Blog Archives
My Kid Uses Chopsticks Better Than I Do
Seriously. My father used to tell me that the true test of someone’s ability to use chopsticks was being able to pick up peanuts with them. I wonder what he would think of my not quite three year old picking up Goldfish? See below for pictures. Read the rest of this entry
Celebrating the New Year – ABC-style
In my last post, K and I wished you all a hearty Gung Hay Fat Choy, in honor of the Chinese New Year. Well, today, J, K and I all went down to Chinatown to watch the Lion Dance festivities.
Neuro-what?
Last week, I talked about one aspect of the 180-lb tumor story. But besides the Flight, Fight or Fright conundrum, I was also struck by something else:
Of the 200+ articles I found on the web, my trusty Google News search suggests that only eight actually named NF as the cause of the tumor. 8. Out of more than 220. The rest merely referred to a “rare genetic disorder.” What’s more concerning is this: the CEO of the hospital where the operation took place told CNN that it was the same disease as that of “The Elephant Man.” Except the latest research suggests that Joseph Merrick, popularly known as “The Elephant Man,” is suspected of having Proteus Syndrome – a completely unrelated disease. If the medical community doesn’t even understand NF, and the press doesn’t report on it when provided an opportunity to educate, it’s no wonder that so few people have ever heard of the condition.
Keeping Perspective: Flight, Fright or Fight
For you news junkies out there, you may have heard about the 180-lb tumor that was removed from a 32-year-old Vietnamese man, Nguyen Duy Hai, in Ho Chi Minh City. If you saw it, you probably had an “oh my god,” “gross,” “wow that’s incredible” or a “can you imagine?” moment. I’ve had those moments too. I’m embarrassed to admit that I’ve also had the “I’m so glad it isn’t me” reaction. I think all these reactions are perfectly normal. It’s one way that we remind ourselves that despite all our complaints, there are still many, many people who have it worse than we do in some way, shape or form.
But for me, this story was an unpleasant reminder of what could happen to my little girl. Just six short weeks ago, I talked about the struggle for calm in the face of my daughter’s neurofibromatosis (NF type 1). Because it turns out that this Vietnamese man also has NF1.





