Sunday woke calm and quiet. I had been missing my God-connection most terribly—St. Joe’s, home without help, Crouse—it had all been too chaotic. (How do you do morning devotions with a phlebotomist putting a too-tight tourniquet on your arm?)
Somebody wrote that if more people prayed in the morning, fewer people would need to pray at night, so my devotional time always has been in the morning. I’m too tired at night. I give God my best time, when I’m rested and fresh.
My morning devotions had consisted of reading sacred texts—the Bhagavad Gita, something Buddhist, the Holy Bible, the Holy Koran—some breathing and meditation, and prayer, beginning with gratitude, followed by regret for things done wrong (what is sin but knowing what is right and not doing it?), prayers for those I love, then prayers for those I don’t love (sometimes called “enemies”) and finally a time of listening, letting God talk back to me. Then I would get up, put some hymns on the CD player, and do my exercises.
Well, that time’s done and gone behind me, but Sunday I tried the ritual again. Hard to read the bible; eyesight gone from sharp rises and falls of blood sugar due to insulin and no insulin. It’s not the high sugar that does the most damage; it’s the sharp rises and falls. So the eyesight is bad, not to mention that my glasses have not been cleaned recently. It’s not something that caregivers think about—they are all so young and so healthy—and I haven’t asked.
But I had my devotional time and it was good. God is there, always, waiting and welcoming. Every day goes better with God.
In the afternoon, I had visitors. Melia came, looking so young and healthy and fresh. She talked of the new house, tearing up carpets, painting—who knew? Caulking for eight hours. Geez. Well, that’s what Seth does for a living, and is he going to let their house be less healthy than the houses on which he’s paid to work? This is their forever house and it will be done right. And Melia likes tearing up carpet.
Arleen came, bringing small thoughtful gifts—envelops, stamps, pens. Whoever thinks to bring such things to the bedridden writer? I have no memory of what we talked about—the casual desiderata of old friends, revisiting old stories.
Then Quinn, the new pastor of Plymouth Congregational Church. He and his partner bought a house in Fabius, between Syracuse and Cornell where the partner does something—ecotech? Centro’s sign said “park & ride” and Quinn, not knowing, actually believed it. He planned to commute by bus, only to learn that Centro runs one bus a day—6:30 a.m. and 4:30 p.m. How unworkable is that? Who works in the city from 7:00 to 4:00?
Then Peter, the nurse practitioner from Crouse’s Palliative Care Unit arrived and I have no memory of what we all talked about, but wasn’t it nice? Friends old and new gathered around my bed where we all could talk but I didn’t even have to raise my head from the pillow. Now that’s the way it’s supposed to be when you’re old and sick and crapped out.
In the evening, Stevie the Wonder POA came and we did more paperwork. Honestly, what is it with the paperwork? Utterly totally crapped out in a nursing home and the paperwork still follows you. There oughta be a law that when you enter palliative care then the paperwork has to stop.
On Monday, the day again began with devotionals. I have walked with God these past thirteen years; I cannot possibly stop now. A decade of gritty activism was based solely on doing God’s will. In this great land we separate God from governance with the same arrogance we use to separate mind from body. What are Medicare, HUD housing and VESID if not God’s call for us to care for each other?
Tom, the aide who showers me, returns after the weekend off and brings my 6:00 a.m. juice, coffee (I have learned to call instant Sanka “coffee” on a short-term emergency basis) and a Danish—20 seconds in the microwave.
I have been promised Dr. Richard Lockwood at 6:00 a.m. I see him pass in the hallway twice but he does not come into my room. First I am told that he has not come, then I am told that he has been and gone. Stevie the Wonder POA and I decide that he will call the Iroquois administrator.
At 7:00 a.m. I get my medicine, prescribed by Dr. Ghaly, through the nurses, to Dr. Lockwood: clonidine and some kind of vitamin, both for anxiety, angst, screaming at the staff.
Having been up since 5:00 a.m. (my normal waking time), fed, rehydrated, medicated and prayed, I fall asleep, waking in time for the breakfast tray at 8:45, and proper coffee.
After breakfast, an aide gets me dressed and then we wheel out, stopping first to talk to the director of nursing, who insists that Lockwood’s momentary social chat with me counts as the required doctor’s visit.
Bullshit. Lockwood did not know I was here for palliative care, had not read my hospital discharge note, and only spent ninety seconds with me. The maintenance man could have done as well. The nursing director assures me that Lockwood will see me the next day.
Our next stop is the gift shop, which is run by the inmates and has been closed every time I’ve asked. It is now opened and I propose that I might sit and make change, and the aide responds that would be good and we should talk to Activities about it.
We go outside and my soul sings. This is the world I am part of: the deep green of grass and trees, the songs of birds, the enormous openness of sky, the feel of air moving against my skin. This is life. This is reality. This is where I belong. The Holy Koran repeatedly identifies the hereafter as a garden and one day it hit me: it is Paradise, a return to Eden before the fall. All God’s children are going to return to their place in the natural world. Hallelujah and amen!