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Suzanne's Story
Thought I'd share my story as so many of you have done!
I was born October 5, 1962 in Boston, Massachusetts. I was the third of three girls. My parents were older when they had me (mom 39 and dad 43). I was SUPPOSED to be a boy. So imagine the disappointment when I was not only another girl, but born with a unilateral cleft lip and palate. For years I felt the unspoken disappointment I caused my parents, although they gave me nothing but love. Unfortunately, they gave me love but not enough words of strength and support, causing me to be self-involved, overally critical of myself, and unable to deal with my life as someone with a facial deformity. I have always felt responsible for every bad thing that happens. They did the best they could, but were unprepared to deal with the cards life dealt them. Instead of spending their later years traveleing and enjoying life, they were having to go to appointments and surgeries, with bratty little girl who felt out of control. I have felt guily about this all my life.
Unlike many of you, although I remember having surgeries, I do not know when they were or what they entailed. I had a procedure very young (around 2). And a couple more in my late teens, the one where the bone graft was done and my jaws were wired together for 8 weeks. That was somewhat unsucessful. I also had my nose repaired in my early 20s. That was the only surgery to give me a tangible improvement in my looks. There was no orthedontia component involved; luckily I have teeth all across my upper gums, but not the right ones in the right places! I also still have an opening in my hard palate, making my speech very nasal. My upper jaw is substantially pushed back. However, despite all this, my husband concludes that I am beautiful. He truly believes this and is not telling me what I want to hear. He is one of the few people who has ever called me beautiful.
Anyway, my surgeries were very emotionally painful and traumatic. I do not remember much of them; I think I have blocked it all out. Other people's stories are fairly detailed as to their surgeries;I can't believe it! I am still unable to say the words "cleft palate" to even my closest friends. I felt an abject humiliation about it that continues to haunt me to this day, although I do manage to have a life.
Unfortunately, when I was 15 and having one of the more difficult surgeries, my father died of pancreatic cancer and my mother suffered a brain aneursym. In the space of a year, my life fell completely apart. My mother was unable to work and we went on public aid. My surgeries effectively stopped. I was glad at the time to avoid the pain and humiliation of the surgeries, although looking back, feel I was done an injustice by no one having said, "This girl needs to continue her surgeries; let's find a way to help her." I was allowed to fall through the cracks and I was so stunned by the turn of events in my young life, I could do nothing to help myself. I was very passive then and let myself be lead by others, or anyway by my own inability to speak up for myself.
It was quite hard to realize after so many years of painful surgeries that I was NOT going to look like a teen model, and Shaun Cassidy was NOT going to come rescue me from my life. I pushed this information to the back of my mind and went on with life. I graduated high school (my school career was horrific, being teased and made fun of and having things thrown at me in class, no understanding teachers, no prom date, no boy EVER EVER EVER interested in me) and got a series of mundane jobs. I have always been an underachiever, and it was never considered that I might go to college. My older sister was busy taking care of my invalid mother and my younger sister had escaped to Maine with her boyfriend where she lives to this day. I was allowed to flounder and had no firm foundation on which to stand. Family, I realize now, is SO important. At the time I thought my family was pretty good; now I see how dysfunctional and avoidant of problems we were.
I made friends and had somewhat of a social life. In my 20s I did go to clubs and have friends and go to movies and felt like I was "waking up", but there was no special someone. Since I could not talk to my friends about my cleft palate, I got no support. I managed to teach myself word processing and had a roommate who got me a job at her company. I found I loved typing and organizing documentation; I suffered as a secretary for many years until two years ago, when I found a job doing word processing for a very large benefits consulting firm. I love it!
Just when I thought I would be consigned forever to a lifetime of being alone, many tears shed, etc., I got a little part-time job at a video store. I was bored and loved movies and had a friend who worked there. This was 1988. I was 26 and had never had a real boyfriend, only a couple of kisses from guys who thought I'd be "easy." I was very lonely and hoped to meet someone! Well, I did. There was this very cute guy from Chicago working at the store; he was studying architechture in Boston and had moved here with his girlfriend. For some reason I am still unable to fathom, I became Miss Popularity at this store. I shed my shyness and became the life of the party! Being with the same people all the time made it easier for me to get to know them, and when I did, I dropped my inhibitions and went for it! Guys were looking at me all over the place. I became "hip". I went to the hip downtown clubs and danced and drank and had fun, for the first time in my life, really. Customers at the store, really cute guys, were talking to me, FLIRTING with me. I could not believe it. It's really true that the attitude you project overcomes what you look like! I acted comfortable and approachable and flirty and so I attracted people. Not only did I attract this cute co-worker from Chicago, there was another customer who used to talk and flirt with me all the time. I was loving it!
Anyway, this cute co-worker and I fell in love. He dumped his girlfriend (someone got DUMPED for me--I couldn't believe that one!) Having him fall in love with me was a high point the likes of which I have never gotten over. That Christmas was the best ever for me. I got presents from a guy who adored me and kisses under the mistletoe. When we were out in clubs, other guys looked at me! I was told "not to limit myself, I was really cute" (honestly said to me by someone!)
By and by we got serious. We moved in together and got married in the spring of 1991. We moved back to the Chicago area and now have two boys, ages 5 and 3. Our bubble kind of burst when both our sons were diagnosed with PDD/autism last year. It's very hard to maintain sanity and I'm trying to be the kind of mother to them that my mother was unable to be to me. (She died last year, after being infirm and "out of it" for 20 years.) It has made me realize that looks are not everything. My boys are extremely good looking on the outside, really child-model pretty, and yet on the inside, their brains do not function normally. It has been very hard on our relationship, but yet we somehow go on.
I have kind of made the decision to continue again with the surgeries to repair as much as I can of my cleft palate. It's hard to spend any time on myself when my children need SO MUCH! But, at 35, I realize I owe it to myself to stop running away from the past and my facial deformity. My friends all love me and I will get a lot of support from them. I saw a doctor after my last son was born who got me all excited about starting up surgeries again and then, due to his own personal problems, told me he could not handle my case. I will be speaking to my primary care physician who will refer me to someone. (I'll be doing this under an HMO; anything I should know?) She asked me about it before, and I have always said, "I don't have the time or emotional resources to spend on myself with my kids the way they are." But now I feel differently. I don't want to look back in 10 or 20 years feeling increasingly bitter about having an unrepaired cleft palate and two autistic sons. I want to do something that will have a tangible outcome. We are doing LOTS and LOTS of therapies for them, but it is really unclear at this point whether they will be functional members of society or not.
However, I refuse to let myself be intimidated by my own inabilities anymore. I will probably never be the actress or model I have always wanted to be, and for sure I will never be starring with Leonardo DiCaprio in a movie, but at least I will be able to say, "I've done the best I could. I had all the surgeries I could." If anyone wants to share a similar story, or just share, I'd love to hear from people. My e-mail address is elnsrsmith@aol.com.
Thanks for letting me vent!!!!