Putting up with reality
I haven’t been here in ages. I miss you. I haven’t put pen to paper or fingers to keyboard or hands to cook and bake in ages. How long is ages? Art is something to occupy your mind while you put up with reality. So said poet Anne Carson. I’m not making art but I’m reading art. These are the word-hoards that have occupied my mind over the last couple of months:
Middlemarch by George Eliot — probably the third or fourth (?) time I’ve read it and probably even better each time. This time I had the great pleasure of reading along with other besotted literature people through the great Christopher Frizzelle’s FrizzLit Book Club. You can check it out here. I’m getting ready to do the Melville one this Thursday.
The Upstairs Delicatessen by Dwight Garner — currently loving and in the middle
All Fours by Miranda July — just started, more, later
Fi by Alexandra Fuller - beautiful and heart-breaking
The Best Minds by Jonathan Rosen - also beautiful, sobering and heart-breaking
Madonna in a Fur Coat by Sabahattin Ali - meh
Voyage in the Dark by Jean Rhys - a gem
other books and short stories and poetry that I can’t remember the names of — probably all art and helping me with reality
The reality I’m putting up with would either shock or bore you, according to whatever level of life you’re playing. After three hospitalizations (5 weeks out of 15) since early February, two of which were life and death situations, an inability to find a second nurse despite funding from the great State of California and nights spent suctioning a trach, days spent teaching, putting in eye drops (so many eye drops!) and taking care of health insurance snafus, ordering equipment and medications for my job as CEO, COO and CFO of Sophie, Inc. — well, I’m beat. Not just beat but burnt. I can sound flippant here on the screen, but I feel anything but. Flippant, that is. Why is it that every time I write of reality I feel compelled to minimize it, to make it better, to rush toward gratitude, to make sure that everyone out there knows that I know how privileged I really am? That I’m not slowly dying of sadness? Last night, Sophie was sleeping in her bed (a new bed that Pop-Pop bought for her — one of those glorious raise and lower, head up etc.) and it was around seven so it was time to get started with all the breathing treatments — three of them to be exact, including a 28 day course of inhaled antibiotics to hopefully stem the hospitalizations — and I just could not, could not deal with helping her to walk out to the dining room and get in her wheelchair to start this whole shebang. SO…. I did it while she sat up in bed and that went very well and was quite a triumph, to tell you the truth, after which I decided to do the g-tube feeding which meant a kind of balancing of the syringe (bolus feed via gravity for those of you in the know or is it now because I’m trying, I’m trying my best to think and live in the now, the present, because it’s really all any of can do, right?), the pitcher of measured formula, the glass measuring cup of water to flush the food, the four medications in their respective syringes, white, clear, red and brown, holding the g-tube, screwing in the syringe pouring in the water unclipping the gtube waiting until it went down or in and then adding the formula and the medicine all with one hand and my back twisted so that I had to grab and then place down the two containers and also deal with Sophie’s sudden cough/choke/whatever which means clamp the g-tube, grab the yankauer and suction the phlegm that comes flying out of the trach in hopes that I didn’t need to drop the syringe and use the catheter to suction the trach itself. All while perched on the bed. I felt like a circus performer, to tell you the truth — an analogy I’ve used before back in my IEP days when I performed in a tutu and had a high-wire act over the tables of the Great Administrators of the Los Angeles Unified School District. I’m certain that those of you who’ve stuck around since those early blogging days remember the feats of yore. Shocked yet? Bored? What else can I say? Oh, I had two eye surgeries this month and can see quite clearly (long distance) for the first time in 53 years. It’s weird, though, and not quite wonderful. Yet. Grumble grumble says the girl with the owl spectacles, the rose-colored goggles, the thick frames, the contacts the blurry face in the mirror — being near-sighted was my identity! I have two weeks for things to settle in, for my brain to get used to clear sight and then figure out what sort of prescription I’ll need for reading and middle distance. So, I guess the long game of my reality is clear and the short — not so much. Hence, art. And maybe blueberry cobbler.
I've followed your posts for 15 years or so. The perspective you bring of the caregiver's responsibility, the tasks required, and the failure of our healthcare system have brought me to tears many times. I'm a retired radiation therapist. The healthcare system is so fragmented, everyone suffers unnecessarily and pays too much for so little actual caring. When will caring become integrated rather than "I care for you for the 15 minutes you are in my responsibility then have to pivot to the next patient, and the next...". It is not CARING and honestly, damages the souls of many healthcare workersas well.
So you're telling me that you cannot yet suction Sophie's trach and eat a sandwich at the same time? For some reason that phrase the respiratory therapist said to you keeps coming back.
Why DO you always feel that you must jump right to gratitude? I'll tell you a secret- when I think of you, Elizabeth (which I do frequently) I always think, "I know she hates it when people say this but how does she do it?" How do you do it? I know. You just do but...
From outside your window it all looks as impossible as the flying trapeze artists.