Check out this post about how a blogger/journalist was treated at the Brain Injury 10th Annual Neuroscience Conference. Read it, and then come back.
It just boggles the mind. Who’s the brain-damaged one in this picture? Surely, not the blogger, to all appearances.
In all fairness, I have no idea what prompted the response like that, and I’m not sure what was behind all the hostility, but really… I just don’t get it.
This highlights for me one of the current tragic travesties of brain injury survival and recovery — the folks who profess to help us, live off in a walled city of sorts, doling out shreds of carefully guarded and dispensed information in such small pieces… and then they issue disclaimers about “everybody’s brain is different, so you can’t really listen to this piece of information”.
It’s maddening. And only rarely does someone like me come across someone like my neuropsych, who is actually committed to the relief of human suffering. Imagine that — someone in the health-care industry… who cares. And not only cares, but does something about it.
Can I tell you, if I could, I would nominate my neuropsych for sainthood, a Nobel Prize, a Guggenheim Fellowship, and a truckload of cash from the Bill and Melinda Gates Foundation, so they can continue their excellent work — and possibly train others to do like them. I am extraordinarily blessed to have the help of someone who is intelligent, competent, compassionate, and not sitting astride their cache of information with an AK-47 in hand to ward off any “info pilferers”.
People are suffering. Thousands, even millions are impacted, both in terms of being injured and being friends/colleagues/loved-ones of TBI survivors. Who in their right mind and right conscience can withhold lifesaving information and advances from people whose very injury makes it next to impossible for them to even understand that they have been injured?! Where is the justice, the sense, the sanity, the humanity?
It boggles the mind.
So, let’s all blog about it.
Thanks, rewiringangel, for writing and publishing about this.
5 thoughts on “I guess we’ll have to find TBI information elsewhere”
“It is the demand of the universe for the birth of the ultrahuman. It is the rising of a new form of psychic energy in which the very depth of love within you is combined with what is most essential in the flowing of the cosmic stream. It is Love.”
Teilhard deChardin, S.J. (1881-1955)
I’ll second that.
I registered for both the hotel and the conference on the 17th. I also sent a letter in an email to the conference about my media creds and the intent to support their work. The BIA computers did not somehow ‘get’ my reg. though the hotel did and gave me a media rate for the two days. I feel that because the computers and registration process the BIA use they did not know of my arrival and the surprise showed the two people, who treated me as a criminal, true colors. I got a cogent comment from a friend in my Google Wave group, that:
This really sucks that it didn’t work out for you. You were looking forward to the information you would have received from the conference. And I’m sure a lot of people (least of which is not the BIA) will lose out because you were not able to attend and report on the event.
They may have had bad experience with media in the past. Or maybe they just don’t understand the range or expression that media can provide them with. Press releases only go so far. And there is so much that will never make it into a press release.
I think it’s a fine line folks walk, with regard to the press. Also, because the conference was geared towrads “Physicians, radiologists, registered nurses, case managers, attorneys, insurance adjusters, therapists, and researchers as well as MenorialCare Physician leaders” they might be painting themselves into a corner by playing to established “leaders” in the field.
Note the intended audience: the people who profess to serve us, but have a bad track record of under-serving us, if they make an attempt at all.
Your experience at the conference just highlights the gaping chasm between those who need help, and those who are in a position to offer it.
Either way, yes, it sucks.