Tuesday, July 31, 2018

A Sense of Humor

My Dad with Henry and my niece Mary
2006 and 2017
Humor keeps us sane. I’m in Hilton Head for the annual family “vacation.” It’s a whole lot of “fun” and a whole lot of family. Need I say more?

Speaking of humor, don’t forget to listen to this week’s episode of Who Lives Like This?! Jason and I have a great discussion with Sandra Stein about humor in caregiving — how to nurture it and how it can help in even the most challenging situations. Here’s the link

Saturday, July 28, 2018

Saturday Evening Three-Line Movie Review

Far From the Tree*

directed by Rachel Dretzin
based on Andrew Solomon's Far From the Tree

It's a given that I'd rush to see this documentary, as I believe Andrew Solomon's book Far From the Tree should be at everyone's bedside and a probable replacement for the Gideon Bible which has been so grossly twisted by its most evangelical adherents. Solomon's book is about humanity for humanity, and in these grotesquely inhumane times when children with brown skin are kidnapped from their parents and put in confinement camps, Solomon's brilliant and compassionate view of difference and Dretzin's visual interpretation of that book, along with a sensitive portrayal of several families' experiences, make for profound viewing. Like the book, the documentary should resonate for everyone because it's about family and love and the gnarly twists and turns of life, for those who might interpret difference as tragedy and for those who know that to hold both tragedy and joy at once is the ultimate expression of grace.

* Andrew Solomon and several of the cast of the documentary attended the screening and answered questions afterward. Here are a couple of pictures that Carl took:

More Three-Line Movie Reviews:

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 

Thursday, July 26, 2018


Henry turned twenty years old yesterday. He, like Oliver, doesn't have much to do with Sophie these days, yet the love is there. It's always been there. Sophie loves Henry so much that I can actually feel it.

I feel like writing off of this today, a day where everything is fraught with symbol.

I read this just now on the Paris Review website, thrilled that the French came easily to me:

Je voudrais vivre pour écrire. Non penser à autre chose qu’à écrire. Je ne prétend [sic] pas l’amour ni l’argent. Je ne veux pas penser, ni construire décemment ma vie. Je veux de la paix: lire, étudier, gagner un peu d’argent pour m’independiser [sic] de ma famille, et écrire.

They were written in 1959, in the diary of 23-year old Argentinean poet Alejandra Pizarnik. 

(I would like to live in order to write. Not to think of anything else other than to write. I am not after love nor money. I don’t want to think nor decently build my life. I want peace: to read, to study, to earn some money so that I become independent from my family, and to write.)

With news of a con-woman in what passes for the literary world these days, I'm staving off cynicism that the whole thing is a racket.  I had an encounter with her some years ago on Facebook. She made derisive comments about those who don't vaccinate their children -- something about morality. I objected and as I so often do after exchanges like that, receded. Wary.

Sophie had two seizures this morning before 6:00 am. Brief, yet. Yet as an operative word because -- you know -- a seizure is a seizure. There's a full moon coming, yet. It's all where you place a word. Yet, we are not supposed to attribute seizures to full moons.

Wednesday, July 25, 2018

We Will All Take Care of Us

A new podcast is up at Who Lives Like This?! and I think you'll find it intense and interesting. Jason and I talk with Josh Fyman whose daughter was diagnosed with Aicardi Syndrome when she was an infant. Aicardi is a seizure syndrome with a wide range of severity, and Josh's daughter is among the most severe. In and out of hospitals for much of her short life, often with life-threatening illness, she only began to maintain stability and health when the Fyman's decided to place her in a residential home.  Anyone who is a caregiver to a child with severe disabilities has thought about how to best care for their child, and the prevailing culture informs us that living at home is what is best for that child. What if it's not, though? What if the situation is dire enough that one is forced to make a wrenching decision to live apart from one's child? Josh speaks honestly and eloquently about his own family's decision. My preconceived beliefs about this subject were blown wide open, as was my heart.

Read more and get the link to the podcast here

It's a difficult subject -- maybe even the most difficult subject outside of death that we caregivers wrestle with nearly every day. It never goes away, actually, yet morphs into truly existential questions. Who will take care of her when I can't do it any longer? Who will take care of her when I die? How will I do this and for how long can I do this? Will I be able to afford to take care of her for the rest of her life and mine and what are the costs?

Here's the bottom line. We live in a country -- a world -- that pays short shrift to the lives of persons with disabilities. Where we live, even down to the actual state in this wealthy, enlightened country, determines the level of quality of our healthcare. We have laws to prevent discrimination against the disabled and to ensure their freedoms and dignity, but we are forced to be vigilant in defending those laws in an increasingly transactional world.

Anyone can acquire a disability or become disabled at any point in a life. Recognizing this is an important step in removing the fear of the Other. You know what I'm talking about.

What can you do to help? You can participate in our political system by writing and calling your representatives and holding them accountable to their disabled constituents, especially when leaders in the disability community give you the heads up. You can pay attention. You can reach out to disabled persons in your own communities, get to know them and include them.

You can listen to these podcasts and stories, help support caregivers' efforts to make the lives of their children and families better. You can watch this astounding video that smacks of hard truths.

Friday, July 20, 2018

Parenting, No. 785

I went to visit Henry this afternoon at his new job. He's a server at a funky little place in Venice. Maybe I shouldn't use the word funky anymore since very recently, like yesterday, Oliver told me that it was embarrassing. Maybe he didn't use the word embarrassing, but he repeated the word funky in a voice that I guess is mine, at least the voice that both sons use when they imitate me, and while I imagine there's fondness in the teasing, it still takes me by surprise that I'm considered painfully uncool and old. Both brothers have jobs this summer (Oliver actually works nearly full-time all year round, recently opened a Charles Schwab trading account and has bought stocks -- no joke), and I'm very proud of them. It's been a long time since I've included them on the old blog, and just now I was looking for past posts in a kind of nostalgic way, and boy -- some of those posts were damn funny. I sat down at the bar of this little restaurant where Henry works, next to a younger woman who was drinking a glass of wine and eating a salad. Since I'm the chattiest person on the planet and the proudest, most embarrassing mother, I introduced myself to the woman and told her that Henry was my son. She told me that she had a four year old son, and that he was in a challenging stage. I told her that I remember well those challenging stages, but I found those times to be more physically challenging and the teenaged and young adult years more emotionally challenging. I didn't tell her this story, but Reader, I 'll tell you. Just the other night, we were sitting at the table eating dinner -- takeout Vietnamese because making dinner in the summer is just not my thing -- and the usual conversation between The Brothers began, and this entailed arguing about whether LeBron James or Michael Jordan was the greatest basketball player of all time and then something about the baseball player Mike Trout and Teslas and Elon Musk and then you're an idiot and you're an asshole and you don't know what you're talking about, and just when I was wishing that one day we would have a conversation about -- let's say -- the greatest living poet or how much better a film-maker Fellini is than Tarantino, Sophie had a large seizure that I just know was a result of the anger in the air and maybe even how boring her brothers' arguments can be (Sophie and I are the same about these things, I am certain, but she seizes instead of dying a little inside at the general clusterfuckery). I probably said as much, because now that they're 17 and nearly 20, I don't bite my tongue as often as I might have when they were younger. Enough is enough.

But here's the thing. Those boys jumped up and into action helping me to help Sophie, and I realized that I am, perhaps, the luckiest mother in the world.

Wednesday, July 18, 2018

A Mad Victim of Our Own Brainwashing

That was just a little chalk drawing on a path through a beautiful wood in a park somewhere in rural Washington State.

I wasn't going to write anything about it, but the Pacific Northwest certainly rivals the South (where I grew up and which, arguably, gets a whole lot more flak for its unsavory racists than other parts of the country) in evidence of racism and white supremacy. Yeah, I know the whole Pacific Northwest is one of the least diverse areas of the country, and I know that racism in overt and covert forms exists everywhere, in every part of the country, but as the white part of an interracial couple, I'm being educated in ways that I, in my privilege, have been -- let's be honest -- blind to for most of my adult life.

The Bird Photographer and I saw the evidence nearly everywhere we went, and given the general tenor of the times we live in -- well -- we didn't mess around when we saw it. We walked out of a steak house/diner/truck stop and toward our car one evening, passed a small group of older folks standing together at their pickup truck. One of the men was opening what looked like birthday presents, and they spoke openly of Trump, how much they agreed with him, how much they liked him. I know this because I walked right by them and rolled my eyes in my mind, and then I noticed that on the top of the present that the man was opening at the moment was a rolled up Confederate Flag.

I hear a lot of people crying out and writing how fucked we all are! and how this is so unbelievable! and I'm as stressed as the next privileged white liberal person, but let's face the facts. This great country -- and it is great in many ways -- has an ugly core, a rotten core, and the only way to get rid of it is to uncover and face that rotten core, to acknowledge that truth and to speak, own and face the truth relentlessly, no matter how uncomfortable it makes many of us. I think that might mean acknowledging and facing our own darkness, but it also might mean erasing swastikas chalked onto bucolic pathways or speaking up and often, even to those standing in a parking lot with an old, ugly flag. It means opening our eyes to see and using our ears to listen. I wish I'd done both, but I did neither, and I regret that.

“The American Negro has the great advantage of having never believed the collection of myths to which white Americans cling: that their ancestors were all freedom-loving heroes, that they were born in the greatest country the world has ever seen, or that Americans are invincible in battle and wise in peace, that Americans have always dealt honorably with Mexicans and Indians and all other neighbors or inferiors, that American men are the world's most direct and virile, that American women are pure. Negroes know far more about white Americans than that; it can almost be said, in fact, that they know about white Americans what parents—or, anyway, mothers—know about their children, and that they very often regard white Americans that way. And perhaps this attitude, held in spite of what they know and have endured, helps to explain why Negroes, on the whole, and until lately, have allowed themselves to feel so little hatred. The tendency has really been, insofar as this was possible, to dismiss white people as the slightly mad victims of their own brainwashing.” 
James Baldwin, The Fire Next Time


Sunday, July 15, 2018

Writing, Respite and Denali

I'm still here in beautiful rural Washington. There's not much to do but relax and listen to the birds, putter around the beautiful house, wander outside and chat with the goats, read novels (Tommy Orange's There, There and Ottessa Moshfegh's Eileen), read some poetry (Marie Howe's Magdalene), eat a plum, eat a peach, let a corner of a chocolate bar melt in my mouth, suck on a Tootsie Pop and gaze at the Bird Photographer.

I haven't written much, but I've arranged and re-arranged my hundreds of pages into a sort of order. It took hours and hours to do that much, but a structure is finally, literally, at the tip of my fingers. My plan is to finish up in the next day or so and then, when I get home, re-type the whole lot and send to the editor as a rough -- extremely rough -- draft.

The Pacific Northwest in the summer is perfection. It was here -- or up in Victoria -- where I spent a week by myself only four years ago, a recipient of the magnificent Heather McHugh's organization, Caregifted. That week changed my life and opened me to the possibility of and hope for more respite from the life of caregiving that, while enormously rewarding and filled with grace, has also drained me of myself or the essence that keeps me vital. I realized then how important it was to seek respite in whatever way I could, to open myself up to the possibility of replenishment and to work just as hard to get that as I do to take care of my daughter. While I am aware of the enormous privileges I've been granted that others just do not have, I also remember the nearly twenty years without significant respite. I remember what it was like to have no hope for it.

We caregivers must get back to ourselves as if our life depended on it because it does.

photographer: Carl Jackson

Listen to the latest Who Lives Like This podcast -- a rousing discussion of nurturing the self with Paige Figi, the director of Coalition for Access Now and the mother of Charlotte of the famous Charlotte's Web cannabis oil. Jason and I interviewed Paige just a week before she climbed Denali, the highest peak in North America. Here's the link:

Who Lives Like This?!

Yeah. I know. Not all of us will climb Denali, even if we desired to do so. Yet, still, there's joy to be had no matter how you choose to find yourself.

As my friend, writer Chris Rice said the other day, Your book is your Denali.


Tuesday, July 10, 2018


I've traveled up to rural Washington to write for a week and wander around with the Bird Photographer. I was invited to this bucolic setting by a new friend, the artist and writer Mimi Feldman, who asked me over wine one night, What's up with your book? I probably sighed and rolled my eyes and made some sort of excuse or another, and she said, Why don't you come up to our house while my husband and I go on a road trip?

So I did.

Mimi and her husband Craig have created this incredible home in the middle of rural Washington. They have three goats, a cat, a barn with a studio that Craig built with his own hands, and views of rolling green and heather-flecked hills and regal pine trees. The home is filled with collections from their travels arranged artfully on beautiful, warm furniture. Their art hangs on the walls. Craig is an extraordinary abstract painter and carpenter. Mimi is an extraordinary painter as well, but I met her through writing and our shared experience of mothering and extreme parenting. She has written a magnificent book about her experience raising a son with schizophrenia. Until it's published, you can read her writing and see some of her art at her blog, The Asylum of the Universe. It will take your breath away. She's a badass.

Last night we talked about books and Bob Dylan and caregiving and men and women and children and life, the whole full catastrophe. This morning, Mimi and Craig drove off on their road trip adventure. Carl and I settled in and then wandered around a bit.

Now I've got to write.

Sunday, July 8, 2018

Sunday Morning Three-Line Movie Review

I didn't know anything about this movie except that it looked very cool and very funny in the way that young people are very cool and very funny only some of the time, but this movie was very cool and very funny the entire time, not to mention wildly entertaining and perhaps even brilliant. Watching it was like taking a ride or, rather, being taken on a ride before which you've been given some perfect drug that enables colors to be brighter, music to be more rhythmical, and people's eyes to be like portals to their souls, and then it illustrates the world as it is now, in this moment, even more surreal than you might have already thought it to be. Boots Riley has made a movie that's both surrealist capitalist nightmare and comedy, and he does it in a way that makes white people squirm because, in the end, it's about that -- us.

More 3-Line Movie Reviews

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 

Friday, July 6, 2018

Who Lives Like This?! Podcast (with no "f*^ks" given)

Ted Lyde

Something about the word fuck and Facebook and algorithms and something something something, but we had to change the name of the podcast to Who Lives Like This?!! which is, actually, the original question screamed by young Oliver back in the day. Since we took the word fuck out of the title, though, our Facebook visits have multiplied considerably, so I guess we've succumbed to hive mind/Big Brother Facebook or whatever epithets you want to hurl at social media. Social media. It can be immensely good, you know, connecting those who ordinarily couldn't connect. So spare me how much you hate Facebook -- it's provided an immense service to many people in the disability world.

Just don't say fuck.

This week's podcast is a conversation with comedian Ted Lyde. Ted is hilarious. Some of you might remember him recording a conversation with me on his own podcast which is, ironically, called Learning Not to Swear.  He's a sweet man, too, and a devoted father to his two children, one of whom has special healthcare needs. Fathers of children with disabilities are so rarely applauded or even discussed, but Jason and I intend to talk to many of them. Ted spoke of his devotion to his family and to what it means to sacrifice one's personal needs and or dreams. The conversation was so stimulating for me because it was two fathers talking. I was surprised -- to tell you the truth -- surprised by their candor and the ease they had in expressing their vulnerabilities. I'll wager that caregiving in general is the great equalizer as far as breaking you down and forcing you to come to terms with who you are and who you want to be.

It's good stuff, as the young ones say. Or maybe that's the old ones.

Please listen to the podcast, subscribe to it, read our blog, check out the growing list of resources, share the info, review us on iTunes and do your thing on social media. We're not making money (at least, yet) with this podcast, but we are building a community. We're talking, crying and laughing together. We need you to join us, whether you have a child with disability or not. You will probably become a caregiver one day or be cared for yourself --

Here's the link to the website. From there you can access the podcast either through iTunes or SoundCloud.

Thank you for helping us to share Who Lives Like This?!

Wednesday, July 4, 2018

It's Not Who She Is

That's a spooky picture, isn't it? Sophie's the white-capped one in the background, lying in her bed. She was wired up today with an ambulatory EEG -- no reason in particular, although I'm interested in seeing whether she's had a return of the dreaded ESES. I think I wrote about ESES on this little blog back in the day -- Sophie had it when she was ten years old and again when she was fifteen. Yet, even as I type it out, I'm doubting that she's had a recurrence. It's not in my gut.

So, ye olde EEG. I remember when the EEG was ink on paper, the electrodes were glued on with an electric gun thing that made a horrible noise, and you needed the same gun and a foul-smelling ointment to get them off. The tech would fiddle with the dials as the ink jets clicked across the paper. It's all a blur, those early days -- a blur into darkness. They still use glue and colored wires that map the brain and record its activity (or fuckery, in Sophie's case) in a little box that you can sling over your shoulder. It's called an ambulatory EEG.

EEG is short for electroencephalogram, in case you're an initiate into The Great Mystery of the Brain. The EEG records brain activity in a moment of time, and in this case will record those moments of time overnight. If one occurs, it will "capture" a seizure.  It also shows the “background,” the non-epileptiform activity or changes, the slowing and spiking of brain waves. Whether Sophie has had a bazillion or no seizures clinically (to the eye), her background has always been abnormal. That’s it. 

Despite the technology, it’s not a complete picture of Sophie’s brain. 

It’s not who she is. 

Every now and then I get a feeling of what it feels like to be accepting. The other night I got Sophie out of her bed where she'd been lying most of the day having had some seizures. I fed her some mashed pinto beans and avocado, and her mouth worked eagerly to chew and swallow it. These are small things, true, but I knew what it was to count them as something less than momentous and more like flow.

Sunday, July 1, 2018

On "Civility"

Yesterday, I marched in downtown Los Angeles against the Trump administration's policy to separate immigrant children from their parents at our "border." I joined tens of thousands of other Los Angelenos on a beautiful southern California afternoon in protest of our government separating thousands of children in what appears to be a systematic form of child abuse and crime against humanity.

America is not a great country at this point, if it ever was, and anyone who's arguing for more civility is deluded and naive. My friend, the great writer Lidia Yuknavitch said the other day on her social media account that civility has always been determined by those in power. 

Civility has always been defined by those in power.

We have babies in cages on our "border" (not to mention the dismantling of environmental laws to protect the planet, the specter of women losing reproductive rights, the vilifying of the press, the collusion with world dictators, the Muslim ban, the racism that permeates literally every single directive from the POSPOTUS and his enablers) and are being told, even by those on our "side" (Bernie Sanders, Nancy Pelosi, Chuck Schumer, etc.) that it isn't "American" to deny someone like the lying press secretary a peaceful dinner in your restaurant. This doesn't settle with me -- and not the so-called lack of civility.

What, exactly, does civility mean, and how has it been defined in this country from its very inception?

These aren't rhetorical questions but, rather, real ones that are if not tormenting me than at least filling up my mind to the extent that I feel near anguish. The anguish comes, I think, because the situation at hand calls for so much self-reflection -- so much probing of one's interior, one's ego, one's impulse to be right. I say one's because I imagine it's true for a lot of people, particularly those of us who are privileged (and I don't mean economically; I mean white). What does it even mean to be a good person, to act with civility when the very definition of the word has been determined and defined by those in power?

The center does not hold.

I feel the same way when I read arguments against what white men call "tribalism" or "polarization." Honestly?

I got into an argument on a friend's thread on Facebook -- not with the friend but with one of his "friends." I've sparred with this guy before, and while I'd like to make him irrelevant by not even engaging with him (his comments are nearly always dull and condescending with that overwhelming sarcasm and fake irony that marks the intellectually lazy), I'm learning through the engagement what it takes to be truly disobedient. Or maybe what it might take to be truly disobedient to the mores and definitions of civility that not only our ancestors but also our contemporaries demand.

Again, I'm just thinking about these things. I am certain of very little.

I'm a person who has trouble even uttering the word fuck, mainly because of the way I've been brought up, yet in uttering the word fuck I alienate even my own parents whom I love.

The person with whom I sparred on Facebook responded to my call for civil disobedience by asking whether I was prepared to be violent against my fellow citizens because being disobedient might cause a schism like we haven't seen since the Civil War. He asked, "Prepared to defend and even harm others if need be?"

I answered, "I will personally not commit acts of violence against any human beings, but I am prepared to stand against anything. That means anything. Absolutely. There are plenty of examples of peaceful and resolute civil disobedience across history. It's not a matter of "winning" or "losing." I align with those people. When and if my rights as a woman are compromised as they very well will or might be very soon, I will stand against that and for other women, minorities and the disabled."

I added, "The path to change is seldom polite. And the definition of civility is generally set by those in POWER."

The guy responded, "The definition of civility in this country was originally established when the first inhabitants began following the codes and mores of western civilization, along with the principles of the rule of law. Men opening doors for women, pulling their chairs out. You know that kind of demeaning, misogynistic behavior ya'll are so eager to abolish in favor of...I don't know what. Hip hop?"

If I had one, I'd rest my case. 

Mull on that, Reader.

 What Kind of Times Are These
By Adrienne Rich
There's a place between two stands of trees where the grass grows uphill
and the old revolutionary road breaks off into shadows
near a meeting-house abandoned by the persecuted
who disappeared into those shadows.

I've walked there picking mushrooms at the edge of dread, but don't be fooled
this isn't a Russian poem, this is not somewhere else but here,
our country moving closer to its own truth and dread,
its own ways of making people disappear.

I won't tell you where the place is, the dark mesh of the woods
meeting the unmarked strip of light—
ghost-ridden crossroads, leafmold paradise:
I know already who wants to buy it, sell it, make it disappear.

And I won't tell you where it is, so why do I tell you
anything? Because you still listen, because in times like these
to have you listen at all, it's necessary

to talk about trees.



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