However, I used this event as an opportunity to set the record straight in front of my peers and to understand what motivated her actions.

I was proud of my ability to save money from hard work and a generous family, which I am fortunate to have, and I was insulted that she would publicly belittle me and assail my abilities, when I am clearly thriving in this world.

Whatever motivated her actions: envy, insecurity, or anger, I knew that her issues did not have to become mine. Responding to cyberbullying takes courage and empathy, assertiveness and ruthlessness.

To respond with ruthlessness means:

Do not show them that you're afraid, ever.

That's how bullies control you: fear. But beyond your fear, realize that two common reasons people bully are out of ignorance and for control. You can correct the ignorance through empathy and education and you can remain in control of the situation by choosing to be courageous and assertive. 

Rely on the people who come to your defense, too, for they are your true friends and allies. Remember that.

Forgive Your Bullies, and Forgive Yourself Too

Our second post in our #EndBullying series is a reblog from The Washington Post's Kiley Bense.

Bense takes a look at the tendency for the bullied to become bullies or participate in bullying, even while they are victims themselves. The complexity of this issue makes it hard to recommend specific courses of action because the solutions truly lie in all of us understanding ourselves better so we can respond effectively to each situation and model assertive behavior.

Below are excerpts from Bense's article, but you have to read the whole post ... and see the photos.

As a kid, I was bullied. But I bullied, too. Does that make me a victim or an aggressor?
by Kiley Bense

As a child, I’d been a fearless know-it-all. In my teen years, I sank into myself. I became defensive and prickly, slinging sarcasm and insults to fend off teasing. Insecurity chewed away my confidence. I began to expect that any interaction with a peer was doomed to end in humiliation.

***

More than the tales we tell about others, the stories we tell about ourselves are only half-truths. Sometimes we’re trying to protect ourselves; sometimes we discard memories (purposefully or not) that don’t fit the person we’ve become or would like to be. But there are always traces of editing and rearranging, the fingerprints of time and interpretation.

***

I can’t deny that there’s pleasure in feeling fellowship with a group bonded against a common enemy, however opaque your reasons for that aggression may be. The fact is that human beings relish a witch hunt. We love a mob scene. We can’t wait to lob our frustrations at figureheads.

Most kids, like most people, aren’t ringleaders; they’re just swept up in the clamor and pull of the crowd. They are afraid that if they protest they will become the target instead. Middle schools, full of the vulnerable and shame-faced, are ruled by this fear, and so once was I.

***

The world isn’t neatly divided into bullies and the bullied; all victims conceal sins, and all villains carry sorrows and scars. You won’t be able to avoid being both, though you don’t have to be both in equal measure. You aren’t defined by the gap-toothed oddball that you used to be, no more than the classmates who tattooed those words on your brain space are defined by the rude face they turned on you.

Forgive your bullies, and you forgive yourself, too.

---
Check out the full article here: http://www.washingtonpost.com/posteverything/wp/2015/01/27/as-a-kid-i-was-bullied-but-i-bullied-too-does-that-make-me-a-victim-or-an-aggressor/

5 Things Not to Say about Someone's Weight

CCA wants to make the world a kinder place.

One way we accomplish that mission is to prevent and end bullying, teasing, and hurtful remarks, in social spaces and online. Unfortunately, many of our CCA Alums & Adults are familiar with bullying tactics and have been targeted by classmates, peers, and even adults. To help fight back against bullying, CCA is running a series of personal posts about how our Alums & Adults have handled bullying and teasing situations. Plus, we'll be posting resources from experts about how to promote safe and supportive relationships. Stay tuned this week for informative, inspiring posts about changing the way we react to others' comments - bullying, teasing, and even "harmless" remarks.

Some folks just have to comment on your looks every time they see you.
Maybe it's your face. Or your outfit. Or your smile. Or even your shoes.
Regardless of what has piqued their interest, you know they are looking because they're commenting. And while it is nice to receive a compliment, sometimes even well-meaning remarks bring up anxiety to those of us who already feel like a person on display.

Blogger Meg has experienced her share of frustrating comments, too, specifically about her weight. It can be exhausting to constantly answer others' questions, so keep Meg's tips in mind next time you - or your grandma - want to make a comment about another person's appearance. Whether you're curvy or angular, chubby or skinny, dark or light, tall or short... we're all people inhabiting the body we were born with. And we all want to be accepted for who we are, not what we look like.

5 Things NOT to Say to Someone Who's Thin
by Meg Storie

1. "You probably can eat anything you want and not gain a pound!"

No, I can't actually! I have Gastro-Esophageal Reflux Disease (GERD). Any food high in fat or with milk upsets my stomach and sometimes triggers heartburn. I don't have fast food very often; it's a treat when I do. I love my frozen yogurt sometimes. And because of GERD, I must eat early, hours before bedtime.

2. "You look like you are ten!"

Let's be honest: I do not look like I'm ten. This statement is too quick of a reaction and you should have thought before you spoke. In my early twenties, this is the "compliment" I get mostly, but even though we universally accept that everyone wants to look younger, no one wants to be infantilized. I'm a woman, not a child.

3. "How much do you weigh? You must be only X pounds!"

This is not the Fair and I didn't just give you three chances to win a prize. You wouldn’t ask an overweight person how much they weigh, so you certainly don’t ask someone who’s underweight.

4. "Do you eat?

What a silly question! I wouldn't be here if I didn't! The truth is, I love to eat. I thoroughly enjoy discovering new recipes on apps, dark chocolate, and eating David's heart healthy dinners! Eating is something I enjoy, but I have to mind my restrictions for my health.

5. “You need to put some weight on you.”

This statement assumes so much about me that is really unfair. I have been small all my life, so barring any physical changes to my body's chemistry, I'll be staying this way. For many underweight people, it is just as hard to gain weight as it is for an overweight person to lose weight.

---
In the end, making the world a kinder place is about shifting our communication patterns from commenting on people's looks to connecting with their spirit. There are many ways to start a conversation or compliment someone.

If you're guilty of saying some of these things out of habit, why not brainstorm a list of creative things to say instead? We came up with 5 Alternatives to get you started...

1. Hi, Ginny! It is so great to see you! 
2. I have missed you, Maggie! Where should we get lunch?
3. Corbin, thanks for making it to the meeting! We're glad you're on our team.
4. You're such an inspiration, Jake! When did you starting running 5Ks?
5. Kelly, I have been eating way too much red meat lately. Do you know any good fish recipes you'd like to share?

Can you think of more? Share them in the comments!

Imagine a World Without Bullies!

Thank you Scott Clarke for writing this beautiful poem dedicated to CCA Kids!

http://www.ccakids.org/wonder.html

Friday Remix: Ask Amy

Amy Poehler does this great web series called "Ask Amy." We've ran one before on the blog and I thought this particular video was also full of great advice, too. Check it out!

Friday Remix: "The Girl in the Mirror..."

Today's post is a Remix from Vasavi Kumar, shared with me by Robin Williamson, devoted CCA member. (By the way, if you love CCA's amazing website, we have Robin to thank for the gorgeous work!) 

I've included only a small excerpt from the post, but you should absolutely read the full post here. 

From a young age I was made aware that I was different. That I didn't belong and didn't quite fit in.

My peers taught me so much:

I don’t matter.
I was socially “uncool” yet worthy of rejection and teasing.
I’m a loser, weak, and deserve to be alone because I look different.
The most I can expect in my relationships, is to be alone.
I am a fundamentally flawed human being.

And, I hated myself and who I was because of that. I’m also aware that these are the stories I created as a result of what happened. I attached meaning to everything so as to make sense out of why I was being treated this way.

The result: Extremely low self-esteem. And it looked something like this:

I would beat myself up for everything, even when everyone told me I did a good job. Because of course, I could always do better right?

I would say sorry when I wasn't actually sorry, or at the weirdest times, like if someone else would bump into me or I wanted to express a different point of view.

Oh and making mistakes? No matter how big or small, it was the sin of all sins. All my mistakes would be catastrophized and I would want nothing more than to hide under a rock from the guilt and shame I was experiencing for not having been perfect.

Saying no to others was torture, and all I ever wanted was to be alone because then at least I knew I would avoid feeling less than (guess again, because wherever you go there you are).

So is this blog post about white people?
No. Not in the way that you may think.

As my fierce and feminine friend Nisha Moodley says, "Treating racism with racism doesn't work." (click to tweet tweet)

You see, it’s easy to pass blame on “other people.” But this isn't about “us” versus “them,” whoever “them” may be for you or me.

This is about low self-esteem and self-rejection and what happens when you allow your distorted sense of Self to run your life. (thanks to my fabulous friends Jen Kem and Nisha Moodley for shedding major light on this for me.)

Honestly, it could have been anyone who taunted and teased me growing up, and the impact would have been the same.

A sense of Self rooted in rejection, unworthiness, and inferiority.

***

Self-rejection is poison, and I far too long have drank this poison.

This poison is so strong that I myself forget that I am a Divine Being and question my own feelings, wants, and desires.

I still need to remind myself every day. That I am not my past. I am not the words that have been spoken to me. I am not my distorted sense of Self created by me when I was a child.

That I simply…am.

And what I choose to insert after that is entirely up to me.

***

I’d absolutely love to hear your answer to this question down below in discussion section: What do you need to do to love and accept yourself?

Spend time with yourself. Become your best friend. Do whatever it takes to feel good about yourself. (click to tweet tweet)

Treat yourself with respect and kindness. Fight the urge to reject yourself.
---

This post was so good... remember, check it out the full version here. 

Douglas J Aveda Institute's "Glamour Day"

Today's post is a big THREE CHEERS FOR VOLUNTEERS!

The Craniofacial Anomalies Program at C.S. Mott Children's Hospital and the Douglas J Aveda Institute of Ann Arbor held a "Glamour Day" at the Douglas J Aveda Institute. Teenage girls with cleft lip and cleft palates had their hair styled, makeup done, and received manicure and pedicures.

Check out the full story and fun photo gallery at mLIVE, Michigan's online newspaper.

Photos: Courtney Sacco | The Ann Arbor News
Article: Kelly McLaughlin | The Ann Arbor News

Dating Advice: Stephen

An often requested topic for the blog is "Dating." In honor of Valentine's Day, this week we'll feature three posts about dating, relationships, and loving ourselves. 

source

Widen the Net
I recently asked a close friend of mine’s new wife what the secret was for him finding her after so many months of searching.  She said “Everything changed for him when he widened the net!”  Look at the big picture and broaden your horizons.   I have personally known people who found their Valentine 6000 miles away.  Now that is a wide Net!

What is Love?
The definition of Love that I aspire to is a quote from M. Scott Peck : “Love is any act that encourages the spiritual growth of another person.”  Before saying or doing something,  we can ask that question to determine if what do will make the other person better off than when we found them.

--Stephen

Media Monday: Lizzie Velasquez

Today's Media Monday post comes from Lizzie Velasquez, a motivational speaker and person with physical differences. I love Lizzie's story: She made her haters her motivators. Sure, anyone can say it but Lizzie lives it and proved it to be a successful philosophy.

I hope you'll watch her TEDx talk and feel inspired to take charge of your life. Her poise is truly skillful. I'm taking notes!



Lizzie also gave a talk aimed at children and teens.



Thank you Lizzie, for your commitment to positivity and progress. Kudos to you!

-Erica

Media Monday: Difference and Fashion

Pro Infirmis: Because who is perfect? Get closer.

It's no secret that I love fashion blogs, so when I came across this Pro Infirimis project, I couldn't get it off of my mind and I had to share it with you! I am thrilled at the prospect of seeing non-traditional models in fashion because as I've said elsewhere on the blog, "I like different." Different is beautiful and this project celebrates differences. Projects like this one remind me that we are changing the world and how the world sees disability and difference.

Check it out:


From the Huffington Post article:

Pro Infirmis, an organization for the disabled, created a series of mannequins based on real people with physical disabilities, working with individuals like Jasmine Rechsteiner, a Miss Handicap winner who has spine malformations, and Erwin Aljukić, an actor with brittle bone disease. The project's title? "Because Who Is Perfect? Get Closer."

The beautiful process was documented in a video (watch it above), capturing the joy of the models seeing their own unique figures recreated for the first time. But the best part of it all is that the mannequins were actually placed in store windows today, filling the shopfronts on Zurich's main downtown street, Bahnhofstrasse, in honor of International Day of Persons with Disabilities today.

"Seeing it there for real is quite a shock," said one of the video participants. And that's exactly the point. Raising awareness of those with disabilities, specifically in the realm of fashion, is a conversation that's already begun with groups such as Models of Diversity, which aims to bring models of all shapes, sizes and colors to the fashion runways and media.

Outspoken individuals like Kelly Knox, the winner of BBC's "Britain's Missing Top Model," and Angela Rockwood, who returned to her modeling career with a Nordstrom campaign after becoming a C4-5 quadriplegic, have also made their voices known.

Some stores have made concerted efforts to include body diversity, including those with disabilities, in their ads. Nordstrom has been doing so since 1991, while British department store Debenhams made headlines earlier this year with a Spring 2013 look book that featured a woman who was an amputee.

It's still an uphill battle to make the mannequins in our store windows reflect the shoppers passing by. But "Because Who Is Perfect? Get Closer" and the Swiss stores who participated prove that it can definitely be done.

---
--Erica

Media Monday: Sarah Atwell's Message

Gotta love her t-shirt: "Just Ask!"

Today's Media Monday post is a viral video that 17-year-old Sarah Atwell published online to share her story. Sarah has NF and reports being bullied since 5th grade. While her story is heart wrenching, it is also inspirational. Today, we celebrate Sarah's voice, her courage, and her strength.

A Discovery Fit & Health special will air about Sarah's journey on December 18, 2013 at 10pm (EST). As some CCA families have also experienced, agreeing to film a show doesn't mean you'll get to choose the title. Unfortunately for Sarah, "Girl with Half a Face," is not the title she would have chosen, but I think we can all agree that Sarah has a beautiful, full face! At CCA, we know there is no definition or standard of beauty. As for me, "I like different." I like different faces, I love furniture that others would discard as "scratch & dent" because it has richness and character, and confidence creates its own attraction. I think many of us in the cranio world agree, facial differences are beautiful, intriguing, and inviting. As we form a critical mass of folks who like different, we are the change in the world we wish to see.

For more info on Sarah's story, check out this link: The Chronicle Herald

--Erica

Showcase: Jaci Samhammer

Jaci wearing bright green with Jill, Char, and Annie - our CCA Staff!

My Name is Jaclynn Samhammer.

I Have Apert Syndrome and I am 27 years old. I love to dance and hang out with friends. I am one busy girl!

I work, I go dancing, and I am involved with the American Legion and The Elks Club. 

Yes, I had a lot of struggles in my life: going through 30 operations, dealing with teasing being accepted in life, but when I started going dancing at the Legion and the Elks, I felt happy and safe there. Everyone is really nice and they accept me for who I am -- the way it should be! I love how my life is right now, but I do wish I could earn enough money to live on my own. Other than that life is good -- so just keep smiling  and live life to the fullest!

-- Jaci

Thoughtful Thursday: My Mantras

“Meditation is the ultimate mobile device; you can use it anywhere, anytime, unobtrusively.” 
-Sharon Salzberg

I am guilty of a bad habit: a lot of negative self-talking. My younger self tried diligently to manage every possible outcome of a situation before it happened. I was constantly afraid that my friends would be embarrassed by me, my coworkers/boss would be disappointed with me, or I would just look stupid when I attempted ... anything really, from taking a turn bowling to asking a cute guy to share his class notes.  

To get over these anxieties and negative thought patterns, I've read a lot about meditation and “Being present in the moment.” Being present helps me perform better in meetings and interviews, it allows me to stick to my principles in difficult situations, and it calms my mind when life gets overwhelming.

However, meditation is definitely something one must learn and practice. I’m still a novice, but I have claimed a few mantras that help me return to the present when I find myself languishing in the past or nail-biting the future.

Erica’s Top Four Mantras

1. Time Will Pass. I have several iterations of this mantra, but I have found this phrase to be comforting whenever I'm "stuck" in a situation. I particularly like to use this mantra when I'm feeling regretful or embarrassed. I get in plank position (also great for core strength!) and repeat "time will pass." Taking even 3 minutes to slow down and focus reminds me that every situation is temporary and meditating prevents me from putting a negative thought reel on replay.
2. Feelings are just feelings. I had a great counselor once share this with me: she said, “So what if you feel crappy? It’s just a feeling. Feel it, acknowledge it, but realize this feeling is an emotion, made up of chemical responses and thought patterns.” What you decide to do in a situation should not be based on a feeling, because feelings come and go. When I have a feeling that is overwhelming and halting my progress, I sit in dignity* and repeat “Feelings are just feelings.” Pretty soon, I don’t feel the same – I feel calmer, slightly more in control, and even a little hopeful. (Remember I said this took a year to practice? Just trust the process and keep trying.)
3. Abide with me. This mantra is actually a hymn my Mom used to sing to me when I had to wear a dental device that required nightly tightening. It hurt quite badly and I would be very upset when it was time for the crank. My mom would have me lay on my bed and close my eyes. She would softly sing the song and rub my hand. I still remember the peace that came over me in those moments. Now, when I am in intense pain that can't be avoided, I lay out flat or in child’s pose, and I repeat the mantra in my head. I love the word abide when dealing with pain. With pain, you can't just will it away; you are forced to abide in it. This song reminds me of the people who are with me in spirit: from my family all the way to my ancestors who never had the luxury of medication, climate-controlled bedrooms, and a post-surgery Coca-Cola.
4. Show Up, Be Tough. I feel a twinge of guilt admitting this, knowing what my CCA little brothers and sisters go through on a daily basis, yet it's true: I freak out a little when I have to get an IV. Once the blasted needle is in and taped up, I'm fine, but right before or during the sticking part I sometimes usually faint. Oy. Last week I had to have an IV, so I decided to try my meditation skills to prevent myself from fainting. I chose "Show up, be tough," because showing up means being in the moment. I didn't want to let my brain check out and faint as a defense mechanism -- I wanted to be in my body and acknowledge the care being given. Be tough means just that and I channeled my younger CCA sibs and their natural-born toughness to get through it. I also played a couple of calming songs on my iPhone and my nurse shared that she does this too during dental procedures. Full disclosure, when she flushed the IV, I did almost faint (ick, that taste and smell) but through meditation I stayed present and avoided passing out. I consider this a huge success and you are free to chuckle at my wimpiness. :) 

So, those are a few mantras that work for me. Think about ones that may work in your life and here's another blog post about mantras with even more suggestions. I encourage you to begin incorporating meditation into your wellness care. I can honestly say I knew about the benefits of meditation before I started practicing, but after just a year of practice I have found that meditation is a wonderful tool for medical patients.

Namaste, y’all. 

--Erica

*Sitting in dignity is a pose where you sit in a chair with your feet flat on the floor, back straight with shoulders relaxed, with your hands flat on your lap. Your eyes should be closed, but you should look straight ahead. Try to feel your muscles relaxing all the way from your head to your feet, as you breathe in compassion and breathe out fear, anxiety, and negativity. 

Media Monday: HuffPo

Good Monday Morning, CCA family!
You know that CAM's goal of spreading acceptance is working when cranio topics make appearances on big name websites like The Huffington Post!

Last week, HuffPo ran a blog by Natalie Merlo, an 18-year-old with Crouzon Syndrome. I've reposted it here for you to enjoy. Like what you see? Email [email protected] to tell them you want more stories about acceptance and cranio issues!

(As always, don't forget to send in your media mentions to [email protected].)

***

Original content posted on The Huffington Post on September 17, 2013.

It's OK to Be Different
Natalie Merlo

Growing up looking different from my friends and family is all I have ever known. Fourteen years ago, at age 4, I was diagnosed with Crouzon Syndrome and have been treated by the Craniofacial Center team at Seattle Children's Hospital. When I was younger, my brother would tease me about my big green eyes, which are so different from the simple blue color of the rest of my family. The color, in combination with their massive size that steamed from my midface not being fully developed, meant I stuck out. It was the same among my friends; I was the only one smiling with my lower jaw jutting forward in a crooked smile.

Natalie at age 9.

Natalie at age 16.

These differences were things other people glazed over, and didn't really notice at first glance. But to me, they were so unfortunately obvious. I wish I could say that I didn't let these things phase me, but that was far from the truth. As I am now getting pictures together to hang on my dorm room wall in college, I am finding there are maybe 10 pictures of me from senior year. I had really intense orthodontics starting the end of junior year in preparation for the surgery I got at the beginning of the summer at Seattle Children's Hospital, in which I had a halo device attached to my skull to move my bones forward. This only made me look even more different from my friends. Because of this, I avoided cameras like the plague, always volunteering to take the picture, or leaning out of frame when I saw I was in one. Now when I look through the photos of my senior year, it's like I wasn't even there. I've taken more pictures this summer than I did the entire school year. And I've spent the summer with a giant titanium device attached to my face.

Natalie at age 18 with her halo device.

I think this discrepancy is a big take away in what I have learned this summer. I always thought I stood out, and that people were looking at me like I was different. But after having this halo device on, I know what getting stared at based on appearance looks like. And now I realize it never happened to me, I just expected it and saw what I wanted to see. I've gained so much confidence this summer -- something going into this experience I never thought would have been the outcome. At first I felt every stare. It was overwhelming when I thought about how many people had seen me out with my family or friends and were talking about me. But that got so tiring to worry about, it made me unable to enjoy what should have been fun times in my final months at home. So one day, I just let it go. I realized people were more uncomfortable with themselves for staring then with me, so I just stared right back, and they quickly shifted their eyes in embarrassment. If people we really curious, they would ask and I would explain the situation to them. If they didn't ask, it didn't matter, they were strangers, and I wouldn't see them again anyway.

Just recently, at the One Direction concert I had been looking forward to for ages, I had my new confidence tested on a massive scale. But focusing on my friends and my excitement, I found myself thinking only about the concert, not all the people around me. At one point, I stopped at the merch booth to get a T-shirt to wear for the show. When I tried to put it on, I realized the head hole a little bit too small to accommodate my new hardware. Instead of blushing with embarrassment, I allowed my friend to carefully stretch it over my screws and laughed along with her as I thought about how ridiculous I looked.

Natalie at the One Direction concert.

In these final weeks of having the halo on, I've learned how to find confidence in myself and not dwell on the opinions of others. It's a lesson I guess I needed to learn the hard way, and one that will only continue to help me after this ordeal is over.