Saturday, October 13, 2018

My Response to The NY Times Epilepsy Story

So many people sent me the recent — let’s call it crowd-sourcing — article detailing a young girl’s hideous epilepsy story and asking for the public’s help, that I’ve lost count. That we live in a period where literally everything is a reality show makes me ill. Crowd-sourcing medicine? Give me a break. This is my response to the parents via the New York Times and the f’d-up medical business community that pretends to Science:

Don’t cut out your child’s brain until you’ve tried cannabis medicine. “Fixing” your child is the hardest, most fruitless journey you will embark upon. The opposite of that is not acceptance. There is healing in the legion of people who know your suffering. Healing and curing are entirely different things.

Wednesday, October 10, 2018

Making Art, Making Cake, Making Love

Let the sunshine in
Photographer: Carl Jackson 

I'm excited to tell you that I have three pieces in the Michigan Quarterly Review. It's a special themed issue titled "Caregiving." I'm in pretty darn august company, including Suzanne Edison and Heather Kirn Lanier. The review has categorized my work as "poetry," but between you and me, they are really prose poems or fragments that appear in my larger manuscript.  You can order a paper copy or download a PDF for $10. There's some amazing stuff in there, and let's hear it for supporting the work and art of caregivers. I recently sent about 180 pages to an editor. I have about 3/4 of the first draft revised and am determined to get the last quarter done by the end of the month. The publication in Michigan Quarterly Review is such an honor —I've probably sent out ten things over the last couple of years and have had all rejections, so this gives me that extra kick in the ass that I need.

Maybe I'll have a book published before I turn eighty but probably not before the Disunited States turns from plutocracy to autocracy.

I guess we have to just keep doing the work. Making art, making cake, making love.

In other news, my fellow co-host and friend Jason Lehmbeck and I had the most profound discussion with two women on the Who Lives Like This?! podcast. Jennifer Siedman and Blyth Taylor Lord spoke to us about their own families and lives, about palliative care, bereavement and the remarkable organization Courageous Parents Network.  Even if you aren't a caregiver, you must listen to it. I beg you to listen to it. Please share the link, too. Remember: we're making art, making cake, making love.

Here's the link.

What are you up to, Reader?

MQR 57|4 Fall 2018

Saturday, October 6, 2018

Dandelion Wishes

So, yeah. Now we have not one but TWO misogynists sitting on the Supreme Court and ONE misogynistic sexual predator directing the whole shebang along with 51 sycophants in the Senate, minus one woman from Alaska.

How very charming for us, no?

I've got family members who support Trump and Kavanaugh. We can barely talk at all now, and I don't know what to do about this. I welcome all tips.

You should read this:

Somewhere on the wide spectrum between adolescent teasing and the smiling white men in the lynching photographs are the Trump supporters whose community is built by rejoicing in the anguish of those they see as unlike them, who have found in their shared cruelty an answer to the loneliness and atomization of modern life.

Still angry, moving on.

Sophie is currently getting her second round of IVIG infusions. She had two hellacious weeks after the first (probably unrelated) and has been perking up in the last week. I haven't given an update because I'm generally so stressed out about her and me and all the usual crap that I just don't want to exacerbate it by -- well -- sharing it. It's too much, Reader. Way, way too much.

I'm not going to be teaching the senior citizens any more because the company that hired me thought I'd be willing to drive all over southern California to do so. When I say drive all over, I mean ALL OVER. Like there might be mornings where I'd be driving three hours for a one hour class. On top of all of that is Sophie and her erratic schedule and life. Her care IS my job. Sigh. I will miss that crabby woman, though, and the soft-spoken woman who worked in the cotton fields of Texas. I need work. Freelance work. Suggestions welcome.

Saint Mirtha cut Sophie's hair really short, and she looks a bit like a dandelion. I close my eyes and make a wish and blow.

Friday, October 5, 2018


That's my sophomore year school picture. I was fifteen years old and attended The Lovett School in Atlanta, Georgia. We wore powder blue shirt-dresses in the warmer months that we were allowed to cinch with whatever belt we liked. We wore white or navy knee-socks and some kind of loafer from L.L. Bean or Wallabees from the department store. We were not allowed to wear sneakers or tennis shoes as we called them in the south. My necklace is a gold Catholic medal of the Virgin Mary. I was one of the few Catholics in my class. It was an Episcopal prep school. There were fewer Jews and no Muslims that I know of, but would a Muslim have announced it back in the late 1970s at a conservative prep school in the south? I was thought to be Jewish, probably because I was dark and looked faintly exotic. That's the word people used. My family had moved to the south from the New York area several years before, and while I had a southern grandmother, I never felt southern, never really felt a part of it. Why are you here? one of the blonde popular girls asked me once in front of the P.E. lockers. It was a Jewish holiday. I don't remember what I said even though I remember the question. There were even fewer people of color than Jews. We called people of color different names: black, Indian, Mexican. I remember every African American person's name in my class. I don't remember everyone in my class or their names, but some things stick out. I don't remember whether anyone was Asian. We didn't use the word Asian. 

This isn't a post about nostalgia and only a little about memory. It isn't about me. My mood over the last week, since we heard Dr. Christine Blasey Ford's account of her assault at fifteen by probably soon-to-be Supreme Court Justice Brett Kavanaugh, has been one of outright rage and then simmering rage and then depression and then disbelief and then some more rage and now -- well -- resignation tempered by rage. Dr. Ford's memory has been called into question, at best. At worst, she is thought to be a shameful liar. This is why I'm angry. I'm angry at privilege and male trumping truth and justice. I'm angry about the narrow interests of the Republican party. I'm repulsed, frankly, by those who support the vile human they've elected to be president.

There's absolutely nothing wrong with being angry. We're learning that, now.

Remember that black women have been doing this shit and dealing with shit for even longer. So have all people of color, actually, and all those with disabilities, too. Remember that. We're strong. You're strong. I'm strong. Get out the vote. Remember disenfranchised people, including prisoners who've been released (in Florida, particularly, according to a friend). If you need a rest, take it. Then get up and get a grip.


Tuesday, October 2, 2018

Poetry with Senior Citizens

How's that for soothing? The steam from my coffee cup literally swirling up and out and can't you smell those peaches and the pears are buttery and the sun, always the sun. The calm certainly belies the simmering rage I feel, especially tonight after seeing the POSPOTUS give one of his inimitable rally speeches, this time in the great state of Mississippi, where he mocked Dr. Ford. The backdrop was a bunch of hooting and hollering white men and women who, I suppose, are his base and never was there a better word to describe them.

We need to turn this thing around.

Here's something else to soothe our souls. I'm teaching a couple of creative writing classes to senior citizens. They are lovely men and mostly women in a couple of assisted living homes here in Los Angeles, and I got the job by applying through one of those newfangled job search engines. I won't be putting either of my two boys through college or putting in an adapted bathroom for Sophie with my pay, but I already really like doing it. The group that I've seen twice is particularly fragile -- both physically and cognitively -- but they can be inspired to tell the most vivid stories. I am always the first, one woman began, her words unfurling to describe her early childhood days in the cotton fields of Texas, plowing and picking. Another woman opens one eye and glares at me. I've got NOTHING to tell you, she says and closes her eye. She's so hostile that I sort of love her. She also told me at the end of the class (she contributed nothing) that's a pretty dress, and I said thank you. I recited Joy Harjo and played a Native American water song. A man in a Dodgers cap whose chin lay on his chest while he gently snored through the entire first class was lively in the second one. When prompted to write about someone in your life who is important he chose his son and said He always does the right thing and organized this whole thing when there was all this darkness and trouble. 

The stories. Everyone has a story.

Except for that POS that is running ruining our country. I know I'm not supposed to wish harm on any living being but damn. And the people who support him? The word scratch. The word eye. The word out.


Here's a poem.

All the Difficult Hours and Minutes

All the difficult hours and minutes 
are like salted plums in a jar. 
Wrinkled, turn steeply into themselves, 
they mutter something the color of  sharkfins to the glass. 
Just so, calamity turns toward calmness. 
First the jar holds the umeboshi, then the rice does.

Jane Hirshfield

Thursday, September 27, 2018

Burn It All Down


That's what we feel.


I wish I could find a photo of my eighteen year old self, the innocent self that attended the University of North Carolina at Chapel Hill, who pledged a sorority, who attended fraternity parties, who got drunk only a few times, but one time in particular at a party and afterward when a boy whose family name emblazoned a dormitory took me back to his dorm room and when I felt woozy (I had never been drunk) and said so, he told me to sit down on the bed lie down you'll feel better and then with lie simultaneously put his very large hand at the top of my stomach, just below my chest I think it's called the solar plexus and pushed me backward but I knew in that moment, I knew his hand, and even as I looked up into his nostrils so wide, so long I knew what was happening and my head cleared and I struggled up his hand there and sat up and stood up and walked out the door and ran down the stairs and out of the dorm and on to mine. I don't remember if I told anyone about that, then. I was a little bit drunk. Maybe he really wanted to help me. 

I went to college with lots of Kavanaughs. 1981-1985. The parties, the garbage cans filled with Hawaiian Punch and grain alcohol. The ancient black man who tended bar, at the "cocktail" parties and called every girl Miss and her date's last name, his voice soft as he handed out gin and tonics. The rumor of girls pulling trains. Girls who woke up and had forgotten what happened the night before. The smell of piss and stale beer in the hallways of the fraternity houses in the morning. The boys in one fraternity who hung tampons from their Christmas tree in the entrance of their "house," just at the bottom of the winding staircase where girls and boys far wilder than I disappeared. The secret societies where the most privileged boys belonged, along with professors and alumni, the Castle and the Lodge, their arcane rituals. The parties there where lines of cocaine were sniffed up with dollar bills, where girls' boyfriends had nicknames like "The Doctor," the wink wink of dealers, the wall-crawling thumping of music and ecstasy-fueled camaraderie. The teeth grinding afterward. I knew all of it, participated in little of it, was usually sober, my own boyfriend and his friends drinkers but never all that. There are always choices to be made. I watched it. All rich. All white. The Daddies. The privilege. The entitlement. The racism. Yes, the racism. Antebellum parties with blackface. The laughter. No integration in the sororities and fraternities despite attempts. My grandmama would never pay for my membership if we let black girls in, I read on a slip of paper when we canvassed for reactions. I could never live in the same room with a black girl, another.

I don't think the men on either side really get it, do they. And the women on one side, yes there are sides, yes there are tribes and that is not the real danger. The women on that side who just don't can't won't get it. So much hurt and darkness and once they were little boys and yet, still.

As much as we've been taught otherwise, I say burn the whole thing down. 

Monday, September 24, 2018

Musing on the World, Unfolding

I detest the masculine point of view. I am bored by his heroism, virtue and honour. I think the best these men can do is not to talk about themselves any more.

Virginia Woolf

For most of Sophie's life, my greatest fear was, of course, her death. The fear of death had the greatest of urgencies and propelled me in literally every single decision that I ever made concerning her. I don't know when that fear left me or when I became not so much accustomed to it, but rather looked upon it, the possibility of it, as just part of all of it. Part of living that is, part of fighting for someone's quality of life, that is. Death is just part of all of it. I can not know of Sophie's death until and if it happens, if ever, just as I could not know of Sophie's life until it happened. She grew inside of me, was a part of me and me her, yet still I did not know her life.

The word intimate. The word intimation.

Having some equanimity doesn't mean I am not consumed, some days, with fear and anxiety and such a strong sense of overwhelm that I hardly know how I am functioning.

But then it lifts.

I had never read the Woolf quote before today. She was, apparently, speaking of war in particular, but hell, it pertains to what's going on today as well.

Here's what I think (with full awareness of the irony in Woolf's admonition to not talk about themselves any more).

All of this cluster-fuckery (Kavanaugh, Trump, the Republican Judicial committee, KellyAnn Conway and the other women who support the authorities in power) is a painful part of a process -- an inexorable process that will lead to a better world, a world that we have not yet known, a patriarchy disintegrated and power not defined by sex. I think women are engaged in ways that the world has never seen -- engaged socially, sexually, politically, and personally.

I think men and women who do not get out of the way will be made irrelevant -- far more irrelevant than they imagine. It's exhausting and exhilarating. I think the unfolding is so stressful and induces so much anxiety because we are witness to it as it unfolds in real time. As humans we are perhaps incapable of grasping all of it, all of the suggestions of what will follow even as we are exhorted to notice and take in everything that technology throws at us.

I think we can only intimate what it might portend because we have never known a world with such intimations. 


Thursday, September 20, 2018

In a Van Gogh Painting

Sunflower Farm, Half Moon Bay

One Day

One day after another —
They all fit.

Robert Creeley
via Pome by Matthew Ogle

Tuesday, September 18, 2018

You can only lose what you cling to

La Jolla, CA 1996

The thought crossed my mind the other day that Sophie's epilepsy is a beast, a monster, and she is not her epilepsy, not a beast or a monster and I'm always fighting it and not her. I cannot can't can not accept it push against and never through it over and over and over year after year after year. This is contrary to Buddhist thought. The harder you push against the more you resist the strength of your hate is the measure of the intractability against which you push resist and hate. I just can't do it.

What do the religious say? Something from Ephesians, I think. Something about now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us.  Of course, there's that power which is a Him, capital H, I wager, or God.

We are all asked to do more than we can do.

We are all given way more than we can handle, saith I.

Monday, September 17, 2018

It's a Health Insurance Miracle!

When my podcast partner, Jason Lehmbeck, heard about what happened last week with The Blue Shield of California first denying and then mysteriously covering Sophie's infusions of IVIG, he said, "It's an insurance miracle!" and somehow that one remark not only sent me into a gale of giggles but has sustained me ever since. That's the beauty of our community and of my partner -- he gets me, I get him and we get all of ya'll.

We recorded a catch-up podcast last week and hope that if you haven't yet checked out Who Lives Like This?! you will today. Jason and I didn't have a guest on but rather caught each other and our listeners up on what's been going down in our lives. We talked about our kids and highlighted The Siblings. We also hashed out which episodes had most affected us or that stuck out for us personally. For me it was the discussion with Josh Fyman, a father of a severely disabled young girl and his family's decision to place her in a residential setting instead of caring for her at home. This is a topic that has always made me squirm in discomfort. I have strong opinions, as you know, and I thought I felt pretty unequivocally about this subject. What happened, over the course of the podcast and then for weeks afterward, was a kind of mind and heart opening. I don't know how to explain it in any other way, but I do know that Josh and Jason and I talked about what seems like an impossible thing to talk about, and my heart and my mind were opened. That's all I'll say about that, but I encourage you to listen to the podcast.

If you're so inclined, please consider supporting our podcast through the Patreon link at the top of the webpage. We are building a community and need the support! And if YOU'd like to be a guest or hear about a certain topic or from a certain person, please let us know! You can leave a comment here or on the Facebook page or blog.

Tuesday, September 11, 2018


Sophie is taking the IVIG infusions well on the third day. She has one more treatment tomorrow and is then off for a month. Nurse H is a lovely person. I have learned so much about her life as a Korean immigrant and much about her now-grown children and her grand-children. She has shared some very personal things with me, and that is fine. She sits curled up on Sophie's bed, not much bigger than Sophie but holding so much quiet strength and faith and purpose. I found myself sitting quietly with Sophie, my anxiety lessened for the first time in many weeks.

It's still 9/11 and I'm still remembering the restaurant workers my husband knew who threw themselves out of the burning building and fell 102 stories down. I'm remembering all the brave firemen and women, those who perished while trying to save others. I'm remembering the 2976 innocent Americans who died that day, and the 48,644* Afghanis and the 1,690,903* Iraqis and the 35,000* Pakistanis who have also died as payment for crimes they did not commit. A life is a life is a life.

Rosh Hoshanah

i bear witness to no thing
more human than hate

i bear witness to no thing
more human than love

apples and honey
apples and honey

what is not lost
is paradise

Lucille Clifton, from September Suite, 2001

*Numbers dead are estimates

Monday, September 10, 2018

The Limitations of the Tiny Little Mother Mind™ and #SeezJahBoy

It's a big world.

That's what I tell myself when I read about or hear about things that are otherwise incomprehensible. It's a big world, I thought when I read about plushies in a Vanity Fair magazine in the last millennium. It's a big world, I thought when I actually ran into a plushy convention at a resort hotel in Orlando where I was attending a children's healthcare convention. It's a big world, I thought, when people started talking about reality shows and women being famous for being famous,  It's a big world, I thought when Arnold Schwarzenegger was governor of California, and it's a big world, I thought, when certain celebrities insured their famous asses, literally. It's a big world, I think, when people get all geared up for the season of bashing brains into dementia, otherwise known as football. It's a big world, I thought when people -- some of whom I actually know and love -- voted for and continued to support Donald Trump, even after he imitated and mocked a disabled man and bragged about his prowess grabbing women's pussies. That one was a stretch, to tell you the truth.

A lot of people are excited about last night's Miss America pageant -- how Miss Michigan, a blonde Barbie doll, made a comment about the bad water in her home state and appears "woke" in the newest sense of the word, and Miss New York, a black Barbie doll, won the prize. It's a big world, I'm thinking, wondering how in 2018 we still have beauty pageants (although I've read they're no longer "beauty" pageants, and there's no more bathing suit competition). What's that expression? Whatever floats your boat?


My tiny little mother mind™ was seriously taxed today when I learned that Netflix released some movie called The After Party that's getting all the raves. Evidently, the main character has a seizure (after smoking marijuana) while rapping on stage, projectile vomits and falls to the ground writhing. The moment is captured on video, it goes viral, he's called "Seizure Boy," and soon everyone is doing the #SeezJahBoy dance.

This is comedy.


Where do we start? The young man who plays the character is an up and coming rapper and has a bazillion followers on Instagram. He sees himself, ironically, as a bullying advocate. People with epilepsy are commonly bullied. This is a fact. I know countless people whose children have been bullied, have been mocked and derided when they've had a seizure in school. The stigma of epilepsy is still so strong that adults with epilepsy often don't tell their employers that they have it. Teenagers with epilepsy are often at higher risk for anxiety and depression, and much of that can be attributed to our culture's ignorance of the disease.

So, yeah, back to #SeezJahBoy. Despite condemnation from different news sources and epilepsy and seizure awareness foundations, the hashtag is viral at this point. I have heard from good friends in the epilepsy community that when people go in to these conversations on Twitter and Facebook, in an attempt to counter the ignorance, they are being called trolls or "racists" (because the movie is predominantly by black people). How many people did this show have to go through to get put on the air? Are we overly sensitive as parents of children with epilepsy or individuals with epilepsy? Do I think the show should be pulled? To tell you the truth, this sort of thing so taxes my tiny little mother mind that I think nothing at all. I don't have the energy to think about some stupid movie that makes a mockery of people with epilepsy. I don't give a fuck about the writers, the editors, the sound people, the young actors and wannabes that made this movie. There is no big world that holds such shit. The big world shrinks in to a dot, and that dot is a portal to my house where my epileptic daughter sits in her wheelchair, the little vein in her forearm penetrated by a needle that brings an infusion of antibodies to her brain, so many antibodies that they literally flood her brain and dilute out the bad antibodies that have been wreaking havoc, causing her to seize, near constantly, in her sleep and subsequently destroying her ability to walk and eat and move in the world.

Dance on, #SeezJahBoy people.

The world is ugly,
And the people are sad.

Wallace Stevens, Gubbinal

*New Readers should know that I hate this expression and only use it facetiously.

Sunday, September 9, 2018

Infused with Gratitude and Antibodies

I am so grateful in this moment to hear the steady tick of the intravenous immunoglobulin being infused into Sophie's body. I'm grateful for the gentle ministrations of the home health nurse who has already spilled her life story to me -- a life story very different than mine but I'm open to -- well -- everything. She will be here every day for the next four days and then monthly for the next six months.

I am so grateful for all the support we've gotten in the emails, texts and comments here on the blog and on Facebook over the last couple of weeks in particular. I'm particularly grateful for Christy H, a friend here in Los Angeles whom I never see but who also has a child with special healthcare needs. I got a delivery on Friday from a courier service, opened the large box and found a beautiful note from her and her husband and a bottle of very fancy champagne and a bottle of beautiful rose. This just brought me to tears, to tell you the truth. Here it is next to the hard-won medication that is being infused into Sophie's veins with the hope and expectation that it will help her to recover from the terrible syndrome that has caused Sophie so much suffering. How many folks do you know who have such riches side-by-side in their fridges?

I hope your Sunday has been a good one. May the week ahead be filled with champagne and necessary blood products.

Friday, September 7, 2018

Sophie B. Vs The Great American Healthcare System, Part 1,000,000: ROUND 2

Article 1

Please See Round One Timeline HERE Before Proceeding and for Explication of Article 1, above. Note that I can get you a copy of the Explanation of Benefits, regarding this decision, AT NO COST, thanks to the Insurance Company, so email me if you'd like one.

Big Girl Panties ON?
Loins Girded?


September 4-6, 2018

Mother/Conservator makes repeated calls to Neurologist and Neurology Office to check on progress of Plaintiff’s appeal to get necessary IVIG treatment for ESES. Neurologist reports that Blue Shield of CA does not respond to repeated attempts to call. Plaintiff appears further weakened and distressed, drooling, difficulty swallowing and drinking. Mother/Conservator expresses distress and frustration, and Neurologist responds appropriately, assuring her that “we’re going to get this done.”

September 7, 2018
10:30 am
Mother/Conservator makes morning call to Neurologist for update on Plaintiff’s appeal to get treatment for ESES. Note that TWO WEEKS have passed since diagnosis was confirmed and order for treatment was made. Neurologist states that if his efforts to appeal to Blue Cross of CA are fruitless, he will admit Plaintiff via emergent care for hospital administration of infusions. (Mother/Conservator states that her own condition is extremely stressed out. She actually posted the following picture (Article 2) on her social media page but assures all parties involved that her rage as depicted in picture with weapon in hand is metaphorical.

Article 2

10:43 am
In the middle of Neurologist's statement that he will admit Plaintiff to emergent care for hospital administration of medication if he is unable to get through to Blue Cross of CA by end of day, Mother/Conservator receives a text message. Because of her finger dexterity (considered extremely high as measured by an expensive personality and skills test administered in the last century by a famous company) and multi-tasking skills, coupled with afore-mentioned extreme stress (which renders Mother/Conservator more like larger mammalian creatures on guard and extremely alert faced with threats to offspring -- think bear, moose, etc.), Mother/Conservator switches over to text messages and reads this (Article 3):

Article 3 with professional names redacted with quasi-religious symbols that were inserted by Mother/Conservator, despite her lack of religious faith

Mother/Conservator shrieks news of approval to Neurologist who is speechless, given that he has been unsuccessful in reaching Insurance Company. Mother/Conservator wonders aloud what the hell has happened here? Her tiny little mother mind™ is busy, busy wondering whether this weird and random event is somehow related to her blog post from the previous day and the many thousands of "hits" it has received, but her body, always many, many steps behind the tiny little mother mind™, feels a rush of adrenaline and she tells The Neurologist that she will hang up and call the Nursing Agency to make the appointments for Plaintiff to receive treatments. Because her body is in a riot, and her tiny little mother mind™ is busy, busy, Mother/Conservator does not remember how she hangs up from Neurologist but believes he asked her to let me know when Plaintiff gets her schedule of infusions.

10:45 am

Mother/Conservator calls Nurse at Agency who has texted her the GOOD NEWS (the lettering of which the tiny little mother mind™believes to be rather Trumpian and is amused by this and then quickly horrified because part of the extreme stress is due to the constant worry about the healthcare system and the steady erosion of what little benefits the Affordable Care Act has conferred upon Plaintiff and family and hundreds of families that Mother/Conservator knows, benefits which are under attack even as this is typed), and Nurse at Agency tells Mother/Conservator that just that morning, the Agency received a letter from Blue Shield of California with a reversal of former denial. See Article 4.

Article 4

Both Mother/Conservator and Nurse at Agency laugh incredulously at this seemingly miraculous turn of events and then move forward and set up Plaintiff's schedule for infusions immediately.


Sophie B vs. The Great American Healthcare System

WINNER: Sophie B.
LOSER: The Great American Healthcare System and Mother/Conservator's Relative Sanity (See Article 5)

Article 5


Related Posts Plugin for WordPress, Blogger...