Tuesday, March 31, 2020

We Can Do Hard Things, Tuesday 3/31/20



...when you feel yourself age, the tweak of a knee the rogue hair the thinning lip the vertical crease the sprinkle of gray like rain. I feel so tender these days, so empty of bitter the usual anger just barely nipping at my heels easier to kick off leave behind. Why did I hate this fold of skin, this lushness? I don't actually have more time, nor am I somehow using time differently the day becomes night quicker like in a hospital when (while) everyone waits.


Beannacht/Blessing
by John O'Donohue

On the day when
the weight deadens
on your shoulders
and you stumble,
may the clay dance
to balance you.
And when your eyes
freeze behind
the grey window
and the ghost of loss
gets into you,
may a flock of colours,
indigo, red, green
and azure blue,
come to awaken in you
a meadow of delight.
When the canvas frays
in the currach of thought
and a stain of ocean
blackens beneath you,
may there come across the waters
a path of yellow moonlight
to bring you safely home.
May the nourishment of the earth be yours,
may the clarity of light be yours,
may the fluency of the ocean be yours,
may the protection of the ancestors be yours.
And so may a slow
wind work these words
of love around you,
an invisible cloak
to mind your life.


from Echoes of Memory (Transworld Publishing, 2010)
This poem is included in the second edition of Tools of the Trade: Poems for new doctors (Scottish Poetry Library, 2016).

Monday, March 30, 2020

We Can Do Hard Things, Monday 3/30/20



to Chris Rice


Some of you have asked -- my boy Henry is up in Washington. He lives off campus with a few friends and is doing "school" virtually. I understand from both boys that school is really just "school," that they don't feel they're actually learning and that it's all bullshit and boring. I hear the word boring a lot, and to tell you the truth, I feel grateful that they're bored. At least for now, because who knows what sort of long-term effects this strange, strange time will have on them, our youth, our hope, our future?

I miss Henry.

Sophie just had a huge seizure that rattled me. I'm still capable of being rattled despite being tens of thousands of seizures in. Epilepsy really sucks. When will this be over? Never.

I read an article by Aisha S. Ahmad titled "Why You Should Ignore All That Coronavirus Productivity" that was published in the Chronicle of Higher Education. The writer says:
Yet as someone who has experience with crises around the world, what I see behind this scramble for productivity is a perilous assumption. The answer to the question everyone is asking — "When will this be over?" — is simple and obvious, yet terribly hard to accept. The answer is never.

It's not depressing, though. It's very wise, and what it did for me was to affirm what I already know, have already experienced yet willfully forget or bury or don't have the time to remember. What I already know is that I can do hard things. I know this hard thing is like no other hard thing in its scale, so I won't use the word but. It's not about me. What I can offer, though, is my tiny little mother mind™ -- remember that? I do. It's the part of me that was left after Sophie was diagnosed on June 14th, 1995. The rest of me came before that. People are used to things being recoverable, and we live in a culture -- whether religious or not -- that makes faith and hope virtues in what to me is a weird way. Some things are just not recoverable. They are irrevocable. I drove to Ralph's grocery store yesterday, wearing a mask and gloves. I have tried to limit myself from any of the shopping, but I really needed to see what was there because I'm the one planning and making the meals. I parked my car and stood in a long line that snaked behind the building, each person standing six feet from the next. We were let in one at a time, in small groups, and we shopped that way, too. Everyone is shopping that way. My eyes filled up with tears and my mask and warm breath made them fog up so I couldn't see. A long time ago, I was driving my three young children around the shitty from one of Sophie's various therapies or something. I'd gone through the drive-through of In N Out to get some french fries for them. Oliver was an infant, facing backwards, but Henry was three years old and sat in a car seat next to Sophie who was also in a car seat. Henry fed Sophie french fries, one at a time, cheerfully. Cheerfully. Or matter of factly. Matter of factly. I glanced up in the rearview mirror and teared up. The words It will never be normal for them rose up in a snaky cartoon-like bubble, filling the entire back seat. Irrevocable. I think that's why we cry. We are sad for things irrevocable.


I was talking about this with my friend Chris, who is no stranger to things irrevocable, to apocalyptic experiences, who is wise and like a big sister to me. We also know that we can feel joy anyway, live anyway, I said. She agreed. And that my friend is the ultimate example of holding two seemingly disparate ideas in one's mind at the same time and still being able to function. 

I can do hard things. You can do hard things. We can do hard things.


...be slow. Let this distract you. Let it change how you thinnk and how you see the world. Because the world is our work. And so, may this tragedy tear down all our faulty assumptions and give us the courage of bold new ideas. 
Aisha Ahmad

Sunday, March 29, 2020

We Can Do Hard Things, Sunday 3/29/20

Staying sane while quarantining


Thoughts in real time:

4:00 am
Should I call Sophie's neurologist tomorrow and ask him whether I might get a nebulizer and/or steroid inhaler, in case Sophie gets The Virus? I worry that Sophie will (1) not be treated in a hospital should things get bad or (2) she will be treated but I won't be able to be with her. Number 2 is as hideous as number 1 so many minutes of anxiety ensue, but I eventually go back to sleep.

9:00 am
I think I'll make a Dutch Baby and use apples in it. I make a Dutch Baby.

11:00 am
I think I'll send the recipe to Henry up in Spokane as he's feeling bored and lonely and probably terrified down deep, behind his near-Darwinian comments. I send the recipe and he texts back, Sweet.

11:15 am
The Virus doesn't care about our moods, about our cycling through anger, grief, terror, contentment, resignation, resolve, dark humor. The Virus just IS.

11:28 am
I forgot to tell Dear Readers to watch the documentary Crip Camp, pronto. Dear Readers, watch Crip Camp, pronto. It's fantastic. It's on Netflix. It's testament to people doing hard things -- hard, hard things for decades.

11:30 am
I suppose if I were into Twitter, I could do this there, but I prefer the blogging platform. I'll end here, and I'll see you later.

I won

Saturday, March 28, 2020

We Can Do Hard Things, Saturday, 3/29/20

Writer's Altar

Hope is not optimism, which expects things to turn out well, but something rooted in the conviction that there is good worth working for.
Seamus Heaney 

We can have hope, if not optimism.  (when hope and history rhyme)


The Cure at Troy
Seamus Heaney















Friday, March 27, 2020

We Can Do Hard Things, Friday 3/27/20



What's the wider world looking like, Reader? The garbage trucks are passing by as I type, and I am as fascinated by those arms that reach out to grab the bins and carry them up and over and dump their contents as my small boys were so many years ago. I feel grateful that these workers are still out there, doing their jobs, for us. Thank you, sanitation engineers. Thank you healthcare workers. Thank you. The trees have burst forth tender green, the oakleaf hydrangea has decided to flower, the air is crisp still and the sun glorious.


Still.


An old friend died on Tuesday night in New York City. Floyd Cardoz, a 59 year old chef with whom I worked alongside for a year or so at Restaurant Lespinasse. I hadn't kept in touch with Floyd in many years, other than following him on social media and feeling glad that such a nice and talented guy had "made it." And he was the nicest guy. I worked with him on the line. Before I worked in the pastry shop, I worked the garde manger or salad and appetizer station. Lespinasse was a high-end (the highest of high-end) restaurant, and the appetizers and salads were elaborate. I remember one dish had 17 garnishes, and if one was missing,  Chef Gray Kunz (our maniacal leader who also recently died but not of Covid) would notice and scream at us something like WHERE IS THE CHERVIL?and we'd be in the shits, in the weeds, poking each other and rolling our eyes and always, always, laughing up our sleeves. Floyd was incredibly talented and just a good, good man. When I read his obituary late on Wednesday night, I cried for him, for his family, for all of us. It's just so horribly sad, and I don't understand how we will bear the coming weeks.


Here's a poem:

Try to Praise the Mutilated World


Try to praise the mutilated world. 
Remember June's long days, 
and wild strawberries, drops of wine, the dew. 
The nettles that methodically overgrow 
the abandoned homesteads of exiles. 
You must praise the mutilated world. 
You watched the stylish yachts and ships; 
one of them had a long trip ahead of it, 
while salty oblivion awaited others. 
You've seen the refugees heading nowhere, 
you've heard the executioners sing joyfully. 
You should praise the mutilated world. 
Remember the moments when we were together 
in a white room and the curtain fluttered. 
Return in thought to the concert where music flared. 
You gathered acorns in the park in autumn 
and leaves eddied over the earth's scars. 
Praise the mutilated world 
and the grey feather a thrush lost, 
and the gentle light that strays and vanishes 
and returns.

Adam Zagajewski 





Tuesday, March 24, 2020

We Can Do Hard Things, Tuesday 3/24/20



I've fallen into a sort of daze the last day or so, my body and mind fluid, amorphous. Taking care of Sophie has never been so easy. I feel nothing but tenderness toward her and none of the crackling anxiety and irritation at my role my plight my duties my responsibilities my aloneness. We.



This morning I woke up terrified but coffee the padding around the house my students the clicking of laptop keys a pan of brown butter cornbread the birds outside the dining room window the musty flowers on the table the piles of books a pink quartz a shell its sound in my ear dispelled the fear.




Reader, did you watch Dear Leader lie today? His white ringed eyes.




Carl told me that the Powers That Be in Washington have determined that a person with cognitive disabilities will not get a respirator should he or she or they need one. I said, We know that already. We is us. We know about the rationing of care.




Someone on Facebook commented that she hopes this actually will change everything. Why do I not believe it will change anything? 



Monday, March 23, 2020

We Can Do Hard Things, Monday 3/23/20

Fantastic Depiction of the Solar System, 19th century


I'm trying to remember what I wanted to write about today, but I just can't right now. I spent hours today doing virtual teaching, and I am beyond grateful for the precious children I teach and the wonderful folks who run the school and gave me this job. I took a walk through a largely deserted Los Angeles. Every person I passed gave me a wide berth. I love this city.

The POSPOTUS is going to gamble lives for the economy. "The cure is worse than the disease," he says. Meaning money lost is worse than suffering and death.










Everything, I know, is transactional in this culture.





My daughter's life is worth less than yours in the grand scheme of things. If she should get sick and need ventilation, she will be turned away if your "normal" child gets sick and needs ventilation. You know that, don't you? These are transactions that we must accustom ourselves to,



because






please, fill in the rest of that sentence. After the because.









A child injured or killed by a vaccine injury is a necessary sacrifice for the greater good. Children with disabilities shouldn't get funding for education because it takes away from those who are "normal." My taxes shouldn't go to a lazy ass person using food stamps to get by. If a person can't make it on minimum wage, he should get another job or another or another.










WE CANNOT LET THE CURE BE WORSE THAN THE PROBLEM ITSELF, the Master of Ceremonies said in the dumbed-down string of letters we call language now,













On another note, my ex and his lawyer continue to hound me. Now they want me to go through a job evaluation -- something that will assess my earning capacity and what the hell I've been doing with my time for the last five years. I'd cry but why bother? We're in a pandemic, and life as we've known it goes on. For some.



Being quarantined is a bit like hospital time. It's not really time but time passes. Those of you who've spent lots of time in hospitals might understand this weak attempt to describe it.



On my walk I thought about God and god and religion and those who have faith in plans and order. I thought about absurdity and randomness, about houses made of cards, about human fragility and frailty, about beauty and hope and pure, dumb luck.

I choose to be dogged with not so much hope or faith but a belief in things as they are in the moment and the experience that what comes next is utterly and completely unknown.

Saturday, March 21, 2020

We Can Do Hard Things, Saturday 3/21/20



Hey there, from sunny California! How are ya'll doing?

A couple of years ago -- or was it last? -- I read an article about the best masks to wear should the fires in California grow worse and our already full of particulate air get even worse, and I bought a box of those N95s right on Amazon. I balked at buying them because they were more than $50,  but I'm good (or bad) about impulse shopping so when they came I put them in the earthquake kit and forgot about them. My friend Heather posted on Facebook about a news conference in front of UCLA with doctors and nurses pleading for masks -- for the people who had bought and hoarded them in the last few weeks to donate them to area hospitals. I called one of my neighbors whose husband is a doctor at one of the most prestigious hospitals in LA and told her that I had a box of N95s and would he like them and she said yes! and then she walked over to my house and rang the doorbell and I reached out with them to where she stood, 6 feet from my doorway. She said that her husband would be taking them to the ER. She said that the hospital is ghostly, that all elective surgeries have been cancelled and that several people were on respirators in intensive care and everybody else is waiting.

We are all waiting.




My uncle has tested positive for The Virus. He is nearly 84 and lives in an assisted living/retirement home here in Los Angeles. He has no symptoms but is quarantined in his room.












I've always felt contempt toward the survivalist -- especially the rich ones who live behind barricades and have safe rooms or private jets or extra cars parked across bridges from Manhattan in case terror strikes again. People are making masks out of scrap fabric all across America as we speak.











I've thought it, but I've never written it: may that POS who is supposedly leading us drown in fluids filling his lungs, alone.








Cassandra
screamed
and
yelled
and
moaned
and
wailed.
imprecations
warnings
no
one
believed
her
comma
But





Here's one of my favorite poems by Jack Gilbert.

A Brief For The Defense
Sorrow everywhere. Slaughter everywhere. If babies
are not starving someplace, they are starving
somewhere else. With flies in their nostrils.
But we enjoy our lives because that’s what God wants.
Otherwise the mornings before summer dawn would not
be made so fine. The Bengal tiger would not
be fashioned so miraculously well. The poor women
at the fountain are laughing together between
the suffering they have known and the awfulness
in their future, smiling and laughing while somebody
in the village is very sick. There is laughter
every day in the terrible streets of Calcutta,
and the women laugh in the cages of Bombay.
If we deny our happiness, resist our satisfaction,
we lessen the importance of their deprivation.
We must risk delight. We can do without pleasure,
but not delight. Not enjoyment. We must have
the stubbornness to accept our gladness in the ruthless
furnace of this world. To make injustice the only
measure of our attention is to praise the Devil.
If the locomotive of the Lord runs us down,
we should give thanks that the end had magnitude.
We must admit there will be music despite everything.
We stand at the prow again of a small ship
anchored late at night in the tiny port
looking over to the sleeping island: the waterfront
is three shuttered cafés and one naked light burning.
To hear the faint sound of oars in the silence as a rowboat
comes slowly out and then goes back is truly worth
all the years of sorrow that are to come.




Friday, March 20, 2020

We Can Do Hard Things, Friday 3/20/20



I guess I'll start dating these posts in the title, since I imagine there are going to be a whole lot more we can do hard things-themed posts. It's weird to be coming here again daily, reaching out, knowing you're out there you and you and you.

How's it going?

I finished up a week of virtual teaching -- 17 classes. I am so damn grateful for this job, for these students, for the routine, for the subject matter, and I'm winging my caregiving on the side. Sure, it's only day five and here in Los Angeles we're in a kind of lock-down but Sophie is ever my teacher.

That being said, after dinner I felt like I was going to implode so I went for a walk in the neighborhood, the air was clear and crisp, the clouds blue puffs the streets silent. I passed a solitary man on the sidewalk who stepped to his right and me to my right and thus we passed in a weird lock-step dance of avoided intimacy.

I'm obsessed with this article: Is This American Resilience? and would love to discuss with anyone. Thoughts?

What else is there to say? I feel so heavy, so filled with dread. Cleaning helps.

Thursday, March 19, 2020

We Can Do Hard Things, Thursday 3/19/20



Hey, Reader, how's it going today? I confess to feeling an uptick of rage. It started about an hour ago when I heard about someone I know testing positive for the virus. (How are we going to write this word? Virus? Corona Covid? Covid-19? Should we be clever or ironic or matter-of-fact and terse? Maybe the uptick started last night when I went to bed and read a few emails from our old pediatrician's office. He's a private doctor who treats a lot of very wealthy families and celebrities. I "picked" him over 23 years ago because he was willing to work with my babies' vaccination schedule given Sophie's seizure disorder and the suspicious way it started. That's another story and we sure as hell aren't going into that now. I'm telling you this so you know why I took all three of my children, through their childhood, to a ridiculously expensive pediatrician. Don't get me wrong. I love the man and his staff.  Fortunately, we made very few visits to the pediatrician, but I can honestly say that in nearly every single instance,  I spotted a familiar golden face.



You know what? Forget this story. It's about self-tests for The Virus, how they were available for $250. How as soon as the newsletter went out, first come, first serve, another newsletter arrived and all the tests were gone, accounted for, paid for, etc., as if those tests were toilet paper, frantically purchased and hoarded.

Capitalistic concierge medicine.

My uptick of rage is related to my son announcing that several Lakers have The Virus or have tested positive, and I've been reading accounts from FRIENDS that they haven't been able to get a test despite having symptoms of  The Virus. So, all I'm going to say about this is the same thing I've been harping (that's a fine word, isn't it?) about for all the years you've been reading this shit that I write and that is that we can not call ourselves a great country when the country has such a huge disparity between those that are obscenely rich and the rest of us. Where celebrities and pro athletes and rich people have access to healthcare while regular folks do not.

Let's not even get into the disabled issue.

Read this.

When all of this is over, I think I don't want to hear another word about a celebrity or a pro athlete or really anything related to vast sums of money or adulation of those who have vast sums of money.

Up
tick





d


o


w


n


ward.











I did have a good morning teaching my dear students. One made a video for his final project related to the great Flannery O'Connor's short story "A Good Man is Hard to Find." I practically fell on the floor in a state of shock and awe when I watched it. Honestly. This 14-year old kid got that short story and created something original, weird and incredible. I wish I could share it with you and will let you know if he makes it public on Vimeo.

I also spoke with my therapist in a telephone session, and that helped me a lot. We compared notes on coping, talked at length about how we can do hard things, how helping others helps ourselves, how caregiving is a form of meditation and damn if I'm not grateful for the people out there working so hard to ease the suffering of others.

Thank you doctors and nurses and all those who help in the healthcare world.

Here's a poem by Lynn Unger:

PANDEMIC
What if you thought of it
as the Jews consider the Sabbath—
the most sacred of times?
Cease from travel.
Cease from buying and selling.
Give up, just for now,
on trying to make the world
different than it is.
Sing. Pray. Touch only those
to whom you commit your life.
Center down.
And when your body has become still,
reach out with your heart.
Know that we are connected
in ways that are terrifying and beautiful.
(You could hardly deny it now.)
Know that our lives
are in one another’s hands.
(Surely, that has come clear.)
Do not reach out your hands.
Reach out your heart.
Reach out your words.
Reach out all the tendrils
of compassion that move, invisibly,
where we cannot touch.
Promise this world your love—
for better or for worse,
in sickness and in health,
so long as we all shall live.


Wednesday, March 18, 2020

We Can Do Hard Things, Wednesday 3/18/20



Hey, Readers. How's it going? Are you keeping it sexy out there, social distancing?

Speaking of sexy, I read an article about a nun who's basically been social distancing for 29 years in a convent. She had three pieces of advice:


  1. Establish structure.
  2. Be intentional and love others.
  3. Use the time for self-reflection and relaxation.
(I've formally renounced Catholicism in my very own creation: The Eighth Sacrament or Renunciation of the Catholic Church, but I've had a life-long love of nuns -- the good ones -- so I'm trying to take her advice).

In the morning when I open my eyes, I try not to think about what I've thought about for the last three-plus years (I'll leave it to your own imagination but it has something to do with November 9, 2016), and instead I put my hand over my heart and say metta for all of us:

May we be happy, healthy and peaceful.
May no harm come to us.
May no difficulties come to us.
May no problems come to us.
May we always meet with success.
May we also have patience, courage and understanding to meet and overcome inevitable difficulties, problems and failures in life.

Structure:
I get up and make my bed.
I take care of Sophie.
I begin my job teaching middle school and high school kids English literature and language arts.
I take care of Sophie.
I make breakfast and lunch and eat them. I feed Sophie.
I let Oliver take Sophie out for a walk.
I go out for a walk.
I take care of Sophie.
I take care of Sophie.
I catch up with all of you.
I make dinner.
I eat dinner and feed Sophie.
I prepare my lessons for tomorrow.
I sit with Carl and watch something on the teevee or just talk.
I take care of Sophie.
I go to bed and rest.

Being Intentional and Loving Others:

I check in with a lot of people every single day via text, phone and email. How lucky we are to have technology, right?

I tell Oliver and Carl how grateful I am that they are helping me and how much I love them for being who they are and being here with me and with Sophie.

I tell Sophie how much I love her and how difficult all of this is for everyone. Taking care of Sophie (see above) is a form of meditation. Honestly. It is.

I have cut out complaining as much as I can -- an intention most difficult for this old, crabby, sharp-tongued human

I bake bread and cookies and lovingly make food that is nourishing and looks good. Today I pulled something out of the freezer that looked like soup, but I believe it was gravy? Good thing I didn't feed it to Sophie? I am intentional in maintaining a sense of humor. I remember how goddamn fortunate we are to have purchased enough food to carry us through the next couple of weeks.

I paid my saintly childcare worker ahead of time and told her to stay home with her own family. I was able to do this because of the help I receive from my parents and from the glorious state of California.

I talked to my sisters, one of whom was feeling particularly agitated this morning. I reminded her that we should always acknowledge our fears, that bad things are happening and might happen to us. These are facts. I humbly say that it's been my experience that acknowledging things as they are or could be is very helpful in distilling fear and instilling acceptance and calm.

Use the time for self-reflection and relaxation:

See above for self-reflection. I have done hard things. We can do hard things.
I'm working on the relaxation but have been, so far, unsuccessful.


Tuesday, March 17, 2020

We Can Do Hard Things, Tuesday 3/17/20



Good morning from locked-down Los Angeles.


Roses

Everyone now and again wonders about
those questions that have no ready
answers: first cause, God's existence,
what happens when the curtain goes
down and nothing stops it, not kissing,
not going to the mall, not the Super
Bowl.

"Wild roses," I said to them one morning.
"Do you have the answers? And if you do,
would you tell me?"

The roses laughed softly. "Forgive us,"
they said. "But as you can see, we are
just now entirely busy being roses."

Mary Oliver

Sunday, March 15, 2020

Backdrop

Self-portrait by artist Luchita Hurtado (b. 1920)

Her thrashing limbs and guttural groans last night were emblematic of nothing, I decided. They are the backdrop, though, to this new surreal yet real life. There is no way that I'd suggest what I and all of my comrades have done compares to what everyone else is now doing, but because I and all of my comrades have been reckoning with existential threats since our children and loved ones were "diagnosed" or born, we do have something in our toolboxes that might be of help to everyone else.  That last sentence? The part after the born,? The comma separates the hour between the words I wrote before and tending to Sophie during what I think is a non-convulsive status event. The comma separates the washing of hands, lying next to Sophie in her bed and spooning her in a vain attempt to still the constant jerking, the anointing of my hands with Frankincense oil and placing of them on the back of Sophie's head and then feet, the appeals for mercy, the calling on the saints -- Anna Schalk, Viola Frymann, Bonni Goldstein, that guy who did long-distance healing in 1997, Dr. Jin, my friend Carrie Link -- and then, finally, the administering of rectal Valium, one vial of which was in my medicine cabinet, unused for nearly two years but blessedly unexpired from (remember the comma) this writing. My proverbial toolbox includes a certain calm that is one part repressed hysteria, one part dark, dark humor, one part resignation, one part great understanding, one part compassion for all that is vulnerable, one part judgment for those that are selfish, one part joy for the ground and the air and the water and all that is green, and one part for the recognition that life and death are not at war but working together. (I confess: the dark sense of humor and the judgement for those that are selfish might each constitute two to three parts.)

Here are more thoughts from my friend Sandra Stein:
I must say I’m bemused by all these recent reports of how Covid-19 is exposing the vulnerabilities and system failures in US healthcare and social safety nets...
Ahem! My kid has been doing the same for almost nine years!
And since so many are providing lists of things to do under our current circumstances, here are 10 hard-earned, unsolicited lessons from the Warrior Den:
1. Spread fierce love and gratitude
2. Practice forgiveness.
3. Fight unjust arrangements, even the ones you think you benefit from.
4. Know that folks are better at acute than chronic. Soon this will feel chronic and nerves will fray. (See #2)
5. Find gallows humor in all of it.
6. Experience some form of joy every day, no matter what the day brings.
7. Accept that nothing is permanent.
8. Use these disruptions well for the deep reckonings they allow; take stock of your lived values—if they feel warped, unwarp them. Our current arrangements don’t work and won’t work, even for those supposedly benefitting from them....and even if we all wash our hands and stop touching our faces.
9. Live as if all lives have equal value, in all stages and all forms...and act on behalf of all of those lives. Don’t hoard shit.
10. Embrace radical acceptance...of our difficult situation, of life and loss, of human fragility...NOT of the madhouse fuckery of our system (for the system, see #s 3, 8 and 9)

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