LACK OF UNDERSTANDING VERY SAD

[Brian]

Hey-greetings from another creature hit by the 700 hundred to one shot! I'm 39 and have a bilateral cleft lip and palate. Over the past couple of weeks I have been carefully studying what people talk about on these cleft lip and palate boards. I'm am astonished by the lack of understanding of facial diformity. The comments tend to fall into just a few catories 1; parents worried about the technicalities of operations, 2; parents worried that about how people will react to their kids deformity 3; older people with clefts stating they were made fun of growing up and that it sucked. Some claim that being self confident overcomes the physical appearance (my guess is that only a some small portion can be overcome).
I'm amazed at how little older people with cleft's talk about the huge problems they face as adults. The other thing that is rarely mentioned is that people with clefts have small nasal passages making it impossilbe to do things like running. Can this be corrected with modern medicine?
People with facial deformities are rejected their entire lives. This is not a minor but a huge, typically insurmountable problem. When I grew up kids always made fun of me. I had some good friends but I noticed that I always had to put "the energy into maintaining" the relationships. I've always had to make the phone calls to maintain all relationships with friends or relatives. From what I can figure out this is true of most people with cleft lip and palates. As adults people with clefts often notice how rare that other family members visit or call them.
My advice to parents with children with cleft lip and palate is to pretend they are a "NY Jew". You've got to be outspoken and figure out how to get things done. Don't just sit there any say that if God did this it must be for the best. I've noticed that it is very helpful to be upfront and honest with people about having a facial deformity. Try talking to your kid's friend's parents about it. Tell them that it is very hard for kids with cleft lip and palates as they go through school. Tell them to make sure that your kid always get invited everywhere. Explain to them that it is hard for kids with clefts to have lots of friends and you need theri help to make sure your kid doesn't get rejected. I never talked to a single girl in high school. I grew up being told to "stick my chest out" and that I could overcome by physical differences. This didn't help. You need to be very perceptive of your kids problems. For example, if your kid doesn't get invited to any parties you can't expect your kid to be all that socially mature. You also need to help out and provide opportunities where you can. I was amazed at how all my relatives have stood by and done nothing my whole life when they could have been extremely helpful at times. Over the past 10 years I had to call a few people from high school. I was amazed at how many didn't return my call.
I went to the best schools in the country and never received a single job offer. I was forced work in basement boiler rooms (owned by organized crime types) trying to sell strangers worthless penny stocks. My schoolmates got to work in prestigous companies and some of them now run some of the biggest companies in America. After selling penny stocks for a few years I opened a franchise for a brokerage firm. They were also very dishonest but this was a lot better than selling penny stocks. I developed my entire business cold calling strangers. I noticed that even family and friends would never trust me because of my physical difference. Actually, for years this made me feel terrible because I thought they were reacting to me personally. Now, I'm quite sure that they were reacting to my cleft. I've asked some other people in my business with clefts and they get virtually the same reation. I've tried to avoid meeting the people who run my firm because I figured from past experience that this would be disadvantagous. How right I was. I'll mention one example here. Several years ago the head trader (a crook) visited me in my office. Several days later when I noticed they had cheated me on a trade she said "if you didn't work here you wouldn't beable to get a job anywhere else." Very hurtful but brutally honest. Luckily I've made enough money so I don't have to work anymore but I know that if I had any real type of opportunity I would have made many times more.
The guy I work with has the right looks but is not very smart. He gets 100% of his business from friends and relatives. He has lost money for every one of them before working with me and they still give him a lot of business. He comes to work when the market opens and leaves at the close. I'm there for many more hours slaving away talking to abusive strangers. Now his friends and relatives buy my ideas and make money. My friends and relatives are much wealthier but ignore me because of my cleft lip.
Dealing with having a cleft lip and palate requires a tremendous amount of clarity. In other words make sure that you never smoke, drink or do drugs. These will distort your ability tremendously to deal with this type of problem. My guess is that a much higher than normal percentage of people with cleft lip and palate fall victim to these vices.
I will never walk into a casino. I have been tring to figure out how people react to having a cleft lip and palate. My guess is that all people with this problem have very similar reations from the world around them. The imediate family upbringing probably also has a differential effect. It is probably extremely important to have a lot of support from the parent of the oposite sex. Unfortunately my mother has never said much to me my entire life. Having a cleft lip and palate is like being in a social casino. When the good looking people do something wrong their mistakes are overlooked and they are given more chances (the Clinton effect). With a cleft it is rare that you are given any chances at all. You will be watched like a hawk and totally shut out at the slightest mistake.
Recently I've tried to spend a lot more time on a level playing field. The internet is a huge boon for people with facial diformities.
I realize that some people who read this are going to claim that I'm too negative. They'll say that they are great interviewers or that they are happily married, etc. Unfortunately, people with clefts are constantly being told that they should just ignore it and that the problem is in their head. It is not! You need to figure out how it effects you and work around it.
Another thing I've noticed about people with facial deformities is that they are always hoping for some big event to happen. I've always thought that I'd be involved in some amazing business deal that never happens.
These message boards could be a tremendous help to people with cleft lip and palates. Keep reading and adding your insights. Maybe someone will put this together and come out with a best selling book so that nobody will bother us anymore and maybe we'll get to go to a couple of parties. Rock On!!!

[an upset reader]

I think your letter was extremely negative and a horrible thing to put into the mind of parents who have just had or are having cleft lip babies. Yes, cleft lip people do get stared at and made fun of but it doesn't have to become a life focus. The operations they do today are wonderful and only seem to be getting better. I'm sorry you had such a rough time of it but I think that maybe you need to look at how you are dealing with the cleft. YOu seem to be looking for a reason of why people won't speak to you or hire you. Maybe it's you and not the cleft. Positivity will get you everywhere in life!!!

[ENJOY LIFE!]

I think you are being too negative. We all live in a world where in one way or another people are made fun of. It maybe because they are to fat, to skinny, ugly, the color of their skin, a part of the country - city or town that they live in. A large number of reasons. I just believe that your parents just fell to raise you properly. They fell their job as being parents. As far as, family goes and you being contacted. I was not been born with a cleft and all my family members does not come knotting at my door either and yes, I usually have to make the first phone call. But life is what I make it out to be. If you want to live as a victim all your life than by all means go ahead and be one.


A cleft has never stopped Rev. Jesse Jackson and by our nation standards he has 2 strikes against him, his race and a cleft. Get off the pity parade and get a life. As a father of a handsome young man born with a cleft, I will continue to build my son self-esteem up. And yes, the doctors can do encredible things today. I suggest you go seek professional help. I know of alot of successful professional people with clefts. I just believe you need to seek professional help. Do something today, SMILE! RELAX! AND ENJOY LIFE!

[Anonymous]

Brian, thank you for sharing your life with us. I know it was so much more difficult to be born with a cleft back then. These days they have so much more that they can do for cleft kids and other kids with Craniofacial anomalies. My daughter came home to us from Korea 11 years ago. She has a unilateral cleft lip an wide palate, both repaired. She is doing great! We are looking at another surgery this summer. She has an underbite and her speech is a problem. She is not hypernasal, she just doesn't have enough room in her mouth to get all the sounds right. They will be doing a maxillary osteodistraction on her. I will put the site that explains this at the end of this post. My daughter has never been teased about her cleft or her speech. She also has a spinal problem and was in a body cast for quite a while. No teasing on this either. She is just little Miss Personality an a social butterfly. If asked about her cleft She just explains it as best she can and the kids are fine with it. It seems to me that you are not happy with yourself. Have you thought about seeing a plastic surgeon to see what could be done at this point. YOu will be amazed at the things they can do now. It wouldn't hurt to check into this. Good luck in the future.
Carol
www.klsmartin.com/red.dir/red.html

[Jenny, Ryan's Mom]

Wow - I don't know if you were trying to get a reaction from people - but it worked!! I can't quite understand where you are coming from. Just like any life situation - we all deal with it differently. I am a new mother to a son with a cleft and have a 20 year old brother with a cleft. I talk to him all the time - he is very successful, well liked (without much effort), and confident. He is also well-adjusted when it comes to his cleft. Does it ever bother him? - I'm sure it does, just like someone with big ears, or a crooked nose, or big thighs - we all have things that bother us that we don't have a whole lot of control over. We take what life gives us and DEAl with it - it dosen't help anyone to play the victim - noone will come and save you - you have to figure that out yourself. I was abused as a young child and believe me, although not a physical deformity, a very DEEP emotional one - I dealt with it. I got help, moved on, forgave and have become a very self-confident, successful person ready to raise a son to do the same!! I look forward to his future - you comments would only want me to dread it - I won't let that happen to my family!!


Sorry to vent - but you struck a chord!!

[jacksmom]

How sad - your entire life was destroyed because of a cleft lip? Has it occured to you that perhaps people feed off of your negativity and self-pity and choose not to be with you for those reasons? I think your perception of how other people see you is clouded - most of my friends tell me they forget about my cleft once they get to know me. If you are confident and happy with yourself, people will forget about your cleft too. People respond to what you project. My friends and family have always stayed in touch with me - because they love me; they don't reject me because I have a scar under my nose and I can't say "basketball". Relationships are not based on looks (stop watching so much tv!) you have to be loveable to be loved. You have a serious chip on your shoulder and I think maybe you need to talk to someone professionally. I have certainly had to deal with teasing, and yes some people are put off by how I look and how I talk - but you have to seek out the people who are willing to accept you for what you are. As far as having to put in extra effort with girlfriends, they were attracted to you when they first met you - so obviously it wasn't the cleft that drove them away (I'm sorry if that sounded mean - but I think you are putting too much blame on something very superficial)... I hope you get some help and realize that it's your personality and outlook that are most important in this life!

[angel]

Brian,
I am sorry that you feel the way you do and I have to agree with the upset reader that responded to your message, it is extremely negative!! I think your anger and negative attitude is a result of something other than your deformity. My husband is 25yrs old. He was born with cleft lip and palate. He is a wonderful person has a great job at NASA and has a plenty of friends! Most of them childhood friends that have known him over 20yrs and never stop calling. He is a lot more outgoing than I am and I was not born with any birth defects. He dated a lot in highschool (a lot more than me and I was a child model!). His defect has never put any barriers in his life. We never get any stares from people when we go out. And as far as your comment about people with cleft not being able to run, my husband is a bodybuilder and runs 3 miles everyday. I hope my son (who was also born with cleft grows up to be just like him). Maybe if you stop fixating your birth defect you will find there is actually a great person underneath

[sfk26@yahoo.com]

I am not going to start this out with that was really negative since that is exactly how almost all the other replies started out. You know what I think of the nonsense that you typed it was an extreme waste of effort on your part to live such a waste of a life I was born with a cleft lip and palate in 1978 so you I am a 20 something dating in a world full of beautiful people and I am one of them, for the reason that I consider it a blessing to be born this way. I have had people say to me you know why you are beautiful because you never stop smiling. It is sort of an elvis smile. At first I hated that and now I know that I am wonderful and the only prblem with you is that you need reason to feel bad it it your fault you let those people hurt you it is all up to you. I was diagnosed with bi polatr depression and I said no I will not let this happen it is not a chemical imbalance it is this dumb cleft that makes me sad. I took up running began smiling and decided I could do anything. Well I will graduate from College, met a beautiful man. Who said to me on the second date I noticed this little notch in your lip I said oh a cleft no big deal and he said (imagine this) oh no big deal to me just thought I would ask. (we will be getting married soon) Okay I will get off my soap box!!!!!!!!!!!! Wipe the negative out of your life and enjoy it, you only get one. You have been siting on the pitty pot all your life from what you wrote and it smells like well, I wont say that because there are kids reading this. Let's be a postitive role model to those around us, and the ones that can learn the most. have a great day and smile it adds face vaule. sk you need all you can get.

[Buddy Nelson ten831]

Man, you need to get a life. I'm 54 and had my bilateral cleft lip and palete corrected when country wasn't cool. Everyone has their warts some you can see some you can't. You need to go live in the forest and eat worms. Life is what you make it, if you want to be a criple that fine. You need to see a shrink.

[Anonymous]

I just read your Lack of understanding very sad, and I have to say my heart goes out to you, and I don't really understand, but, it affected me. I think you are a bit negative, and maybe even paranoid. Be yourself, real friends will like you for who you are, not what you look like. If the internet makes you feel more confident, I say go for it! Rock on! I came upon your site researching cholesteotomas. Hope you won't be so sad now.

[Nichole]

I recently found this site and was very excited to finally find people who could relate to me and/or my situations. I had never met another cleft before. But I'll be honest with you, Brian: although I think it is sad that you feel the way that you do, I am VERY glad I didn't meet you while I was growing up. Your perspective would have been enough to make me throw myself off of a building! I certainly have not come to terms with my deformity and suffer from the emotional scars that came from the treatment I received constantly as a child and periodically as an adult. For the record, I not only have the small nasal cavity but, during a reconstructive surgery, one of my nostrils was partially sealed. I really only breathe through the one side of my nose. And Brian...I run - EVERY DAY. Do I have problems breathing? No more than my perfectly normal running partner. I was told that I wouldn't be able to do a lot of things. I was told that I was mentally retarded. But you know what? I tried anyway, smiled through my tears, and I DID EVERYTHING I wanted to, including graduating 4th in my class. Not bad for someone who is mentally retarded because of a cleft. Any person reading this who either has a cleft or has a child with one, please understand that every case is different and I for one firmly believe that it's all about one's perspective. It isn't easy and it is mentally crippling at times because of society's cruelty but neither you nor your children have to end up as cynical as Brian did. Good luck to all of you out there. And Brian, I hope you find some inner peace.

[judy]

You hit a raw nerve. Call me at 30l-972-4535 and let's talk.

[Jim]

With encouraging words like that Buddy, I believe its you who needs a shrink.


Some people simply are not given the environment with which to make of life as they want. How other people act and behave is out of your hands. Maybe a little thought and less bitterness on your behalf would help some people who arent as lucky as you do a bit better.

[Jim]

I had to repspond to much of what people have wrote in reply to the start of these messages.


I fall somewhere in between on what people are saying and what the first guy said. I have just recently found the people who are willing to accept me for who I am. I was born in North East England, and was surrounded with possibly the most evil people anyone is likely to meet. I have had a very hard time with my cleft lip and palate, and cant stop thinking about what could have been for me at school and with certain other people. If you are in a bad environment with something like a cleft, then things are going to be VERY difficult. I have tried projecting a good positive attitude to everyone Ive met. Some people have responded with the kindness and understanding expected of good people.....others have been downright evil and prejudice. This can have a bad effect on a person, especially with the type of place I live, where the slightest difference in appearences is excuse for anyone to be attacked.
However, I am now graduating from University with a degree in engineering. I am about to move to the US to be with a fantastic girl who I love, and hopefully to start a new life. What I am saying is that everyones circumstances are unique. There ARE situations that can cause people to despair about this sort of thing. Not everyone can deal with things as easily as other people. Its HARD having a cleft. I have been there and I am still learning. But, I feel I am a better person, more open and understanding to other peoples worries and feelings. I am starting to enjoy life, and I am overcomming my problems. There ARE evil people in the world, and I am unlucky to have run into lots of them. But, I dont believe many of the kids i went to school with in my little home town have degrees, american girlfriends or are preparing for the biggest adventure they could have hoped for. Moving to a new country!


Clefts cause problems. Problems are there to be overcome. When you do....your a better person. But, some people need more help than others. Sometimes, its not their fault, and the effects can be bad. We cant control our environment totally through positive intentions or force of will alone.


Please, be supportive...show people you ARE a better person for having a cleft. Thats the positive attitude that makes a difference. The one which benefits other people, not just yourself.

[Jim]

I had to repspond to much of what people have wrote in reply to the start of these messages.


I fall somewhere in between on what people are saying and what the first guy said. I have just recently found the people who are willing to accept me for who I am. I was born in North East England, and was surrounded with possibly the most evil people anyone is likely to meet. I have had a very hard time with my cleft lip and palate, and cant stop thinking about what could have been for me at school and with certain other people. If you are in a bad environment with something like a cleft, then things are going to be VERY difficult. I have tried projecting a good positive attitude to everyone Ive met. Some people have responded with the kindness and understanding expected of good people.....others have been downright evil and prejudice. This can have a bad effect on a person, especially with the type of place I live, where the slightest difference in appearences is excuse for anyone to be attacked.
However, I am now graduating from University with a degree in engineering. I am about to move to the US to be with a fantastic girl who I love, and hopefully to start a new life. What I am saying is that everyones circumstances are unique. There ARE situations that can cause people to despair about this sort of thing. Not everyone can deal with things as easily as other people. Its HARD having a cleft. I have been there and I am still learning. But, I feel I am a better person, more open and understanding to other peoples worries and feelings. I am starting to enjoy life, and I am overcomming my problems. There ARE evil people in the world, and I am unlucky to have run into lots of them. But, I dont believe many of the kids i went to school with in my little home town have degrees, american girlfriends or are preparing for the biggest adventure they could have hoped for. Moving to a new country!


Clefts cause problems. Problems are there to be overcome. When you do....your a better person. But, some people need more help than others. Sometimes, its not their fault, and the effects can be bad. We cant control our environment totally through positive intentions or force of will alone.


Please, be supportive...show people you ARE a better person for having a cleft. Thats the positive attitude that makes a difference. The one which benefits other people, not just yourself.