How can I cope with this awful deformity?

[Carmie1028@AOL.COM]

My name is Jim, I'm 41 years old, and I was born with a unilateral cleft lip and palate. At the time of my lip closure the techniques were not as advanced as they are today. As a result, tissue was removed that didn't need to be removed, leaving a jagged zigzag scar...instead of a hardly noticable line that results from modern lip repair surgery. I have had many surgeries, including a lip revision procedure in 1991. Although this softened the appearance of the lip, it still is not anything like a normal person. This affliction has been the worst thing that ever happened to me. I can count the number of dates that I have had on one finger. As a healthy male, it is very frustrating to lack the companionship and intimacy that EVERYONE deserves. I go to bed hoping that I will not wake up the next morning. As far as careers go, mine never really got off the ground. I have a college degree, but nobody seems to want to give me a chance. I have not been permanently employed for over 5 years. My question is this...How do I overcome the lifelong humiliation and frustration caused by this deformity? I have been in counseling twice....for a year or more at a time...with no benefit for me. Also, perhaps more importantly...are there any other deformities that show up along with cleft lip and palate? Specifically, are there any genetal deformities that can be associated with the cleft lip and palate? Thanks so much for allowing me this forum to vent my feelings. I am at my wits end, and would love to hear from anyone who would like to speak with me. God Bless You all!

[Anonymous]

Hello, I am very sorry to hear you are so sad. I am a 24 years old girl, married, 3 kids, so I don't know what to say about relationships. But I can tell you that the almighty God loves you very much and to him you are beautiful. Don't care about what people say or how they look at you because you don't live by their income, if you know what I mean. Be greatful for all the positive things in your life, and I know there are many because God has mercy. Be greatful, as you said that you are healthy. Thank God for all the comodities you have that others don't and wish they did. How awful is a deformity of the face when you have people dying from diseases and in pain. When I was little someone spoke to me and said "WHEREVER YOU ARE, GOD IS WITH YOU" I believe that He has brought you this far and will always be there with you, what is more important than that? If it was meant to be, the right person will come along, that time is obviously not here yet. Be patient and enjoy your friend and being single because you will have the rest of your life to be married.


My son was born with a cleft lip and palate and the scaring is still there. I now that all our love and God, will be enough for him to feel good about himself. I knew he was going to be born with this and was so happy to see him when he was born. People would look at him strangly and I didn't care because to me he was beautiful and I was so greatful for him being so healthy.


Do you think you can get plastic surgery although that is very expensive, I know. Anyways please be positive, thank God for what you have and that you have life and remember you are still young and have many more years to come. Have faith and pray that God help you through this time and ask him to give you strength. Do you know that if I was dying, I would give anything to live and see the world, life is very precious. Don't waste your time being depressed. BE HAPPY!!!

[Melanie - Savanna's mommy]

Hi Jim! My name is Melanie and I have a 1 yr old with Pierre' Robin Syndrome and a repaired cleft of the soft palate. I sympathize with you and understand your frustration. However, I feel your real problem is a lack of self worth/esteem. Your lip is only one small part of you. There is someone out there for everyone, and when you find that person she will not care about a scar on your lip. People may be initially drawn to another by physical attraction, but its what draws you into the heart that makes a lasting relationship. Looks will always fade but true love never dies. If your heart is sincere it will show on your face. Positive attitudes are contageous and attractive. I have a brother-in-law that broke a hip as an early teenager and has limped since. He used to think girls didnt like him because of it. When he decided to take a new outlook on it he had his pick of lady friends. I hope I have helped! God Bless you!


Melanie

[Brian]

All that you say is very true. I am about your same age with a bilateral cleft lip and palate. My experiences are similar to yours in many ways. You should try growing a mustache. If this doesn't work you should see if you can get a fake one made. You are very accurate in asuming that your problems are directly related to your lip. If you get a mustache you will be amazed how many chicks will talk to you. People will be much more willing to deal with you in business. Having a facial deformity causes people, including your closest relatives, not to trust your judgement. This can be easily proven by someone with a facial deformity. One small example out of many is that I often wonder why my sister has never asked me be baby sit for her kids. Judging from the way you write you seem to be reasonably intelligent. Why not spend your time learning how to program web sites and/or learning computer networking. There is huge demand for this stuff and computer "geeks" are typically zitridden 23 year olds. If you learn how to program web sites you can create a business on the web or consult for equity in other people's businesses.
An important piece of advice. I would ignore what most of the other people are telling you who have not grown up with a facial deformity. They'll tell you some "bull" like your are being too negative or that they know someone with a cleft who did well in life. There are other social factors that are important such as the social environment you grew up in. My guess is that you have had to put most of the energy into your relationships with other people, including family members. They can't relate to your problem and can't imagine that it is as bad as you say. People tend to avoid other people with problems. If you talk to people in mental institions you will discover that close to 100% of their old friends have long abandoned them.
In order to get your relatives and friends to treat you more normally you should tell them that your problems are often typical of people with a facial deformity. Tell them that you have done research on the issue and that the reason for much of their behavior towards you is related to your lip. If they deny it say that you have spoken to others with this problem and that they have the same experience. This will give you the upperhand and these people will start to treat you much more nicely.
Good luck. Instead of relying on God to be with you I would try to attack the problem.
So far you have done a good job in realizing the problem. Now you have to figure out a constructive way to deal with it.








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Last changed: June 03, 2000

[Trisha]

I waited to respond to your post, because I was flooded with so many thoughts that I couldn't put it all in one simple post.


On one level, I can recognize where you are coming from. I speak from a shared experience. I am a 34 year old female who was born with a bilateral cleft lip and palate. I had over 28 reconstructive surgeries, and even still I am far from 'perfect'. Perhaps you'd even judge me as a 'sorry case'. However, my life already has taught me lots. I've done enough soul searching, abandoned religion back in high school and take life for what it is. I've done the blame game during my teen and early adulthood years. IT DOESN'T WORK. On top of having a double cleft, during high school, I had braces, big ugly glasses, a bad gait from a dislocated hip, and I was supposed to be put into a back brace for scoliosis. Yes, I was very angry during all those years, and lashed out a lot. I was put into a Catholic high school where none of my friends went, in another town and everyone there came from wealthy families. The teachers and priests loved the 'brown-noses', whose families contributed lots of money to the school (yet those kids were ON DRUGS when they were praying in the chapel!!) I did not have all the operations I should have until I was in my mid-twenties, when I took control of my situation. Back then, my father lost his business which pulled in $10k a year. So, I can sing the blues too. But you know what, it's not worth it. I know how much a person's mind can play tricks and can force one into a downward spiral.


On a practical level: you must agree that EVERYONE has at least one scar on his / her body. Ours just happens to be centered on our faces. The ratio of skin that scar covers versus the overall body skin is very small. There are some people who are very judgemental, and there are people who are not. I have friends who are judgemental and they bring me down sometimes. Though they don't put me down, I can feel their negativity. My ex-fiancee once told me that he thought Cindy Crawford was unattractive because of her mole. (I internalized that really fast, and thought, "Well, what does he think of MY defect??) I have learned to let go of my own judgements of people, and it had an amazing effect: I got along with loads more people, AND I BEGAN TO ACCEPT MYSELF! Take a look at how you judge others. Chances are, if you judge yourself so harshly, you may judge others the same way.


Some thoughts on negativity:
Negative thoughts serve little purpose if you're not going to back them up with ACTION. If you don't like something, when possible, fix it. I took my situation into my own hands when I realized that the surgeon who had performed my first 25 operations worked too conservatively, and that better results can be had by a talented doctor. That's when I found the best surgeon NYC has to offer. He worked wonders for my nose and lip--and what the insurance didn't pay for, I DID. Same goes for the braces. Same will go for the $10k worth of dental work I want to have done. Though I may not be the actress I secretly dream I could have been, I can make some important things for myself happen. I didn't wait for Mom and Dad to fork over the $, I don't blame society if they react to my grimmacing scowl when I'm in a bad mood, I won't blame anyone for where I am today in my career. I know who I am, what I am capable of, what I am worth in the business world and relationship world.


Some thoughts on relationships:
"What, YOU have a boyfriend??"
That's the question I always dreaded and I almost felt like I had to justify having one, because after all, I was "deformed", and who would like me anyway? OK, I am not married like some other cleft-affected women, but I have had several proposals after long-term relationships and was engaged once. (I know myself and what I want, so I am willing to wait for the real thing.) But, I don't blame my cleft for being single. There are lots of people who have all sorts of things, that are married. If marriage is important to you, then take action to find someone to be with. Personally, having a cleft has given me very keen perception when it comes to communication and relationships. I can spot the bad from the good very easily.


Other thoughts:
I've read other posts about limitations. Unless there is some real physical limitation, the only limitation you have is in your thinking. Brian had once written about the supposed fact that there are no cleft-affected athletes because of breathing difficulties. I counter that with my own experience. I was far from being an athelete, however I was still able to ride my bicyle daily 30 miles in under 1.25 hours. I did not experience any breathing difficulties. During the same period, I was able to leg press 275 pounds (not bad for a girl!) My self-consciousness made some limitations for me. I did not pursue a winded instrument in school, because I was embarrassed how my mouth would look on it. I did not pursue any stage acting either.


By now, you're probably picturing me as some 'chick' who dances through flower fields. Not so. I have frustrations on a day-to-day level just as anyone else. I am very pragmatic and try my best to live life as best as I can. I take care of myself, I appreciate others, and I realize I do not have it as bad as some other people. As my mom told me when I was very young, "There will be people who don't like you, and you'll never know why". This is very true.


The best thing that you can do, is to throw that chip on your shoulder into the heap with all the other frustrations you went through, and start living * as * if * this * is * the * one * chance * a t* life * that *you * get. Take Care.

[Carol]

Geez Brian, I sure wish I had something I could blame all my social problems on! I think you better take a better look at yourself. Maybe, just maybe, your sister doesn't want you babysitting because she thinks your attitude might rub off on the kids. I truly believe your problems are you! I felt sorry for you at first but the more I read what you have to say I realize you are the problem not anything else. YOu just have your cleft to blame it on. Get help, you need it!

[Carmie1028@AOL.COM]

Dear Melanie,


Thanks for the nice reply. Yes I do have alot of self esteem problems....but they are all based on this cleft lip thing. It seems that women either laugh at me...or run from me. It's not easy being 41 and this lonely. It's also not easy being 41 and underemployed for over 5 years. I am missing out on so much in life...I'm just ready for GOD to do what he will with me. If there is anything I can say to all parents of children with clefts out there....please make an effort to get your child therapy at the first sign of problems. Love, sheltering, hugs and kisses only go so far. The pain is still there...even though you may think that you are all that your child needs. I admire all adults with clefts that have been able to get and maintain good jobs and careers...and those who are married with families. I long for the chance for a good job and a partner. At 41...I'm doubting that either will ever happen. Thanks again for this opportunity to vent! God Bless You All.


Jim

[Brian]

I was trying to give Carmie some very constructive help. People without facial deformities like yourself typically decide that our problems are imagined and that we should go see a shrink. Psychologists often find it frustrating to deal with people with cleft and other facial deformities. They typically encourage people to do more social activities. However, this does not eliminate, but makes us painfully aware of our differences. My guess is that shrinks help people with facial deformities but the progress is much slower. People with facial deformities generally find it much more difficult to move forward in social situations. Another example with my sister that might demonstrate my point. For her wedding I got them a video camera. They took lots of videos. I wasn't in "any" of them for many years until I said something. One of the great problems of understanding facial deformity is the insensitive reactions of people like yourself. I think it is also irresponsible to make conclusions like you have about someone elses psychological needs over what they said in a few sentences on a keyboard. Judging from what I believe was one of your past posts, you have been involved in smoking and drinking. I have found that people involved in these adictive behaviors have a very distorted view of reality. They are often very abusive and insensitive in their social dealings.

[Trisha]

Brian,
No one can deny you of your feelings, but some of this you may be taking too hard. Life does not have to be one big misery. I read your posts and I can relate to your pain, because I've felt it too. I also recognize a personality aspect that we seem to share: the need to be heard. Not necessarily that we have to "be right", or win an argument or discussion, but just to have our feelings validated. I see this in you because after you write a post and someone responds, (especially someone not cleft-affected), you become more upset. But trying to tell these other people that it is a difficult thing to get past, is a moot point. Some people don't even care to try to empathise, and I doubt you want any kind of pity, just understanding. That's why these sites are useful. Unfortunately, you can't change the opinions of everyone, but maybe a few that care enough to listen to what you have to say. It's one thing to get your message out so that people are aware, but it's another to demand that they actually understand.


I've been through a lot, just as many of us have. I won't deny the fact that I had a very hard time accepting myself after repeatedly being made fun of. But when I hit my mid twenties, I realized something that stuck with me. We create our own realities. If we continue to get stuck on the pain of insults that we received as 8 year olds, we won't grow and mature. This is true not only about how we view ourselves with facial deformities, but how we see the world. Do we hold the exact same values and prejudices as our parents and families? Or have we grown independent (thereby really making the "best of our situation"), and learned to think and evaluate things for ourselves?


From what I read of your posts, you were able to get past some of the prejudices other people had toward you. You managed to excel in school enough to be accepted into a really good college. Do you not have pride in yourself for such an achievement? You were not judged unfairly by all your teachers if you were able to achieve that. So the world is not this totally horrible place that you seem to think it is.


The point about not being videotaped brought back some memories for me. I, too, am not in as many family photos as the rest of the group. But I think I created that response from my family. I say this, because my friends photograph me anyway. When I was about 13, and really not far along in my surgical + braces treatment, I was extremely self-conscious. An uncle ran after me with a video camera, almost sadistically. He didn't realize the camera shyness he caused me. I envision that part of the video tape of me shows me running, screaming, into the bathroom, where I then sat crying. Perhaps if I didn't make a fuss, he would have relented, but I was only a kid. Anyway, since then, or maybe before, I could not bear to look at myself in pictures. I cut out my 7th grade yearbook picture and never showed up for my 12th grade pictures. My family assumed I never liked to be in pictures, and they never bothered with me. It would be really dumb for me to tell them now, "I'm ok with picture-taking". I just act natural in those situations and let things run their natural course.


I know I responded to you personally about my own personal career achievements. But I'll repeat myself for any benefit someone else may gain from reading this. I did not do well especially in high school because of a few teachers who thought, with a cleft comes some form of brain damage. I was not as aggressive as I am now so I did not prove them wrong by doing well. I was beaten down and I didn't bother to try. Partly because I unwittingly thought, 'what's the use'. I managed to get into a 4 year college and lived in dorms and my own apartment on the water. I realized that I did have some intellectual potential if I applied myself, and if I were given a fair chance. With the exception of a rejection, at age 17, at an interview for a part time position at Macy's for which I was qualified (I passed the written test with flying colors), I have never experienced any kind of prejudice in interviewing or landing jobs. I never bring up my cleft at work, unless I have to take time off for surgery.


Note to parents: if you sense your child is not doing well because of unfair treatment by an unfair teacher, move him/her to another class. Be proactive in protecting your child's self-esteem.


Though I have not achieved everything I set out to do, I think I'm doing pretty well. I made some ok decisions, and with a lot of soul searching I improved my self esteem in a way that works for me. I don't put other people down, in order to raise myself up; I don't expect others to repair the damage that was done from my past; I don't believe it's the responsibility of others to make me happy. In my company, I am the only demonstrator / trainer for workstation applications for NY, the NorthEast US and Canada. In the other branch in NC, there are 4 people doing my job. I have brought in nearly a million in sales because of my talent on the system. I train people for 2 weeks at a time to use the software and I know I've done a job well, when they are up and running in a few short weeks. I am asked to go to most of the trade shows my company attends. Years ago, I would not have envisioned myself actually representing a company to this degree, but here I am. Please don't be negative and think: "Well, are you MAKING a MILLION DOLLARS??" Because, No, I am not. But that is not what is important here. And to think back to 10th grade, when my math teacher told me, "I don't care if you pass every test, I am still going to fail you", and I've been working with math problems for the past few years, and estimate making at least 3 times her present salary. (Not that money is important) I've rented apartments in NYC for the past 11 years (nearly $100k spent--ok, I should have bought a condo!) (I'm 34), bought almost everything I own, never borrowed a dime from my parents, and appreciate everything that I do have. I travel all over the world and look forward to what life is going to show me.


A thought about how others see us. Unless someone actually tells you what s/he sees, you will not know. You may see love in someone's eyes, but we are not mind readers. It's best not to assume the worst. Sometimes on the subway, I would 'feel' someone's eyes on me, only to look up and see that they were facing me, but their eyes were closed. So, I learned not to assume the negative. I am not a pollyana, but I'd rather give people the benefit of the doubt--and I am proud to say, that I HAVE NEVER BEEN WRONG, about the way I've viewed people.


I believe that weird behavior elicits weird responses, and also that 'practice makes perfect'. A few years ago, I spent a lot of time looking in the mirror, not to be vain (believe me!) I wanted to see what others saw. I watched how I spoke when I was on the phone, how I smiled, and how I ate. I fine-tuned all of my actions so that I'd be more confident in knowing what I was presenting to the world. It really seemed to help a lot. And it made me more comfortable with looking at myself, and having others look at me. When I started to date a college boyfriend seriously, when he stared at me, it made me so uncomfortable (this was several years before the 'fine tuning). I realized that it was a trust issue; was he going to make fun of me, the way the boys did when I was a child? He didn't and it helped my self-esteem. I learned to look at him, and then others, in the eye. It was quite a breakthrough, though it may seem small.


So Brian, I hope I left you with some positive thoughts. Admittedly, having a cleft is nothing to be enthralled with, but it doesn't have to stop somebody from really enjoying life either. I hope you realize that there is so much more out there than some small scars. It starts with your own self, and it grows from there. What will it be, **Positive** or ^^Negative^^. Each way of perception affects your life, and only you can decide how you should live it. Take care.

[Anonymous]

Brian,
No, I do not have a cleft but my daughter does. She also has a spinal problem that has required back surgery. She wears a brace day and night. She takes the brace off for gym and other activities. My daughter is 11 years old and a social butterfly. She is a cheerleader and is in dance and just loves the world around her. She is the most loving caring person that I have ever met and does not question why she was born with multiple birth defects. If a child questions her because of her speech or her scar she just explains to them about her cleft and how it was repaired. So far she has not been teased about it and with her upeat personality I really wonder if she ever will be teased. I know it was more difficult when you were born to have a facial defect, it just seems from what you have written that all your problems are from your cleft and I just wonder if this is true. Have you ever asked your sister about some of the questions you have concerning your family and your cleft? You might be surprised at the answers you get.
As for drinking, smoking and other addictive behaviors, please do check all previous posts. It don't engage in any of these activities.
I am researching a new surgery that my daughter may be having and in doing so have met and talked to many cleft adults. Some were teased and treated unfairly others sailed along just fine. Most of them believe they are stronger people because of their clefts. Not that they wouldn't give it up if they could!
Take care, Carol

[c_ar@go.com]

My son was born with a cleft lip and I think he's beautiful!!!

[steph&haleigh]

My daughter was born w/cleft lip and palate and she is the most beautiful child in the world.Believe in god and everything will be ok.Everyone in the world looks different thats what makes us our own selves.god bless

[judy]

All I can say is hang in there. There was a TV special years ago re how handicapped or disfugured people survide. Many of them said that they took night jobs - this could be a police officer, nurse, custodial worker, etc But being self-employed is not bad either. Try temp agencies or temp agencies that deal speciafically with handicapped people. Be a temp is better than nothing. Also I have a cleft lip and palate and I have been stuck in a low grade position for years. So do the best you can and hang in there

[jUDY]

Brian, I am amazed at your insight and I wish the internet was available years ago. I had a hard time with relatives who viewed me as "incompetent." I have a unilateral cleft lip and palate. My son has a cleft palate. We both complained of speech problems. I have been held back because of my speech and appearence. I could never get dates(before marriage and after divorce) and I am a woman (age 53). I tend to get losers for possible dates. I have even been told by a man that he couldn't sleep with my looks in bed. I have had a low paying job all my life and because of this my children have suffered due to diminished economics. Its been terrible but what am I to do?

[jUDY]

Brian, I am amazed at your insight and I wish the internet was available years ago. I had a hard time with relatives who viewed me as "incompetent." I have a unilateral cleft lip and palate. My son has a cleft palate. We both complained of speech problems. I have been held back because of my speech and appearence. I could never get dates(before marriage and after divorce) and I am a woman (age 53). I tend to get losers for possible dates. I have even been told by a man that he couldn't sleep with my looks in bed. I have had a low paying job all my life and because of this my children have suffered due to diminished economics. Its been terrible but what am I to do?