Much Like Lady Gaga - I Was Born This Way

I was born on a blisteringly hot day in August outside of Atlanta Georgia. It was in the 80s before high tech ultrasounds and trendy genetic testing so my parents weren't aware of my sex let alone the hole in my face ( everyone hates when I call it that). So when the midwife told them I had been born with a cleft lip and palate my worried father looked to my mother, a nurse by trade, who told him simply that “they can fix that”. After that I suppose life went on normally.

I don't know whether my parents were especially good at normalizing my congenital defect, or just normal parents who took hundreds of photos of their children. I suppose some parents might wait until after corrective surgery to really start busting out the cameras. In the photo albums my siblings and I obsessively poured over, one huge album for each of us three girls, there were so many photos of me as an infant before either of my early corrective surgeries. Pictures of my 3 1⁄2 year old older sister proudly holding her baby sister. My grandfather holding me with a look of pure unadulterated joy. It has always been agreed by the sisters that I was the cutest baby. There really is something cute about a baby with a hare-lip. I always seemed to be smiling maniacally.

A few months later I had surgery to repair my lip and palate. A cleft lip and palate is essentially when the roof of the mouth and lip are not fused at birth. The major problem this can cause is that babies born with clefts can have trouble eating and can even starve without medical intervention. That's why there are those great charities that provide lip and palate surgery to kids in the developing world. It is one of the more common congenital defects happening in about 1 in 1000 births. Its causes are often unknown, it can be genetic, environmental or seemingly at random. It is super easy to fix though, here in the western world. The tissue is there but the palate and lip are not fused so essentially they just sew it all together. The real challenge is that the surgeon is working with such a tiny mouth.

I have been thinking a lot about how my story differs a lot from most people on sickboy. There was no moment of relief upon finally having a diagnoses for the mysterious illness I had been suffering from. There was no moment of terror after an accident or a diagnoses, knowing that my life was irreparably changed. People with congenital defects like mine understand their situation pretty much from the moment of self awareness. I always knew I had a cleft lip and palate and saw a lot of doctors, specialists, surgeons, and dentists in my early years. Because I never knew anything else – you have to rely on those around you to tell you you're different – for better or worse. During the recording of the podcast we talked a lot about bullying – and how it wasn't really a problem (not for the cleft lip at least). The thing about bullying is that young kids aren't really bullies – teenagers are. By the time we were all in middle school the cleft lip was old news – they had to be more creative. Young kids are more curious about difference then afraid of it. I got more questions then taunts. But I was aware I was different, very few 7 year old got pulled out of school for major surgery. At 7 I had the first major surgery I remember. Although the soft tissue is easy to fix the bone can be effected as well. My upper jaw wasn't fused either. They had to take a piece of my hip bone and grind it up to put into my jaw. Which by some magical human body alchemy causes the bone to fuse.

I'm an American so I don't know what it would be like to have been born in Canada with a cleft lip and palate but I have a hunch if you were born in Toronto you would be made in the shade. Sick kids does great work with cleft lips and palates. But I wonder if you would be offered all the crazy surgeries I got offered as a teenager. It wasn't the school yard bully that gave me a complex as a teenager – it was the surgeons. Perhaps it is because my folks had the Cadillac of insurance when I was in high school but I got pitched all manor of Frankenstein procedures – halos, head screws, weird internal mechanisms to expand my upper jaw, nose jobs, “whistle repairs”.My parents weren't pushing any of this stuff on me – they just wanted me to know all the options, but for a 16 year old it was pretty overwhelming. I felt like I was letting people down by refusing their fancy medical intervention. Mom always said surgeons thought a chance to cut was a chance to cure – well there wasn't much to “cure”. I think in my case a chance to cut was a chance to buy a boat. Some people I dealt with surely had altruistic intentions, but some, I'm sure, did not.
It's strange to imagine how life would be different if I hadn't had a cleft lip and palate.

Especially because from my perspective it has affected me very little, but maybe it has effected me a lot – how would I know? I'm not saying “I wouldn't trade it for the world” as some people who have encounter adversity feel. It is my world – I can not conceive of one without it. But I really have no hang ups about it, maybe as I get older that would change – if the predictions of the some of the surgeons come true and I have trouble with eating or breathing through my nose. As of now though its just me – and I don't feel the need to have screws in my skull to change it.

When I first started listening to Sickboy I never considered myself a candidate for a contributor. After all I wasn't sick, I've just got some fun facial scaring. But it quickly became apparent that sickboy wasn't for the morbid curiosity of hearing about sickness. It is a series of conversations about difference in the human experience. I'm glad I got to share mine.

- Emily 

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