Friday, October 16, 2009

Eh bien, petit Nicolas, j'ai une question!

J’ai lu avec beaucoup d’intérêt vos commentaires de ces dernières semaines. Je veux remercier chacun d’entre vous pour vos messages de soutien, et vous dire que j’interviendrai demain dans une interview à un grand quotidien national pour répondre aux questions du moment. Je vous invite à lire cet entretien, et à me faire part de vos réactions. Merci encore pour votre soutien précieux, continuons à agir ensemble.

-- Nicolas Sarkozy, tiré de sa page Facebook, le 15 octobre 2009

Sais pas pourquoi je pense au calife, à Iznogoud... plutôt que de continuer ce jeu de "petit Nicolas" Sarkozy, jeu tellement original et intelligent.

Okay, okay, peut-être que j'aimerais jouer le rôle du professor Dubon, "le Bouillon." Mon cher réalisateur, ne serais-je pas le choix parfait? Allô? Allô?

What? Oh... right.

Aujourd'hui: INTERVIEW EXCLUSIF DU PRESIDENT DE LA REPUBLIQUE DANS LE FIGARO. (ou: Le petit Nicolas a des ennuis...)

Je ne l'ai pas encore lu, mais j'attends avec impatience l'arrivée de ce moment... éclairant, illuminatif* (insérez-y le synonym de votre choix).

* Qui illumine. Il n'est usité qu'en termes de Dévotion mystique. La vie illuminative.

(une vie telle que la sienne? la mienne, quoi?!?)

illustration credit

Wednesday, October 14, 2009

Prohibit Lifetime Caps

This call to action by NORD (National Organization for Rare Disorders) was forwarded by Jim Broatch of RSDSA. Normally, I wouldn't give it much thought -- I doubt if it would even register as an important issue with me until a few years ago.

However, when I was shifted from one group to another in my coverage with BCBS, the company and I went back and forth, and then, round and round, over the issue of lifetime coverage. The two handbooks they sent me clearly said I was capped at $5 million. BCBS claimed that I had received -- not one, but TWO booklets that somehow contained misprints, since the true cap was $2 million.

And now... it doesn't matter at all, because they proceeded to price me out of coverage -- oh, when was it? I remember! October 1, 2009, two short weeks ago.

In case you think that $2 million was generous on the part of BCBS, think about this: in 10 months -- from August 2008 to June 2009 -- I incurred $500,000 in medical expenses. Granted, that was an unusually crappy time. But, the point is that it happens.

So give this a read, and please consider acting on the suggestions from NORD:

Please Help Us Educate Members of Congress About Lifetime Insurance Caps!
National Organization for Rare Disorders

While NORD has been excited to see the elimination of lifetime caps included in each health reform proposal currently being considered by Congress, the old adage "the devil is in the details" still rings true. Although all of the bills eliminate lifetime caps, in some proposals the provision will be delayed and in others there is no requirement for existing plans. We need you to write your members of Congress to ask for lifetime caps to be prohibited immediately.

The way the bills are currently drafted would result in many people potentially facing lifetime caps, even after health reform is enacted. Individuals with employer-sponsored insurance could face caps until 2018 or possibly indefinitely if their insurance coverage does not change. This is unacceptable. NORD has been advocating for the immediate elimination of lifetime caps in both new and existing plans in all insurance markets.

Congressional leaders are currently working to combine the various health reform bills into House and Senate versions before they can be voted on by each chamber. Now is the time for everyone who wants lifetime caps to be eliminated to contact Congress.

Please e-mail your members of Congress TODAY to ask that lifetime caps be eliminated immediately. Sample letters have been provided (see below) that you can personalize with information about how your family or your members are affected by insurance problems, the annual cost of care and, especially, lifetime caps. If you have hit a lifetime cap, please be sure to include that as well.

To find the e-mail addresses of your Senators and Representative go to:

U.S. House of Representatives
U.S. Senate

Sample Senate Letter

Sample House of Representatives Letter

Thank you for your continued support. In this climate of change, it's VERY important for all of us in the rare disease community to make our voices heard on issues related to health reform.

This E-alert was made possible by the contribution of the members of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA). To learn more about becoming a member of RSDSA, please click here.

CRPS / RSD: Transactionally Speaking

People who have CRPS/RSD will generally agree that this is a difficult time of year.

There are things about this disease that fascinate me:

After about six months, my right leg, the first and most afflicted limb, developed what can only be called an indentation -- at the approximate mid-point between knee and ankle. Do not think that this is a tiny little wrinkle of some sort, oh no... Do not minimize whatever your idea of indentation might be!

Be rich and generous as you imagine the sharp and sudden narrowing to the leg -- and at such a bizarre spot, too.

Are you with me? Well, hang on, lovey. Over a year later, CRPS/RSD did its usual little trick of "spreading." I am in intimate agreement with my smarty-panted neurologist of the hawaiian-shirt-and-birkenstock penchant, that the term "spread" is more scientistic than accurate. Unlike him, though, I didn't go to med school and "spread" seems at least correctly descriptive. It's a pet peeve with him, much as x, y, and z are peeving to me.

What? You want to know? Okay. Let me think. I will gift you with two peeves, if you will, in turn, leave me one of yours in the comment area.

Top of the peeve list is definitely "Yes, but..." people. I spent an exhaustive couple of hours recently, trying to assist a friend who is in a pretty severe situation, financially. The strait she's in is one I am able to address due to a stint of doing case management with homeless men (under the guidance of someone who actually knew what he was doing, of course!). I say "case management" in order to save space and breath -- we tried to gently shepherd folks into permanent housing, which meant addressing the problems which had pushed them into homelessness to begin with.

My friend exhibits a penchant for asking for help and then refuting every offer/suggestion with haphazard "yes, but..." opposition. It's a classic of "games people play" fame -- the book that introduced many of us to transactional analysis. Well, my recent conversations with my soon-to-be-homeless friend could have been transcribed verbatim and published as exempla to the "yes but" game.

Games People Play: The Psychology of Human Relationships ... hovered on the best-seller lists for a couple of years.

Eric Berne ... provides the general reader with a field guide to "games," familiar patterns of interaction that rely on plausible cover stories to conceal ulterior, often unconscious, motives. In the game of "Why Don't You -- Yes But," players begin by bemoaning a problem and inviting others to suggest solutions, all of which will be shot down. The real object, Berne writes, is "to demonstrate that no one can give them an acceptable suggestion."

Cataloging such games necessarily fosters an ironic, if not outright jaundiced, view of human nature, evident in Berne's taxonomy; game titles include "Let's You and Him Fight" and "Now I've Got You, You Son of a Bitch." (The player of the latter game secretly welcomes being wronged: "Ever since early childhood he had looked for similar injustices, received them with delight and exploited them with the same vigor.")

Over at Pratie Place Blog, I thoroughly enjoyed her exposition of a "Yes but" relationship she had with an elderly friend. Shoot, I enjoy a good "Yes but" story as much as the next person... just stop me, please, from participating. It's important to recognize my role in the game, because it's not a form of entertainment amenable to solitary play. I am The Tireless Helper, the Ping Pong Ball of Ignored Suggestion. Anyway, here is Melinama's experience with the game:

This game is played skillfully by many old folks, which is why I stopped volunteering at a local retirement home and decided to work with children instead.

Mrs. Schenktman, an extremely able woman, a former university professor and craftsperson, had decided it was now time for her to be truly retired - i.e. to do nothing but read, go to meals, and worry. Since she was still in possession of all her marbles, well, she was very bored. Her considerable grey matter had to be occupied with something so she turned to complaining.

The food was bad;

The residents were stupid;

The management was uncaring;

Her closet was too crowded.

I couldn't do anything about the first three items, but I thought I could make some headway on #4. I opened the closet door and we embarked on a months-long project of my making "constructive suggestions" about what could be done with the things in her closet and her shooting my ideas down.

The biggest space hog was a dismantled floor loom. Since Mrs. Schenktman had a bit of arthritis she had given up this hobby.

The loom was of no use to her only son, a 65-year old "artist" who had been living on disability insurance all his life because he was "unable to work." This quotation-mark skepticism stems from his being able to do a great many difficult - but pleasurable - things - it was only work that was beyond him. Well, and laundry.

"I keep having to buy sheets for my son and mailing them to him in California."
"Why don't you ask him to wash the ones he has, instead?"
"Yes, but I don't think he will."

The floor loom was quite the white elephant. Or, hmm, her bête noir.

"I don't want it in there any more."
"So why don't I sell it for you?"
"That seems too complicated."
"I'll take care of everything."
"But I don't want strangers in my apartment looking at it."

After several weeks of these debates she decided selling it was a good idea. I advertised the loom and found a buyer.

When the person came to pick it up, Mrs. Schenktman had changed her mind and I had to send the buyer away empty handed. The complaints began anew. "My closet is too crowded..."

I was a patsy for this game because I really wanted to help.

Why am I a patsy for this game? Sure, I really want to help... Still, I think my complicity is more... complex. On verra. I'll think on it.

I am already feeling the pain of turning away, in self-protection, when she plays her trump cards -- the children. I don't care about myself. My concern is for my daughter's three sons. They don't deserve to be homeless. She has already begun this End Game, and notes from time to time, luxuriously: "I wish someone would save us."

She's counting on it.
Gee, why is my stomach in a knot?

Let me rummage around and find a less painful second pet peeve. Unfortunately, most of what comes to mind is not technically in "pet" form -- they are pure peeves. Like promising to do something and then not doing it. Like failing to clean the dryer lint trap. That kind of monotony. To become "pet" is to be seen through the peculiarity of my lens.

Shoot. All that comes to mind is something rather sad.

I cannot abide it when The Fredster blocks my path to the bedroom door -- blocks the path my wheelchair follows in order to exit that abode. It has to do with the period of severe wackiness the first few weeks I was home after being in the hospital a good while back in 2002. We believe I have PTSD -- sometimes we believe it, I should say. It seems an insult to all those people who experienced real terror, hardship, and loss for me to make the claim.

I was bedbound for at least six more weeks after being discharged. It took forever, it seemed, before I was able to even sit on the side of the bed.

I began to fear fire, and often woke Fred thinking that I saw suggestions of flames or a weak glow reflected in mirrors and windows. When he was with me, I managed. Should he have to go out, or should he crash on the living room sofa instead of in bed (we had our bed plus a hospital bed in the bedroom -- it was crowded and uncomfortable), I panicked, unable to move.

The citation of that fearful time remains in the form of irritation should Fred place anything in my path that might, however remotely, trip up an effort to flee.

There, that is putting a real "pet" on that peeve.

It's fun, the things popping into my brain right now -- people not washing the coffee pot after the final brew... a whole bunch of similar attitudes all relating to housekeeping!

And the teacherly things -- ask any Spanish teacher, for instance, and you might well hear, after a perfunctory sigh: "Me llamo es..." As a French language teacher, I had a vast array of pet peeves, all of which eventually achieved the status of "wise sayings." You know, like: Accents are part of the spelling of a word! Adjectives agree in gender and number with the nouns they modify! There's only one conjugated verb per subject! That kind of nonsense. Please note -- I never had to employ such idiocies when I was allowed to teach in the target language. It was only when I did my last few years of teaching at the high school level that these pearls of wisdom began to sprout from my tongue.

Occasionally, I think I understand why my neurologist gets so very annoyed when I employ the verb "to spread" when referencing an expansion of CRPS/RSD into body regions heretofore unafflicted. I am taking liberties with His Grammar. I am conferring verb-boss status, the nominal, to something that might more properly be the smallest extension of a prepositional phrase.

I was telling you about some of the bizarreries of CRPS/RSD, about the "dents" in my legs, about how the first dent appeared on the right leg. Well, a good year later, the disease spread to the left leg, and within a week of that event, I woke to find an identical dent there -- identical in location, identical in depth, width -- identical! This has never changed. I have asked every doctor who exhibited even the most remote bit of experience with CRPS -- I show my legs, I ask for an explanation. Not one doctor has dared to venture an idea.

Later, I would read that for many years, doctors accused their CRPS/RSD patients of tying up their legs, or using rubber bands to cause constrictions that resulted in these things that I call "dents."

After I read these things, I changed.

I began to say, not "Can you explain this phenomenon to me?" but "I know you probably don't think it's real, though I swear to you that it is, but would you happen to know why this happens, and what can be done about it?" The whole process took on a feeling of desperate nastiness.

And it was no one's fault, except perhaps that of the disease.

I was going to go on and regale you with tales of patriotic feet, alternating between red, white, and blue... of contests of "guess that skin temperature!" and so on.

But I still have Grammar Quibbles haranguing me from one brain lobe or other, as it hits me that all of this is about AGENCY, about CRPS/RSD running my sentences, parsing my intent. Look, look, I am saying -- it does this! It does that! It authors my verbs, it drives the narrative.

It is more sentient than I am, it has sucked that much feeling from me, making a poor trade in pain. An in-kind donation, not-for-profit.

I am it's pet peeve, and it, mine.

Believe it or not, I argue frequently against the very common practice of calling this disease "a Monster." People separated by vast time and vast space have come up with this same term, over and over. There is an inescapable truth to such things, yet I resist.

To every persuasive argument for its incarnation as a being, as an actor in this drama, I wriggle and squirm, and I offer yes, but, yes, but, yes but -- until I am nothing but a tired transactional term, barely an adverb, just one part of a phrase.

Do you think there is some Hail Mary Pass of Unification possible, here at the end of this puddled, muddled blog entry? Are you thinking that life at Marlinspike Hall, deep, deep in the Tête de Hergé, is not sounding pertickularly atttttractive right now? Well, relax. All things, all things must pass away. So enjoy a few linguistic pet peeves, as found in the comment section of The Language Guy's post of that same title:

Glen Whitman said...
I'm similarly annoyed by the use of "literally" to mean "figuratively." Not only does "figuratively" already cover the intended meaning, but we are also left without a word that unambiguously means (what we used to know was meant by) "literally."

2:44 PM

kirstin said...
The misuse of "literally" drives me crazy too (I'm someone who IS judgemental, by the way, of the way people misuse language). May I also offer up the misuse of "evacuate"; people can evacuate a building but if they themselves are evacuated that would be quite an unsightly mess. My main pet peeve of late, however, is the disappearance of "fewer" [for countable nouns] in favor of the often incorrect "less" [which should only be used for uncountable nouns]. This happens constantly and is commonplace on news programs no fewer, uh, I mean "no less".

3:49 AM

Language Guy said...
As a linguist, I am supposed not to object to langauge changes but as Glen notes, we lose the distinction between "literally" and "figuratively." I suspect that what people are sometimes doing here is using "literally" for emphasis. If what is being said to be literally true is obviously not literally true, then there is no harm. It is sort of like the dialectal, "I almost died when he told me that."

8:22 AM

Brian Miller said...
Here's a pet peeve of mine:

I've noticed that people use the word 'allude' when they really mean 'mention,' or, 'say.' I was watching a baseball game the other day when the announcer said, 'As I alluded to earlier, he is beating the Yankees by getting first pitch strikes.' To allude to something means to refer to something indirectly. What he should have said is. 'As I mentioned earlier...' or 'As I said earlier...' In fact, like many sports broadcasters, he repeated this observation numerous times before making the above statement. My guess as to why he said 'alluded to' rather than, 'As I've been saying...' is that he wants to sound erudite and doesn't want to admit that he sounds like a broken record.

The problem here is that millions of Americans watch baseball games and pick up this kind of mangling of the language and go about their daily lives 'alluding' to things, instead of 'saying' things!