Quote From: mzdebbieI am a 47 year old, white female with a port wine stain hemangiona on the entire left side of my face. I was born "normal" and not until I was a couple of months old did my Mother notice what looked like a little rash developing in the center of my left cheek. She thought I was allergic to my milk. I'm not sure how long afterwards, however, the port wine stain hemangiona spread all over the left side of my face.
Along with the discoloration (it's a port wine stain color), the skin is also "diseased" - abnormally thick, which makes my face asymetrical. And wouldn't you know it? Just last year, I believe it was, they came out with this big study that determined the single most important factor in our definitions of "beauty" or what we consider "beautiful" in people was symmetry. I couldn't believe it when I heard, and yet I knew that it was true. I could have told them that without all the research. It's certainly the first thing I notice about a person's looks.
I have always wondered why women wear make-up when they don't have to conceal anything. The one thing that I regret not being able to do is be completely natural when I go out in public. By the time I was in the 6th grade, many years ago (1974), I realized that I would look more "normal" if I wore makeup to cover up my port wine stain birthmark. I have been wearing it ever since. Normal things that everyone else takes for granted are obstacles for me. I have to repair my makeup throughout the day, or the facial oils will make it come off. I can swim in my makeup, but I can't dry my face with a towel after swimming in the pool, not without rubbing off my makeup. I can't easily blow my nose in public (not that I would anyway), without worrying about messing up my makeup. It's difficult for me to hug people most of the time, because they usually pull you up close and then I'm worrying about getting makeup on their clothes. I can't go on excursions or hiking trips or camping, or anything like that without taking my makeup along. I can't sit down and put my face in the donut hole and get a massage, because my makeup would come off on the pillow. I can't just walk up to a child and start playing with it or acting like I'm going to hold it (which I wouldn't do anyway) for fear that I will scare the kid. I usually either scare a child or they think I'm a clown and they point to my nose.
There are many, many things that everyone else thinks nothing about that I am ever conscious of.
Even adults are very curious about me, manytimes asking me if I was in an auto accident or a fire. For years, I wished I could say that I had been in an accident - that I was born normal, but I got unlucky and had an accident. Instead, it's as if I was born defective - freak of nature, if you will. That somehow is more pathetic. And the one thing I have always despised is the sympathy of other people. I don't want pity. I want understanding.
I have always considered myself the same as everyone else, regardless of how I look. As I've grown older, I see that having dealt with my birthmark through the years has had more of an effect on me than I realized it was having. I have always just dealt with the issue and gone on about my business. But I know that my having gone to college for 9 years was in part due to my reluctance to face job interviews and rejection. So I stayed in school and kept getting degrees. In 1985, I left the Ph.D. program at UT-Knoxville and went on the road traveling across the country in the photography business. And there is where I've been for the past 20 years.
Only twice in my life have I had any type of reconstrutive surgery. Oh, when I was a kid and they didn't really know what they were dealing with, they did try to burn the birthmark off with dry ice. It blistered the skin on the left side of my face. The hope was that when the blisters burst, the new skin would not have the birthmark. But, of course, that didn't work. It hurt like hell, but I was willing to go through it in order to look more "normal."
My opthamalogist of 45 years told me about a very good plastic surgeon at Duke University, Dr. Riefkohl. He thought I should make an appointment with him and see if there was anything he could do for me. I did have some major reconstructive surgery done in 1984, while I was attending UT-K. I was hospitalized for 1 week while my face and eyes healed themselves. I was pleased with the outcome, as it was definitely an improvement over the original. On a subsequent visit to Dr. Riefkohl a year or so later, he attempted some more facial surgery using only local anesthesia. That was a terrible mistake, as I could feel every move of the knife. Tears flowed down my cheeks as I tried desperately to hold still. Unfortunately, the more he cut, the more my face bled (the hemangiona is blood under the skin), and the more the local anesthesia came out, and the more I felt the cutting, and on & on. He ended the surgery in frustration and refused to do anymore with me after that. I have always said that I traumatized him. I really believe that. And I didn't mean to do it. But when I was sent to the recovery room, I could not get my breath. I was crying uncontrollably. I tried to assure my parents that I was not hurting - and I wasn't - but I just could not stop the crying. It was to the point of convulsions almost. The nurse came in and gave me calming down meds and finally I did. But that was the last time I saw Dr. Riefkohl at Duke University.
A couple years later, I had one last surgery in Atlanta, GA, where my nose was reconstructed by taking skin from my neck. So now I have a 10" scar on the side of my neck that has become the left side of my nose. Again, I was pleased with the results, as they were an improvement, though certainly not perfection.
The main problem I'm having right now is that my nose - the $5000 new part - is collapsed onto my airway passage. I have difficulty breathing through my nose because of that. I can push the end of my nose up (sort of like a pig's snout, I guess) and it completely clears my air passageway. So I feel sure there is some surgery that could be done to correct this medical problem. Of course, I would also ask the fairy God-Father Phil to find me someone who knows what they are doing with port wine stain hemangionas and who could take away this discoloration. At least then I could go outside of my house and onto the sideway without worrying about who is going to see me without my makeup on. That is sheer misery. I don't even answer the door without my makeup on, unless it's someone that I'm comfortable with seeing me. I would like to be able to go hiking and get terrribly hot, as I always do, without worrying about my makeup looking terrible and coming off - exposing the purpleish skin beneath.
So I would like to have some surgery to help me "approach normalization" as the Sociologist Irving Goffman wrote years ago in his phenomenal book Stigma. If anyone wants to know what its really like living with a physical stigma - abnormality - in this culture, then read this little book. It says it all.
Thank you for listening...MzDebbie.
I hope Dr Phil's team regularly monitor these boards and recognise that people like MzDebbie are deserving of your help. I know that many people including myself feel that surgery would be an answer to many problems, but in comparison, these problems are minor. I would love to see a show where people like MzDebbie are helped. Come on Dr Phil, recognise the need here, forget the AAA to C cup and let's see real life changing help.
