Friday, June 29, 2018

Friday Evening Three-Line Movie Review

As I sat and watched the documentary RBJ about the life of Supreme Court Justice Ruth Bader Ginsburg, I couldn't help but think about the dead journalists, the babies in cages, the piles of black bodies dead or in prison, the tainted water of Flint, Michigan, the taxes in the form of tariffs, and, of course, the reproductive rights of women, particularly those who are poor or minorities. The movie demonstrates with startling clarity how far "we've" come, because of this woman and her fight for equality, and it also underscores how much is at stake and how far backward we're moving with the despot on the throne and the same old white men calling the shots. The movie is worth going to, though, if you're in need of some galvanizing, if you want to see a fierce woman fight for everything that is good, partnered with a man who supported her every step of the way, and you wonder how the hell we're going to carry on her legacy with so much against us, because WE ARE, we have done it before and we will do so again, and we owe it to her for helping 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 

Thursday, June 28, 2018


Sophie got a new wheelchair yesterday, thanks to her private insurance which is governed by the Affordable Care Act's protection of pre-existing conditions and her qualification to receive Medi-Cal which helps to pay for any out-of-pocket expenses. I am filled with gratitude for these things and well aware of my immense privilege, particularly as these things are not afforded to everyone and are now under threat for everyone.

The week after Trump was inaugurated and became the POSPOTUS in 2017, my therapist (I know, LA, and all that stuff) gave me two pieces of paper stapled together, titled Twenty Lessons from the Twentieth Century.* Written by Tim Snyder, an American historian of Central and Eastern Europe and the Holocaust who is a professor at Yale, the list draws on the experience of those who lived before, during and after the rise of Fascism in Germany and Communism in the former Soviet Union. I think we're well past the rise part in Trump's America and into the fascist part, so I'm reviewing the lessons and was struck, especially this morning, by the first one:

Do Not Obey in Advance
Much of the power of authoritarianism is freely given. In times like these, individuals think ahead about what a more repressive government will want, and then start to do it without being asked. You've already done this, haven't you? Stop. Anticipatory obedience teaches authorities what is possible and accelerates unfreedom.

Despite the ease of it (for those who are privileged like myself), caving to despair or cries of how fucked we all are, we just can't. I know that I have "obeyed in advance" many times during my life, have handed power or agency over to not just institutions but to people in my family and even people that I love. Part of that is due to deep cultural influences, to patriarchal systems, to my own apathy or cynicism. It's a slow process toward acknowledgement of that anticipatory obedience, even in my privilege, yet having a child with severe disabilities has pushed me along that path of self-awareness and agency a bit further. 

When I heard yesterday that Justice Kennedy was retiring, handing the POSPOTUS the chance to ensure a draconian legacy of conservatism on the Supreme Court, I did feel despair, particularly about the threat to women's reproductive rights and the Affordable Care Act's protection of those with pre-existing conditions. My despair shows itself in biting humor which isn't funny at all. I imagine Sophie driving a car, proving her "worth" in lieu of getting "free hand-outs" through Medi-Cal, yet unable to get insurance to pay for the drugs and treatment of her life long epilepsy. I imagine her getting raped by some free enterprise private contractor in an institution for the handicapped and not able to have an abortion because it will be illegal. I crack sick jokes because it helps me to cope and perhaps jerks people out of their malaise and into action. 

Here's the thing.  I am thinking that we're entirely not fucked, that we're actually in a fight and that we have to stay in it. We have to stay awake. We can't succumb to despair. We can't obey in advance.

It will be me, maybe, actually driving that car with Sophie in it and any woman or women who needs to go to a state that still guarantees their reproductive freedom.** Sophie is very quiet and capable of holding great secrets. I am very loud.

*  You can easily look up the lessons, but I typed them out on the blog HERE
**Here's a list of things you can do if or when Roe v Wade is overturned.

Tuesday, June 26, 2018

Elena Hung and Little Lobbyists on WhoTF Lives Like This?! Podcast

That's Elena Hung and her young daughter Xiomara. They are powerful women, and you have the chance to hear all about the work they are doing to improve the lives of children with complex medical needs. You'll also hear about how Elena does what she does -- she's an immigration lawyer, a mother, a caregiver and the founder of Little Lobbyists.

Please listen to our podcast wherever you listen to podcasts or click on the button on the accompanying blog by going here:

Check back on Mondays for new podcasts -- Jason and I have so many to share with you! I hope that you'll share the links with others, too.

Monday, June 25, 2018

The Tiny Little Mother MInd™ and the FDA and Epidiolex

Today, the FDA announced its approval of GW Pharmaceuticals' Epidiolex, a cannabis-based medicine for epilepsy. As I've written countless times here on this blog, I do not begrudge those who want to try this concoction a fair chance to try it. If it works, fantastic. If it doesn't, you know where to go and what to do. What is that? You will probably need to jiggle around your CBD and add THC or one or more of the other cannabinoids. You will embark on a twisty path to healing. I believe this with all of my heart, but it's not a religion. It's fact and science and experience-based.

The reason the tiny little mother mind™ is writing this update is because of the following announcement by the FDA that accompanied their approval:

FDA is deeply concerned about the proliferation of unapproved CBD drug products marketed using unproven medical claims to diagnose, cure, mitigate, treat or prevent serious conditions and we’ll continue to take action against such products.

Cue the revolution. That's right. If the FDA or Big Pharma takes away our freedom to make, use, buy or otherwise give our cannabis medicine to our children or ourselves, there will be a revolution.

Epidiolex will cost between $2,000-$6,000 a month. If you have any experience with manufacturers and insurance companies and how drugs are priced, go figure that shit out. Contemplate that. Read my post from a few weeks ago where I discuss the difference between Epidiolex and the cannabis meds that many of us currently use.

My tiny little mother mind™has said it before over the five years that I and my compadres have been doing this, that there's a swimming pool here and plenty of lanes. Initially, we told the docs and anyone who would listen that they should get on the train because it was leaving the station. We were mocked and humiliated -- literally -- but we didn't give a flying foo and proceeded to save each other's children. We were told that we couldn't discuss cannabis medicine with our neurologists. We were reported to Child's Protective Services. We were obstructed over and over. That did not stop us.

Now, I'm telling you that Big Pharma should use their lane and not infringe on ours or take over the entire pool. 

I mean it.

*This has been a Public Service Announcement

Friday, June 22, 2018

The Grit and Grace of Caregiving

My friend and fellow caregiver, Jason Lehmbeck, and I have launched our passion project, a podcast about and for caregivers of children and young adults with special healthcare needs and disabilities. It's called WhoTF Lives Like This?! and is available anywhere you listen to podcasts. We've been working on this for more than six months, and I am just so excited to tell you about it. We'll be interviewing the most amazing people who do the most amazing things with their lives -- both publicly and privately. We'll be talking to men and women who care for their children with special healthcare needs and disabilities, to siblings and to those who support us -- the doctors, educators, therapists, etc. working to help and make our lives and the lives of our children better.

I hope you'll subscribe to the podcast, check in regularly at the website to learn about the guests, interact with us on our Facebook page and in the comment section or otherwise get in touch with your suggestions and ideas. If you'd like to be a guest, you know where to find me!

You can listen to the teaser which gives you a good idea of what we'll be doing on the podcast, and we've also launched the first episode where Jason and I interview one another in much the same format that we will be using going forward.

Please help us to share this resource with all those who might be interested. This is a podcast for everyone. While the podcast pays particular attention to the lives of caregivers, their grit and grace is relevant to all human beings, and just like we have found, our work with and love for these most vulnerable of our fellow humans will expand your own heart and view of the world.

You can access the podcast at our website HERE.

Please subscribe! Leave a review, too! Thank you!

Wednesday, June 20, 2018


Venice Blvd.
Los Angeles, California
June 20, 2018

Do you remember as a child getting separated from your mother in a public place? I was with my mother shopping one day and probably in a world of my own, in my head, day-dreaming as she walked through aisles of clothes racks. I can't have been more than six or seven and perhaps even younger. At some point I grabbed the hand hanging in my view and looked up simultaneously, thinking it was my mother. Except it was not. It was a stranger. I remember that moment of terror -- only a moment because the woman whose hand I'd grabbed looked kindly at me, and my own mother was in sight -- like it was yesterday. A moment of terror. At being separated from my mother.

Is there anything else to do but think about, agitate about, write about and above all, ACT ABOUT these children separated from their parents at the United States border. Despite the POSPOTUS' rescinding of the policy he and his henchman initiated and the band of thugs who have carried it out, it's unclear whether hundreds, if not thousands of these babies and children will ever be reunited with their parents.

Babies in tents.

Where are the girls?

I'm making all the POS folks who supported this policy irrelevant in my mind. I'm not responding to their inane, inhumane arguments.  Those who believe America to be a Christian nation. The vile human who made a joke about a child with Down Syndrome being separated from parents. I'm brushing them away.  Those who compare the people of Mexico and Central America to vermin. Be gone.

And those who invoke the great peace leaders of the world and admonish us not to be angry, that it's all about love -- step aside. The great peace leaders were plenty angry, and they used their anger in constructive ways to bring peace. You step aside, too, or step up.

Here are some things we can do:

What You Can Do Right Now to Help Immigrant Families Separated at the Border

Photo: John Moore/Getty Images

Monday, June 18, 2018

When Home is the Mouth of a Shark

Artist: Eleazar Velazquez

Mary Moon at Bless Our Hearts has written a magnificent post about the current POSPOTUS' administration's draconian policy of separating children from their parents at our borders. She included this poem by Warsan Shire, a British poet born to Somali parents in Kenya, East Africa. Such is the power of poetry that I've included it in my own and hope that everyone will read it and pass it along. I know that many of you reading my blog deplore my politics, my language, my view of this country. I hope you read it, too, and think deeply about it and about your own complicity in supporting the man you've voted into office and what he's done to this country.


no one leaves home unless

home is the mouth of a shark.

you only run for the border
when you see the whole city
running as well.

your neighbours running faster
than you, the boy you went to school with
who kissed you dizzy behind
the old tin factory is
holding a gun bigger than his body,
you only leave home
when home won't let you stay.

no one would leave home unless home
chased you, fire under feet,
hot blood in your belly.

it's not something you ever thought about
doing, and so when you did -
you carried the anthem under your breath,
waiting until the airport toilet
to tear up the passport and swallow,
each mouthful of paper making it clear that
you would not be going back.

you have to understand,
no one puts their children in a boat
unless the water is safer than the land.

who would choose to spend days
and nights in the stomach of a truck
unless the miles travelled
meant something more than journey.

no one would choose to crawl under fences,
be beaten until your shadow leaves you,
raped, then drowned, forced to the bottom of
the boat because you are darker, be sold,
starved, shot at the border like a sick animal,
be pitied, lose your name, lose your family,
make a refugee camp a home for a year or two or ten,
stripped and searched, find prison everywhere
and if you survive and you are greeted on the other side
with go home blacks, refugees
dirty immigrants, asylum seekers
sucking our country dry of milk,
dark, with their hands out
smell strange, savage -
look what they've done to their own countries,
what will they do to ours?

the dirty looks in the street
softer than a limb torn off,
the indignity of everyday life
more tender than fourteen men who
look like your father, between
your legs, insults easier to swallow
than rubble, than your child's body
in pieces - for now, forget about pride
your survival is more important.

i want to go home, but home is the mouth of a shark
home is the barrel of the gun
and no one would leave home
unless home chased you to the shore
unless home tells you to
leave what you could not behind,
even if it was human.

no one leaves home until home
is a damp voice in your ear saying
leave, run now, i don't know what
i've become.

Warsan Shire

I agree with Mary when she writes, 
wish that every ignorant, racist asshole who claims that "illegal immigrants" who try to enter our country to suck the tit of the Big American Eagle Good Life Without Earning It deserve whatever happens to them up to and including having their babies snatched from them (that'll teach 'em!) could be forced to read this poem over and over until they get a molecule of understanding and empathy. If that's even possible which I doubt. 

We the people need to stop this right now. If we don't, I imagine that we, too, the privileged of this country, will be leaving our own home -- that damp voice in our ear saying leave, run now, we don't know what Amerikkka has become.


Saturday, June 16, 2018


Last night we had to unexpectedly put our beloved goofy dog Valentine to sleep. The night before last, I was up most of the night with her, but she wasn't in pain -- just acting weird and restless. Early Friday morning, I had to take Henry to get his wisdom teeth removed, and when we got home in the afternoon, Valentine was still acting weird, and her stomach was distended. I took her to the vet in the early evening and learned that her stomach had twisted or turned or distended, that surgery might be the only option with little guarantee that she'd make it through. It was so shocking and fast. I called Oliver, and he came over to the vet's office to be with her. She was really Oliver's dog. He was barely three years old when we got her.

We are so very sad.

We got Valentine as a puppy when she was six months old. She was fourteen in April and lived a long, extremely healthy life. She might have been the happiest, goofiest dog in the universe. We called her a love whore. Everyone who met her would say, "Valentine really loves me!" We didn't have the heart to tell them that she really loved everyone. She loved the Oliver the most, though.

Not much more to say than that. Or this:

Thursday, June 14, 2018


So, tomorrow (Friday) marks the end of the second week of Sophie's recovery from her wisdom teeth extraction, and it appears that she's turned the corner. My poor baby girl suffered so much for so many days, but she's rallied and is eating again, has stopped having so many seizures (sometimes more than six, seven a day), can walk a few steps, has great eye contact and has even smiled. Knock three times. 

I am relieved. I am so very grateful.

I'm also a wreck, the proverbial ashes after the Phoenix has risen. I've probably made that cliched analogy 5,432,897 times in the last twenty or so years, but it's the damn truth. I am wasted. Sleep-deprived. Out of my gourd stressed. One of the highlights of the fortnight (how often do you hear the word fortnight these days?) was the early morning that I staggered into her room to check on her and came upon a scene straight out of a horror movie. There were ANTS marching along her windowsill and across her bed and onto her face and into her ears and mouth and nose and braids. I'm not kidding you, Reader. Hundreds of ants. She was asleep and stayed asleep (I imagine she was not just asleep but post-ictal after having a silent seizure that I wasn't aware of), even as I frantically brushed the ants off of her, stripped her, lifted her up and lay her on the floor, ants crawling all over me, then, as I ran to the kitchen, grabbed a bottle of Windex with vinegar and started spraying down the windowsill and the bed and then stripping the bed and rolling everything up and bringing it to the washer and then running to the hall closet, grabbing the vacuum cleaner, climbing onto the bed and vacuuming everything. Sophie slept on the floor the entire time. It was about 5:30 am, and while I thought about waking The Brothers, I decided not to -- they'd probably only stopped playing a few hours before that dreadful game that every kid is playing, and let's just say that there are some things, some entirely insane moments of this caregiver life, that I want to spare them from remembering. When I was done vacuuming, I picked up Sophie from the floor (yes, I picked her up in a kind of squat that you see those Olympians do with barbells) and carried her to my bed. Then she started to have a seizure, and I effectively dissociated in a similar fashion in my mind as I'm doing here on the screen.

I can't remember if it was that night/early morning or another one that I called my friend Sandra in New York and wailed, but she helped me as did you and you and you (you know who you are). This community is everything. Thank you.

So, what else?

I can't go without mentioning the absolute shitshow happening at the border of our country. Would that we've reached a turning point today when the AG actually quoted from the Bible to justify the practice of separating children from their parents and That Sanders Woman reiterated the Bible to justify the fuckery. I'm not quoting any more Bible verses here except to repeat what my son Henry yelled when he heard about it. You could probably pick out any Bible verse and twist it enough to say that Jeff Sessions is a POS. Amen, son.

It should now be the turning point where we take to the streets and storm the WalMart where those boys are housed, help them out and throw the POSPOTUS and his Mafioso into it with all their supporters and enablers to live in to the end of their days.

And where are the GIRLS?

Honestly, Reader, can you even make up a story more Amerikkkan than illegal brown children being housed in a former Walmart -- a shitty megaMcstore, an altar to money and exploitation that has destroyed communities, sells mostly processed food and crap to the suckers who shop there because it's cheap and whose owners are revered for their wealth? That the Powers That Be are claiming God has ordained this -- well -- my god.

Call your representatives and demand that this stops NOW. 

Click here for other things you can do NOW.

Monday, June 11, 2018

The Symbolic Figure of the Course of Human History

William Blake,
The Symbolic Figure of the Course of Human History
described by Virgil,
 illustration for The Divine Comedy
by Dante Alighieri (Inferno XIV, 94-119) 1824–27, 

Inferno XIV, 94-119. Dante and Virgil, in the third ring of the seventh circle, come across a blood-red stream. Dante explains that the rivers of Hell are formed by tears falling from the giant old man encased in the mountain of Ida on the island of Crete, the centre of the known world. For Dante this figure embodied the course of human history. His head is of gold, his arms and breast of silver, his lower abdomen brass, and below that he is of iron save that his right foot is of clay; this denotes the decay of the world from the Golden Age before the Fall to Dante's own time, the clay foot representing the degenerate church. Blake endows the figure with a crown, an orb and a sceptre to show that in his view the decay of the world was the result of political oppression - kingship and tyranny.

Why is our Dear Leader being celebrated for the unprecedented meeting with North Korean Dear Leader when the North Korean has been designated a war criminal by the International Bar Association War Crimes Committee, along with the UN? According to that report from several years ago, Kim Jong-un has committed all but one of the 11 crimes against humanity:

  1. Murder
  2. Extermination
  3. Enslavement
  4. Forcible Transfer
  5. Imprisonment
  6. Torture
  7. Sexual Violence
  8. Persecution
  9. Enforced Disappearances
  10. Other Inhuman Acts
Among the abuses reported are these: "starving prisoners are regularly executed when caught scavenging for food; abortions being performed by injecting motor oil into the wombs of pregnant women, according to a former North Korean army nurse; and firing squad executions of prisoners who attempt to escape."

This article in The New York Times from today, June 11th, reports in excruciating detail the crimes against humanity.

Yet, we must watch the POSPOTUS smile and joke with the photographers about making him "look thin" and "perfect" as they line up behind chairs of an impeccably set table. We must listen to his supporters crow in ignorance at his depravity. We must look at headlines of this unprecedented meeting.

What is happening? I have been wrapped up in myself, in my family, pushing these things to the back or down, down, down. I practice tonglen. I breathe in suffering and breathe out love.

What is happening?

We cannot normalize this. We have to resist.

Is it wrong to hope for lightning, for some act of a god to render justice?


Sunday, June 10, 2018

Sunday Morning Three-Line Movie Review*

I, like millions of other children who grew up in the late sixties and seventies, loved Mr. Rogers with a quiet intensity, and while I've always attributed that love to how calm the show was, how devoid of the frenzy of the other children's shows (I was a rather serious child who disliked cartoons and all that yelling and banging), after watching Morgan Neville's beautiful documentary Won't You Be My Neighbor? I'm thinking it was more because I knew on some deep level that Mr. Rogers loved me. The documentary spends little time on Rogers' life and more on how he drew from his experience in child development and a deep spirituality (he was an ordained Presbyterian minister) to shape an inimitable show that celebrated and honored true human emotions without judgement. I teared up several times in the movie, particularly during the parts that demonstrated his love and attention toward children with disabilities and those of other races, and I left the movie wishing that he were still alive to shore us up in these terrible American times.

*I used to write a Saturday Three-Line Movie Review and decided tonight to revive it on Sunday mornings, particularly if I've seen a movie (I don't go nearly as often as I used to). You can read other Three-Line Reviews here:

More 3-Line Movie Reviews

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, June 8, 2018


I had a massage last night in a weird little Thai parlor in Koreatown. The place is on the second floor of an ugly strip mall, right above the Very Very Rice Cake Studio and just past a pool hall. The pool hall is always open and reeks of smoke. The lights are bright, even in the middle of the afternoon, and the place is filled with Korean men. I like to watch them when I walk by, watch them chalking their cue sticks, watch them line up the balls on the green velvet. I played pool sometimes back in college, back when you could bend over the table and be certain someone was looking at you, at your ass, in that way. 

These days, just to get through them, I fantasize about running away, being another person. A
famous designer, Kate Spade, my age, died by suicide this week. She hung herself on her bedroom
doorknob. I thought about this off and on, all day yesterday. Then this morning I woke to read that beloved Anthony Bourdain had hung himself, too. I met him once in New York when I worked on the line of a famous restaurant. Life as a line cook in New York City in the early nineties was exactly how he described it. Today I don't know what to think, but I know how to feel, and I feel sad. Utterly sad. The whys and the hows and the rest of it. All the stuff about connection and love and staying kind. 

I don’t ever fantasize about killing myself, but I do wish I could disappear. Walk away, start over, be free. I’m aware that this is ridiculous, that if I were to end up somewhere in, let’s say, New Zealand, I’d rue what I’d done. I’m not trying to minimize Kate Spade's despair. Or Anthony Bourdain's. It’d be obscene to say that I relate. 

Outside the massage parlor is a little plastic stool. On top is a paper plate that has an orange, a cookie and a small glass of water with a flower in it. I thought maybe someone had left their snack there, but Carl said that it was an offering. Cool, I thought, and I automatically felt more peaceful. We walked in, got settled into the blue lounge chairs, put our feet into the plastic buckets of warm water that two women placed in front of us. I took off my glasses and closed my eyes. Despite the strip mall, the place is peaceful. The massage therapists are all Asian, both male and female, but they range in age. One time I was pummeled by an ancient crone who seemed to know all my secret places. There’s a place on my arm, the part that sags, that I know is soft because my Italian grandmother's was as well, that place where I ran my hand as a child just to feel it sway, and when the Thai masseuse touches mine, I can feel my throat back up with tears.

It was a grueling week with Sophie. She had wisdom teeth surgery last Friday which
triggered an unbelievable number of seizures. She can’t talk or express herself or tell me if she’s
in pain, but she can seize. One night she had more than seven of them, in a row, and it’s one of
my secrets that while most people would have taken her to the hospital or at least called the
neurologist, I toughed it out. It’s a secret because it sounds crazy, maybe even irresponsible.
Caretakers of children with seizure disorders have these kinds of secrets. Sometimes we count
only on ourselves.

There’s something about massage, like acupuncture, that gets me going. I have a routine when I
go – what I’m going to think and whom I’ll think about, in a certain order. If I were writing an
essay, I’d title it Dreaming About Sex During Acupuncture. My mind just goes there. The doctor has no idea that after she finishes putting all the needles in, asks me whether I want music and puts it on, walks away and shuts the door behind her, I’ll lie very still on the table and start thinking about my past. I lie very still because when I move, the needles hurt. Actually, the needles don’t hurt, but whatever they’re doing hurts. Actually, it doesn’t hurt as much as it feels uncomfortable. I'd edit the whole paragraph to just that last sentence, but somehow the progression is necessary. I try not to move once the needles are in because I feel like I'm impeding the flow.

That's what's so hard about all of it. Seeking help. Being still. Feeling. Not impeding the flow.

to be continued


Tuesday, June 5, 2018

Rules for Caregiving Post "Wisdom"* Teeth Surgery

  1. Wake to the sound of a seizure at 5 am, a guttural moan and rattling, and run/hobble to patient's bedroom to assess situation
  2. Administer large dose of CBD and CBDa via new protocol
  3. Think who lives like this? while making sure patient is comfortable. Question pertains both to patient and caregiver
  4. Turn on light (essential rule for those who struggle with psychosis in early morning hours)
  5. Drop essential oil Frankincense into palms of hands, cup patient's nose for several seconds, caregiver's nose and then massage patient's feet
  6. Recite secular prayers and pretend to administer Reiki
  7. Note that second seizure does not happen, a small improvement from previous days
  8. Change diaper and notice that hydration might be necessary
  9. Worry and wonder 
  10. Contemplate whether hydration might be necessary in hospital as patient slept most of previous day, having been drugged into oblivion because of too many seizures
  11. Think who lives like this? as pertaining to patient. Curse wisdom teeth, so ridiculously named.
  12. Text friend from East Coast who emphasizes importance of hydration.
  13. Contemplate which hospital to take patient to for hydration, drawing upon 23 years of experience in caregiving
  14. Contemplate waking College Boy or Brother to drive patient and caregiver to hospital
  15. Contemplate the various pros and cons of hospital admittance
  16. Read text from friend: Take her in
  17. Continue contemplation of big city hospitals, private insurance and who takes MediCal as secondary
  18. Curse the American health care system to ward off financial fears
  19. Retrieve large syringe used to administer pharmaceuticals, bottle of cold Pedialyte from fridge and towel
  20. Sit at patient's bedside and carefully syringe 5 ml of liquid into patient's mouth until 8 oz is down the hatch.
  21. Help patient to cough up mucous with newly purchased $369 portable home suction machine
  22. Think who lives like this? pertaining to both patient and caregiver throughout home hydration
  23.  Lie next to patient and gradually realize that patient is not seizing like she had in previous days, has drunk an appropriate amount of electrolyte-balanced liquid and is resting peacefully
  24. Rest peacefully next to patient while College Boy and Brother sleep unaware of caregiver and patient drama on other side of wall
  25. Rise from patient's bed at 7:00 am, make coffee for caregiver and oatmeal for patient to hopefully eat later. Sip coffee and contemplate the universe
  26. Bring patient 8:00 medication and coax another 8 oz of liquid into patient's mouth. 
  27. Note, again, that no seizures have occurred
  28. Think who lives like this? while planning a trip down to Santa Ana to visit a dispensary that has a good stock of CBDa. It's called Fiddlers Greens.

This has been a Public Service Announcement.

* The "wisdom" teeth are so-called because one is presumably wiser when they appear in late childhood, early adulthood. I call bullshit.

Monday, June 4, 2018

Poems for Difficult Times

It's rare that I'll respond to a marketing plea from a public relations firm with anything other than sarcasm, but I recently received a request to review Roger Housden's ten poems for difficult times, so given my love of poetry, I jumped at it, received a free copy and here we are.

In his Ten Poems series, Housden chooses ten poems and then discusses each one. I've got copies of several of his other volumes, but given how difficult all of our lives are right now, this volume has special significance. Housden says, "Poems like the ones in this book shake me awake. They pass on their attentiveness, their insight, their love of this broken world to me, the reader." He adds, "We ourselves can wake up to the world and to ourselves in a new way by reading poems such as these -- especially when we read them aloud, and shape the sounds on our lips and the rhythms on our breath -- making us more fully human." In an interview with the publicist, he stated that it was Trump's election that propelled him to add to his series, that his despondency over the election and a walk in the forest (he's British and uses beautiful language) inspired the title and then the collection.

I couldn't agree more with Housden and found his selections wonderful. Familiar with Maggie Smith, Ellen Bass, Marie Howe, William Stafford, W.S. Merwin, Jack Gilbert and Wendell Berry, I found something new to love in the poems he chose of theirs and was introduced to Jan Richardson, Nazim Hikmet and Conrad Aiken. Housden's commentary is great, as well, and includes interesting insights about the poetry and the writers.

In short, I highly recommend this slim volume. Right now, I can't bear to look at any more news of Terrible America, but I'm carrying the little book around today as I take care of a still-struggling Sophie.

Here's a poem by Ellen Bass that speaks to me:


to love life, to love it even
when you have no stomach for it
and everything you've held dear
crumbles like burnt paper in your hands,
your throat filled with the silt of it.
When grief sits with you, its tropical heat
thickening the air, heavy as water
more fit for gills than lungs;
when grief weights you like your own flesh
only more of it, an obesity of grief,
you think, How can a body withstand this?
Then you hold life like a face,
no charming smile, no violet eyes,
and you say, yes, I will take you
I will love you, again.


An interview with Mr. Housden:

ten poems for difficult times by Roger Housden, published by New World Library

Sunday, June 3, 2018

Chronicles of Caregiving: Wisdom Teeth Surgery 2

So, here's what happened on Friday. Sophie had her upper two wisdom teeth removed by her beloved dentist, a little more than two years after she had removed the lower ones. The great great grandson of Albert Einstein was the anesthesiologist, but I have to tell you that knowing such genes are taking care of your child doesn't mitigate the strain or make the PTSDish any less. Both dentist and doctor were amazing, though, and when I drove Sophie home I felt confident that her mouth would recover. It looks like her mouth is recovering, but she is having so many seizures that she's wiped out, and I -- well, I -- well, it isn't about me, is it? I've had some dark nights of the soul of late, and I keep going back to breathing and realizing that it's only a moment that one has to get through in the end, and then the next. Moments don't pile up like years if you let them go. Besides, there are comrades who sit in the darkness with you, by other bedsides, in hospitals and homes, who've done it over and over for moments and moments and years and more years.

It's weird how my inner sense of absurdity kicks in just when the universe is at its most implacable and cruel. Hallelujah.

Dr. Klein and Dr. Einstein have been checking in regularly via text, phone and email -- this is the kind of care you get when you don't have dental insurance and go to a private dentist and are subsidized by generous and loving relatives. That I'm grateful is an understatement, and if I could close my eyes and make it happen for every kid with special healthcare needs, I would.


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