Last night, between bites of Mirabel Plum Ice Cream and White Peach frozen yogurt with whipped cream and toasted almond crunch topping, I had the brilliant idea to begin taping my sons' constant, enervating* fights. I hoped that it might inspire them to desist, to maybe start talking about poets they love, scenes from Fellini movies or Bob Dylan lyrics.
They fought about what the series would be called.
* The word enervating has always intrigued me. It's always sounded like it should suggest excitement or restlessness, maybe not exactly energizing, but something similar. It actually means causing one to feel drained and lacking in energy. Waxing is another intriguing word to me, only as significant in relation to its opposite: waning. In any case, the boys would certainly not enjoy discussing this sort of thing with me -- the curiosity of great words -- but are rather inclined to spewing simple insults at one another, the occasional death wish and punch.
My friend Allison and I, melding our tiny little mother minds™.
People are crazy and times are strange
I’m locked in tight, I’m out of range
I used to care, but things have changed
Bob Dylan
You know my history with intimidating words. If you don't, please catch up by reading Part One and Part Two.
Today's lesson will be about the word Hegemony. Your instructor, though, will be my friend Allison, and your assignment is to read her blog post today. Here's the link:
Now click on the Bob Dylan link below and try to listen to the words as you read the rest of this post.
I know that's a lot of links, but as I did all the little cut and paste things, I thought to myself how supremely grateful I am for technology. I read a lot of yada yada about how disconnected we all are, how stupid our children are becoming, how hideous and depressing technology is, and it just makes me yawn. I think about the hours I spent alone in my apartment in New York City back in 1995 with my screaming, seizing baby and one paperback book titled Seizures and Epilepsy in Childhood, a book that had approximately three or four sentences devoted to Sophie's diagnosis. Those sentences declared a very, very bleak outlook for babies like Sophie, and while I clung to the hope then that she would be in the tiny percentage of children who would go on to "do well," I had absolutely no one with whom I could --- well --- meld my tiny little mother mind.™
Let me tell you something. The treatment for infantile spasms -- the disease that I looked up in that paperback book twenty years ago -- is almost exactly the same today as it was then. The first-line treatment is ACTH, a steroid injected intra-muscularly twice a day that wreaks havoc on the immune system, and in our case, caused Sophie to scream 22 out of 24 hours and to develop such a bad case of thrush (yeast growth all over and inside her mouth and genitals) that we had to discontinue it. Oh, and it didn't stop her seizures, so we began adding drugs (8 of them, before she was a year old). I assume the side effects of ACTH are the same now as they were then and understand that one tiny vial of the shit costs upwards of $28,000. In addition to steroids, babies diagnosed with infantile spasms are also now prescribed Vigabatrin, a drug that we tried back in the dark ages of the last millenium when it was non-FDA approved. Currently, if you embark on the Vigabatrin path at any point in your child's seizure career, you are given some forms to sign that you understand the drug can cause blindness. Finally, if your baby is diagnosed with infantile spasms today, in this millenium, you might very possibly be eligible for The Knife. That's it. Twenty years and oodles of technology, yet THAT IS IT.
Don't get me wrong. I'm not blaming doctors or science or dedicated researchers. This is excruciating and deeply mysterious stuff. However, writing letters like the head of the American Epilepsy Society recently did to a United States Senator from Pennsylvania, a tersely worded letter* expressing The Party Line about cannabis and its disapproval is, at best, unethical. At worst, it makes me despair and see not stars but a giant, groaning black hole.
I waited nineteen years watching my daughter seize uncontrollably on over twenty drugs. I watched her development plateau and then stall, spent thousands of hours negotiating with insurance companies to pay for treatments and borrowed tens of thousands of dollars to not only treat those seizures but to pay for childcare as my child grew yet never learned to speak, to use the toilet, to walk unassisted, to eat by herself or to sleep by herself, and fought year in and year out for that child's rights and integrity in literally every single system afforded to citizens of the United States. I won't talk about my sons here, Sophie's father, the marriage, the juggling, the whole catastrophe. Always, the seizures.
Then we tried cannabis, and you know the rest of the story.
Good lord, I've gone on a rant, haven't I? This was about cultural hegemony, a word that still intimidates me. I think I might understand it intuitively, though, and it's somehow sung right here, in these words.
*Email me if you want a PDF of the letter. I can't figure out how to attach a PDF to Blogger. Have a giant swig of vodka or mainline some heroin before you read the letter, though, because it's depressing as hell in its obeisance to Big Pharma --
I received an email from MedScape this morning with Targeting Pharmacoresistant Epilepsy and Epileptogenesisin the subject line. This was the exact title of the article referenced, and I shrank when I saw it. My mind wanders to wondering. The names for drugs and the words cobbled together by the Science Powers That Be make me squirm. I can't find their definitions in the dictionary. There are, apparently, not even suggestions for these words or even substitutes. I do like the word confusticate, as referenced above. It means to confuse or perplex; bewilder. Epileptogenesis is the gradual process by which a normal brain develops epilepsy. Pharmacoresistant epilepsy can be practically defined as failure to achieve seizure freedom following adequate trials of two tolerated and appropriately chosen AEDs. The weight of metaphor. Oh, to be a person who embraces literalism.
I love the word skeletal. I love the word labyrinthine. Our Chinese flame tree has finally dropped all but a few clumps of brown leaves, and its branches reach up to the blue sky and cast skeletal shadows on the grass, the patterns labyrinthine.
I hate the word pharmacoresistant. I hate the word epileptogenesis. Sophie's seizures resist a vast pharmacy of chemicals, and the gradual process by which she acquired epilepsy - - the epileptogenesis and resultant pharmacoresistance -- have stripped me to the bone, rendered me skeletal, clanking and clinking the labyrinthine paths.
tending to present a subject or problem in a simplified form, especially one viewed as crude.
"such a conclusion by itself would be reductive"
This will be the first in a series of posts about words that I find intimidating, words that I've read over and over again and have heard in conversation but can never quite wrap my head around. They are words that confuse me, that I mix up with other words, that I stumble over, that I find pretentious or obtuse. I've been compiling a list for the last several weeks but am inspired to start this list today as I continue to muse over and wonder about the sentences strung together by Anonymous as comments on my last blog post. I have a good idea who this person is, and while I at first thought it was someone in the medical field, I am now pretty certain that Anonymous is a writer. Anonymous inspired me this morning not so much to write a better book but to add the following phrase to my list:
after this, therefore resulting from it: used to indicate that a causal relationship has erroneously been assumed from a merely sequential one.
I should let it be known that Latin phrases always intimidate me, particularly the over-used ones. I go into a mild state of panic every time I hear quid pro quo, for instance. The above Phrase of Intimidation, though, is interesting because, according to Anonymous, I've ignored my conflict about Sophie's vaccinations and whether or not they had some role in her seizure disorder in my writing, at least in the mini-memoir recently published which makes it lack focus or direction. On top of that, according to Anonymous, I am afraid that writing through that will somehow link me to Jenny McCarthy and thus alienate readers. Poor Jenny McCarthy. According to our pediatrician, she is actually a very nice person. I have found the use of her as ground zero for the vaccination conflict interminably boring, maybe even reductive.
Anyhoo. Anonymous comments really get my goat. Maybe that's because if I have something to say, I want to own it with my name and my face. I think Anonymous' points were good ones, and I hope to always be the sort of person who even while flinching can learn from criticism. I am grateful, though, mainly to have been able to combine this long-planned blog series with Anonymous' comments from yesterday. What would I call that? Serendipity? Synchronicity? Making the best out of condescension?
If there's a Latin phrase for it, please do tell.
Reader, are there any words that you find intimidating?
