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

Tuesday, September 4, 2018

Sophie B. vs The Great American Healthcare System, Part 1,000,000, ROUND 1

July 4, 2018
Ambulatory EEG

Let's make this a series.


July 3, 2018

Sophie B. (Plaintiff) was "hooked up" to an ambulatory EEG in Neurologist's office.  Plaintiff went home with hook-up and video camera for overnight observation of brainwave activity.

July 4, 2018

Mother/Conservator Elizabeth A. removed electrodes from Plaintiff's head and returned "black box" to Neurologist office. Because it was a holiday, Mother/Conservator had no expectation for quick reading. Mother/Conservator reports that after two decades, she has no expectations at all.

August 23, 2018, 3:00 pm

Mother/Conservator picks up Plaintiff from adult day program and notes Plaintiff's difficulty breathing. Day program assistant reports Plaintiff had difficulty eating lunch and swallowing. Plaintiff's lips are slightly dusky in color. During entire ride home in Los Angeles traffic, Mother/Conservator pounds back of Plaintiff and encourages coughing and swallowing. Mother/Conservator contemplates bringing Plaintiff to emergency room but is persuaded by own inner compass and more than two decades of experience that no good will come of entering hospital emergency room. Instead, Mother/Conservator makes another of what has been multiple calls to Neurologist office for nearly two months regarding July 3, 2018 ambulatory EEG reading. Mother/Conservator has heated discussion with nurse at Neurologist's office demanding that she should get the EEG reading, that Plaintiff is suffering, that something is wrong. Neurologist gets on phone, admits that July got away from us and assures Plaintiff (whose tiny little mother mind™ wonders if August got away from them, too?) that EEG will be read that afternoon and that he will call Mother/Conservator that night. See Appendix A.

August 23, 2018 4:00 pm

Mother/Conservator arrives home with Plaintiff and proceeds to remedy problem of excess mucous and choking. She is helped by Caregiver and stabilizeS Plaintiff who falls asleep.

August 23, 2018 8:00 pm

Mother/Conservator receives phone call from Neurologist who expresses shock that Mother/Conservator was "right," that Plaintiff is indeed having recurrence of ESES, a rare epileptic syndrome that Mother/Conservator has suspected Plaintiff of having but has been repeatedly told by several Neurologists over two years that its recurrence is unlikely. Mother/Conservator goes into full dissociative mode while on telephone and intelligently discusses former incidences of ESES, the treatments for said incidences and otherwise directs Neurologist to treatment modality that was successful previously. See Appendix B and Appendix C.

Dissociative mode gives way to extreme distress and mental suffering of Mother/Conservator, attributed to decades of experience dealing with this shit, grief over Plaintiff's ongoing struggle and suffering and anticipation of forthcoming battle to get treatment for Plaintiff. Given experience, strength, history of mindfulness meditation and love and support from immediate family members, Mother/Conservator puts on big girl underwear, girds her loins and otherwise readies herself for the fight.

August 31, 2018

After multiple calls with Neurologist office to "check" on status of IVIG treatment (see Appendices A and B for clarification), Mother/Conservator is directed to Home Health Agency nurse who says that "this is not approved by the FDA as a treatment for epilepsy, so insurance will deny it." Mother/Conservator corrects Home Health Agency Nurse that the treatment is actually FDA-approved but is considered "off-label" for ESES treatment and that she is aware of possible denial. Mother/Conservator informs Nurse that treatment has "worked" for Plaintiff twice before and was partially covered by Insurance Company after some "wrangling." Nurse agrees to "write up" notes as dictated by Mother/Conservator about past history of treatment with IVIG. Nurse tells Mother/Conservator that she will "get back" to her after the holiday.

September 3, 2018 10:00 AM

Home Health Agency Nurse calls Mother/Conservator on telephone while mother is riding in car after dropping Plaintiff off at adult day program. Health Agency Nurse asks whether you might want to be more comfortable at home receiving information. Mother/Conservator tells Home Health Agency Nurse that she is fine using the Bluetooth option on her telephone in the car. Mother/Conservator wonders in her tiny little mother mind™ whether the Health Agency Nurse thinks she might have an accident when she "receives the news." Mother/Conservator finds this humorous and assures Home Health Agency Nurse that she can take it. Health Agency Nurse says that Insurance Company has declined the doctor's prescribed IVIG treatment for Plaintiff for what Mother/Conservator hears as blah, blah, blah, blah, blah. Health Agency Nurse states that an appeal will begin with Neurologist perhaps joining the appeal and personally speaking to Insurance Company chief doctor who has made this decision. Mother/Conservator listens carefully and says indeed. She can't recall whether she said, of course! or is there anything I can do to expedite this process so that my daughter can get treated for her ESES? Her tiny little mother mind™ wonders how many people are employed for this tomfoolery and thinks of some suitable imprecations, directed today toward Supreme Court Justice nominee Kavanaugh who, if confirmed, will most surely make Plaintiff's life and millions of others more miserable, particularly in regards to healthcare. Mother/Conservator doesn't share the inner workings of her tiny little mother mind™but rather reminds Home Health Agency Nurse of Plaintiff's secondary Medi-Cal insurance. Home Health Agency Nurse reports that the Medi-Cal office worker in Home Health Agency will begin to look into Medi-Cal coverage, now that Insurance Company has issued a DENIAL. Mother/Conservator finishes conversation pleasantly by remarking how frustrating this all is for everyone, even though inside she is dying, her tiny little mother mind™ shrunken, her girded loins gaping, her big girl underpants riven.


Sophie B vs. The Great American Healthcare System

WINNER: The Great American Healthcare System
LOSER:    Sophie B.

Appendix A:

Mother/Conservator reports that Neurologist is wonderful in every respect, so while she is frustrated and upset over the delay in the reporting of the EEG results, after more than two decades of dealing with this shit, she is cognizant of Neurologist's time constraints and being stretched too thin. She assures Court that she'd rather deal with a Nice Neurologist Who Works With Her than an Asshole Neurologist, the latter being the norm and with whom she has had plenty of experience. Mother/Conservator also assures the Court that she is well aware of The System and its shortcomings, that she has worked most of her adult life in it and to improve it, that her efforts haven't amounted to much of anything but that she has virtually kept her daughter alive and sometimes thriving in spite of it.

Appendix B:

2005: Parents of Plaintiff (not yet Conservators because Plaintiff is a minor) are given "three choices" of treatment when Plaintiff is diagnosed with rare syndrome ESES (diagnosed only after Mother insists on hospitalization of said Plaintiff, given drastic decline in Plaintiff's physical abilities with no urgency to attend to this decline by Neurologist at time). Choices will be designated "Door Number One, Door Number Two, and Door Number Three" in keeping with Mother's dark, albeit sustaining, sense of humor.

Door Number One: High dosage steroids
Door Number Two: Valium
Door Number Three: Intravenous immunoglobulin (IvIG)

Mother chooses "Door Number Three" and treatment commences in hospital. After some "wrangling," private insurance company agrees to partially pay for ongoing treatments over the next six months in Plaintiff's home. "Wrangling" should be noted as "understatement" as Mother is left depleted and experiences considerable signs of post-traumatic stress syndrome, triggered by repeated "wrangling" in previous decade.

"Door Number Three" treatment of IvIg restores Plaintiff's brainwave activity to previous "normal" dysfunction and Plaintiff recovers.

Appendix C:

2011: Plaintiff has occurrence of ESES and is prescribed "Door Number Three" again, given its success in treating previous incident of ESES. Insurance company denies treatment but is eventually warned down by repeated calls from Mother, one of which includes a threat to hospitalize Plaintiff so that treatment can be initiated in hospital, requiring Insurance Company to pay. Insurance company agrees to pay for treatment, treatment is administered and Plaintiff recovers.

Saturday, September 1, 2018

Saturday Afternoon Three-Line Movie Review

Crazy Rich Asians

I don't get it. Call me a killjoy, but while I understand how important this movie is with its all-Asian cast, and even though the actors are nearly all charming, the male lead, Henry Golding, is particularly sexy, and the presence of the great Michelle Yeoh works to partly redeem the tiresome superficiality, what is there to say but honestly? I don't get it.

More Three-Line Movie Reviews

Far From the Tree
Sorry to Bother You
Won't You Be My Neighbor?
Learning to Drive
Love and Mercy
Not a Three Line Movie Review
While We're Young

Force Majeur 
Gone Girl
Saint Vincent

Get on Up
Begin Again
The Immigrant

Cesar Chavez

The Grand Budapest Hotel

Labor Day 


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