The power of patients networking

Dave deBronkart learned that he had renal cancer in 2006. From his doctor and from many internet resources, he heard that his death was imminent. Then, he hooked into an internet network of renal cancer patients, where he learned about a scientific (but not well-known) treatment that offered him a chance.  He pursued the treatment and had a great result. He became an e-patient, a patient who became empowered because he acquired access to important data. Now, 4 years later, he gave the following TED talk, and you'll see that he's very much alive and kicking. I recent had a similar experience, though not in nearly as serious a situation as Dave's. I was diagnosed by two doctors with "tennis elbow." I don't play tennis, but I play the guitar, and I suspect that that strumming was the precipitating cause for me. About three months ago, before I noticed any problem, I assumed that tennis elbow was irritating, but that it quickly went away when you stopped engaging in the causative activity.   The two doctors I consulted told me otherwise. They said that tennis elbow lasted for as long as a year, or more, and that it can be disabling. They said that you simply take aspirin and rest it, that it is a long drawn out problem and that there is not much else you can do about it. I "confirmed" this first-hand, when I stopped playing the guitar for two months, but the condition did not get any better. I bought two types of arm wraps at the drug store and I wore one or the other for weeks. My arm remained extremely weak. For instance, I could not lift a heavy book with the affected arm. When someone shook my hand, I felt excruciating pain at the elbow. Like Dave, I refused to stop searching for a better answer. I took to the internet, and about three weeks ago I found what appears to be a cure. It's a rubber bar that costs $15: [caption id="attachment_18575" align="aligncenter" width="300" caption="Thera-Band FlexBar"][/caption] I've been doing the simple exercises for two weeks (click this link and watch the short video demonstrating the exercise); it's amazingly simple and it takes less than 10 minutes per day. My pain has decreased by 95% and my strength has probably tripled, even though I'm taking only one over-the-counter Naproxen per day. This is a scientifically-designed and tested remedy, which suits me fine.   In fact, the device and exercise was being tested in a double-blind study that was so incredibly successful that the experimenters stopped the study in mid-stream and gave all of the patients rubber bars.  It pains me to think of all of the victims of "tennis elbow" out there who are suffering with the pain needlessly because their doctors are telling them what my doctors told me. I have no interest in any form of voodoo, such as homeopathic medicine, and you'll hear a lot about these unscientific treatments on the Internet.  This post is not about unproven and unscientific remedies.  What you heard from Dave (and from me) is that there are often effective and proven remedies out there, and that you will not learn about from your doctor.  I agree with the main point made by Dave, that we need better methods for sharing information regarding successful treatments that are already out there.  E-patients, unite!

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Ira Glass and the taste-ability gap.

Creation is daunting. Partly because the drive to create is always rooted in admiration for others' creations. What writer hasn't struggled against inadvertently ghost-writing their favorite author? What aspiring auteur, poet, or painter doesn't begin with work that is heartrendingly derivative of others' better attempts? Or worse-- what creative person hasn't struggled to make something 'great', something 'great' as the art they adore, only to find they can't quite compete? And who doesn't infer from these failings that maybe they weren't cut out to be a creative type after all? Ira Glass, creator and longtime host of This American Life, says there's a very simple reason for the head-bashing frustrations of early creative production. Simply put: if you are interested in creating something, it's probably because you have immaculate taste. Taste that outpaces your own ability. At least, at first. Glass says:

“What nobody tells people who are beginners — and I really wish someone had told this to me . . . is that all of us who do creative work, we get into it because we have good taste. But there is this gap. For the first couple years you make stuff, and it’s just not that good. It’s trying to be good, it has potential, but it’s not. But your taste, the thing that got you into the game, is still killer. And your taste is why your work disappoints you. A lot of people never get past this phase. They quit. Most people I know who do interesting, creative work went through years of this. We know our work doesn’t have this special thing that we want it to have. We all go through this. And if you are just starting out or you are still in this phase, you gotta know it’s normal and the most important thing you can do is do a lot of work. Put yourself on a deadline so that every week you will finish one story. It is only by going through a volume of work that you will close that gap, and your work will be as good as your ambitions. And I took longer to figure out how to do this than anyone I’ve ever met. It’s gonna take awhile. It’s normal to take awhile. You’ve just gotta fight your way through.”
I found this snippet in a video interview with Glass (below) a year or two ago, and I find it incredibly inspiring. Glass' view of creativity suggests that even if you lack innate, immediate creative ability, you are not a lost cause-- and that, in fact, a little creative self-loathing may be a sign of good aesthetic instincts. It also suggests there is a solution to the problem of making unsatisfying dreck: just keep making more. And more. And more. This wisdom is especially powerful in context. As a radio producer, Glass was a very late bloomer. He worked in public radio for twenty years before conceiving of This American Life; he readily admits (in another portion of his interview, and on his program) that the first seven years of his radio work was deeply underwhelming and often poorly-paced.  He'll readily admit that his early stories were bad, and that even he knew they were bad, and that this tormented him. Only through tireless efforts and the cultivation of exceptional taste was he able to develop and bloom. And he bloomed big:  This American Life is one of the most widely-heard public radio programs ever, with 1.7 million weekly listeners, and has topped the Itunes podcast chart continuously for years. If Ira had given up after a few years of shoddy radio stories, we'd all have missed out on TAL's  hundreds of hours of thoughtful, poignant, high-quality public radio. I found this interview snippet a little over a year ago, and Glass' words of experience have galvanized me ever since. Whenever I write something that strikes me as uninspiring or derivative dreck, I reassure myself it's a matter of taste, and time. And more time.

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“Retard” and other disability-insults.

The word "retard" possessed dual meanings for a long time. First used as a term for intellectual disability in 1788, the word took on a pejorative sense in the 1970s. For thirty years the two meanings curiously co-existed. Universities had "Mental Retardation and Developmental Disability" Departments and students who drunkenly called one another 'retards' for lobbing bad beer-pong balls, and the two existed in tandem. But once medical and social service experts finally disavowed the word 'retard', it vanished from official usage with amazing swiftness. The Special Olympics ceased using the 'r-word' in 2004, initiating the trend. In 2006, the (former) American Association of Mental Retardation changed its name to the American Association on Intellectual and Developmental Disabilities. By 2008, Special Olympics turned the abolishment of 'retard' into a full-time effort and launched R-word.org. The site protested the derogatory use of 'retard' (including a protest campaign against the 2008 film Tropic Thunder, which featured a lengthy discussion on 'retard' roles in film). Special Olympics and R-word.org also pushed for their fellow disability-service organizations to drop the term. In 2010, 'retard' was legally banished from the professional lexicon. On October 5 of last year, Obama signed "Rosa's Law", which banned the use of "retard" in all federal health, education, and labor policy. "Intellectual disability" and "developmental disability" became the approved nomenclature. Non-federal organizations followed hastily: in Ohio, Google directs you to the "Department of Mental Retardation and Developmental Disabilities", but the website itself has already been scrubbed of the R-word(even if the url still has the dreaded 'r' in it). It's official: 'retard' has no place in formal usage. Once a medical term for someone with an intellectual disability, it lives now only as an insult. One that means, roughly, unintelligent. Like moron, which began as medical terminology for one with a mental age of 8 to 12. Or imbecile, which meant 'a mental age of 6 to 9'.

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