Living with Disfigurement: The Disease of Fibrous Dysplasia

All my life I’ve had disfigurement in my face. People have responded to it different ways. But then again, so have I. What I have is fibrous dysplasia. It is an extremely rare bone disease with no known cure. Other school kids noticed it when I was 5. One boy used to say every day “didn’t your father teach you not to play with a hammer?”

First Discovery
My dentists in the Philippines noticed it when I was 8. They had examined my mouth for a routine cleaning and saw that one side of my jaw was clearly larger than the other. The dentists recommended an exploratory surgery. Since I was a military dependent, this wouldn’t cost anything but time and recovery. It cost a lot more than that. Every bone doctor, dentist, ENT doctor, and pediatric specialist came in to see me, to ask the same questions. “Does it hurt?” No. “Do you mind if I feel your face?” Sure. Always the “hmm. Interesting. I’ve always read about this, but never saw it” to follow.

The exploratory surgery took place and the diagnosis was made: Fibrous dysplasia. One side of the bone grows faster than the other. The doctors didn’t know what they were cutting into, so they only took a small piece and sent it to the lab and I needed what seemed to be 1,000 more CT scans.

From what they could see, the “extra” bone on top of bone started from the base of my brain on the left side, on the cheekbone, and down the jaw line. I wasn’t feeling any pain, but they didn’t know how much faster the bone was going to grow or if it would start to cause me pain later. Remember, this was the early 80’s, so information on something so rare wouldn’t be easy to find. Until more was known, I had to live with it.

And my family taught me right. They told me “you look different on the outside, but you are the same as everyone else on the inside.” They told me I was special for other reasons. My parents were real good about not letting me feel outcast at home or be surrounded with people to talk to me as if I should be felt sorry for. I was punished the same, I played the same; I got the same treatment as my brother. I even played little league football with no worries about breaking that special bone.

Guinea Pig
When I was 10, I had to visit a very large hospital in San Antonio, Texas for possibly more surgery. I took another 1,000 CT scans. I was basically felt up by another team of specialists with the same questions and statements as the other doctors in the Philippines. My disfigurement was making me feel like an unwanted celebrity in the medical field. They took pictures. More X-rays. Three days later, it was decided that I shouldn’t get another surgery until they were more comfortable with understanding fibrous dysplasia. So we flew back to the Philippines. The total trip wasn’t all bad, though. I got to see E.T. and Star Trek Three long before my friends in the Philippines could because movies were six months behind over there.
When I was 12 we moved to Southern California. Puberty was starting. I needed another examination. My father drove me to Northern California for more examinations. More doctors, more specialists, more of the same for three days. It was decided to wait until after puberty before another surgery should be considered. By this time the extra bone should stop growing and technology will catch up for better diagnoses and treatments for fibrous dysplasia.

Friends and Girls and Nerd Heaven
So for awhile, the medical issues concerning this disfigurement stopped. The social issues were just beginning. Yes, my parents explained to me how normal I was on the inside. Did they explain that to every kid on the playground? Children can be cruel, you know. They are honest when they are young, but around the age of six they can become cruel. Relentless. Heartless. Bullies. Savior.

Fortunately for me, I grew up in military-centered schools where you had to make friends fast because every two or four years you had to find more. My friends were smart. They were also nerds, like me. I gravitated towards them because in their own ways, they were-and felt-like outcasts. Apparently the extra bone pushed on my brain and made me a little smarter as a child because I was in the “Talented and Gifted” classes with a lot of other people who really didn’t care what you looked like, as long as you knew what an Atari was and that computers were really cool!
But when I turned 13 and started noticing girls, it changed. We moved once again, this time to North Carolina. This time I went to school off base with people who have known each other since birth. This time my dad didn’t plan on moving anywhere else and was going to retire. This time I had to fit in somehow, but somehow I had to do it on so many levels. I was a military brat. I was black and Filipino, not just black or white.

And I liked girls now. But I didn’t think any would pay attention to me because of all those things. Yes, I’m no different on the inside, but on the outside I did feel like a freak. No one had to say it, or ever said it to me, I just knew it. So all I did was school and draw.

But school was putting me yet again in slightly familiar surroundings. I was showing those smart genes again, and was put with the advanced kids in the 7th grade. But these kids were extra special because they were smart AND popular. I had no idea what to do because I was just half of that!

The southern way of life, though, is to be kind to others no matter who they are. I made friends with metal heads. My teacher was the coolest lady ever because she read us these books by some guy who talked about Hobbits, Elves, Dwarves, Orcs, and all kinds of weird creatures. But the main point of the story was how friendship and devotion can conquer the largest of evils. We always thought “man, those are gonna make some cool movies one day!” And we were allowed to be smart. We were allowed to be different. It was ok. And she treated me as everyone else did: special, just like them. My parents also kept me involved in a Filipino-American club for the next ten years. The club involved a lot of socializing, dancing, and learning to embrace yet another difference I had.

Defining Moments
Fibrous dysplasia quickly began to take a back seat to my personality. I was no longer worried with thoughts like “but what if they notice?” because my pretty nerd buddies had my back. I got teased by bullies, but so did everyone else. I was shunned by the stuck up crowd, but so was everyone else. In the 9th grade, I remember this guy at school just walked up to me and laughed. He kept laughing, saying, “Man, you look like E.T.! What happened?” I just ignored it. In the past, I would say something smart back, but then cry when I got home. I just ignored it this time.

A had a bevy of cute female friends. One in particular that I flirted with was named Liz Dematta. My “flirt” personality was clearly a fake one. I flirted to be funny, and Liz got that. She was an extraordinary girl because she was so beautiful but so down-to-earth and had a goofy sense of humor. We would pass by each other in the hallways and crack jokes almost daily. Of course, I never had the courage to ask her out because that little disease was still in the back of my head, and I was generally a shy boy at heart. It was as if my fake playa attitude meant I never had to commit my heart to anything except friendship so I was never heartbroken.

One day the laughing boy saw me with her hanging out, talking silly stuff. Liz hugged me goodbye and went to class. “Yo, man,” he says. “Yo, can you get me her digits? That girl is fine!”

“I could,” I told him. “But I’m from outer space. I look like E.T.” And I walked away. It was one of those Dr. Phil defining moments. I felt like I had honestly gotten over myself and decided that as long as I didn’t give a crap about how I looked, no one else who mattered would, and those who didn’t matter would fall by the wayside and not occupy my mind.

I actually fell for a girl when at the end of the 9th grade. We hung out from time to time, but then she moved away. And it hurt. I never took that extra step. I always thought in my mind “damn, you should have asked her out.” I started writing poems and other things. The poetry was dark. Not kill-myself dark, but definitely contrary to the class clown smart guy flirt I was on the outside. By the 10th grade I became a little more serious, but I still wasn’t afraid to be outgoing. I even joined the speech and debate team. We competed in tournaments interpreting drama and comedy in hopes to win trophies. These tournaments took place over the weekend and in other cities. We were teenagers staying in hotels overnight. We competed with and against well-dressed members of the opposite sex that were nerds in their schools, but idols in competition. It was the right setting for someone like me who wanted to feel free inside.

Second Surgery
As I was getting older, my bones were growing. But my face was starting to hurt when I slept. Not real bad at first, but just enough to suck. Eventually the pain became an issue. I had to talk to my dad about having some surgery done.
I went under the knife in 1991. I thought it would be a cut-by-Friday, school-by-Tuesday type of thing. But this time the doctors had deeper plans. They wanted to cut out as much bone as they could without harming the structure of my face. They were going to use micro-saws, 3D CT scans, all kinds of equipment and technology. They were even going to use Mayo Clinic doctors because the military doctors were fighting some war in the desert at that time. Of course this meant more specialists, more X-rays, more feeling around the face by men in coats. And donating blood to myself, “just in case something goes wrong and you lose a lot of blood, son.”

In my mind, I thought finally, the roadblocks will be removed and I can be someone for real! They’ll cut away all this bone and I’ll just look like everyone else. If people thought I was outgoing and flirtatious now, they wouldn’t be able to stop me in a month!

The surgery was a success, but not to my imaginations. They were able to remove a lot of the bone, but they couldn’t straighten out my nose or my eyes. I had swelling in my face for 5 months. It took 8 weeks to get feeling in my nose back from the nerves. To this day I still can’t feel my upper lip’s left corner. Once all the swelling bruising went away, I looked like a different person, but not dramatically different. It was still clear that I had fibrous dysplasia, and it was still clear that I was disfigured.

Once I got myself back together, I went on to be this outgoing butterfly who was determined to flood people with so much personality that my looks wouldn’t matter to anyone anymore. I had a long-term relationship with a girl from the end of high school through my freshman year in college. A lot of friends I made in high school went to the same college as me later on. I worked summer camps every year, dancing and singing and playing with kids who really didn’t care what I looked like, either. Of course they asked a million questions, but nothing was ever asked afterwards. One of my kids even said “hey may look different, but we don’t care. Mr. Paul is our counselor!” It was enough to make me cry.

By my 3rd year in college, I was a legend in my own mind. I started hosting open mics. I was involved with drama and plays. I was in jazz choir. I hosted sleepovers in my room. I played nerdy fantasy games. I went to college parties and dances. I drove to other schools to play more nerdy games and drink and meet more girls. I’m surprised I graduated!

Military Standards
After graduation I decided to join the military because I wanted to pay for grad school. My degree was in Psychology. At the time I wanted to be an Officer, but the Air Force wasn’t making it easy for non-pilot or aviation people to come in as one. I didn’t care; I just wanted grad school money and to see the world. All I needed to do was pass the physical and I should be good to go.

I didn’t pass the physical. I passed all the easy stuff, but the doctor at the processing station told me that I would need copies of my records from my surgery. Those were lost in the big parental divorce. I couldn’t get in until I had records that proved the surgery wouldn’t affect any military stuff later on.

I eventually got a job, raised some money and made some appointments to pay for new X-rays. Eventually I processed again and I was a member of the U.S. Air Force�but for how long?

Basic training was fun for awhile. I saw that hospital in San Antonio for in processing. It was called Wilford Hall, and the staff there was very interested in letting me have some elective surgery. “You know, this could help the Air Force. What we learn from you can train our surgeons. I thought about it. Then I thought about all the prodding, the poking, and the recovery from the first two surgeries. “No thanks” I told them.

Two weeks later, I get a notice to show up to the hospital again. The nurse’s aid tells me that I will no longer be in the Air Force and that they are kicking me out because the doctors do not feel sure that I will pass a gas mask test. They said I had to meet with a Colonel later that afternoon. I was hurt and devastated. Fibrous dysplasia kicked my butt yet again.
I went back to my dorm and cried a lot. I was a 23 year-old man crying. When my training instructor asked why I was so sad and I told him the story, I was expecting some kind of “suck it up, Airman!” speech. Instead, they returned the looks I had. “I feel bad, man. Best of luck to you.”

I saw the Colonel that afternoon. He told me that whoever said I was kicked out was lying and that only he could make that determination. He said it all depended on a gas mask test. If I passed, it was no longer an issue.

And yes, I passed. I was the happiest person ever to march a mile across the base from the testing center to my dorm. One instructor had gone on leave thinking I was kicked out and returned to see me back in formation. He tried his best to hold back a smile, but instead halfway covered it with “Bright! I thought they got rid of you!”
“No, sir” I said back. “I wouldn’t let them.”

Then and Now
Since then I’ve been in for nine years. I’ve had a few more exams and offers for surgery by several military doctors. I haven’t had the urge to yet. Although lately I’ve experienced a little more pain than normal, nothing has reached the point where I feel the need to go under the knife. I’ve gotten married to a beautiful woman and had two gorgeous children who have no signs of disfigurement or fibrous dysplasia. And they aren’t ashamed of the way I look; they are ashamed of how I dance in public and treat them like babies from time to time. I still get questions. I still get looks from people. I still see people unconsciously twist and contort their faces to match mine as they listen to me speak. There have been difficult times growing up disfigured, but none so difficult that I let it become my life and dictate how people treat me. I never wanted anyone to feel sorry for me, so I refuse to do it to myself. I realized that I am NOT the same as others. I am stronger than most because I was raised to be by my parents. I am more confident than most because I had friends who kept me confident. I am more humble than most because I have experienced enough humility to be so. And I am loved most by my family because I refuse to let disfigurement disfigure them.

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