things I’ve noticed:
doctors don’t touch patients anymore
doctors are younger and younger but don’t talk any differently to me than when they did when I was young and they were old
Sophie and I are still recovering, I think, from the trauma of the hospitalization and the aftermath of having a trach and a g-tube
participating in a ritual for the Winter Solstice is profound: I gathered sticks and greens and wrapped them around some sage and wrote on slips of paper some things that I need to let go, some things that I am grateful for, some things, some things and wrapped twine around the whole thing and burned it in my backyard when it was dark. Then I put a glass of water and a tiny wooden statue of a Jordanian woman (a stand-in for a Palestinian woman) on a table outside overnight and in the morning I lit a candle, thanked the land and those whose land it was (the Chumash),
things I’ve noticed for a while:
sunsets in Los Angeles, viewed in the Trader Joe’s or Ralph’s parking lot during the winter are so beautiful they can make you cry
doctors overlook stuff when their patient is severely disabled (like, for instance, when I took Sophie in to her general internist last March because I was worried about her weight loss, her hydration, the gurgling in her upper chest, etc., and the doctor looked in her ears and in her mouth but didn’t listen to her chest and when I asked why not, she said she thought Sophie was fine and that her symptoms were part of her disease progression. I wish I’d screamed what are you fucking talking about? She has epilepsy and developmental disabilities but there’s no disease progression! Instead, I thought to myself that it was a weird thing to say but I am used to Weird Things That Doctors Say. She then told me that there was no urgency but that I should go to get Sophie hydrated at an urgent clinic that was experienced at getting veins because the nurses in her office were unable to as Sophie was so dehydrated, I guess. She said that the only place where I could go that day was in Tarzana, and it was a Friday, late afternoon, and I wasn’t about to drag Sophie to the far reaches of The Valley, especially if she was fine and there was no urgency. To make a long story short: the next day, I took Sophie to an urgent care clinic where they, too, tried to get a vein and were unsuccessful and suggested the ER where they had the Special Machine to get the small veins. So we traipsed over to the ER, were rushed in when the triage nurse took the O2 monitor seriously (the nurse the evening before shrugged it off as inaccurate) in the mid to high 80s, had an x-ray that confirmed she was very sick, was diagnosed with aspiration pneumonia and a large abscess, eventually intubated and transferred to the ICU where she struggled to live and finally made it out after 44 days with a trach and a G-tube).
Since that was a huge parenthetical story, I’ll repeat what came before it: doctors overlook stuff when their patient is severely disabled
things I’m thinking about:
how subtle it is, how biased we the abled are in determining what makes and gives a person a life and integrity. Is it language? Mobility? Vision? Cognitive ability? What one can produce? It seems like in #terribleAmerica (an aspirational culture) that all is measured by money and power and output
how much I despise football and the phrase “America’s game” that describes what is, basically, barbarity and racism disguised as “entertainment”
how fantastic the movie American Fiction is, how incredibly talented and beautiful my artist friends are — the writers, the painters, the comedians, the mothers
why we can afford to pay baseball players 1/2 a billion dollars (not exaggeration, look it up) and Beyonce et al can buy a 100 million dollar home (not exaggeration, look it up) but we can’t house the tens of thousands of homeless in this city, and I know it’s not that simple or isn’t it? I’m thinking about how we’ve just been led to believe that it’s not that simple when actually it might be
that the war in Gaza is absolute madness, and I think that people are quite literally bloodthirsty. I don’t understand what the end game is, really, for anyone who believes that kidnapping, torturing, holding hostage and murdering innocent people has a purpose AND, not OR for anyone who believes that killing more than 20x that number of people with no end in sight in defense (as They say), as well as destroying an entire region that has been oppressed for decades has a purpose, much less is a sane understandable response. It’s all madness, and if I prayed to all those people’s God (Muslim, Jew, Christian), I’d pray for peace. Instead, I’ll take a side and stand for peace.
that despite all the shit there is still joy, that the poets write about both — the shit and the joy, helping us remember that we can hold both, that the sunset tonight in Los Angeles was sublime with pink clouds spread over blue
this poem by James Agee:
Sure On This Shining Night
Sure on this shining night Of star made shadows round, Kindness must watch for me This side the ground. The late year lies down the north. All is healed, all is health. High summer holds the earth. Hearts all whole Sure on this shining night I weep for wonder wand'ring far alone Of shadows on the stars.
How biased we are. Shouldn’t it be so simple? To house people. To care. To stop bombing children?
My heart breaks with yours and my heart marvels with yours too. Solstice blessings.
Elizabeth. I have been reading your posts for years now, since you started I believe. My wife was a child development and director of a non-profit agency that provides benefits to disabled kids (we're both retired now. I'm an English major and memoir writer and voracious reader and one day she said to me "you've got to read this woman's posts, you'll love it". With that brief background I wanted to say that I absolutely love every post of yours and look forward to them. But I would add that over the years there have been maybe 8-10 posts that just absolutely blow my mind. This was one of those. Beautiful writing, just SO Elizabeth Aquino. Thank you for all the words you have put in my head, and all the emotions. Merry Christmas to you and your family from ours. We need an update on the boys! And oh yeah, I forgot to say, I'm Italian also! Cheers ~TJ