Imbolc Recovery Moon
Kate’s above 84 pounds now! The tpn is working and the results are what we expected. We got Kate’s pulmonology appointment rescheduled for this Thursday. Gupta will decide on her fitness for surgery for the j-tube and we’ll get his reading of the ct scan. Potential interstitial lung disease. An important day.
This Thursday she goes on a 14 hours on, 10 hours off schedule with the tpn feeding. They couldn’t go down to 12 and 12 due to the volume of the feeding solution. That will give her 10 hours without the black bag to carry around.
I wish I could report my cold was resolving, but it isn’t. Seems to have slipped over into a sinus infection. Just one more turn of the screw. Oh, well. Major issue. More malaise. This aspect of illness I’d never truly appreciated before. The body needs to devote its energy to fending off the intruders which means it has little left over for daily life. After now having been sick myself for over six weeks (with a brief recovery respite before the cold showed up), I get the burden that Sjogren’s and malnourishment has visited on Kate. I saw it before, of course, but now I get it in my body.
Malaise is a side effect, but it’s damaging, too. Every aspect of living takes more effort. Getting up. Staying up. Walking to the mail box. Cooking. Taking care of the dogs. All done on legs that don’t want to be standing, with arms that don’t want to lift, with hands that ache. In the short term the malaise is good because it signals your body to rest. I’ve got this, but you need to slow down while I fight.
Over a longer duration, six weeks now for me, and months now for Kate, it drags us down mentally. I can’t do the things I love, or only in short bursts, not good enough for, say, painting or writing. Even important self maintenance like cooking can seem too much. When I neglect those sorts of things, I feel bad. And the feeling can soak in, change the inner weather. In this regard I marvel that Kate has been able so often to stay centered, to adjust to the constant malaise, the constant weakness. It requires mental strength, constantly applied.
This painting, my favorite at the MIA and, I discovered, Kaywin Feldman’s too, (Director of the MIA now headed to the National Gallery) shows extreme malaise. The way Goya’s hand grips the sheet, so slightly, his head tilted over, the wan coloration of his skin. Barely visible, even when in the painting’s presence are shadowy figures, look to Arrieta’s right elbow, just over Goya’s left shoulder, are ghostly figures. His ancestors? The dead, whom he felt he might join? Or the sense of evanescence he feels, part way in this world, part way out of it?
But. the malaise and these illnesses will pass, just as they did for the grateful Goya. Someday, sooner I hope, rather than later, I’ll be motoring along at a more usual speed. Able to cook, work, go to CBE occasionally. That’s my future and I look forward to it. But, today. Moving slow, swimming in molasses.
