Friday, May 8, 2015

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 -- 


  1. You can do a screen shot of the PDF using Preview if you're on a Mac.

    Cultural hegemony=the powers that be who are devoted to maintaining a status quo that keeps all the power in their court. I hate that word hegemony too.

    Honestly, every time I read about the drug regimen Sophie was prescribed, I am horrified anew. I am glad you write it. I am glad you speak truth to power. Something is getting through.

  2. On another note you and your friend are so beautiful. And "faculty"? Very cool. But where?

    1. At the Epilepsy Foundation Brain Summit last month, I was a speaker and thus considered faculty. That was the awful weekend where our presentations were so rudely received -- and what Allison referred to in her post.

  3. I am so glad that you have such a lovely and supportive friend as Allison who is so in sync with you and this issue.
    We are all here for you understanding and supporting you and people like Allison, but how lovely that you actually get to put your arms around one of us.

    Thanks for the link to her.

  4. I am so lucky to have your mind to meld with. I can't even imagine not having the internet, Facebook and every parent I've met there in my life. I would have had no idea what was going on or what to do, or more importantly, what not to do. We have to talk about this mess. There's a lot to clean up.

  5. This is an incredible post. Incredible. I am grateful for your eloquence and passion. Thank goodness you have community. When we midwives were back in the bad old days, we had (and still have) each other for support. We knew we were right and we fought for ourselves and our clients. It's still a struggle but as Margaret Mead said "Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."

    XX Beth

  6. You go. All of these academicians and physicians who are so far down their own rabbit holes that they can't consider or admit that what they've been doing all these years is, at best useless, and at worst terribly destructive, are not being true to the spirit of the degrees they hold. I can't imagine how tiring and frustrating it is to continue reminding them that there is life "outside the box," but I am sure-as-shit glad you continue to do it and I will keep trumpeting your message far and wide as well.

  7. I'm sorry that you've had - that anyone has had - contact with such an arrogant and uncaring doctor. I often wonder how such arrogance and lack of 'bedside manner"/interpersonal skill gets past medical school; how it isn't caught, and mentored, corrected, curtailed, addressed. Healing presence is a huge factor in care-giving. I"m grateful that you and your friend have shared openly about this. May Kennedy and her family be blessed with all that they need.



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