Testimonial: Jade Price
This is a "quick note" for all the people who've been kind enough to ask "how was America?" and especially for the people who helped me to get there. The problem is that it's not a question that can be answered when dashing past in the corridor, it's the half-hour-response variety of question. I was emotional wreckage far beyond the usual emotional wreckage - bi polar, actually, and I'm concerned all the lovely people I met think that's my normal personality! I think the first spotty adult person I met was a particularly attractive woman and my knee-jerk reaction was "why is she so beautiful?! This is supposed to be an ugly sentence!" This self-same woman also happens to be successful, highly intelligent, classy and married and reminded me so much of my own sister and I was pleased to spend the week with her and gather all her advice on the strange bodies we have in common. Throughout the day (registration day) dozens of children began to arrive with their parents and siblings. It was bizarre to see these speckled little people rocking up and seeing another little speckled person they had met maybe two, four years beforehand at another NOI conference and what was so noticeable were the smiles, the laughter and the lack of self-consciousness. These were children in short clothing "letting it all hang out" and when I remarked upon it, i.e. why aren't they covered up?? I was told "This is the one time they can wear whatever they like, don't you be afraid to go put something else on."
There was difficulty in seeing the adults arrive (some 30 of us) and some incredible scarring from plastic surgery, some successful, some not successful, some experimental. While it seems to be the big (biggest) question (surgery or not?), the adults whose parents chose for them when they were very small have no regrets and no resentment towards their parents. Likewise, we adults who haven't had the surgery, or have kept it very minimal also respect our parents in all the difficult, uneducated decisions they had to make. Certainly, this strange condition (or "dreadful disease" as a supposedly close friend once called it) affects all races, nationalities, social types and sexes. Whether a person chooses to shave off all body hair every day and hide their birthmarks, have radical surgery and choose scars over pigment, or wear both nevi and hair loud and proud, all that really matters is that a person is comfortable in their own skin and that they find some way to learn to love their body, and find humour in the daily, idiotic reactions of strangers.
The pervading theme (without there being some designated "theme") was, beyond doubt, family. From people sharing money, clothes, affection, outings, the NOI conference delegation was a family and our togetherness was constantly remarked upon by those within and hotel staff. Even more so, was the emphasis on nevus families, or as one nevus mum calls it, "the support people of a person with nevi". Perhaps the source of such high emotion for me was constant reflection on my "support people" and their absence at the conference. I felt guilty that I hadn't managed to take my mother with me, especially when offering support to a 22 year old mother of a nevus baby, who could have gained so much from a word with my extraordinary mother. As so many of us wear full-length swim-suits, I was admiring of a swimsuit exchange set up for the children, but terribly upset when I thought of my craftsman father, sitting at his sewing machine years ago, sewing swimsuits from yards of lycra, oblivious to other nevus fathers the world over, feeling: "you can't punch every bastard who says 'why don't you wash your kid's face'"*. It was also so much about the siblings, who play second fiddle to the doctors' appointments and the constant shopping for suitable clothing and the "you make sure your sister puts on her sunscreen" and the "are you as brave as your sister, then?". They get together in the pool and share their frustrations and basically, from an early age, know that they're not alone. None of us are alone.
*Matt Luke - an accomplished baseballer with a facial nevus was a keynote speaker at the conference. He presented a film of his family being interviewed for US television remarking upon his success despite (because of) his nevus. His father made the remark about punching bastards and when I met him I told him our (late) fathers were quite similar...