The power of words really is something. Ted had a post the other day about the term "life challenging" being vauge, politically correct, and, as applied to AIDS, a useless sugar coating.
I have a few hot buttons...words that make my ears perk up and, if I don't then hear what I want to hear, make my blood pressure go up, too. AIDS is one of those words.
I'm not an activist by any stretch, and my role in the fight has been small. When I was in college I worked for a company that was administering some clinical trials and some research projects, including the creation of a database to track pediatric AIDS cases. When we did the data entry for those cases, it was depressing, because we thought each of those kids was going to die. Which of course they were, or are, but you know what I mean...they'd been infected, many of them by their very birth, by a deadly disease. But I remember sitting in the big auditorium at NIH one afternoon and hearing a researcher say that one day AIDS would be as manageable as asthma or diabetes.
I changed my career path when I was in college. When I started, I wanted to be a reporter and cover politics. I was Miss Inside-the-Beltway. Have you seen how often I talk about politics in this blog? My priorities were totally rearranged by that job. It wouldn't be totally a stretch to say that my priorities were rearranged by that afternoon at NIH.
I work in public health and I participate in health-related fundraisers. I also volunteer at a place that started as an HIV/AIDS service organization, but they have expanded their mission to also serve clients with "other life-challenging illnesses." That was the first time I'd heard the phrase "life challenging," when they started including cancer patients as clients.
I think it's a good phrase. On one level, it can describe the illness itself: disease vs. life. You often hear martial analogies in medical descriptions...viruses invade, immune systems defend, antineoplastics attack. The disease challenges. On another level, thinking of life not as the biological function but as all the things you do in the course of the days going by, the effects of the disease make life a challenge. Can you work? Cook? Do the laundry? Get out of bed? That's where I prefer the term "life challenging" to "life threatening"...the former recognizes that what was once routine is now a challenge.
I think the words "life challenging" are powerful.
Thirty years ago, the idea that someone could fight off multiple cancers would have seemed like fantasy. Twenty years ago, to call AIDS a "life-challenging illness" would have seemed like a ridiculous euphamism. Today "cancer" is no longer whispered because it is seen as a survivable disease and HIV/AIDS is manageable (here in the land of medical insurance and drug cocktails...the situation in other parts of the world is a subject for another day). Maybe the phrase "life challenging" can be applied to other things as well, but it is not just a sugar coating to make dying people feel better.
Posted by Nic at April 8, 2005 01:40 PMJust for clarification...while AIDS is a pandemic, a holocaust in other parts of the world, it's still no cocktail party here. I run an AIDS prevention program, and the reality is that kids thinking this is just a "chronic illness" (which I hear a lot) is quite dangerous. The AIDS medications don't last forever (people get resistant to them within 12-24 months) and it's getting more and more common for people to die from the side effects of the medications than AIDS-related illnesses.
People used to die within a year or two. Now it's ten or fifteen. For someone infected at the age of 20, that's 30 or 45 years old. A life cut way too unnecessarily short.
Thanks for letting me rant :-)
{steps off soapbox}
Holy... the life expectancy is only ten to fifteen years? Is that post-exposure or diagnosis? Either way...I didn't realize it was that bad. My God.
I obviously need to catch up on my reading. I'm sorry to mis-represent things, ZC. Thank you for letting me know...my soapbox is your soapbox, especially when I have my facts wrong.
Posted by: nic at April 10, 2005 04:56 PMAnd I'm even more surprised. I'd have never thought life expectancy was as much as 10 years. Obviously great strides have been made, but there's so much more to go.
Posted by: Ted at April 12, 2005 07:46 AM