Dear Tina Turk, "Pharma Rep":

Something tells me that you're not really a Tina and might not even be a "pharma rep," but I'd like to give you the benefit of the doubt and will address you as so. After reading your interesting comment to me this morning on my last blog post, I have a number of questions that go beyond my perhaps knee-jerk, immediate response to the comment. I'm going to bank on you actually being a pharma rep and therefore hope that you'll visit here and perhaps respond, again. This being said, I do hope that you'll refrain from attacking me or my family personally.

I'll remind you of your comment:

I am a pharma rep and it really is not like that. You sound too angry and maybe you should help for that. Pharma has been ragged on too much, and it is not true. I feel sorry for you because that anger and bitterness is in your body and the only person you are hurting is yourself. I can see why some people in your family get upset with your rage.

My first question addresses your claim to being a pharma rep and "it" really not being like that. Like what? In the blog post and elsewhere on my blog, I've mainly written about my experience with "pharma," and whether it's paying $16,000 for a vial of ACTH or $949 for a 30-day supply of Onfi or going through the slow and torturous process of weaning a powerful narcotic from my child's 75 pound body, there are very few emotions other than despair and anger to express. I am perfectly aware that pharmaceuticals can also work powerfully toward the good, but other than writing some kind of caveat, I'm probably going to just write about my own experience and expertise. That being said, have you read the latest ten-part series on Johnson and Johnson? How about the story of just how the manufacturers of Oxycontin managed to saturate the market with their painkillers, snow physicians about their efficacy and contribute to the raging heroin addiction problem our country faces? I can write about that from experience, too, as I have several -- yes, SEVERAL -- relatives currently addicted to opiates and heroin. The goodness of pharmaceuticals has eluded us. So, when you say "it really not being like that," I'm interested to know what it's really like. I know for a fact, too, that other minds would love to know.

My second question refers to your assertion that I "sound too angry" and should get help for that anger. Thank you for that concern, if you are, indeed, concerned. To tell you the truth, I did waffle a bit about that post and asked myself whether it sounded too angry. I have friends and family who were very much helped by pharmaceuticals, by painkillers used at the end of life, by antidepressants and anti-anxiety medications, by chemo for cancer and so on. I am sometimes painfully aware of my anger, my biases and the ineffectiveness of being and seeming so. I feel conflicted about expressing my anger, but I also believe that anger to be a justified response to the hegemony* of our medical/industrial complex over those people who dissent. Perhaps it's also a response to the patriarchy's hegemony over angry women. It's completely and utterly justified in reference to the clusterfuck that is marijuana policy in this country. In any case, what would you have me do otherwise?

Finally, this isn't a question -- or even a defense -- but I am aware of the corrosive effects of anger as well as how, when directed wisely, it can galvanize and energize. I am gifted (by chance, by luck, by the universe) with a talent for stringing together words to express myself. I'm going to always strive for truth, for expressing the world and my life as I see and experience it. Sometimes, I'm going to sound like a bitch, a whining and spoiled first-world ingrate. I appreciate when people call me on that and promise to always accept that criticism humbly and work on it. Other times, I'm going to rage and rant despite the "anger and bitterness" in my body and take my chances on it "hurting" myself. Why? I'll answer that. Not a week goes by that I don't get a telephone call, an email or a comment on this blog from someone who is grateful for my expressing my experience because it so closely resembles theirs, and they don't feel so alone. That makes any slights to my body worth it.

My final question concerns your stated understanding of why some people in my family get upset with my rage. Dragging my family into it sort of blows your cover as concerned Citizen Pharma Rep. Or are you actually in my family, Tina?

Sincerely,
Elizabeth











*Thanks to my friend Allison Ray Benevides who taught me everything I know about hegemony. You can read her brilliant take on everything here.

Intimidating Words, Part Three

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:

Exploring Hegemony with a Tiny Little Mother Mind™

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 --