Living with a Facial Anomaly

1998

Thurs., June 25, 1998

I have done a little research on arhinia in the past year. There's not much information out there on arhinia because it is rare. One of the things that shocked me was the mortality rate in the article I read on arhinia. The authors had taken twelve cases of arhinia from the medical literature. Four of the people with arhinia had died.

I feel blessed to have been born with arhinia for the following reasons:

I have a wonderful, caring, and supportive family.

I have friends who see me for who I am, not what I am.

I see the world from a unique perspective.

I feel good about myself most of the time. I have my good days and bad days like everyone else. I try to maintain a positive attitude. Sometimes that can be real hard at times, especially when I am going thru a rough period. I prefer to be around people with positive attitudes so I can maintain my own positive attitude.

At times, I find that some people are intimidated by my appearance. I find that most people are accepting. Those who reject me just don't become a part of my life and do not to get to know me as a person.

I've always felt a part of the world. I've accomplished many things in my lifetime. I went to public school. I had good grades in school. I've had a paying job. Right now I am not working but that will change in the next several months. The only things I haven't accomplished yet is finding Mr. Right and having children. My feelings on having a relationship and children: If they happen, they happen. If they don't, they don't.

I don't have any bitterness or anger about being born with arhinia. To me, having been born without a nose and all the other anomalies has been no big deal. They are just one small part of me. I can think of things that are much worse. I could be dead is the worst thing.

When I was twenty-three (23) years old, someone asked me how I used to my disabilities. My answer: I know that they are there. As I think back on it now, my answer should have been: My craniofacial anomalies and disabilities are just a small part of me. I know how to deal and compensate for them.

It's amazing that some people think that they are experts about my condition just because they have met people with arhinia. And they are people who don't live with arhinia. I do. With the research I've done on arhinia, I am more knowledgeable about arhinia than I've ever been.

Sun., July 19, 1998

I've decided to expand my homepage to include other craniofacial anomailies because I want to educate others.

I look at life like this: Things could be worse. People don't like it when I say that. I am not one to dwell on my own problems all the time. Things could have been a whole lot worse for me: I could be dead. I could have had mental retardation. I learned this from all the research I have done on arhinia. I've also seen things over the years that have made me feel lucky. Many of the things I saw and heard while I was in the hospital. Some of the things I witnessed as a volunteer. Some of the things I saw when I was working. Some I've just seen in life.

Thurs., Sept. 17, 1998

Dumb Things People Have Said to Me

You would be amazed at all the dumb things that have ever been said to me. It is just because of people's ignorance about arhinia.

1. I have actually had people come up and ask me if my nose was real.

2. I have actually had people think that my nose was non-functioning. (These people claimed to know soo much about arhinia. - NOT.)

Sun., Oct. 25, 1998

The Internet is great because one can connect with others who are going thru something similar. It's because of the Internet that I have been able to link up with people who have or know someone with arhinia.

1999

Fri., July 16, 1999

Some days I just want to gag with the crap I read online. Gesh I think how vain many people are about their appearance. I look at myself anf think "I got a major craniofacial anomaly and I am not worried about my looks!!" I guess I deal with my anomaly better than most. Maybe it is because of what I've learned that people look at what is on the inside.

It really irks me when people blame their problems on their craniofacial anomaly. I want to scream, "IT IS YOU BECAUSE YOU CAN'T DEAL WITH YOUR ANOMALY!!!" I really believe that people can pick up on others' attitudes.

Sun., Aug. 29, 1999

I can't believe some of the junk people on the message boards post about craniofacial anomalies. I read posts about how parents worry about their kids get teased and the kid is not even school age. Simple solution: Take the time to EDUCATE OTHERS. The simple fact is: ALL KIDS GET TEASED!!

I can't stand when people with less amount of surgeries than me say how traumatic their surgeries are/were. This pisses me off more than anything. It also makes me laugh because some people say the trauma from their surgeries causes PTSS. I have to laugh and cringe every time I see that. And I think too many parents believe what they read online.

I don't consider myself a survivor.. I still deal with a craniofacial anomaly every day.

I don't consider having a craniofacial anomaly a tragedy or being something special. I have always wanted to be treated like everyone else.

Fri., Nov. 26, 1999

Ignorance is still alive and well here in late 1999.

I actually had someone email me and ask me what my nose was made out.. The answer for anyone who wants to know: Skin, cartilage, and bone from my own body and wire that holds the bone in place. I do not have a prosthetic nose.

I had another email asking me why my website includes other craniofacial anomalies. Now that is truly ignorant.

2000

Sat., April 15, 2000

I have made some changes in my life. I don't participate any craniofacial anomalies support groups anymore. I was finding that the sites were making me angry. And that was not good. I really felt that the groups were holding me back. Plus I was tired of being bashed for having a positive attitude. I think that a lot of groups like to focus on the negative side. I am soo glad that I have a family that has focused on the positive side of things, even though it has not always been easy.

I really understand what it means to have support. The only people who are really there for me are my family and friends (who don't have craniofacial anomalies).

2001

Sun., Oct. 21, 2001

I still stay away from craniofacial anomalies support groups for the most part. There's one that I post from time to time in.. just because the people there irritate me with their whining. I like to show people that there is more to life than someone whining about something that happened to them years and years ago. Isn't it time to move on, folks?? I look at myself and think, "If I can do it, so can you." No one ever said that life was going to be easy.

I think of my own facial anomaly as a non-issue in my life..

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