Growing up with the mental trama of a cleft palate

[bill_61@hotmail.com]

Hi may name is Bill i am a 23 year old male and i was born with a bilaterial cleft palate, and all my life i have had to live with the taunting of other people and it turned me into a person who holds in all of his feelings, a person who essientially has very low if any self essteem. Has anyone been through the same?

[Edie]

No I can't say I have been through this, but as you know already, NO ONE is PERFECT. My son has a cleft lip/palate and hope with everything in me that he make the most of all the good he has in his life. Not only me and my husband but my in-laws as well. I don't know you obviously but it does make me sad to hear that you feel this although I know to some extent this is normal but doesn't have to be. I never had what you have but I was teased a lot in school. Glad that's over with. I am now surrounded with mature people who don't act so stupid as the kids in school did.


I must say I am very lucky to have been the chosen one to have a child with this because it has opened my eyes and now when I see kids with this or anything else, it doesn't look weird or yucky, it look to some point normal to me and I except it. I don't satre and talk I know that theirs is something I can see and I have my wrongs that people can't see. We are all equal in general and most importantly in God's eyes.


You are a very special person even to those you don't know . Good luck.

[Jeff Alterman]

I too had to grow up with the mental trauma of having a cleft palate although in my case it was merely a submucous cleft hard palate. However my speech was affected by it enough where some people thought that I was retarded. To add insult to injury I also have Asperger's Syndrome which is a developmental disorder which still causes problems for me even though I'm an adult. I've managed to overcome both of these challenges somewhat, but it still isn't easy for me. Fortunately it isn't so bad where I let it get in the way of leading a somewhat normal life in spite of it all. Even though my speech is better than it was when I was young there are still issue related to my submucous cleft hard palate. I also have a tiny harelip which only appears as a slight kink in the red area of my upper lip beneath my right nostril. At least my harelip is small enough so that it isn't easily seen and I can also hide it quite easily by changing the position of my upper lip. Thankfully surgery was never required in my case due to the minor nature of my cleft. The worst thing about my cleft it is that it hurts me sometimes. Fortunately I have that under control too. Jeff Alterman at alterman@bestweb.net

[Pat in Houston]

Bill:
Yes, I have experienced the same kind of feelings that you describe. I think it goes with the territory. I was born in the 1950's with a cleft palate and lip. Back then, cosmetic surgeries were postponed till you were fully grown. Also, people did not discuss their feelings. There was a real denial about this. Also, we were made to feel guilty if we brought up the subject. Because this was such a painful thing for my parents to deal with, we never discussed it at all. No one prepared me for my surgeries and to this day, I'm not exactly sure what was done. I can tell you from my own experience that I have finally dealt with my feelings of my past and now I have a real peace about it all. Actually, the best part of me is the pain that I experienced as a child. It has made me into the person that I am today. It was a gift in disguise, but one that I certainly paid dearly for. I have no prejudice because I know what it feels like to be "less than" instead of "equal to". I treat each person that I meet as though they were someone special. I treat the janitor at our building where I work the same as I treat the CFO - with respect and reverence. Now, when I encounter mean, spiteful people(I work with one) I am able to look at her and see a very unhappy person. I feel sorry for her because she is diminished in my eyes. She will not receive my kindness and loving spirit.


Bill, I can tell you this, don't be hard on yourself. What we went through as children (and maybe are still going through) was tough. We did not possess the coping skills to deal with so much negative coming at us as children. (What adult does?) We were just learning who we were and what we were about. It broke our hearts and still does when other children/adults laughed at us. We are survivors because we persevered and kept going. Go after your education because no one can ever take that away from you. When you talk to yourself, build yourself up even if you don't believe it at the time. We have to do that especially, because we get torn down so much. Look upon any scars you might have as your "Badge of Courage". If you are able and it is important to you, look into additional surgeries. Make your goal to love yourself. Remember that these things take time. You weren't torn down overnight and it will take a while to build your self worth back up. I hope this has helped even just a little bit. Thank heavens for web sites like this. God bless.
Pat

[Calvero]

I'm 29 and was born with both a unilateral cleft lip and bilateral cleft palate. I also have a hard time with working on my self esteem due to all the teasing I had when I was in junior high and high school. I am gradually improving, but it takes work and some faith that there are people out there who won't get sidetracked by my looks (there really are some honestly nice people out there... not all are jerks )


One of the things I did to deal with my low self confidence was got involved with people who shared the same hobbies as me. For me, that is classic comedy so I joined a couple local fan clubs. This was before the internet boom so everything was face to face. Whenever anyone had a question about something, they were ususally refered to me because I knew the answer (most of the time, LOL). It's a great way to have fun, socialize, and get honest respect for yourself from your peers. Now with the internet it's easier to find others and talk with them first before meeting in person.


I admit it's scary and agonizing in the beginning when you first go out to meet others, but with some perseverance, and maybe some support from family and friends, it gets easier


Kim,
The Cleft Club
<a href="http://cleftclub.2ya.com">http://cleftclub.2ya.com</a>

[Jeff Alterman]

I'll be 39 in March and I'm fortunate that I'm reasonably well accepted by many people where I live despite the fact that my speech is a little nasal due to the fact that I have a submucous cleft hard palate myself. Part of this is due to the fact that many people who know me are aware of a classmate of mine in high school who was born with a severe cleft palate and has other problems besides. I'll admit that I feel somewhat funny about having a cleft palate myself, but since it is rather minor in nature it isn't so bad and it hasn't stopped me from doing things that any other normal person can do. Sure it was a little difficult for me when I realized that I had a submucous cleft hard palate, but I've realized that it could have been worse so I consider myself fortunate that it isn't so bad having been born with a minor cleft. Jeff Alterman at alterman@bestweb.net

[jupitor]

Well, don't feel alone. I'm 38 and still struggle at times. To make you feel better ... I was born with a cleft and all my life i've been dealing with this. 10 years ago i lost an eye due to an injury. Now i have two things that i have to deal with. My eye doesn't look symetrical either. I struggle with this daily. But enough about the negatives ... now about the positives ... #1 because of the way i was borned, i've developed a really good sense of intuition. I assume that most people who are born with a defect have this. that's my opinion. for the longest time, i've tried my hardest to figure out the thoughts of people and why they act the way they do. i probably did this because i wanted to figure out ways on how to make people accept me. What i'm trying to say is that i've used my ability to my advantage. Today, i'm very confident in my ability to treat people dearly. Of course, they are some who may underestimate me at first but because of this confidence, i can walk away saying ... "you may underestimate me at first but i'll guarantee in the long run, you'll see that i know alot of people who love and respect me". As you can see, i'm kinda cocky. haha, but it's only my self-talk that is cocky. We need to have positive self-talks even though sometimes it's not totally true. We have to be clever. And another thing? You got to stand up for yourself. You have too. I'm not saying to hit anyone who say's something about you, i am saying that you need to find this inner confidence. Go the the gym and work out, take karate lessons, learn how to defend yourself. Build your self up so you don't have to fight and also, can walk away from any set backs saying ... "yeah yeah yeah, you think what you like but deep inside i know if i wanted to, i would kick your butt!" haha, also, FIND SOMETHING YOUR GOOD IN AND EXCEL!


good luck to all
Jupitor

[Chad]

I liked Jupiter's advice and I can definitely relate to that. Find something that you can excel in, or what I did was work on things I can control. Being born with a bilateral cleft lip and palate was out of my control. Most people with cleft experienced a very difficult and frustrating childhood. I hated going to school, the mall or out in public for fear of being stared at. I felt like a freak show. It hurt. As I got older though, I found things I could control: sports, weight lifting, friendships, writing, education, etc. I wanted people to notice me for something other than my birth defect. Partly because I was bored, and partly due to me wanting to build my self-confidence--I began to concentrate on weight training. It served as a very theraputic tool and was something that I could control. I'm very proud of my appearance now, which is something I never could have said as a child.


My attitude has changed from wishing people wouldn't stare at me. Now I have built up my self-esteem and self-love to the point where I want people to take notice of who I am, what I look like, and the other good qualities I possess because I am proud of who I have become. And no one can ever take that from me.


My advice to you is to find that inner-love and embrace it. Although it's not as easy as it sounds, you need to ignore ignorant people's teasing and judgements. As long as you respect and love who you are--on the inside--that is all that matters. Chad, chad.gookin@uni.edu

[Lisa (darwin_logic@hotmai]

Bill, Bill, Bill....where have you been all my life???


Just kiddin'. I can SO relate to your feelings. I was born with a bilateral cleft lip and palate. My first operation was done by a hack. I keloid heal. I had twenty three operations. I was teased RELENTLESSLY by my peers until I was sixteen. I had no real friends until I was around that age. My mother would cry every time I talked about my pain and it made me feel like the defect was MY FAULT. My parents had other issues, like alcoholism and depression, which didn't help things much. I was called names and all of my boundaries were violated. I had no choices, I remember being held down while fighting so they could either sedate me or get me into various restrictive appendages. I have many problems in my life now. The operations may be over, but my insidious view of myself never goes away. I look in the mirror in total disgust. I developed anorexia and bulimia, drug and alcohol problems, married an abusive guy when I was 18 because I didn't think anyone else would love me. I figured if anything I could control my weight. I struggle with this every day. I am so full of anger and rage it's scary. So yeah, I know how you feel. I have been in therapy for a few years and we are now getting to this core issue. I am scared to address it because I know the anger is so great. It has lasted all of my life. I am 32 now. If you ever want to write, please do. Maybe we could help each other get through this. Take good care.

[Anonymous]

Hi, my name is Victoria and I live in Oxford, UK. I think I may be able to talk to you about this. My boyfriend, who is now 29, was born with a cleft lip and palate (only on one side). The first time I met him, despite his cheeky, apparently extroverted personality, I knew that for some reason (I had not noticed it yet!) he had in some way been bullied at school. I felt there was a bond there because I was equally bullied (but for different reasons, namely for being short, imaginative, clumsy and overall, plainly eccentric). There was an unmistakable chemistry between us and, all in all, we could not kept away from each other's bodies. Mentally, as well, we share lots of interests, such as literature and creative writing. It was only the first time we had sex that I noticed a scar on his lip, but was too frightened to hurt his feelings to ask any questions. It was a common acquaintance who, without me asking, told me about the condition he had been born with and the fact that he underwent a number of operations (most of them due to later complications with his hearing). In a way, I wish he could talk more openly about this. The way he deals with it is by making some jokes himself, as if it didn't bother him at all. I do not believe this is the entire truth and I believe he has developed various self-defence mechanisms, but unlike what you say about yourself, he appears arrogant and self-assured (until you get to know him well). To top it all, he comes from an aristocratic English background and he is a bit what we call here "stiff upper lip" (i.e. reluctant to talk about his problems as openly as the average American or Mediterranean person would). He has talked to me very briefly on occasions about this (and we have been together for 3 years), but in contexts such as "don't feel so sorry for yourself, I had a harder time due to this and that etc" and he does it exactly in the same way as he would talk about his father's death when he was a young child. I feel he is still suffering but very much in silence, however, I would not like to dramatise and I do not think he has let this run his life at all.


I met him when he was a doctoral student at Oxford University and he then appeared confident. However, some common friends have told me that when he first arrived as an undergraduate he was a lot more introverted, and certainly did not appear arrogant. I think his academic achievements (got a double first in his degree etc) restored some of his confidence but a couple of relationship failures set him back again. He is one of this people who you just hate or love (the same happens with me) there does not seem to be any in-between. He dresses in a rather individualistic (somewhat old-fashioned) manner. I think his school experiences have toughen him up in a positive way in this regard. Since people will notice him anyway, why not dress how he feels happy and not how others expect. He has a good and wide number of friends. We are proud to say that our group is very varied; all ages, genders, social backgrounds and political views are represented. People who have not suffered taunting sometimes get too stuck in a too homogeneous group, where you have to be the same, look the same, dress the same and listen to the same music as your peers, just not to be ridiculised. Sometimes one can feel proud of being diferent. Please do not get me wrong, I do not wish to condomn people's taunting. They should be ashamed of themselves! These are often mediocre people who can only find comfort in embarrassing others. Embarrassing for what? In fact, I don't know about your case, but I find that in his case, he lives a completely normal life and as I said, I did not noticed his scar immediately. It certainly has not stopped me from finding him incredibly attractive and from loving him like I have never done before in my life. In a way, I think I have contributed to him having a bit of a big ego, but so what! after all he must have gone through he is entitled to a bit of ego boasting! To make matters worse, he also suffers from quite bad asthma and he was considered a bit of a nerd at school (you need 3 As at high school to get into Oxford) and to top it all he is, like me a single child (so he was possibly considered spoilt). I do know that sometimes he can be funny about certain photographs and it was in fact his mother who mentioned his consciousness about his lip to me. I was saddened about this, especially as it was his doctoral graduation day, and those concerns should have been far removed from his mind.


I am sorry about the ranting, but I myself would like to understand (and inspire if I can) the experiences of people with this condition. My message to you is please do not let it get to you (I know it is easier said that done). I do not know whether you suffer or not from a speech impediment (he does not and is rather talkative) but even if this is the case, people who get to know you will see you for the person you are. Those who may not like you would not have done anyway and, I do not know whether you are dating or not, but if you are not, no woman that is worth considering would have any qualms about having a relationship with someone with a cleft!