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Worry a Day: What’s in a name? We need a new name for cluster headaches September 30, 2009

Posted by lizrosenberg in Uncategorized.

Trigeminal cluster headaches are hideous. Ask anyone who’s ever had one. Go to a site like Clustrbusters, just google the words. It’s pretty terrifying.

Since last October I’ve been suffering from these — whatever they are. I’ve been to at least twelve doctors and two hospitals. It’s easily misdiagnosed– as a brain tumor, as MS, s seizures, as trigeminal neuralgia, as migraines. In my case it feels like someone is shooting burning arrows into my head, face and neck, using electrical voltage. If I don’t do anything to stop it (in my case, some medicines help a litle, including verapimil, klonopin, B12, but mostly, exercise in fresh air) I get dizzy, and start to see purple flashes.

The pain is comparable only to labor. It’s all-consuming, it takes your mind away. It lasts anywhere from 20 minutes–if you are lucky and intervene in time– to a few hours. It feels almost mythic, like you offended the gods and they now are punishing you. When it’s over, like labor, you almost forget it ever happened. You can’t quite remember what the pain feels like till the next attack. Then it’s nauseatingly familiar. It responds to no pain killers. Even medicines that work on migraines don’t work on most cluster headaches.

The other nasty fact about clusters is they are so individual to each person. One person might get dizzy. Another might throw up. Some always have it on one side of the body. Some people feel it first in their gut. others get what they call “shadows” in the head. There are dozens of possible treatments. Most of us try several before we find anything that works.

But I am a word person. So one of the things that troubles me most is the lack of language to describe the overwhelming, all-consumingly powerful experience of these events. It feels more like a seizure than a headache. It  feels like you’re dying, like your organs are shutting down. What’s more, in the midst of one, out walking it off at two or three a.m. marching through snow, or sleeping in my car because I can’t bear to breathe in stuffy air or have the people I love watch me in agony– I think, if someone came along right now with a gun and threatened me, I’d probably say, Go ahead and shoot. So we need a name that at least suggests what this feels like.

The other contender– Horton’s Disease– is worse. I picture that adorable Seuss elephant sitting on an egg or hearing a Who. How bad can THAT be? We need a name that sounds like Voldemorte’s Syndrome. Crutiato would be ok. Cluster of course leads one to think of cluster f-cked but that it not printable, and it would be embarrassing, for instance, coming to a concert hall and explaining, I have to sit near the door in case I get cluster f-cked. I have found it easier to say I get seizures and may need to suddenly leave.

I’m throwing the floor open to suggestions. But cluster headaches sounds like a bouquet. It sounds like, at worst, a handful of used tissues. It doesn’t sound like the mysterious, often incurable, hard-to-fathom torture that it is. It only affects a tiny portion of the population. We are the tortured elite. But we deserve a name, anyway, that strikes fear into the listener. Those of us who survive these attacks, sometimes night after night, sometimes 10 or 12 a day for weeks on end, are anything but wimps. If someone asks what’s wrong with me, I’d like them to gasp a little. What they hear instead is “I get a little bunch of headaches.”

I’m hoping someone will come up with a name the medical establishment is willing to use– something we can spell, and pronounce, something accurate and ominous. Any suggestions?


Worry a Day: Why am I agreeing with Republicans? September 25, 2009

Posted by lizrosenberg in Uncategorized.

Ok, so let me be honest. Any time I find myself agreeing with Republicans, I worry.

But let’s look at a recent newspaper article about what’s going on in New York State, my home state. (For my worry over the demise of newspapers, see earlier blog .) “The state’s highest court agreed Thursday ro expedite a hearing on whether Gov. David Patterson can legally appoint a lieutenant governor to fill the vacant position.”He wants to appoint Richard Ravitch, a 76 year old who headed the transit authority in NYC, and unsuccessfully tried to broker a deal for major league baseball when the ball players went on strike.

It goes on to say “Senate Republicans have contested the appointment in coiurt and so far judges have ruled against the Democratic governor.”

Let’s back up a minute. Governor Spitzer was thrown out of office for apparently consorting with prostitutes and taking them illegally across state lines. To me, any politician’s private life is private– even when anything but admirable. However, in Spitzer’s case he literally crossed a line. So we ended up stuck with David Paterson.

I didn’t vote for the guy to be my governor. Nobody did. We voted him in as lieutenant governor, which frankly, I spend as much time thinking about as I do  — well it’s hard to think of something I spend less time thinking about. When it comes to Vice President of the US we’re  hammered over and over: it’s just a heartbeat away. That was why, for me, Sarah Palin was more tragic than comic. In history, we’ve all seen too many sad occasions where the VP had to step in and become president. So we do think about it.

I doubt most New Yorkers were thinking, Hmm, I wonder if David Paterson will be a good governor just in case the ever-upright Gov Spitzer turns out to have a thing for hookers. So Paterson fell into that position. So far it seems to me he’s been doing a fairly dismal job. Then again, no one elected him to do this job.

Now Patterson wants to appoint the next guy in line. This would mean New Yorkers would have both a governor AND a lieutenant governor they did not elect to their current positions.

It seems to me the further politics strays from the actual voice of the actual people, the worse off we are. So, no, not only do I think Gov Paterson should not appoint the next guy who could become governor, I  think that we should allow a reasonable period of time to pass, and then hold another gubernatorial election. I think in a democracy, it’s our country, and we should choose our leaders. When in doubt, vote again. We let go of that right back when Gore won the popular presidential election, and the result was an eight year mess.

So here I am, siding with the Republicans. One more little note “Paterson and his private attorneys, hired at taxpayers’ expense, have told the courts that…the governor needs to have the seat occupied.” What’s wrong with that sentence? Not only do we  have a governor we never elected, we get to pay for him to fight in court to appoint the next guy we wouldn’t elect.

NOTE: The court just voted to allow Patterson to make the appointment. And the fun just never stops in NY state.

Worry a Day: The world is too much with us, late & soon September 23, 2009

Posted by lizrosenberg in Uncategorized.

Here’s one of my favorite poems from Emily Dickinson. She was famous, of course, for wearing all white, and for locking herself in her room and not coming out even when guests arrived. Fellow poets have argued (persuasively) that far from craziness, this was the deepest kind of canniness on her part. In other words, she knew what she had to do to write her hundreds of peculiar absolutely original & sybil-like poems.

She once told one of her favorite cousins, about locking herself in: “One turn of the knob, Mattie and — freedom!” We think of freedom as unlocking the door and walking out. For Dickinson it was locking it, and staying in.

I’m nobody! Who are you?
Are you nobody, too?
Then there’s a pair of us–don’t tell!
They’d banish us, you know. How dreary to be somebody!
How public, like a frog
To tell your name the livelong day
To an admiring bog!

I noticed that if you change one letter at the end there (bog to blog)  it becomes depressingly up-to-date. (“To tell your name the livelong day/ to an admiring blog.)

One of the things I worry about it using up my words.