A Reply to Unknown

copied from my friend Michael's Women's March sign

Unknown left a comment on my last post or, rather, a question.

Here it is:

I am not sure what anybody is protesting. What exactly was the protest about? This I cannot figure out. 

Oh, my.

Where to start?

First of all, this was billed really as a "peaceful march" and not a "protest," but we were, of course, protesting that Donald Trump has been voted into office and has assembled a cabinet of billionaires around him whose interests run contrary to ours.  Drumpf for many of us is an emblem, the last gasp of a dying white patriarchy that persists in objectifying women, raping the planet and keeping down people of color, those whose sexual identity is different than "the norm," and any religion other than Christianity. Many were deeply offended by him mocking a disabled person, denying that he did so and never acknowledging the hurt he caused. I believe all of us who marched object to his constant lies and lack of empathy, to his insistence that success is measured by one's material possessions and acquisition of wealth. Those who voted for him might not be misogynists or climate change deniers or racists and xenophobes, but they sure are enablers. Many of us marched to differentiate ourselves from them and to support the vulnerable. I marched for my disabled daughter and the thousands of people with disabilities that I know. I marched for my two sons and all boys growing up in today's world to let them know that the man who is the President of the United States is not someone to look up to as a model, that his behavior should never be normalized. I marched because I love a man who is black and I believe fervently in Black Lives Matter.

That being said, I think the main reason why women the world over, as well as the men that love them, were inspired to march, was because of the following words we all heard come out of his mouth, words that were never taken back, words that he never made an apology for nor reflected upon but even defended. These were words that plenty of men and women actually dismissed even as his degrading remarks to and about women continued.

So, why did we march, Unknown? Why did we wear pink pussy hats? Why did we protest and what were we protesting?

Here's the text of Drumpf's overheard remarks about women and his own "power" over them:

I did try and fuck her. I moved on her very heavily. In fact, I took her out furniture shopping. She wanted to get some furniture.  I’ll show you where they have some nice furniture. I moved on her like a bitch, but I couldn’t get there. And she was married. Then all of a sudden I see her, she’s now got the big phony tits and everything. She’s totally changed her look. .. I’ve gotta use some Tic Tacs, just in case I start kissing her. You know I’m automatically attracted to beautiful ― I just start kissing them. It’s like a magnet. Just kiss. I don’t even wait. And when you’re a star they let you do it. You can do anything. Grab them by the pussy. You can do anything.

Donald Trump, President of the United States of America

Unknown, that's why we marched. This cretin became President anyway. And millions of us are going to resist him for as long as we have breath.

Best,

Elizabeth Aquino and millions of other women

#resist
#wokeAF

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.

Correspondence

Good morning. I know you're all out there celebrating the birth of our Presidents, but I just wanted to tell you that I changed the formatting of my comment section to Embedding which means that I can reply to each of your comments, particularly when you have a question. This might mean that it's more difficult to comment, so please let me know if you're having trouble. I might have to switch back to the old way.

Oh, and please let me off the hook if I don't reply right away or at all. It'll never be personal (except if you're a troll or someone rude and Anonymous, as opposed to someone thoughtful and Anonymous) and only because I'm lame at it. I do think the comment thing should be a conversation, though, and that I should hold up my side of it. Wish me luck.

Don't you just love that Victorian photo above that I found on the internets? I sure do miss typewriters. I believe that blogging is a sort of conversation, and I look on it that way each day when I sit down to write. It's not a far stretch to imagine myself a Victorian woman of some privilege doing her correspondence each day. Thank you for your community and extra thanks for those of you who leave such thoughtful and interesting remarks. Honestly, I am just so darn grateful for all of you -- readers and commenters alike --

Starting today,

I do believe I'm going to make an attempt to answer or respond to each of your comments. It's only fair to continue a conversation, right?

Favorite Comment of the Week from a Blog Post

The other day, I asked you readers what you felt insane and bitter about, and the replies I got were fantastic, but the one received today said it all:

I am laughing bitterly at the fact that I could easily get the kind of pot that spikes my seizures in the next half hour from Brian, the dude down the hall in my dorm that my friends and I have affectionately nicknamed "Salty Jesus," due to his hair's continual beach-swept, biblical appearance. But after more than 10 medications, a diet and brain surgery, I can't legally get the marijuana that could help my epilepsy. All hail the American medical system. 

Yes, Anonymous:  all hail the American medical system. I don't appear to be any closer to getting the CBD for Sophie despite having researched myself into near-expert knowledge. I guess the only thing to do at this point is wait.

I'm waiting.

Believe

Yosemite, 2009

I realized that perhaps the solution for me was not constant vigilance and action but instead a blend of thoughtful pursuit and deliberate inaction, with a complete trust that the universe will engage. 
For me, when things seem difficult and it feels like I am fighting the world, this is a reminder to me that I need to stop doing. I need to just "be" for awhile and allow the universe to help me. When I work with nature and allow my intellect a break from steering the ship, things always seem to get a little better. The solution always seems to come, surprisingly landing in my lap with no effort on my part.
My advice to you dear friend, for what it is worth, is to just stop for a moment. Begin a short period of complete inaction. Take a breath and ask the universe for help. Believe that it will come and it will.

Lisa Peters

I got the above comment on my post from the other day that chronicled a bit more of my fruitless efforts to find the proper medical marijuana for Sophie's seizures. It stopped me in my tracks, not by its novelty but as a reminder of what I know to be true, what I've experienced over and over and over again.

Thank you, Lisa, for the eloquent reminder.

 

Anonymous reminds me of a poem

William Butler Yeats and his wife Georgie, late 1920s

The other day, an anonymous commenter alluded to a Yeats poem that I had not read or if I had, it was forgotten. Strange to me -- that the image of coats and capes and robes and being naked are haunting me of late -- it's all been said before, but there's something comforting about poetry buried deep in the unconscious peering out through my same eyes.

A Coat

I made my song a coat
Covered with embroideries
Out of old mythologies
From heel to throat:
But the fools caught it,
Wore it in the world's eyes
As though they'd wrought it.
Song, let them take it,
For there's more enterprise
In walking naked.

William Butler Yeats

Blog Call

Dorothea Lange: House Call, 1939
Farm Security Administration camp unit at Merrill, Oregon
The camp nurse introduces doctor to mother of sick baby.

The other day, I got the following comment on the post titled Gertrude Stein, IEPS, conservatorships and books:

Today I am unlurking myself to you. I have read your blog from start to finish over the last few weeks as I just discovered you via Grady Doctor. I am a fourth year medical student currently applying for residency in child neurology. I would LOVE to hear your advice for a new, naive, idealistic, hopefully soon to be resident about what you need from your doctor and how I can provide that to the parents and children I meet. (Next time you don't have anything to write about, a post in my honor?) J/k. Kind of. Anyhow. Thank you for sharing as I feel I have already learned much about Sophie and what must be many other special needs children like her. Children that I will hopefully be honored to meet and care for.

O.K. I don't know this person, but I love her already, and I hope she's reading this right now!

I love you already!

One of my secret wishes has always been to implement a requirement in medical schools and residency programs that the student spend a good two weeks or more with a family dealing with a child with a medical diagnosis and/or disability. I imagine that person sleeping on the couch and getting up in the night to observe the routines of the parents -- whether that is giving meds to a sleeping infant, suctioning a child, entertaining a child who decides to wake and stay awake at 2:00 in the morning, holding a child while she has a seizure and then sitting next to her for hours, making sure that she's still breathing, etc. I imagine the morning coming and the student continuing to observe -- like a fly on the proverbial wall -- as the family goes about their day, dealing with schools and insurance companies and doctors' visits, and siblings and marriage and everything else.  I believe there are programs like this out there - particularly in the area of diabetes and sickle cell anemia, but I wish that it were standardized because I believe it would give the student incomparable experience and truly affect how she deals with her patients and their families. I think it would not only impact "bedside manner" but also how the doctor makes decisions about treatment and care of the child.  But I digress --

I love the person who wrote the above comment even more for considering a residency in child neurology and have already replied that I hope she'll narrow that down to becoming an epileptologist (there's an incredible shortage of pediatric epileptologists). She'd get to deal with kids like Sophie and parents like ME -- lucky, lucky, lucky!

What I'd like to do in today's post is ask any of you parenting a child with a disability -- or not -- to answer her, share what you need from your doctor or what you wished you might have received from your doctor and perhaps some advice for this "new, naive, idealistic, hopefully soon-to-be resident."

Don't be shy! Here's your chance to influence and affect a new generation! I know that those of you who read here regularly have many different perspectives and experiences, so I hope you'll be candid. As a further incentive to answer, I'm going to either do a live strip tease on Skype or send you some virtual chocolate cupcakes. (Just making sure that you're paying attention)

Two Things, Pathologizing and Mythologizing

Starry Night by Vincent Van Gogh

This morning as I got Sophie ready for school, and the usual happened, I thought that I cannot write about any of this -- again. I thought that I am beginning to sound like the broken record that plays a seizure soundtrack. I thought that even my post about my newest health insurance and anti-epileptic medication woes is repetitive, incredibly repetitive except for the number of photos that depict me as tired, so tired, with seemingly fat fingers. I haven't included many photos of myself in posts, and when I look at these I see the toll, the toll. 

I thought that you could probably troll through the more than two thousand posts that I've written over the past four years and find only three or so topics that I've written about, maybe even two. As I pulled away from Sophie's school, I watched as one of the aides, a wonderful man in a straw hat, bent over Sophie and gently spoke with her and I felt overcome. Tears pricked my eyes and they were not just from the seemingly endless depths of sadness but also ones of gratitude, that people like this exist, that they help to make my daughter's life a good one. I wasn't going to write about this, though, another track on the endless loop.

 But then I got home and read Lisa's comment about the significance of the red dragon in Taoist philosophy. Here it is on my recent Dragon Mom post:

At the risk of sounding like a complete wacko, just wanted to share some of my latest discoveries with you since they seem to have an interesting relevence to your experience. 
The Tao is a Chinese philosophy (not the religion) that discusses the principles of yin and yang energy. These are opposing life energies that rely on one another to define themselves. 
The Yin is sometimes represented as a green dragon, it is the inactive, intuitive, female energy (or perhaps mermaid-like?) The Yang energy is sometimes represented by a red dragon. It is the active, action-based, masculine energy that is necessary to balance the Yin.
A dragon swallowing its tale is an image used to represent the Yin Yang philosophy of the continuous cycles of life. 
The red dragon is also used sometimes to represent Sheng Qi a type of inner energy that Taoists use to fight disease and promote long life. Just thought this reading and symbolism had an interesting connection to your dragon vision..for whatever it is worth...wishing you and Sophie much peace always.

I am very familiar with Taoist principles and philosophy having studied it quite a bit in my college years, but I had never heard about the significance of the red dragon. When I had that vision of myself as a fuming dragon, sitting on the side of Sophie's bed as she seized and began to write about it, I thought, too, of the inimitable art of William Blake, the great nineteenth century poet, and I remembered that somewhere in his vast archive there was a painting of a woman and a dragon, and sure enough there it was: The Great Red Dragon and Woman Clothed by the Sun. Lisa's comment, read at just the right moment, reminded me again of the great power of synchronicity, that, perhaps, there are no coincidences. I am just swallowing my tail, at times, living over and over my life, but I am also red with fire, fighting this godawful disease and helping Sophie to live a better, longer life.

After reading Lisa's comment, I read Verna Wilder's:

I am always so moved by your posts, and when you use Blake's images, I know I'm in for a powerful experience. I love what Lisa shared about the Tao and dragon energy. I heard Jean Houston speak once about mythologizing our lives instead of pathologizing our lives. You mythologize, you and your mermaid daughter and the deep poetry in your heart, your dear dragon heart. You show us how it's done, and your words tear me apart and put me back together again. I appreciate you more than I can say.

Mythologizing is nearly effortless for me, and I had always thought it made me more wack-a-doodle than healthy. I'm going to think otherwise, now, even on this day of seizures and tears and gentle, bent-over heads and whispering, kind words.

I don't have more to say but would, rather, put my hands together in a prayer-like pose and bow my head to you, Lisa, and to you, Verna and to all of you.

To you.

Comments Housekeeping

Many of you have expressed to me through email that you're having trouble leaving comments here. Are you primarily WordPress users? I think the problem is here on Blogger but is restricted to WordPress users. I went on the help forums and found this information which confirms that while it's a Blogger problem, if you're a WordPress user and want to leave a comment you should do the following. Any advice? Let me know if it works -- or not.

The problem is OpenID. It simply doesn't work very well. When possible, always use the NAME/URL option. http://en.forums.wordpress.com/topic/blogspot-blogger-not-accepting-my-wordpress-comments?replies=9

Sunday Stress Sermon

San Francisco 2008

I'm going to start writing for a new site, and my first article is up. The site is called Technorati, and you can read my article HERE. If it seems familiar it's because I worked on an old post a bit and made something new. Leave a comment

here


there

nowhere

everywhere.


Happy Sunday.