This Is A True Story

A very long time ago I held the baby in my arms in a brown and cream-checked easy chair, rocking back and forth while she screamed. Breathing in I calm myself, breathing out I smile, I said in my mind over and over back and forth. I got in a black car with a driver who took me to a nursing home in the Bronx where an Orthodox Jewish rabbi a supposed holy man recovered from a stroke. I walked down a hallway with the baby in my arms behind a small group of men in beards in black they turned left into a room there were no other women. The rabbi sat in a wheelchair his head on his shoulder his eyes looking straight at me and the baby and his eyes were clear and I had to look away look down not to escape but to absorb I guess (it's been 25 years). He said some things some things I won't repeat here although I've said these things before some things about eyes and evil eyes the whole time he spoke his head lay on his shoulder (the stroke) his beard lay on his chest he stroked the baby's head and said she'll be okay. He gave me a small medal with a sign on it that I pinned on the inside of her clothes for months, maybe years, taking it off each small shirt, dress, onesie, for months until it turned black it was cheap and magical. Years go by went by are going and as she seized seizes I say you're okay, it's okay, it's okay, it's okay and for a while I thought it would be okay and then I thought (with rue) when? and then with dark humor I forgot to ask when? and now it's all okay, it's really okay. 



May we be well, happy and peaceful.
May no harm come to us.
May no difficulties come to us
May no burdens weigh us down
May we always meet with success.
May we have strength, resilience and courage to meet the inevitable failures and disappointments in life.
May we be held.
May we be transformed.

Job Counseling Pandemic-Style

Apple pie for dinner. Week four of quarantining. How's it going, Reader?

I taught my last class this morning and am "off" this week for Spring Break. I had some sautéed Swiss chard with garlic and olive oil for an extra-early dinner, along with a slice of bread that I baked yesterday, slathered in butter. I've honestly found my baking groove, something that's been a part of me since I was a little girl. Which reminds me -- I had an "interview" with a job evaluator/counselor the other day, all as part of the post-post divorce shit-show. It took 4 1/2 hours for a professional to interview me, pandemic-style via the internets. He ate a sandwich during the interview, and I stepped out of camera range to take care of Sophie when she needed something. The purpose of this "counseling?" I believe it was to evaluate my earning capacity and to make recommendations on how to better utilize my time. I am, naturellement, eager to get the results as I just know I should be doing more, making more money and better utilizing my time than teaching 20 hours a week and caregiving for 70.  I answered questions regarding my family's work history (where my parents worked, where my sisters worked) and then regarding my own work, from my very first job. Honestly, it was kind of fun to go through my work history -- a kind of trip down memory lane with a guy from Monty Python, except instead of looking at him behind a desk, I looked at him through a screen, right into his living room where he had a sandwich just off-screen and took bites, albeit apologetically, throughout.

I don't know what to tell you about this experience, other than what I took away. That is: if you're a caregiver of a severely disabled young adult, most people in the professional world are not going to know or care about the kind of work you've done, even if you've done that work for 25 years. They might ask you things like, If you were working, could you work 40 hours a week? or What would you need to work 40 hours per week? and you would answer, I already work 90 hours a week! and you'd say that three times when asked the question three times, and when the man sighs and re-words (let me put this more simply, he offered) the question in a way that would be easier for your tiny little mother mind™ to comprehend, you still stammer out that you work 24/7, basically, even as you realize from the very deep depths of your tiny little mother mind™ that it doesn't matter, it really doesn't matter because the very fact that you're being put through this means the real world doesn't understand and probably never will.



"I myself have worked all my life in such a building, and have never once.....

                                                                                                          AHHHH!"

We Can Do Hard Things, Saturday 4/4/20

Spring Break, 2020

Whelp, it's Saturday again.

Let's talk about service, shall we? There's service to one's country and service to one's god or goddess and there's service to one's fellow man or woman or non-binary human. I've been thinking that we caregivers of disabled persons have service  down. We've got it honed. Despite what you've heard probably way too often (mea culpa) about the difficulties and burdens of service, there are infinitely more benefits to have been called to do so -- to serve -- than you could possibly imagine. Yesterday some cool literary person invited me to join one of those Facebook groups for writers, so I figured why not and posted a brief introduction to myself in which I said that I was a writer and a caregiver to a severely disabled young adult. A probable well-meaning woman responded with a "heart" and wrote: "It makes you look into a mirror and realize my life could be worse and it gives you even more compassion."

Sigh.

Let me be of service to you, please.

Comments like that make me look into a mirror and pledge to do better in expressing myself -- to demonstrate that caring for a severely disabled young adult is the opportunity of a lifetime. It's hard as shit, especially when decades pass and you're basically doing the same stuff, but it transforms you in the best of ways, ways that others might envy rather than thanking their lucky stars.

Are ya'll thinking I've eaten too many CBD gummies?

The Virus does make caregiving more difficult because all the supports you normally have, if you're lucky -- things like caregivers, day programs, entertainment, music therapy, outings, etc. -- stop, abruptly.  It's reminded me of the early days of caring for Sophie -- the long, long hours where ritual and routine take on a whole different meaning. I find myself investing the regular routines with meaning, and the meaning is service.

The village is hunkered down, though, and our children and young adults might not know why or what's happened. I do think Sophie knows on some deep, intense level that the entire earth has tilted, and I am certain that other exquisitely sensitive souls who have no ability to communicate and are thought deficient do, too. Yesterday, the adult day program that Sophie normally attends had a music session on Zoom. It was a beautiful thing to watch.

How do you do it? people say,  or I couldn't do what you do and that makes us laugh -- sometimes bitterly with disappointment but mostly with glee because we know that we can and so can you. I don't want to wrap this up with a bow, but so can you. We can all do it, together. Serve. Be of service.

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.

Notes from the Underground

to Leslie

There's an underground passageway where certain mothers or those like them go. It winds down and down and then along and perhaps up and up because the metaphor isn't always about ground and earth and dark but sky and cloud and light. (But that's later). So maybe not underground except as it is in sleep, deep. The women wear thick loose gowns, silk, thick cotton, stiff from another time, an eternal time, their arms bare their hair long and they leave their glasses on bedside tables because they see in the dark. They lie beside children and grown children who moan (from) the dark for no reason at all and they wipe the hair from their foreheads and press up back along the knobs of the spine, steps from the base to the base of the neck. They straighten an arm and roll the palm flat the body a series of reflexes the moan becomes just breath. They lie down always an outside spoon. Later. A poem appears in a lighted box. Another woman in an underground passageway in Seattle is making jam and cleaning up her husband's dying shit the fluids. The passageway is toward the present, the woman (me) sees (dark). Lying in (to) (by) the present.

Here's the poem:

Advice to Myself

Leave the dishes.
Let the celery rot in the bottom drawer of the refrigerator
and an earthen scum harden on the kitchen floor.
Leave the black crumbs in the bottom of the toaster.
Throw the cracked bowl out and don’t patch the cup.
Don’t patch anything. Don’t mend. Buy safety pins.
Don’t even sew on a button.
Let the wind have its way, then the earth
that invades as dust and then the dead
foaming up in gray rolls underneath the couch.
Talk to them. Tell them they are welcome.
Don’t keep all the pieces of the puzzles
or the doll’s tiny shoes in pairs, don’t worry
who uses whose toothbrush or if anything
matches, at all.
Except one word to another. Or a thought.
Pursue the authentic-decide first
what is authentic,
then go after it with all your heart.
Your heart, that place
you don’t even think of cleaning out.
That closet stuffed with savage mementos.
Don’t sort the paper clips from screws from saved baby teeth
or worry if we’re all eating cereal for dinner
again. Don’t answer the telephone, ever,
or weep over anything at all that breaks.
Pink molds will grow within those sealed cartons
in the refrigerator. Accept new forms of life
and talk to the dead
who drift in through the screened windows, who collect
patiently on the tops of food jars and books.
Recycle the mail, don’t read it, don’t read anything
except what destroys
the insulation between yourself and your experience
or what pulls down or what strikes at or what shatters
this ruse you call necessity.

Louise Erdrich

When You Can't Stop Crying

I've been hearing all kinds of wise talk these days as I seek the counsel of people who love me. Yesterday, after twisting needles into parts of me that were clearly storing an inordinate amount of anguish, Dr. Jin spoke about Chinese armies who fight one another.  The side that doesn't want to fight or who is fighting out of integrity and truth against evil wins, she said in so many heavily accented words. Regardless of outcome. This felt strangely reassuring.

Today I was told by one of Sophie's caregivers that when you can't stop crying, you haven't cried enough.

Have You Listened to Clio Yet?

Just in case you haven't, here's the link to our latest podcast. For new readers, my friend and co-host Jason Lehmbeck and I have a podcast for caregivers. Actually, it's a podcast for caregivers and the rest of humanity. We interview siblings, too, and the one with Clio Chazan-Gabbard, the daughter of author Chris Gabbard, will, I think, enlighten you no matter what you're doing in your life.

She's a very special young woman with profound insight and heart-piercing honesty.

Listen here.

Help

The title is not a cry for it.

Help!

On help

I learned recently that Sophie was eligible to receive a home health aide, but I felt dubious about the whole thing for reasons I won't spell out since you've heard them ad nauseum for as long as I've been tapping away here. When she received a very generous number of hours, thanks to the great State of California and the Regional Center, I told my father and he said, I find that hard to believe, and I said, I know. I told my therapist about it, and she said, Wonderful! and I said, What will I do with myself in the mornings? and she said, Rest! and I said, What do you mean? and she said, Lie on your bed and read or go into your room and write and I mused on that for a while, lying there on the couch in her office where I've spilled the darkest of my guts and wept and been guided and helped for years. Asking and receiving help is acknowledged by most caregivers I know as two of the most difficult things to do, and while a lot of that has to do with the actual busy brain and body work it takes in terms of time and arrangement (CEO of Sophie, Inc. reports), a lot, I think, has to do with this deep, psychic attachment we have to our unique children and young adults.  It's less about burden, more about acceptance  and everything about love. Throw in guilt and responsibility and the ridiculous and very much American ideals of individualism and pull yourself up by your bootstraps culture, coupled by an ableist society that looks on disability as something so hideous and burdensome that we hear things like would you have had an abortion if you knew? or I'd rather be dead than dependent on someone or I could never do what you do -- well, it's damn hard to ask for help and even harder to receive it.

I am receiving it, Reader.

Sophie's morning aide is a delightful young woman who comes to the house weekday mornings and gets Sophie up and dressed and groomed (see above). She makes her breakfast and feeds her, brushes her teeth, packs up her stuff that she needs for her adult day program and then drives her there in our accessible vehicle. She talks to Sophie and is incredibly gentle and meticulous about her hygiene, the style of clothes she will wear that day and can fix Sophie's outrageous hair into all manner of amazing styles. She gives her choices and treats her with dignity and respect and humor. It's unbelievable, actually. The only thing that she's not allowed to do is administer medication, so I do that. It took me some time to train her and even more time to will myself into letting go, but guess what?

Reader, I am resting.
























The universe is abundant.








Here's that Extreme Parent Video Project that I made years and years ago with the help of other caregivers, many of whom I had only met online. You'll see that asking for and receiving help was a common theme. Enjoy, share, ask for and receive with gratitude and grace.

After the Doctor

The light in Sophie's bedroom in the late afternoon is incredible. I'll walk by and just stand there staring at it and her and wish I could walk into it, truly walk into light so that I might become light again. Because I'm near spent. Because I almost never feel light these days. I feel heavy, literally and figuratively. I am not as resilient as I once was or perhaps, if I'm kind (always kind) to myself I might attribute this heaviness to the years, the years or perhaps to upcoming transitions (Oliver leaving), those existential changes that take even the strong by surprise in their intensity. Today I went to the doctor, and I tried to explain this malaise, this lack of resiliency, this burning feeling in my throat that persists and this ache in my hips. Is something wrong? Really wrong? I think, I wonder. I have scanned the worldwide webs, have allowed the slip in -- you know how that goes, right? -- of guilt, of reckoning, because, really, how fortunate can one possibly be when one endures so much stress on an ongoing basis? I let that slip in my mind, the thought that it was all going to come home to roost, as they say, that instead of morphing into my peasant grandmother and die demented at 88, I'd get sick and who has time for that? I spoke with rue of my weight of the necessity of exercise and losing weight and the doctor agreed. You'll feel better, he said. And what about these? I showed him the starbursts of blue on the backs of my legs. They don't hurt, I said, and he said, I wouldn't worry. The blood work was fine, the blood pressure is normal and the new burn in my throat from stress, he said. Here, take this. The way these things are doled out, so casually and why would he know that I in my peculiar writerly way will note this, will note the casual shrug, the burn in the throat reduced to acronym (GERD) and take this for 8 weeks and do this (exercise) and that (lose weight) and you'll feel better but I'll know better from better and there's still that light, nearly spent.

Here's a poem by Mark Doty:

SPENT

Late August morning I go out to cut
spent and faded hydrangeas — washed
greens, russets, troubled little auras

of sky, as if these were the very silks
of Versailles, mottled by rain and ruin
then half-restored, after all this time...

When I come back with my handful
I realize I’ve accidentally locked the door,
and can’t get back into the house.

The dining room window’s easiest;
crawl through beauty bush and spirea,
push aside some errant maples, take down

the wood-framed screen, hoist myself up.
But how, exactly, to clamber across the sill
and the radiator down to the tile?

I try bending one leg in, but I don’t fold
readily; I push myself up so that my waist
rests against the sill, and lean forward,

place my hands on the floor and begin to slide
down into the room, which makes me think
this was what it was like to be born:

awkward, too big for the passageway…
Negotiate, submit?
                           When I give myself
to gravity there I am, inside, no harm,

the dazzling splotchy flowerheads
scattered around me on the floor.
Will leaving the world be the same

—uncertainty as to how to proceed,
some discomfort, and suddenly you’re
—where? I am so involved with this idea

I forget to unlock the door,
so when I go to fetch the mail, I’m locked out
again. Am I at home in this house,

would I prefer to be out here,
where I could be almost anyone?
This time it’s simpler: the window-frame,

the radiator, my descent. Born twice
in one day!
                In their silvered jug,
these bruise-blessed flowers:

how hard I had to work to bring them
into this room. When I say spent,
I don’t mean they have no further coin.

If there are lives to come, I think
they might be a littler easier than this one.

Negative Capability

Several things dovetailed in my mind, & at once it struck me, what quality went to form a Man of Achievement especially in Literature & which Shakespeare possessed so enormously — I mean Negative Capability, that is when man is capable of being in uncertainties, Mysteries, doubts, without any irritable reaching after fact & reason — Coleridge, for instance, would let go by a fine isolated verisimilitude caught from the Penetralium of mystery, from being incapable of remaining content with half knowledge. This pursued through Volumes would perhaps take us no further than this, that with a great poet the sense of Beauty overcomes every other consideration, or rather obliterates all consideration.

John Keats

Mrs. Schachter

My twelfth grade students are reading Elie Wiesel's Night, his memoir of the time he spent in a Nazi concentration camp and the struggle he had with his intense faith. No matter how many times I've encountered anything pertaining to the Holocaust, I am struck, slayed, overcome, and this short testament is no different. There's a harrowing scene early in the book, immediately following the evacuation of the ghetto in which Wiesel and his family have been living, when he and the others are being transported in a cattle car to the camps. Of course, they have no idea what's going on nor what is to come, but one woman -- Mrs. Schachter -- persists in screaming and crying about some sort of fire!, fire!, fire!, even as her small boy clings to her and begs her to stop. My students and I had a discussion about this part of the memoir and Wiesel's recollections -- was Mrs. Schacter hallucinating under her extreme distress? Was this a prophecy? Was this a divine warning? Why did Wiesel include this part in the memoir? As they grappled with the questions, I told them that there was no right or wrong answer. I just listened and offered my own paltry thoughts.




Last night I had a sort of breakdown prompted by a few external situations regarding Sophie's childcare, her upcoming IVIG treatments that were delayed by insurance issues, her doctor's negligence in ever following up and calling me back, one of my son's demands, and my ex-husband's -- well -- I won't go into that. My collapse and crying was also, obviously, prompted by mostly internal situations regarding -- well -- everything. Mothering. Disability. Inadequacy. Resentment. Exhaustion. Despair. I feel acutely during these times that I just can't go on.






I texted early this morning with a dear friend across the country. We spoke of our attachment to our children and to the significant men in our lives -- how the boundaries are mutable, how we are hard put to figure out just when and where and how we "set the patterns when we became mothers," and how difficult it is to "escape" them, how our definitions of ourselves are seemingly dependent on those given to us by our children and men. "And it's not their fault!" my friend said.



It's all impossible, I think when I am most under duress, and that helps.




I just finished reading Sophia Shalmiyev's memoir Mother Winter. It's a remarkable book about a motherless daughter told in fragments. I will be thinking about it for a long time. I've read several interviews with the author and even engaged with her on Facebook. In the interviews, she talks about the roles women and men take on when they parent, particularly in regard to what I've read elsewhere as emotional labor. I hesitate to write here about my own resentments because I know their source is partly of my own making. I spoke about identity this past weekend as a mentor at a seminar for women who are mothers of adult children with disabilities. I also listened to several women talk about marriage, how their own long marriages had succeeded. I was struck by how each of these women -- how all of these women -- were doing the work, the emotional labor, even as they extolled their husband's "kindnesses" and "generosity" and so forth. I'm not sure I can get there -- here -- on this blog, today, really grapple with these themes and thoughts. But I know they are at the root of my despair.

Thinking About Things, Things About Thinking

Homemade gift from Lauren, Sophie's aide

This morning I was in my Barbie bathroom brushing my teeth with my Goby toothbrush (it says, Get Your Buzz On and came in a pink-lined fancy box with free shipping on automatic head replacements every three months) and I was thinking about how absurd it all is, living paycheck to paycheck, the products we buy (I say we meaning we Americans, we consumers, we capitalists, and if that's not you go with me for a moment) how lazy we are, how complacent -- even in the face of calamity. Calamity being the personal as well as the communal. Towelettes to wipe your privates are folded neatly in foil packets with pictures of flowers, small ones for on the go and larger ones. Summers Eve replaced by a more politically correct plain cream box with simple black lettering Body Cloth. Convenience. Attachment. The word straw. Drawing straws, disposing straws, straws showing up in just one damn turtle, someone said. Gimme a break. I'm thinking about equanimity, about holding two opposing thoughts or feelings or states of being at once without losing your shit, losing your mind. I'm thinking about calm and I'm thinking about action, how caring for Sophie for so long, so long has honed my mind my capacities my equanimity to a point so sharp it pierces through thick the veil protecting all of it my heart. We can be calm. We can still act. We can still be calm. We can act.

"Grief as Praise" on Who Lives Like This?!

Heather Barnes Jackson, Me and Allison Benavides

I hope ya'll will listen to today's podcast. We interview Heather Barnes Jackson, a mother, advocate and the CEO of Realm of Caring. She is one of the most beautiful women I've ever met -- brilliant, funny, warm and earthy. She's quite literally helped tens of thousands of children and young people -- even saved their lives.

I've been thinking so much of what she describes as a "sick obsession." It's suffering and grief, but her insight is not just provocative but deeply healing, at least to me. As I listen to the podcast a couple of weeks after we originally recorded it, I'm struck, again, by the astounding people I've met over the last twenty-four years. Grief as praise, indeed.

Listen to the podcast here or anywhere you listen to podcasts. You can also read the accompanying blog post on our website: www.wholiveslikethispodcast.com

A Show About Humanity with Two Guys In Charge

Have ya'll been listening to Jason Lehmbeck's and my podcast? I sure hope you are, but if you're not, you should start today because two of the finest young men on the planet had a discussion with us about what it's like being a sibling and growing up in a family with a child who is medically complex or who has special needs. Confession: it's getting more and more difficult for me to figure out how to write a descriptor -- how to describe my daughter in language that is clear and factual and that doesn't further stigmatize her or others like her. Special needs, medically complex, disabled, differently abled, people first, etc. etc. ad nauseum in these -- what should I can them? -- fraught times.

Anyway, my son Henry and his roommate Toby spoke on Who Lives Like This?! about their lives growing up in families with one or more children with disabilities. They also talked about their feelings, their friendship, their futures and their hopes. They shared their wisdom and experience. I think they will open your minds and break open your hearts.

Here's the link to the show. Please do us a favor and share it far and wide. We hope to continue to build a community, and this show is not just for those affected by disability or medical issues or caregiving. Dare I say it's a show about humanity?

Who Lives Like This?!

Triangles

I haven't written here in over a week, and I haven't visited many of your blogs. I have, mainly, been out of sight. I was helping to take care of my uncle who had a bad fall and was recuperating in rehab and then my house. I was glad to do it as he's family and has been very good to us, but man oh man. Caregiver central. Fortunately, my father and cousin Philip came out this past week and helped me with all things caregiving, so I'm feeling a tad more sane. Here's my cousin Philip getting all the love from me. He is really more of a brother to me than cousin as he lived with my family for a number of years when his parents, my aunt and uncle died, and my parents became his guardians.

I sure do love him. I didn't get a good picture of me and my dad together, although I did get a good picture of my dad wearing a man purse, but I won't post it here. I'll tell you this much -- he looks good even in a bright orange cable sweater AND a man purse.

I went to Portland a week ago with my dear writer friend, Tanya Ward Goodman. She sprang me from the confines of home and caregiving, got us a fabulous hotel room and coaxed me to not only do some writing of the goddamn book but to walk over 12,000 steps on both days we were there! We went to see the glorious Pam Houston, Lidia Yuknavitch and Cheryl Strayed celebrate the recent publication of Pam's new memoir Deep Creek: Finding Hope in the High Country. I haven't yet read it, but I heard her read parts of it, and it sounds beyond beautiful.

I was called up on stage that night with Pam, not because I'm a writer or because I am about to finish my goddamn book, or even because she knows me, but because she was playing Truth or Dare with Cheryl and Lidia, and one of the truths was that she was in a sorority, and one of the dares was for her to sing a sorority song. She was up on stage and turned to the audience to ask whether anyone else was in this particular sorority, and I don't know what came over me, but I revealed that I was (Reader, you might not be aware that I was in a sorority, and it's not something that I talk about nor will I, but even though it's sort of embarrassing in this day and age, I actually found beautiful lifelong friendships and had a smattering of fun back in the day -- plus, you know, Pam Houston was one, too), and there was an enormous roar in the place and I fainted dead away. Just kidding. I raised my hand, and because this was in PORTLAND and everyone there was a Lidia, Pam or Cheryl acolyte, no one else in the entire place (and there were hundreds of women in there) owned up to being in this particular sorority, EXCEPT FOR YOURS TRULY. So, yeah. Pam called me up on stage, and everyone around me yelled at me to GO! so I went. Pam sang and I pretended to sing one of our sorority's stupid songs, and it was actually kind of fun if you like singing with a famous author in front of two other famous authors and an auditorium full of Portlanders. Here's the still photo from the video that Tanya took:

And here I've gone and revealed it to more people. Holy shitoly. Now you know everything about me. Just so you won't hate me, here's a photo of me back in the day at a party. I was not drunk but I was wearing a wig for some reason, and that blue shirt is actually a dress that I tucked into a pair of tuxedo pants. It was 1983, for god's sake, and I was thin.

Sigh.

Here's another one.

How about that clown collar? Underneath was a black velvet dress with a jewel neck. The collar buttoned on. A few drinks later, here I am:

So, there you go, Reader. I showed you what I was doing back last week and then way, way back to when.

What's happening with you?

Dispatch from Los Angeles, via Holland and Italy*

dedicated to my comrades, particularly Sandra

When my friends and family check in with me of late, I reply with the above Bitmoji. Those of you who live on another, better planet, or who don't own a smart phone, or who disdain pictorial representations of oneself or, worse, words, who bemoan the dwindling use of language and/or have no idea what a Bitmoji is or even an app, should stop reading now. I wish I lived on another planet, wish I didn't own a smart phone, disdain pictorial representations of myself and, worse, of words, and I bemoan the dwindling use of language, but I do love the Bitmoji app and find endless delight finding exact representations of myself thinking certain thoughts, having certain emotions and otherwise living. 

It's going. My uncle is recovering very well here at the house, and Sophie is on her second day of her sixth month of intravenous immunoglobulin infusions. I have successfully navigated the World of Sub-Sub Acute Rehab by scheduling my uncle's health aide, bathing, OT and PT home health visits. The highlight of my week was when I paid $1.69 for his medication which filled my tiny little mother mind™with wonder, as you can imagine.

If you can't imagine, I wondered what our lives might have been like if Sophie's medications cost $1.69 over the years, as opposed to at least $70 after countless hours of wrangling and upwards of $500 when the wrangling doesn't work. All thinking by the tiny little mother mind™ is rhetorical, of course. Socialized medicine works effectively, I guess, for some of the country but could, apparently, be disastrous for the rest of us (I don't want no government coming between me and my doctor!), so we continue to grease the wheels of capitalism, the free market and Big Pharma in the labyrinthine corridors of the greatest country on earth's medical system, Brazil.

What else?

Speaking of capitalization, I've CAPITALIZED on the increased caregiver duties by increasing my meditation practice which means at this point that I've started meditating off and on all day long. Reader, I can already feel those neurons in my brain firing off peace as opposed to chaos.

The trick (for me) is to be truly mindful of even the shitty stuff, to acknowledge it in whatever way you need, to dwell on it, to muck around in it, to weep profusely over it, to wallow in it and to take your time doing it. It's only then that it rolls off your back, maybe even disappears. I say trick because, let's face it -- I generally feel completely unhinged and at the edge of consciousness, especially when I learn at 7:15 in the morning that Saint Mirtha will not be coming in, that I won't be able to attend my friend Tanya's screening, that the IVIG nurse is going to be early and -- well -- I won't bore you.

So, that's the dispatch from Los Angeles. The upcoming week includes continued caregiver duties on two fronts but also more teaching of English literature, a Clippers game with my love and, hopefully, a trip to Portland next weekend, planned for months.

* This title is a nod to those who were subjected in the early days of their child's disability or diagnosis to the treacly treatise by a certain writer who compared the journey of special needs parent-dom to landing in Holland instead of Italy. Don't ask.

Self Subversion

My uncle has come to stay with us for a while to further recover from a head injury he suffered several weeks ago after a fall. He's been in a rehab facility in the deep dark valley, and yesterday I went to pick him up. I'd like to say that it all went smoothly, that the medical system worked well, that all family members participated, that I never once lost my cool or spoke in the tone of voice I have acquired, somehow, despite myself, that lies somewhere between Stepford Caregiver cheerful and a dripping condescension. I'd like to say that getting lost in the facility and finding myself for a few minutes wandering through several rooms filled with disabled adults who milled about muttering or sat staring and nodding was at the very least, familiar.  Except that the medical system did not work well, all family members have not participated, I lost my cool a couple of times, and my tone of voice didn't just drip but splattered with irritation. And my wander through the halls of adult institutionalization resulted in a bout of sadness about nine hours later that I told Carl was something that just happens, sometimes, this wave of emotion that is best dealt with by assuming a kind of dead man's float, the better to not be drowned. The morning light brought so much relief it felt nearly funny, and I made blueberry muffins that I ate with the three men (one old, one in the middle and one young), along with pancetta that I scrambled with eggs. I cut up two blood oranges, and we ripped the flesh from the rind.

As the hours tick by and the caregiving continues, I think of self-regard, of self-care, of the illusion of the self.


Question: What do you have to look out for? 
Answer: Resentment. 


Resentment. If I could give it a shape, it'd be the infinity symbol or something impossible. If I could give it a color,  I think of something burnt red. Like the gray of embers with bursts of light. The word implacable. Women. Keeping our mouths shut. Resentment is not to be mistaken for anger which is the open mouth or red lips drawn into a smile.

Taking Care

I'm lying on my bed, next to Carl, who is going through his gorgeous photos -- birds flying everywhere, diving into water with perfect droplets making ripples, a whale breached in a sea of blue and my mind is lazy drifting except for one tiny fight there off in a corner, the corner of care. Care. Taking care. Sophie is getting her infusions of immunoglobulin this morning, her last treatment of the year and I've forgotten to tell Mirtha that she doesn't need to come until later because Nurse Hyo is here but they're all here and so this fight this tiny little fight in my tiny little mother mind™ commences, even as I lie in languor on my bed or because I lie in languor on my bed with birds and whales and nodding flowers. Everyone is always living their best life, I've said bitterly a few times in the last few weeks. And this is mine. The fight is small but it is mighty in that corner of my mind. Letting others take care of Sophie without feeling guilty, perhaps envious, even, of their facility. I stood next to Nurse Hyo and held Sophie's arm down, so thin that it really takes only two of my own fingers to span it, the vein so tiny yet so resistant. Two sticks and the rising bile, I turn my head away and curse the nurse in my mind, curse all of them or Them, with emphasis. Is that the smallest needle? I manage to get out through my teeth, the words float there between us, a rhetorical question that I instantly regret. The nurse is unperturbed, her face placid,  or at least I imagine her to be. She is taking care. The needle slides pokes yet the vein slips, you can see it under the skin yet the blood flows and she's in (in the body! the body of my daughter!) and deftly tapes over it, connects the bag of antibodies to it, this entry into the body, through the skin and impossible vein, the fragile body of my daughter. It's a strange confluence of the barbaric and something nearly futuristic except that it's now. I'm only now imagining the nurse's own mind filled with something other  -- her own birds and whales, maybe, the lunch she'll have later, how these people are trials to get through. How I cannot get out from under the blanket of care of my nagging dislike of its constancy of how it looms, always. A tiny fight in the corner, over there, even as I kneel in gratitude over here at the care at the gifts this life has brought or that come with. 

Making Pies

My podcast partner, Jason Lehmbeck suggested that I put up an end of year post, a Who Lives Like This?! list of our favorite caregiver podcasts, and I said, Jason! I'm busy! Taking care of Sophie and making cakes! Jason reminded me of the fabulous song by Patti Griffin called Making Pies which is now running through my head -- as I make cakes for the masses and care for Sophie. I think you, dear Reader, should listen while you read:



The past six months have been incredible for the Who Lives Like This?! podcast -- we've talked to so many lovely and amazing mothers and fathers of children and young adults with disabilities. We've talked to those in support positions, and we have several terrific guests coming up in the new year -- siblings, mothers, fathers, bakers, pie makers, business tycoons -- well -- not business tycoons. We'd love to have a caregiver on the show who's also a business tycoon, though, so if you know someone, let us know. Pie-baking, as you might guess, doesn't pay all the bills!

So here goes on a list of caregiver podcasts that we love.

Ours truly
www.wholiveslikethispodcast.com

Lomah
www.lomah.org

Mama, Build Your Empire
https://mamabuildyourempire.podbean.com

Mama Bear
www.mapunknown.org

Learning Not To Swear
www.tedlyde.libsyn.com

The Accessible Stall Podcast
www.theaccessiblestall.com

Reader, please leave a comment here or elsewhere if you know of a podcast that might appeal to this mighty group of caregivers. Share the post, too, if you are so inclined.

Now, I've got to go make pies.

You could cry or die 
Or just make pies all day 
I'm making pies 
Making pies
Making pies 
Making pies

On Being a Detective As an English and French Major

The whimsy of the picture belies the terror I feel at navigating the dark recesses of Sophie's brain. I am not a scientist.

Sophie's gotten four four-day treatments of IVIG, in September, October, November and December. She responded terribly in the weeks following her September and November treatments and very well after her October and now December treatments. The infusion is a blood product, and we work with a pharmacy that gets it from a pharmaceutical company. In early October, the pharmacy told us that the product they'd sent in September was "out of stock" and that they would be substituting an equivalent product. They assured me of the "equivalence." The same thing happened again in early November when the new product that we'd gotten in October was "out of stock," so we went back to the one we'd used in September.

Remember two things:

1. Sophie did not respond at all after her first infusions in September. In fact, she got worse over a few weeks. We attributed that to the viciousness of ESES and to the fact that having millions of antibodies infused into one's body was a significant thing, that her body would adjust, that it had worked before after a few times, that sometimes things get better after they get worse.
2. I am not a scientist or a doctor. I have a tiny little mother mind™ that sometimes doesn't kick in right away.

While in the hospital the other week, we learned that Sophie's ESES is still there, which wasn't surprising because -- well -- she was in the hospital and she had a terrible month. But while in the hospital, the pharmacy called me to set up the medicine to be delivered for the December infusion and told me, again, that the product we'd used in November was "in stock," but there was only a low supply of the stuff we'd used in October. While in the hospital, I wracked my tiny little mother mind™ over what the hell is going on with Sophie's brain, and it occurred to me that perhaps the product we used in October was the one that really helped Sophie so that we should try it again to see in our own little tiny little mother mind™ experiment whether it would help Sophie. I asked the pharmacist whether there was enough of that October product for Sophie, and she said there was more of the stuff that we'd used in September and November, but I insisted and she said okay. So that was that.

It's now a good week out from the December infusion with the same product as the October infusion, and do you know that Sophie seems to have turned another corner? I don't want to jinx it, but we have to make sure that we get that same product again. Here's my English and French Literature brain at work, because I'm not a scientist: Sophie's brain is exquisitely sensitive, and something about the particular combination of antibodies in the product she got in October and December relieved the ESES. Something about the particular combination of antibodies in the product she received in September and November worked negatively and plunged her into near-crisis. 

This is sort of a boring post, isn't it? I thought about providing a link to a news article I read recently regarding drug shortages and pharmaceutical companies, but I don't feel like looking for it right now. I'm living it -- what the article is about -- right now, along with living this other weird life of relentless vigilance. There's an article about that somewhere, too, and it's about some "groundbreaking" work or study on PTSD and parents of chronically ill children or those with complex medical needs. These articles make me sigh, at this point. I point out that there's no post in the trauma, that it's chronic traumatic stress disorder. It's why I walk around during some periods with a whimper in the back of my throat. I lighten the stress and dispel the whimper by conjuring my Italian grandmother who walked around the house in her latter days, dressed in black, with rosary beads, muttering pray that I die, pray that I die.

Anyway.

So, the terror that belies the whimsy is this: This is the way it is. The detective work. The constant vigilance. The inability to go with the flow. The grace of discovery, even when your brain is better suited to metaphysical poetry and words than the intricacies of the human brain and chemical compounds or blood. The fact that we are on our own is both intensely freeing and utterly terrifying.