Musings

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

RIP

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.

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:


THE THING IS

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.


LINKS:

www.RogerHousden.com

An interview with Mr. Housden: https://youtu.be/5zUrsTXN5Pw

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

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.

White Sheets

Sophalette Silhouette
May 2018
Los Angeles

to Allison, Heather, Christy and Bonni

This morning I lay on my back in my bed barely woke, my son rummaging around the bathroom on his way to work out and then the sound of Sophie seizing from her room and his bark Sophie's having a seizure! even as he walks out the door (the quotidian) and my sigh and hobbled walk (I'm working out, still) down the hall at no great speed because I've done this before and again and again. That I was lying on my back thinking about seizures and Sophie and what to do next and how very tired and sick unto is irrelevant, redundant, mundane and tedious. I settled my girl and climbed back into bed with my thoughts, my incessant thoughts, what to do, how to do, a kind of solipsistic world except that it's not me my mind but, literally, Sophie, her mind. Or brain. Or not -- the solipsism, that is. Then the world broke through. I had conversations right then and there, as we do in the world's mind, that vast space that some call unconnected but we know better, conversations with a friend in Maine and a friend in Colorado, both of whom struggle with their sons' seizures, both of whom know everything there is to know about cannabis in addition to seizures, both of whom fiddle and adjust, grow and learn as they go, as we go. The world broke through the way it does (the universe is abundant) in the form of these women and another who spoke to me from Greece, and another from San Diego who was the last person I spoke with the night before and who figures in my dreams. In the moment of the morning, flat on my back in the bed, post-ictal, I willed myself toward signs, out of the pull of darkness and toward light and lightness, acknowledged in my mind the miracle of these connections, our wisdom, these women. I made my bed. I lie down in it. We lie on our backs in these beds, this bed, next to one another, I feel them there, white sheets, these women, and we are connected and everything is ok. It's going to be okay.

Peonies and Patriotism

There's a blowsiness to peonies that no one remarks upon -- something disheveled about their beauty, their response to the sun. The tightness of the closed flower belies fecundity and generosity.

Another Memorial Day weekend is here -- and the nation's sport, one in which heads are bashed into oblivion even as people insist on their entertainment, is now dictating that its players either salute the flag or stay in the tunnel. Obeisance to the massuh. O say can you see. Patriotism. The lie. Belies.

Dulce et decorum est
Pro patria mori

Hummingbird

The Bird Photographer brought that tiny carved hummingbird back from Costa Rica recently and gave it to me, so I hung it above my bed. Honestly? My favorite thing to do is lie on my back on my bed and while away the minutes, do absolutely nothing but stare at the ceiling and watch the late afternoon light play across the walls, and now the hummingbird who drifts a bit, rotates round. That and reading.

I've been exercising these days. I've been going to a dance class called Kardio Krunk. Don't laugh. Or, rather, laugh all you want. The class is taught by this beautiful man who is also working with me one on one as a personal trainer once a week. I bought myself five sessions with all that money I got back from the POSPOTUS' tax reform. I had my first full blown anxiety attack when I went for my initial assessment. I'd love to regale you with the details, but suffice it to say that at one point I was curled into the fetal position on the floor of the beautiful man's studio with an ice pack under my chin. It wasn't the assessment that did it to me -- I swear I'm not that pathetic and out of shape. It was this weird feeling that literally overtook me. One moment I was lifting weights up over my head and the next my entire shitty life was passing through me, and I mean shitty. I had in a sort of simultaneous rush just about every superficial thought you can imagine -- from how fat and ugly and out of shape I was, how insurmountable the goal of losing weight and being fit to how unfair it was to be a caregiver of a child with disabilities for more than two decades and still not have shapely arms.  There was some divorce in there, too, and the state of my stomach, and seizures, of course, and just all of it. Cue: laughter. The Kardio Krunk guy was very patient and very calm as I went through this, and while I didn't voice anything but moans and I swear to god I've never had an anxiety attack before!, I actually cried, and he assured me that he'd seen it plenty of times before. I found this hard to believe, given that it's Los Angeles, but he was nice to say so. He believed my sudden swoon to be a surge of adrenaline and endorphins, coupled with an anxiety attack. Aside from the few moments on the floor when I didn't care if I died or not, given how bad I felt, I was more curious than embarrassed to be so betrayed by both my body and mind. They honestly worked together that afternoon in spectacular concert which is actually pretty cool if you think about it.

Since then, I've been back to see him a couple of times, and I'm doing better. I've taken two Kardio Krunk classes where I attempt to keep up with the class doing intricate dance moves, including twerking, as very very loud hip hop music plays, all while avoiding looking at myself in the giant mirror that runs the length of the studio. If I so much as glance up at myself, I lose my count or the step or the beat or the twerk and want to just lie down on the floor and give it all up to the lord.

When I get home, I lie on my back on my bed and stare at the ceiling, my mind drifting with the tiny wooden hummingbird floating above me. My face is red and my legs are quivery. I can hardly unbend my arms, but I don't feel miserable. I feel exhilarated, like I'm already fit and light, like my life is endless and there's still time.

Mercy Now

Mark Bradford's "150 Portrait Tone"
Los Angeles County Museum of Art

I do not pray except for mercy. I may sit on the side of Sophie's bed in the early hours of the morning, pulled there by a groan and thrashing legs and arms, and I'll curse in my mind even as I stroke her tiny face my grimace an extension of hers and I will ask for mercy. Mercy. I do not pray except for mercy. There is such a thing, isn't there? Not the prayer but the mercy. Today another ten children were gunned down by another child. Mercy. My own son rages at the world says hopeless but his strong body intelligence the way he moves belies the cynicism. Be merciful, I think. This morning two small yellow-breasted birds splashed in the fountain just outside my bedroom door. Yet, the earth is betrayed, buckling, relentless. I sip coffee. Sophie slept. Even so, I have a past, you know, where or is it when I did terrible things. I have a past, you know, when I was terribly hurt. I am sorry. Yes. I am, too. What, I think, might have happened if I hadn't done that? Yet still, mercy. I have held Sophie in my arms, a pieta without prayer.  The line of those who have hurt her, even indirectly. We must show mercy. What might have happened had Sophie been given cannabis medicine in those early days? Would I have crouched in the shower and wept, lay my forehead on the tile in thanksgiving for mercy? I have not prayed except for mercy. Those children dead, this earth, that person, that love betrayed and having been betrayed, my son, my son, my daughter. Mercy. There is such a thing, isn't there? Not the prayer but the mercy.

Carried by Great Winds

There I am with what I called 2/3rds of the circus that I run. The work of my heart. Mother's Day came and went. The College Boy is home for the summer. The Brothers are back at it. Sophie had a rough weekend but is better today. I'm going through loads of paperwork and hustling for freelance jobs. I'm baking cakes. I'm answering calls and emails and appeals for help regarding medical cannabis. I'm working on an exciting caregiver project that I'll tell ya'll about soon. I'm reading novels and excited to start watching the Patrick Melrose mini-series. I read those brutal and beautiful books years ago and so look forward to seeing Benedict Cumberbatch playing the lead.

Here's a poem that my friend Noan sent me the day before Mother's Day. It's by Alison Luterman, and I think it's perfect:

Invisible Work

Because no one could ever praise me enough,
because I don't mean these poems only
but the unseen
unbelievable effort it takes to live
the life that goes on between them,
I think all the time about invisible work.
About the young mother on Welfare
I interviewed years ago,
who said, "It's hard.
You bring him to the park,
run rings around yourself keeping him safe,
cut hot dogs into bite-sized pieces fro dinner,
and there's no one
to say what a good job you're doing,
how you were patient and loving
for the thousandth time even though you had a headache."
And I, who am used to feeling sorry for myself
because I am lonely,
when all the while,
as the Chippewa poem says, I am being carried
by great winds across the sky,
thought of the invisible work that stitches up the world day and night,
the slow, unglamorous work of healing,
the way worms in the garden
tunnel ceaselessly so the earth can breathe
and bees ransack this world into being,
while owls and poets stalk shadows,
our loneliest labors under the moon.

There are mothers
for everything, and the sea
is a mother too,
whispering and whispering to us
long after we have stopped listening.
I stopped and let myself lean
a moment, against the blue
shoulder of the air. The work
of my heart
is the work of the world's heart.There is no other art. 

Allison Luterman



A long time ago one of my relatives, from whom I am now estranged, wrote a caustic comment on this blog, imploring me to get my head out of my ass and quit reciting poetry. Something like that. It stung then because there was a bit of truth in my head being up my ass. I felt a bit of the old shame and embarrassment at being bookish, having my head in the clouds, being book smart as opposed to street smart, pretentious instead of easy-going. 

Whatevs, as they say. The thing about being more than half a century old combined with living in the Trump era, is that you can shed all that shame and run for the hills with your poetry, bringing anyone willing along with you.

What else? I went to see an incredible interpretive theater thing called the theater is a blank page by Ann Hamilton and Siti Company at Royce Hall on the UCLA campus this past Saturday. I might as well have been raptured up right there, as it was a wild interactive theater performance of Virginia Woolf's novel To the Lighthouse, hands-down probably my favorite novel ever.* I don't even know how to describe the experience that my friend Tanya, Chris and I had attending this show, but it was restorative and mesmerizing, and we all left feeling -- again -- like we'd been raptured into a writer/reader/lover of words heaven. Check it out if it comes to your town. Here's a video that I found on the internets of part of the performance in another city:




Also, if you're not one of the more than 115 MILLION people who've already watched Childish Gambino's incredible performance piece This is America, you should. I've said it before, but in these messed-up, clusterfuckery times, art and corporeal politics can save us.













* My Top Ten Favorite Novels

1. To the Lighthouse by Virginia Woolf
2. The Brothers Karamazov by Fyodor Dostoyevsky
3. The English Patient by Michael Ondaatje
4. Middlemarch by George Eliot
5. The End of the Affair by Graham Greene
6. Beloved by Toni Morrison
7. Let the Great World Spin by Colum McCann
8. Love in the Name of Cholera by Gabriel Garcia Marquez
9. Machine Dreams by Jayne Ann Phillips
10. Possession by A.S. Byatt

Who am I kidding? I didn't even list the children's books that should rank up there. It's virtually impossible for me to narrow down my favorite novels to ten, but those are the ones that come immediately to mind. What are yours, Reader?

Witnessing

I took Sophie to her quarterly visit with Nice Neurologist yesterday afternoon. Here's a caregiver tip: take someone with you when you visit a doctor, and you won't be reduced to your usual Psychotic Visiting The Doctor PTSD Self. Saint Mirtha came with me yesterday, and aside from the tremendous help she provides lifting the 4,000 pound wheelchair into and out of the back of my car and ministering to Sophie in the back-seat, her presence just calms me. I felt less chaotic, less alone, less like the person careening into space on my old copy of Sartre's La Nausée. I'm perfectly capable of doing these things by myself and have done so, but it's gotten very, very old in this the two thousandth and eighteenth year of our lord. During the visit with Nice Neurologist, I did my usual and asked him to reverse places so that I was sitting at his desk on the swivel chair and he sat next to Sophie on a folding chair. So I can better explain to you what's going on with Sophie, I said, and use the time to tell you about CBDA, about how I've been weaning the benzo and what dose you'll need to write a prescription for her at this point. Just kidding with the switching chairs. I used to call these visits with All the Neurologists The $475 Reflex Check, but these days I've noticed that All the Neurologists barely touch their patients, much less check their reflexes. Nice Neurologist is so open, though, and he generally has some interesting information about something or other related to immunology or studies being done on mice or genetics -- information that he doles out in a hopeful tone as it might distantly relate to Sophie in between the schooling that I'm doing. He writes down everything I say about CBD and now CBDA, and when I encouraged him to watch Sanjay Gupta's latest show on opioids and cannabis medicine, we had a healthy discussion about the fuckery of the Sackler family and Big Pharma pushing them on the country back in the day. I think I inserted somewhere in this discussion that I'd die happy if The Neurology Community recanted their stance on benzos, particularly with epilepsy patients, and I remember him looking a bit sheepish (was it the eyebrows or the mouth?) and not acknowledging it. He was, in fact, there to write that scrip for the benzo that Sophie's been on for eleven years and not much else. Sigh. Nice Neurologist is awesome, actually, in the long line of Neurologists Sophie and I have encountered during the last twenty-three years. I'm grateful for his attention even as I'm painfully aware that I'm sort of running the show. I made an appointment to bring Sophie back in mid-July and then wheeled her out to the waiting room to join Saint Mirtha who, when we left the office and went down into the parking garage, helped me put Sophie into the car and lift the 4,000 pound wheelchair into the back, even as the four Grown Ass Male Valets stood watching us, gawking. On another day I might have made some caustic remark to one of the men or even shoved them in my mind into one of the luxury cars out-sexing my Sexy Mazda and locked all the doors. Here's a caregiver tip: take someone with you when you visit a doctor, and you won't be reduced to your usual Psychotic Visiting the Doctor PTSD Self. You'll have a witness to all of it.

Is She Who

Who is she, really? What does she know? I say everything and mean nothing. I say nothing and mean everything.

So much is fathomless, even her eyes, yet she is entirely her self as I've known her for twenty-three years.

Love Poem

To C


are you only one hour ahead?

yes

weird,

this whole time I thought it was 3

no

Time's an illusion

you've been gone forever

only a minute

will be back in a

flash

will wait

forever

Writing While Lost

Big Sur Jade

I've got to get back to writing because I'm increasingly lost without it. Is that possible? Is being lost something that grows from lack or is it a steady state of darkness? Entanglements, dark covers, woods. The wash of water, tides, tears, oceans. Drowning. The elements. You can find dark green nephrite jade in Big Sur where the surf pounds the mountains.

My necklace is cool against my breastbone, smooth beneath fingers.

Claire Dederer wrote Because the finishing is the part that makes the artist. The artist must be monster enough not just to start the work, but to complete it. And to commit all the little savageries that lie in between.

Little savageries. I know what they are, as do you, writers. I have felt incapable of committing them even as I've contemplated them. Contemplation, though, has gotten me nowhere. Nowhere. Lost. I'm obsessed with the way the mind works, its trickery. I've been told I'm a disgrace by a person with whom I was once close, tied to, yoked. I suppose it's true, but not in the way this person believes. It's the lack of little savageries that make the disgrace in my mind. The hacking out of lost. The commitment to the savagery is what makes the clearing.

Benignity and Trickery

I'm going to tell you about what might happen to siblings of kids with complex medical needs. No matter how conscious you are about giving them equal time, things slip through the cracks, stuff is blown off, "little stuff" is overlooked. Oliver complained about pain in his finger for a year. I acknowledged it, but I also blew it off. I blamed it on diet or inflammation. You need to stop eating junk, I might have said. How bad could it be? Both Oliver and his brother Henry are strong in every way. They are strong and sensitive. They are honest and funny as hell. Like their sister, except they haven't gotten as much attention. It turned out that Oliver has an aneurysmal bone cyst. Benign but tricky. Today he had a second surgery to remove it as the one in December didn't work. The tumor came back, began eating into his bone. Hopefully, today's intervention will last. I sat by the bedside in the recovery room for hours, running my hand through his hair, watching my nearly grown boy sleep off the drugs they gave him. He made jokes in his sleep, smoothed all my rough edges worn thin by time in hospitals those weird hours ticking by. Precious child. Brave children.

I'll be catching shit for the "inflammation" and "too much sugar" talk -- but that's okay. We all need to be humbled and set straight.

Power to the siblings.