My Story

Meet my friend, Ariel...

     One kind of incredible thing about starting this blog is that I have connected with people whom I may have never met in person. One of the first blogs I started following was a blog called A Dreamer's Daze. It is written by a college student named Ariel. She is originally from California but goes to school in Vermont.  I really like her blog because she is honest, passionate and she sees beauty in everyday life that others might just dismiss. She is also an incredible writer and I feel blessed to have come across her blog. Well, Ariel has Crouzon Syndrome, which I had never heard of before. It has been interesting, disappointing (re: people being ignorant), heart-wrenching and still inspiring to me. Crouzon Syndrome is a disease that both Ariel and her twin sister have.
     Ariel shared her story on her blog today and I have asked if it would be okay to share it on mine. As a teacher I often meet people with disabilities, diseases, challenges, etc.. but I had never even heard of Crouzon's.  I think many people have trouble reacting to people who are "different" than they are and sometimes what they might think of as a "double take" or "curious question" has much more of an affect than you know.  As Benjamin Franklin once said "Remember not only to say the right thing in the right place, but far more difficult still, to leave unsaid the wrong thing at the tempting moment."  Getting to know Ariel through her blog reaffirms how important it is not to define someone by their looks or disabilities.
     Please take a few minutes to read Ariel's story:

My Story

I've tried to write my story so many times. I've tried to put events and emotions into words again and again, but somehow the words never seem quite right. I never seem to be able to capture the people, the places, and the memories the way I want to. But I'm going to try again... To just get it all out. Because healing only comes in opening ourselves up and embracing the past by making it a wonderful part of us. And whatever you may think of it, this is my story...

My twin sister (she goes by Zan) and I were born on January 22, 1991. The youngest of 5 kids, we were born into a family of dreamers that emphasized the importance of hard work, while teaching lessons of strength and compassion. 

My mom knew something was different about Zan and I from the beginning. Call it a gut feeling. Call it mother's intuition. She just knew there was something... off.  We were born in the early afternoon. According to my mother, we arrived just in time for lunch. We were small babies, but as twins, that wasn't uncommon. Just four days after going home from the hospital as a newborn, I began having seizures. Mom says she was driving, that Zan and I were in the back in our car seats. She was with a friend of hers. At the light, she turned around to check on us. My face was purple and I wasn't breathing. They drove straight to the hospital, where I was put right back into the NICU. They eventually got me breathing again and sent us home.

My mother continued to feel as though something further was wrong. I continued having seizures periodically. She took us to doctor after doctor, specialist after specialist, and we were tested for a handful of illnesses- none of which we had. People kept assuring her that we were okay- that she was simply dealing with post-partum depression. As months passed, and we got older, though, our faces began to grow in a way that further convinced her we needed immediate help. Our eyes began to get bigger and our heads began to take a different shape. A large bump formed on our heads. My mother tells the story of how when we were learning body parts, the bump was so apparent that we referred to it as just another body part. eyes. nose. bump.

My parents continued taking us to doctor after doctor, trying to find some answers. When we were eight months old, they took us to Children's Hospital Oakland, and within minutes, we were diagnosed. 

Crouzon Syndrome.

My parents were relieved to finally have an answer, but I don't think they were quite prepared for the future. The story goes, my dad laughed and said "Alright, give us some medicine and we'll be on our way." Typical. But, unfortunately, not that simple. 

Crouzon Syndrome is a disease where the bones in the head are fused prematurely. Our skulls were essentially unable to grow as we grew. So, as our bodies grew and changed, our head and face couldn't. We were at risk for brain damage or death. Within days, we had our first major surgery.

Skull expansion part 1. Doctors had to expand the skull to make room for our brain.

At the time, the cause of Crouzons was thought to be genetic. Neither of my parents had the disease and nobody in the entire extended family had it. And still, somehow, we got lucky. 

Our case was tricky. There was so much that wasn't known about the disease. We were blessed with some of the most amazing doctors, who invented new techniques with the hopes of improving our condition. We were blessed to be in the care of surgeons that worked around the clock to develop new ideas and options to save us. We had doctors that invented hardware in their garage to advance the bones in our head and face. It was later used in an experimental surgery that ultimately saved our lives. Doctors performed surgery to break apart the bones in our head and face, pull them apart, and insert plates and screws to hold everything. For days after surgery, we had metal screws that stuck out of our cheeks, and during surgery recovery, would be turned to shift the hardware to the proper location.

The first forehead and mid-face advancement made a huge difference for us, health wise, but it didn't do quite enough. There were still frequent seizures. We couldn't breathe easily. We were in the hospital, more often than we were out. We slowly had surgery on every part of our face- moving and reconstructing it. Because of the disease, our airways were abnormally small. (Even now, my airway is the size of an infant's.) We weren't getting enough oxygen and it was too dangerous for us to continue breathing on our own. We were scheduled to get a tracheotomy. We went in for the surgery and were in the operating room, when my mom made them stop the surgery. They hadn't started the actual procedure yet, and she couldn't give up hope that there was another way. She begged the doctors to let us try something else... Anything else. My parents were always adamant about us having a life as normal as possible, given our situation, and a tracheotomy would have limited us. After many discussions, one of the doctors went against orders and gave us a bi-pap machine to try. It wasn't approved for children, but it was the last option. My mom agreed that if it didn't work, she would allow us to get the surgery. My family had overnight nurses that would sit with my mom and hold the masks to our faces as we slept. We slept with a pulse oximeter attached to our fingers and the bi-pap strapped to our faces. We had oxygen tanks throughout the house for during the day. We were sick, but my parents believed in our strength and perseverance, and when we went in for the follow up appointment short months later, the tests showed us no longer needing a tracheotomy. It was a sort of miracle.

Part 2

Zan's and my medical situation was a stressful one for my family. My siblings were scared. My parents were scared. But they tried to maintain as much of a happy family, as possible. When I was three years old, our house burned down. Nobody was home and nobody was hurt. My family was spending the night celebrating my older sister's 13th birthday. My mom made dinner and everyone went out for a night of miniature golfing. Everyone returned home that night, only to find that we no longer had a home. The house didn't burn completely to the ground, but, because Zan and I weren't in good health, we couldn't be around any smoke or fire damage. They had to completely rebuild. We spent the next three years living in a hotel. 

We had numerous surgeries over the next few years (eyes, ears, nose, mouth, jaw), but it wasn't until right before we entered kindergarten, that we had another mid- face and forehead advancement. Doctors, again, used screws and plates to expand the skull, middle of the face, and lower jaw. They also expanded the back of our head. Bone was taken from my hips to create cheekbone. It was a total facial reconstruction. We looked like different kids after the surgeries.

Recovery was challenging after these surgeries. There was the obvious physical recovery. Our eyes would stay swollen shut for weeks after operations. We weren't be able to talk, walk, see, or move much at all. Some surgeries had better recovery times than others- it all depended on how our body reacted, but it was generally months before we were back to "normal". This was the first time we experienced our face changed so drastically. After the operations, we wouldn't look in mirrors or at each other. We would cry and beg for our "old face" back. Because, while, the surgery made huge improvements for our health and appearance, it wasn't what we were used to. Our hair had been shaved off, and we simply didn't feel like the same people. Every time we looked in a mirror or at each other, it was as if we were seeing a new person. It was an adjustment for our entire family, really. My parents didn't recognize us. Our siblings didn't recognize us. We didn't recognize each other. And we didn't recognize ourselves. 

While our surgeries were frequent, my parents worked to try and maintain a sense of normalcy. My father, who owns his own construction company, began demolishing and re-building our home. Both of my parents had to work full time and care for 5 kids. All while getting my sister and I through each surgery and appointment. It wasn't easy, and, in all honesty, I have no idea how they did it.

As we spent the next few months healing, we prepared to enter school. The surgeries we had had, up until that point, had made us look more like other kids, but still, it was clear that we were different. But we didn't act different. So, when it came to school, we were fortunate to have always had many friends. Adjusting from surgery to school was easier than expected, but was still a struggle. We weren't like other kids. We had different experiences... experiences most of them... most children wouldn't understand. We made friends easily, because we never discussed our disease or our surgeries. Most kids knew that we were different, and that we needed surgery, but that was as far as the discussion ever got. We didn't want to talk about it and we didn't know how to talk about it, so we focused on being kids.

I wish I could say that growing up with Crouzons didn't effect our every day life, but it did. Everywhere we went, we were always stared at. Usually by other kids that didn't know us. Even adults. There were comments and whispers. Many people would even assume we were mentally retarded.  We weren't able to go to the grocery store or shopping with my parents or out with friends without look at her eyes and what's wrong with her face?  The questions didn't bother me, because even as a kid, I could have answered a direct question. I could have told them what was wrong with me- what the disease was. But people didn't want to know. They wanted to be mean with their ignorance. We were constantly being judged, but never defended. 

Their mentality forced me to grow up with strength and a sense of humor, though. Kids would make comments, and I’d play along, because I was taught to accept the fact that I was different. Most kids got “I like your dress.” I got, “your eyes are weird.”

“I know, right?” I would joke. Or “Oh, well. Less traffic tickets in the future- Great peripheral vision.”

And people would laugh uncomfortably. Confused as to why the diseased girl wasn’t angry. But, in all reality, I was. I was angry with everyone. I was angry with no one. 

Our disease got us a fair amount of publicity. Sixty surgeries in, we were the only set of twins known to both have and both survive the disease. In third grade, we were interviewed by the French edition of Marie Claire. They came to our house, took pictures, and asked us questions about our life. For weeks, kids at school fawned over us. We were famous.

A few years and a couple of French classes later, I went back and read the article. Amidst the explanation of how the bones in our heads fused prematurely and the description of the medical devices the doctors invented for our surgeries, the author gave a run down of our medical history. Stretched across the page, in big bold letters, I saw it. “Their faces resembled work of Picasso.” The letters stamped the page right below a picture of my sister and I sitting at our kitchen table, laughing like “normal” children.

I was embarrassed and ashamed. Like the whole world was laughing at a joke I wasn’t in on. I slammed the magazine to the floor and spent the rest of the night in my room.

“Picasso was an artist. You are God’s artwork,” my mother would tell me.

“God should take up a new occupation,” I would say back.

I shredded the magazine that night.

Zan and I never complained about the medical aspect of our disease, because the truth is, it was hard on everyone. The physical pain was bearable, but the emotional aspect of the disease was more difficult. We grew up believing everything about us was wrong. We would go to appointment after appointment where doctors and nurses would point out every flaw wanting to "fix" us- to make us look more normal. We knew we weren't the kids that parents hope for, and it broke our hearts to understand that. 

The more we adjusted to our new faces, the easier it got, though. We further adopted the attitude that we were just like the other kids, with the exception that we spent more time in the hospital. We played on sports teams- softball and soccer. We went to basketball camps and dance lessons. A lot of it was forcing ourselves to have a normal life. Doctors told my parents from the very beginning that if they treated us like we were sick, we would act sick. So they did their best to give us a normal life. 

It was a challenge, though- A juggling act. We continued to have surgeries on our ears, our eyes, and the general positioning of our faces. We would have multiple surgeries throughout the year. Sometimes we'd only find out the day before an operation. We'd be out of school for a few weeks here and there, then return as if nothing had happened. That's not to say the surgeries didn't benefit us and allow us to lead a healthier life. We ultimately stopped having to use the bi-pap machine and the oxygen. We stopped needing home care nurses. Aside from the surgeries every few months and frequent doctor appointments, we became as close to normal as any other child.

PART 3

Middle school were three of the most difficult years. My face began to change, again. My eyes became more noticeably different. And still, I tried to remind myself that the other kids weren't better than me and that I wasn't better than them. We were simply different. I got caught up in the hype of attending a new school and meeting new people, and found myself hurt when someone didn't accept me or disliked me simply because of the way I was born. I made every effort to prove to everyone that I was the same and that I was equal. 

I joined a community cheerleading squad with a couple of friends at the beginning of middle school. I tried my very hardest to eliminate all differences between me and the other girls. Some people were supportive- saw nothing strange in the fact that I wanted to try cheering. Others were vicious. But, still, I pretended to not even notice.

The summer after sixth grade, Zan and I had surgery to, once again, expand our skull and mid-face. The entire summer was spent in the hospital or recovering. The recovery was painful and complicated, and to this day, is still something I try not to even think about.

I was still in the hospital at the start of seventh grade. I was forced to go back to school as soon as I was well enough. It was about a month into school, before I began attending class. Doctors shaved off sections of my hair for the operation and my face was still swollen. The scars were still fresh. I was ugly and I was angry.

Rumors swirled surrounding our return to school. Some said we had been in a car accident. Others said we had cancer. Many thought we were recovering from eating disorders. (Zan had lost a lot of weight after surgery.) I would spend my days at school hardly able to keep my eyes open, and with the humiliation of walking through the halls, I wanted to close my eyes and keep them shut forever.

I wish I could say that the disease brought out the best in me. That I was always thankful for life and for the love and support of my family. If I'm telling the complete story, I must admit that I wasn't a very nice kid. I was scared and sad and alone. 

As I got older, I found that many people wanted the attention and the sympathy of being associated with me, once things were getting back to normal. But few people were there during the months of hospital stays or home recovery. There were never any phone calls, cards, or visits. There were only friends when things were easy. It was Zan and I- just the two of us against the world.

I wish I could say I was grateful to have someone to go through it all with. I wish I could say it made it easier, to have someone know what it was like- someone to relate to. But it didn’t. They say when you become a parent, having a child is like having a part of you live outside yourself. Being a twin is a similar feeling. It’s this other part of you that you wouldn’t even want to exist without. My twin sister felt like half of me, and the only thing worse than having the disease, was watching her have to go through it, too.

PART 4

High school had an interesting start. I had tried out for the freshman cheer squad at the end of eighth grade, and ended up making the squad and captain. I spent the summer getting to know the girls on my squad. I went into high school with a fresh mindset. I put everything from middle school behind me and focused on making the best of the situation. Cheerleading didn't end up being a good fit for me. I had done it for years before that, but I realized I was only doing it to prove a point. And get real. Me? In a skirt kicking my legs in the air? But, still, it was nice to be a part of something.

It was a challenge being at a school with so many people, when so few knew the back story. Not that they necessarily wanted to know, and that I necessarily wanted to tell them, but something about people just finally knowing and understanding sounded appealing to me. Many students, again, assumed I was mentally retarded. It was either that, or I was a genius. The assumptions and the stereotypes were frustrating. I kept a few good friends close and focused on getting through high school.

In early November of freshman year, I had my first surgery during high school. With complications, I ended up being out of school until the second semester in mid-January. When I got back to school, I wasn't the same. I was tired of being angry and frustrated and alone. People would ask questions about where I had been, but I didn't know how to explain it to them, so I wouldn't. I didn't handle the transition back the way I should have, but I simply didn't know how. I wanted people to know, but I didn't want to tell them.

I found myself skipping school frequently. I would get dropped off at school, then take the bus or walk the few miles back home. Some days I would simply sit in the Starbucks across the street and read a book. I just couldn't be there. I didn't know how to be there physically, when mentally I just wasn't. 

Some teachers were supportive. Most, however, were not. And I can't blame them, really. It was an inconvenience. My being out of school caused more work and more effort for them. So, I began going to an independent study school part- time. I took classes at my own pace. I still went to the local high school for four hours each day, but divided my time between the schools. I ended up graduating at the beginning of senior year. Going to an independent study school allowed me time to focus on other interests. My teacher at the school was the most encouraging and inspiring man, and really motivated me to not get mad, but to get moving- toward my future. He encouraged me to work toward my goals. And for the first time, I had someone outside of my family that really believed in me. I spent the rest of high school listening to his advice and working to get involved. I began working as an ESL tutor, started a mentoring program at the local middle school, and had the opportunity to work with numerous non- profit organizations. I also organized numerous events and fund-raisers for issues I cared about. Volunteer work became my passion. 

PART 5

When it came time to apply for colleges at the beginning of senior year, my counselor at the local high school encouraged me to not apply to many (if any) schools- that I wouldn't get in. I was devastated. Mom said she wasn't giving me the advice she had given to me out of meanness, and even though she was wrong, she wanted me to be realistic. I appreciated my family's support, but I was frustrated. I had always done well in school, but still... nobody believed I could succeed. As I began developing volunteer programs and working with different organizations, though, I became motivated and excited about life and about my future. I was heart broken at the thought that colleges wouldn't accept me, and that people thought I had no chance at success, but with the encouragement and support of my family and independent study teacher, I began applying to schools. I didn't limit myself by rank or location. I applied everywhere I wanted to go. I crossed my fingers that I could prove people wrong- that I could get accepted and make a better life for myself. That I could finally be seen as more than my disease. More than a simple facial deformity.

Senior year brought extreme financial struggles for my family. With the job market in California being as bad as it was/ is, I wasn't sure that even if I did get accepted to college, I would be able to afford to go. My mom was laid off and my dad's construction company was struggling. I began filling out applications for scholarships left and right. I called the school every day checking for new scholarships and job postings- anything to make my dream a reality.

The year continued on- working and volunteering, and I began to really focus on getting myself ready for my life after high school. We met with doctors to see what else could be done to improve our condition. The surgery that could finally fix my eyes completely- that could finally make me look normal- was only done by a handful of doctors. In February 2009, my sister, mom, and I flew to Paris to meet with surgeons. We were scheduled to have surgery in Paris just a few days later. As we met with the surgeon, though, we discussed the risk factors. blindness. brain damage. death. The chance that we would come out of the surgery unharmed was unlikely. And, though, a small part of me considered going through with it, we ultimately decided against the surgery. I was ready to look normal- to be a normal 18 year old with normal problems, but I couldn't go through with it, and in returning home, I felt empowered. I felt silly for willing to risk my life to make me "prettier". I began to fully recognize how much more important it was to focus on things to better the world and to better myself, as a person. I realized that the only way happiness would ever come, was if my worries about my appearance came secondary.

After the trip to Paris, things just sort of fell into place. Life just sort of fell into place. I returned home to a stack of college admission decision letters. I didn't even get my luggage in the house before rushing upstairs to open the letters in my room. One after the other, I opened and read each decision. I had been accepted to every school I applied for... all 12 of them. I sat on the floor in my room crying. I held the acceptance letters in front of me, then just held them to my chest feeling so unbelievably grateful. My life and the plans I didn't even know were forming, slowly started coming together. 

Though, I had technically been done with high school for months before the official graduation, my mother wanted me to walk in the ceremony. I went to the senior events and participated in the final memories of high school. At the final senior night, where students and families gather for awards and memories, my entire family gathered. I had been invited to receive an award for my volunteer efforts, and it was nice to have the people that always supported me there to see it. There were speeches and many students celebrated for their academic accomplishments. My award was called, and I walked up to the front of the room to receive it. It was a wonderful rush and I felt so unbelievably honored and humbled. More awards were distributed and more speeches were given. At the end of the ceremony, my high school guidance counselor walked up to the podium. She began a speech on perseverance and on beating the odds. I wasn't a huge fan of the woman, given her complete and utter lack of faith in me, but I found myself inspired by her words. That's when I heard my name. The room got quiet and I made my way toward the front. She put her hand on my shoulder and pulled out a stack of envelopes from a shelf in the podium. She began reading off the names of every scholarships I had applied for. I was shocked. I ended up being awarded 15 scholarships and awards. I was sure my jaw or my body was going to hit the floor. I couldn't wrap my mind around what was happening as she read the name of each award. One after the other. I stood there in complete shock and appreciation. The awards covered enough for me to make college feasible and for me to prove the teachers who said I couldn't do it, wrong. And for the first time, I felt as though I was living in a dream. I felt as though I was good enough. And in August, 2009, I found myself moving to Burlington, Vermont, to attend the University of Vermont. 

Since moving to Vermont, I’ve been happier than I could have ever even imagined. Life didn’t magically transform over night, but I’ve learned to focus on the positive. After I left, my family's home in California- the one I grew up in, the one my dad built- burned down for the second time. And there’s not a day that I don’t struggle with my appearance and what people think of me and the memories of surgeries and procedures, but I've learned to focus on the beauty in life. I live in a beautiful town with amazing friends and get to learn from brilliant professors who encourage me to share my story. I've stayed away from discussing Crouzon Syndrome in detail on my little blog, because it all just felt too personal- too close.  Because the minute I tell people about my disease, I become the disease, and I resent that. As I get older, though, I feel documenting my journey is something I have to do. Partly, because I want people to know about the disease- to understand it. The other part of me, though, wants to tell my story for me- to write it all down... to just get it all out. And I guess, in a way, I've realized that it's a bit selfish for me to keep my story to myself. I've learned so much. About life... about people…about myself. And I'm bursting at the seems with passion and love for life, because I've learned just how short life really is. And Through the pain, there’s something healing about surgery. There’s something emotionally powerful in stretching your body and your mind to its limit, and slowly regaining strength. There’s something therapeutic in taking yourself apart and slowly piecing yourself back together, admiring the cracks and holes for what they are- stories. And in these stories, there’s something dark, yet thrilling, about cheating death; about how beautiful the world looks, once you’ve stared death in the face, and lived to put the pieces back together- to tell the story. And sixty- something procedures later, I've come to realize that it has made one hell of a story.

At the end of the day, I have my family and I have my friends and there hasn’t been a single problem life has thrown at us, that we haven’t figured out how to handle. I owe everything in my life to my disease. The stories I’m so quick to run from are the same ones that saved me. They shaped me. They gave me a bond with my sister and with my family that goes beyond life, and beyond death. And in the end, it’s these experiences that have provided me with the will and drive to do whatever is required to succeed. It’s experiences like these that make me kiss the ground and thank the sun. And though some days I feel more dead than alive, I look at the scars and think about how far I've come, and it becomes so much clearer- human compassion and love will always outshine the pain. And that makes it all worth it.


Thank you for reading.


xoxo
Ariel