I love the following things: The New Yorker, The NY Times Magazine and... my family? I guess? Just kidding. Anyway, I love the New Yorker and the NY Times Magazine. Two good things about New York, right there.
Although, the NY Times Magazine is pushing it with me. They've recently redesigned and they've decided to jump on the "social media" bandwagon. Meaning that nearly every single (every.single.) article has something to do with the internet. Or smart phones. Or whatever.
Case in point, my beloved Diagnosis feature. This time, and this is new, they posted the symptoms of this little girl who was losing her hair on-line on their blog and asked the readers of the blog to play along and try to diagnose her. Whatever. Fine. But then they publish, in the magazine, about six people's suggestions, ranging from stupid and annoying to correct, as it turns out.
Another lame thing is that they've taken an essay and made it into a flow chart. Now, don't get me wrong - I love charts. I really really do. Just not unnecessary ones. There was nothing to be gained from it being in the form of a flow chart. Nothing. It was just a gimmick.
OK, that's my rant. I don't like it. But that's not what I wanted to write to you about. I wanted to write about the post-diagnosis analysis written by Lisa Sanders, M.D. (the author of most of the article). On a side note, I wonder if she's down with this new format.
It turns out (spoiler alert!) that the girl and, surprisingly to them, her sister have a chronic, inherited, debilitating and potentially degenerative muscle disease. But she and her family only noticed the hair loss of the one girl, not the weakness in both that is a major feature of this disease. And people wondered how this could be.
I'll quote Dr. Sanders here in this little excerpt that I like a lot. A lot. And keep in mind that I like it a lot, even though, there's the whole social media garbage mixed in. Cause that means I like it a whole lot. OK.
"Sarah of Washington wrote: "I'm really confused by the fact that these young women didn't realize they were weak even though one couldn't do more than one sit-up and the other couldn't lift a gallon of milk." Many readers felt equally bewildered. But Anon from New York wrote about the perceptions of those with chronic diseases: "When you live with your own 'normal' (which may be wholly abnormal), you take for granted everyone else feels that way, too.... If it is all you have ever known, you can see why it would be something a patient might not mention." For the parents, it would have taken an enormous leap to imagine that their seemingly healthy daughters could have something seriously wrong with them. Often, what we see in our children defines our understanding of normal. This family, like many who live with chronic diseases, have come to understand that there are at least two kinds of normal - one for them and one for everyone else."
Now, the reason I like this has nothing, really, to do with my MS. My situation is completely different - I was "normal," physically, at least, and then in the last year that drastically changed. I suppose, though, that this is my new normal - my new energy level. My new, 80 year old lady energy level. I should get cats.
No, I like this for the interesting idea it presents. I like it as a kind of recognition of a phenomenon. I'd say this more applies to the whole Southern-ish type living in a Northern state, as far as my situation is concerned. What was/is normal for me is completely not normal up here. It's kind of interesting.
I also like the idea of a family as a world unto itself. I never had that. We were always made to be aware of appearances and of fitting in. "Remember who you are and what you represent" was like a family motto. And while it didn't work out for the family in the Diagnosis article, I think it's nice to just move along in life like a little unit. Helping each other out within the group and not really worrying about anyone else. That's nice.
Alright. I went to the library yesterday and got a bunch of material for another post. So I'm excited. My local library has some good, really old books. Which is nice.
Next time a Phebe post. I promise.