Out from behind the curtain

I used to always say “pay no attention to the person behind the curtain.” That was me, the communications consultant always behind the scenes making sure events and presentations went off smoothly—but never comfortable being the one in the spotlight. That was until I was in a situation where my passion for a subject overrode my unwillingness to step in front of a crowd.

It started with a request from my plastic surgeon to take part in a panel discussion representing adult cleft palate patients. I would do anything for my surgeon—he gives his life to helping children with facial differences and he is my hero. There is nothing he could ask me to do, that I would not at least try to do for him. Putting my fears of public speaking aside, I agreed to attend the conference and be a part of the panel discussion. I thought it wouldn’t be as difficult being part of a group and it was supposed to be a Q&A so all I would have to do was answer questions. Or so I thought.

I found out, as I was walking up on stage that I was supposed to tell my story first; then open it up for questions. Since I did not know this ahead of time, I had no time to stress and worry about it. I took about five minutes giving the highlights of my story; I explained that I have a brother also born with a bilateral complete cleft and though in our 40s today, we have still never spoken of it, that I did not get the necessary procedures to repair my cleft until I was in my 30s, and that my final surgery was just one year prior to this meeting. The participants seemed to be interested and had many questions for me.

I never thought I would enjoy talking about my birth defect as much as I did. I realized for the first time, that just by sharing my story, I was making a difference in someone’s life. Nothing makes me happier than knowing I’ve helped someone and if sharing my story helped a parent through a difficult time or helped a child see there is an end to their corrective procedures and a light at the end of the tunnel— I was going to keep talking!

Impressed with my part in the panel discussion the executive director of Ameriface, a national charity asked if I would be a guest speaker at their Annual conference in Las Vegas. Thrilled at the possibility of helping an even larger group of people with my story I agreed.

Now, faced with the reality of speaking in front of a large group of people without the safety net of being part of a group, I was nervous. I needed to take all my professional expertise as a communications consultant and put it work on myself. All the advice I have given to others, I now needed to apply to my presentation. I had an hour to fill and not sure how I was going to make that interesting, engaging, and most of all helpful.

I took my own advice and did not memorize a speech, I simply focused on the three points I wanted to make. I called these points my “rules” for surviving life with a cleft:

Rule One—Don’t let it define you
Rule Two—It’s the right time for you
Rule Three—There is an end.

Embedded in these rules was my story and helpful tips for others who are going through what I have personally survived.

I used visuals to help punctuate my story—using before and after photos and even a photo of my surgeon—who everyone wanted to hear more about. The presentation was a hit. The audience was engaged and the question and answer period was lively and fun. In the end, we actually ran out of time and had to continue the conversation in the hallway to make room for the next presentation.
One of the keynote speakers from the conference, who is a professional speaker and published author, attended my presentation and afterwards asked me if I would be interested in forming an alliance with him. We are in the early stages of determining what that could be, but I guess I am officially out from behind the curtain.

What's your Story?

Recently I have spent a lot of time talking with other people who were born with clefts. I have to admit, it is a bit strange for me; I spent my entire life never meeting another soul born the way I was (with the exception of my own brother) and now due to luck or coincidence or whatever you want to call it, I have met several adults. The really interesting part is our stories are all so similar.
I met a man who, like me, was born with a bilateral complete cleft and also has a sibling with a cleft. He shared with me that growing up he never spoke to his sister about it; my brother and I are in our 40s and to this day have never spoken about anything to do with the defect. His story also paralleled mine in the fact that he has a very positive outlook, yet his sibling struggled with being born with a cleft.
I met a young woman who was born with a unilateral complete cleft lip and palate and similar to my story didn’t receive all the treatments as a child. Now in her 20’s she is beginning the process of researching, planning and paying for all the corrective procedures that were not done when she was a child. Boy, could I relate to her!
In my own office, I met a woman about my age that was born with a unilateral cleft lip. She is friendly and outgoing and actually reminds me of me a little bit. Several people who know us both say that she is a blonde version of me. She shared with me that her cleft has not impacted her social life at all.
Life is funny. You never know who is going to come into your life or why. I believe everything happens for a reason. I have met all of these wonderful people because I have opened myself up, put myself out there and now all of these fantastic people and experiences are being sent to me. Sharing my stories with them has had such a profound impact on me. It helps me keep the passion and fire to keep telling my story in a way that will help people. Just when I think there is really nothing interesting about my story or that it won't help anyone, another person comes into my life to prove me wrong.

How to handle an akward situation

One day (actually it has happened more than once) I was standing in line at the store and a child was looking at me for a longer than comfortable period of time. I just knew the child was trying to figure out what was different or “wrong” with me. It didn’t bother me, but I felt bad for the mother standing there, aware of what her child was doing and obviously uncomfortable at the prospect of the child saying what was on his mind. He did just that, “mommy what is wrong with her face” and pointed at me – I felt so terrible for the mom. I just knew she is so embarrassed by what her child has just said. I handled it by letting the mom know I was more than okay with what her son had just asked and then I simply explained to the child that I was born this way.

Am I the girl with the cleft?

So, I can honestly say that it comes as a surprise to me when I look in the mirror and see my cleft lip scars – it always has…even when the scars were pretty obvious! As a child and young adult I never spoke of the defect either. Not because I was ashamed or embarrassed, but because I thought there was nothing to say. However, in the interest of full disclosure and complete honesty I do wonder from time to time if someone is looking at me – differently. When I was younger it never occurred to be really, but as an adult, especially when I am volunteering at any sort of craniofacial charity event I wonder if people look at me differently or define ME by the defect? I wonder if they are thinking, “Oh there is that girl with the bi-lateral cleft.” Of course at these types of events there are MANY people with clefts and other craniofacial issues, but that is actually WHY it occurs to me. Up until recently I never knew anyone else with a cleft (except for my brother) and it was never a big deal to me, so I really never thought about it or gave any consideration to what other people thought about it.

Working with the local charity has brought my own issues to the surface a bit. Or maybe it is more accurate to say has made me more aware of what I am thinking than I have ever been before. For example, recently I went to a conference at a local hotel and as I walked in the door and was reading the signs to determine which room I was to go to for my meeting, I just KNEW the staff was looking at me thinking “Oh she is obviously with The Cleft Palate Foundation Group.” Silly, yes. But true.

So it is just so interesting to me that while I don’t define myself as being born with a birth defect, it has recently come to my attention that other people might. I chose to look at that as a good thing, after all; people will ALWAYS remember my face!

The way I look at it

I have been thinking a lot recently about how I was teased growing up. Let's face it (no pun intended) having a facial difference can make you an easy target for kids. Especially if that difference also makes you "talk funny". Kids are cruel. They tease anyone and everyone they can. The way I look at it, it is how you deal with it, that makes the difference. I admit, I made it easy to be teased. I was an easy mark. I was quiet - heck I was down right meek. To know me today, you might find that hard to believe but it is true! However, I think while the teasing may have played havoc on my self esteem a bit it also gave me an inner strength and resourcefulness that has served me well later in life.

Learning to take control over how much you allow your physical appearance to affect your life is a skill that people with cleft lip and palate need to develop early in life.That's the way I look at it anyway!

Three Rules

Recently I have had the opportunity to share my personal story about being born with a bilateral complete cleft lip and palate. I never realized that telling my story could actually help people and in turn how good that would make me feel.

In thinking about my story I realized that I have three rules that have helped me deal with being different and all that goes along with that.

Rule #1 - Don't let it define you.
I am 40 years old and I can honestly say that I never have and I never will define myself by the birth defect. Yes, I was born with a bilateral cleft and yes it has created a certain path for me in life - but it is only ONE thing that did. It is only one part of who I am, only one factor that shaped and determined who I would become.

Rule #2 - No matter what you are feeling or when you are feeling it; it is okay.
Living in our society with an obvious facial deformity is difficult. There is no doubt about it. The stares from strangers, the awkward questions from well meaning people, the self pity and self doubt that comes along with looking different than everyone else - all of this will take a toll on you. I know it did on me. Sometimes I openly wept about it and other times I buried the emotions so deep, I forgot they were there until something would happen and they would erupt to the surface like a volcano. I have come to believe that whenever I feel what I am feeling, it is the right time for me to feel it. Even today, while I can say I no longer have a cleft palate, I HAD a cleft palate (I had my final procedure last year) I still have residual emotional baggage that bubbles to the surface from time to time. I know that means it is time for me to face it; time for me to deal with what I am feeling because NOW is the right time for me.

Rule #3 - There is an end
In conjunction with rule #1 if you don't define yourself by the difference, then it will be easier to see, know and believe there is an end to all of it. And as you saw in rule #2 I said I HAD a cleft - that is because that is how I feel. Much like if you broke your leg - yes at some point it was painful, you may have had surgery, physical therapy, and may still even walk with a limp - but the fact is you no longer HAVE a broken leg. I have had 15 surgeries in my life, years of speech therapy and I still have scars but I no longer have a cleft palate. This was a difficult concept for me to grasp - but one I am so glad I finally understood. It has made a world of difference.

These are my rules, they have helped me through my life and I hope they can help others as well.