First, I've thought about the future of this blog. I've thought about pulling a Costanza and "leaving on a high note" now that my treatment is over and I am cancer-free (ostensibly, for the first time in my life). What do I blog about now?
I am not as clever, witty and skilled as some of the uber-mommy bloggers, and at this point, because of the way this blog started, I don't think I can resort to blogging around pictures of my kid spitting out vegetables-entertaining as that may be. Besides, that's what Facebook is for.
But, the more I thought about it, I realized that I might as well continue to do this as long as it's useful and enjoyable for me. That's the reason why I started this blog, after all. Besides, I realized that this is of a new chapter of my life and it might present its own interesting things to write about. And if they're not interesting, well, I apologize in advance.
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So I've also been thinking about this interesting video someone on the listserv sent around which is a speech made by the founder of the Chordoma Foundation. If you have about twenty minutes, it's worth a look, but I am too inept to get the link up at the moment in a reasonable timeframe. Email me and I'll send it.
What's interesting to me is that he refers to the industry I work in, academic publishing, and how the current structure of academia and the publishing industry impedes information sharing which stalls the development of treatments and cures for diseases. And here I thought I worked for a pretty noble industry. But in effect, I may be a cog in a machine that is stalling progress on a cure for my own disease!
And then I read this, which also has a Chordoma shout-out.
And I guess I am pretty naive, but this was all news to me. And shocking. I thought that if researchers thought they had a promising treatment or cure for something that might save people's LIVES, someone would roll out the red carpet and pay them a lot of money and nominate them for a Nobel or something. But instead, the system appears to be set up in such a way as to discourage development. So, many smart people are coming up with good ideas for....nothing? OK, maybe publication and tenure in some cases, but those things don't quite compare to a legacy, or saving a child's life, do they?
So that, and Josh's inspiring talk, and the stories I've read and heard about other Chordoma patients just make me feel like I have to do something, even if it's a very small, somewhat insignificant something.
More thoughts on that soon.
I'm not sure about the academic publishing world "Man" keeping down the little guy. I think when one is involved in an industry, or sport or organization, it becomes all encompassing and people lose perspective on how much influence, positively or negatively, that organization has on other things. Does academic publishing really have as much of an affect as say the pharmaceutical industry? I would think the profit return on a cancer drug versus another erectile dysfunction (English Spelling) drug would not be as profitable so it doesn't get funded.
ReplyDeleteAlso, I think print publishing does not have the influence that it once did.
Anyway, I think that you work for a good organization and whatever flaws it might have, they are certainly less detrimental comparitively to other organizations. I'll let you know if I am feeling oppressed by you anytime in the future.
Hi: I am a fellow Chordoma patient and was treated at MGH by Dr Liebsch in 2007. Please contact me if you want to share. I have a Chordoma Foundation Champion Page as well that I can send you to the link to...in any case glad you are doing well and done w/the treatments. Josh is doing an amazing job, as is Simone and I help out as much as possible with the CF. All my best, Sharon
ReplyDeleteNeal,
ReplyDeleteNo, not trying to say my company or publishing is doing anything wrong, really. I think it's just the way things have evolved over time in the academic/publishing/research realm. That Newsweek article was an eye-opener for me. But things are changing for the better in publishing as far as open access goes, so that's good news.
Sharon, thanks for your note!