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.

REAL with Diane McDaniel

Passion is the bridge that takes you from pain to change

Frida Kahlo

Last week, I sat in Diane McDaniel's backyard studio and had a wonderful conversation for her really interesting podcast, REAL. I love that women everywhere are working and expressing themselves in novel ways, and I am honored to support those like Diane who are digging deep into life and helping to share stories.

Here's the link to the episode Elizabeth Aquino Who Am I Without All Of This  on a few different distributors. Listen to the other episodes as well because you'll find so much that is interesting, stimulating, alive and REAL.

• iTunes: https://itunes.apple.com/us/podcast/real-with-diane-mcdaniel/id1218912570?mt=2#episodeGuid=https%3A%2F%2Frealcancer.blubrry.com%2F%3Fp%3D124

• Google Play: https://play.google.com/music/m/Dazwqyyyzu7yrfefb4j74i4djkq?t=Elizabeth_Aquino_Who_Am_I_Without_All_of_This_-_REAL_with_Diane_McDaniel-REAL_with_Diane_McDaniel

• Website: https://content.blubrry.com/realcancer/Elizabeth_Aquino_Who_Am_I_Without_All_of_This_.mp3

Identity is Fluid

So, this is a picture of me and newborn Sophie in March of 1995. I found it this morning when I was rummaging around in a drawer on my desk. It was precisely twenty-two years ago and less than three months from the day that life as I knew it would begin to unravel. As a friend put it: BTSHTF.*

When I see these old photos of The Time Before, I can't help but peer at them in a sort of writerly self-absorbed searching for the meaning of the whole clusterfu**k that we call life kind of way. I'm constantly wrestling with identity --what it is, exactly, that makes us who we were, who we are, what makes us human. I can remember who that young woman in the picture was if I think hard enough, and lately my life's strange and beautiful circumstances have reminded me of her, too --  but I believe we hold some kind of essence that is constant even in inconstancy, if that makes sense. I will go out on the proverbial limb here to include Sophie as well. That baby I'm holding was very different from the baby that was diagnosed with infantile spasms a couple of months later. I remember thinking in the months that followed that I'd been given a new baby, so violent were the expectations up-ended. Bless my sweet heart. I don't remember when I realized that Sophie's essence was intact, but today, twenty-two years later, I'm thinking about how identity is fluid, and it leaks out of the eyes and down the face from some kind of deep dark well.

 I toured a facility for developmentally disabled adults this afternoon. The place was a sort of Bleak House and fulfilled my expectations for such a place, even if I entered it with the usual dumb hope whose source shares room with fathomless sorrow. I was going to write a quasi-bitter post about the sheer physical ugliness of the facility, how many adults were crammed into tiny rooms with no windows or decoration or flooring or soft surfaces, how we determined that Sophie's toileting needs could not be accommodated as there was no changing table in the restroom, and how when I voiced my objections to that, I was reminded that perhaps the Senior Care facility down the road was a better fit for my daughter. How old are the people in that facility? I asked. Around 45-80 years, but we have some younger ones, the director told me with a straight face, even as she took the machete hanging on the stucco wall and slashed my chest. Reader, these people were kind and industrious, I swear.

Identity, you remember, can be fluid.

At worst, the seventeen minutes I spent at the facility was a kind of Monty Python scene of absurdity with tinges of Ingmar Bergman and the careening humanity of Fellini. Know that places like this are where WE AS A CULTURE HAVE CONSIGNED OUR FELLOW HUMANS WITH DEVELOPMENTAL DISABILITIES, at least those who aren't from wealthy families (and I mean wealthy, as in rich as shit). These are the places that WE AS A CULTURE LEAVE TO POLITICIANS TO FUND, TO HACK AWAY AND MARGINALIZE. At best, visiting Bleak House was the sort of experience that has helped to define me as a person and a writer, however self-absorbed.

I lifted my head from the steering wheel after crying there for a moment or two and realized that it'd be interesting to take a photo twenty-two years ATSHTF.** If identity is fluid, it is here, leaking out of the eyes and down the face from some kind of deep dark well.

Identity is fluid. Essence is intact.
























  *Before The Shit Hit The Fan
**After The Shit Hit The Fan

What I did past midnight tonight

I certainly didn't sleep. I was just closing my eyes, though, lying on my side, like I do, when I heard her beginning to seize in her room down the hall. I say down the hall, but it's only a few feet. I can hear her, even when she takes that first breath or perhaps it's an exhale because it becomes a groan, but first it's just a breath and I hear it, even when I am just there, falling to sleep. Falling. We fall into sleep and we fall over. Onto the ground. We fall under a spell and out of a trap, away from harm and backward in shock. We fall in love and also out of. I have fallen in and never out -- of love. I am in love right now. Can't you see it? Sophie has fallen, over and over, fallen under a spell while falling into sleep. Seizures often happen at the threshold of sleep, the place where eyes are closed and the thoughts are threads, a fish tail flicks. The liminal. The measure of my hatred for them is their resistance to falling victim to -- what? Anything. They've fallen victim to nothing so my hatred is everything. I know, even so, that I've fallen for it, delusion, illusion, maya. Things have long since fallen out of place. I have no control. I sat on her bed and wiped her hair away where it had fallen into her face. I wiped her palms, the drops of sweat, the drool, fallen away from her mouth. I told her it was okay. I wanted her to fall back to sleep. I wanted it to all fall away.


Things fall apart.



Nonetheless, there were no more diapers in Sophie's closet, and after a seizure, she needs a change. The case is outside at the back of the yard in the shed.



That's what I did past midnight tonight. I wore my long black nightgown and swung my phone's beam of light, let it fall right then left. Please, no creatures, I whispered. I walked down the steps from my bedroom and fell into night. Feet on gravel, a distant siren. I reached for the box, let it fall off the shelf, paid no mind to the corners there in the dark where the light fell away and I walked back to the house with the box up on my bare shoulder, the lace of a spider-web fell and caught on the lace of my gown.

We are brave people. We are strong.

Identity Hyperbole

I just said good-bye to my heart brothers. Henry and Oliver are off to Switzerland with their father, and while I'm excited for them I also feel -- well -- unhinged. I cried a bit after they left, certain that my life means nearly nothing when they're not around. I wondered what the hell I'd do when they leave for real one day, and I cried a bit harder for my lost identity. I wish I could say this was mostly dramatics or even hyperbole, except that it's sort of, kind of not. I mean, it's the truth. Who am I without these people? Sophie and I sat in the very quiet kitchen, and I fed her some beans and rice. I ate some whole grain crackers that I've recently become addicted to, spread with a thick layer of butter. I might have eaten 1/3rd of a stick of butter, but maybe that's hyperbole. I also ate a tomato from my garden like an apple and sprinkled crazy salt over it before each bite. I sipped some red wine that's been sitting on my counter since my last book salon. I'm not a big drinker, but I figure a tiny buzz might cut the angst a bit. In less than 24 hours, I went from feeling nearly orgasmic with joy and freedom (not hyperbole) after a sunset swim in the Pacific to feeling bereft and abandoned (ok, hyperbole).

Here are some pictures from the weekend.

I was in San Diego County with Henry, attending a lacrosse tournament. When he took off with his buddies for the whole day yesterday, I lay on the hotel bed wondering what the hell I was going to do with myself, but eventually I got up and walked miles, went shopping and bought myself a funky outfit and then went down to the beach in my bathing suit and actually went into the water and swam for at least a half an hour. I submerged myself -- dove into waves and paddled around -- and then dried off, sat on a towel and watched the sun set.

Here I am coming out of the water:

Oops.

Sorry. That was another woman. That woman lives in the Caribbean Ocean and walks out of it occasionally. She has no idea what's coming around the corner. Tell her to turn around and dive back in!

Here I am:

And here's the sun setting over the glorious Pacific ocean:

Twenty Beads

The first thing I did this morning was open the long, yellow envelope with the word MOM scrawled across it. Sophie brought it home from school on Friday afternoon, along with a tomato plant in a green ceramic pot. The envelope held a beaded bracelet, purple, pink and pearly plastic strung on elastic. I slipped it over my hand and raised my arm until it stopped on that generous part of my arm above the elbow. When I lowered my arm, the bracelet fell to the floor, so I picked it up and put it in the dish on my dresser that holds trinkets, a safety pin, a Buddha coin, and earring whose pair is lost. A lost pair. Pare me down.

Even in year twenty, these plastic beads strung on elastic, sprung.

Sophie's eyes implore me. Beseech, plead, do something. I'm not sure if I'm projecting the implore, the beseech, the plea. Do something. She and I are knit, intertwined, beads on a string, strung.

Is imagination greater than identity?