I believe in small acts of great kindness, nothing dramatic, nothing over-the-top, nothing miraculous. But in a place like the Mansion, a Medicaid Assisted Care Facility in Cambridge, N.Y., small things make for big differences in life.
Last week, we cleaned out the Mansion Amazon Wish List, which listed a half-dozen different table cloths, we bought all of them. This enables the Mansion staff, to change the tablecloths more frequently and brighten the lives of the residents.
In the Mansion, meals are a big deal, a time of community, markers for going through a day, a chance to get to know the residents. They are just thrilled with their new tablecloths, it was all I heard about today.
The kitchen staff and resident aides are happy too, the room is brighter and livelier, part of our efforts to bring more color and light and excitement to the lives of the residents.
So thank you. Today I also bought a new wheelchair scale. The current one is tiny and falling apart, and the aides have to life a resident out of wheelchair to get weight, and that is often hard and painful and even dangerous.
The new one I got – it cost $400 – is coming in two weeks. It has a wide and secure base to the residents can be rolled right onto the scale, the wheelchair weight deducted, and nobody has to get lifted or pulled up.
I watched the residents eat their lunch in the dining room on some of the new tablecloths, so many asked me to thank you.
My Mansion work is totally supported by your donations. They are appreciated and they do a lot of good. They bought the tablecloths and the wheelchair scale. If you wish to help, you can send a check or money order to the Gus Fund, c/o Jon Katz. P.O. Box 205, Cambridge, N.Y., 12816, or via Paypal, [email protected]. And thanks.
I have often written how unfortunate it is that death is often seen only as sad, and it is certainly that. But it also brings extraordinarily beautiful and profound moments,. It can be a mystical and spiritual experience.
It can be a time of joy and celebration. it can open our hearts as few things can.
I experienced several of those moments today, sitting with Ed for several hours while Carol went out to go to the bank and do some grocery shopping. It seems I have drifted into old and familiar ground, that of the hospice volunteer who offers respite to the caregivers and listens to the dying.
Only Ed and I are very close friends, and that makes it quite different.
Mostly, Ed slept while I sat quietly and read a novel. At moments, he knows I am there, mostly not.
In the late afternoon, is quiet and peaceful at the Gulley’s, Ed sleeps most of the day now, and once in a while talks a little. The farmers and cousins and friends don’t come much in the afternoon, it is quiet.
Sometimes, Ed will open his eyes and smile at me or mutter some words and then fall back asleep. I believe he is descending into a coma-like sleep now, and if so, that would be the best outcome for him. Everyone who dies does so in their own individual way.
With brain cancer, the doctors say the deep sleep drifting into coma is the best way.
In hospice, they call the face of the dying the “death mask” at the end, the patient’s face is drawn and distorted, like a death mask would be. There was no death mask on Ed’s face today, he looked younger, stronger, he looked to be at peace.
I don’t take photos of the death mask.
I believe the angels – or spirits, as some prefer – have entered his consciousness and are doing their work with him. He has begun to dance with them now.
The trajectory of the illness is shifting to this deep sleep and unreachable sleep.
At one point, the light came in through the window and touched Ed’s forehead, and I had no doubt that there were spirits in the room come to visit him and prepare him for the next chapter. I said Ed is larger than life, and he is.
I closed my eyes, and was mesmerized by the silence.
It was impossible not to feel the presence of something from another place when I saw the way in which the light touched him and the farm went totally quiet – no barking dogs, complaining cats, no Cockatiel shouting, no clucking hens, mooing cows, grumbling refrigerator, laundry spinning, taunting crows, no tractors in the field, no clothes washer spinning, nothing on the radio, no grandchildren talking or playing, no cars and trucks rumbling by the house, no neighbors visiting.
It took my breath away.
For a few minutes, absolute silence, and then the world came awake again, and the farmhouse and barns were filled with sounds. Perhaps his own spirit was coming and going, or preparing to leave. I don’t know what was happening, only that something was.
Ed looked completely at peace today, almost like a statue or sculpture. I don’t recall seeing this look before.
Something was occurring in that room, I could feel it all over my body.
And then Ed’s son Jeremy came in to check on his father.
When Jeremy was a teenager, he was nearly killed in an awful tractor accident that left him in a coma for 40 days, Jeremy is perhaps the closest to Ed in understanding what he is feeling and needing now, and what he can’t bear to feel or need. Ed says he believe one reason Jeremy’s accident occurred was to prepare him for now.
Jeremy and I had never really been alone before, although I had heard about his awful accident and his grueling recovery.
I asked Jeremy how he is doing, and we had a good talk, our longest, Jeremy, the youngest, is deep and thoughtful and angry – about what happened to him, about losing his father. All he wanted to be when he was younger, he said was Ed. How awful for him to relieve a personal tragedy.
I told him he might need to speak to someone about this, he was a victim also, and I gave him my numbers. The farm people are doers, not talkers.
I’d like to talk more with him. He has been to a place few of us get to go, and where his father is now. That is a connection, for sure, one that almost no one can really share. And he is hurting as much as anyone.
Father And Son
Jeremy always wanted to be just like his father, he says, and now he tends to Ed in the most personal of ways. The two have been drawn together in the most powerful of ways by Jeremy’s accident and Ed’s cancer.
Jeremy learned over Ed and took his hand and Ed started crying, and I left the room so they could be together and talk privately. They talked to one another intensely.
Jeremy left after five or ten minutes to hay the fields. I felt close to him. He thanked me for being Ed’s friend. Jeremy is his own story of courage and rebirth. Jeremy understands acceptance, he understands what is happening and where it is going.
It was a very beautiful thing to see the connection between father and son, the love and the trust passing between them, so strong and thick you could touch it.
Jeremy said he and Ed fought all the time, they were both bull-headed and resentful of authority. But now…it was different.
Death can be like that, profound and meaningful.
The scene was sad, but also beautiful, a testimony to what is so unique about the human spirit. No other creature on the earth feels the things that we do.
I’m going back tomorrow afternoon, as I usually do. I’ll bring corn and blueberries or peaches, as I usually do. Carol and I will sit for awhile and talk. She is slowly accepting what is happening. I just listen to her, she doesn’t need any advice.
I receive a lot of messages urging me to tell Carol or Ed about this cure or that, or this treatment or that, but I refuse to do that. Ed’s medical treatment is not my business, and I don’t interfere with it. Carol and Ed have a doctor they love and listen to, and it is not for me to give them medical advice, especially from strangers on the Internet.
That is not why I am there.
In many ways, as I wrote yesterday, Ed is already gone. He is up at night, struggling to rest, but alway asleep now when I come. We talked briefly and he said he was ready to go, he didn’t wish to live like this any longer.
He also said he had to go out and tend to a sick cow. Carol said he said the same thing to her last night, she told him that he already had taken care of the sick cow.
There was no talk today of walking or visiting the cows. Perhaps that will come another day.
Carol is struggling to know what to wish for.
She doesn’t want to let him go, she doesn’t want him to suffer.
There is no easy place to be for her right now, but she is strong and thoughtful, and loves Ed very much, and she will do what she needs to do and decide what she needs to decide.
Should he be encouraged to eat? Walk? Take more medicine?
Or given permission to let go, as he says every day he wishes to do? There are all kinds of questions, there are no easy answers.
I remembered a scene from Jenny Downham’s book Before I Die:
“It’s all right, Tessa, you can go. We love you. You can go now.’
‘Why are you saying that?’
‘She might need permission to die…’
‘I don’t want her to. She doesn’t have my permission.”
I found my visit today uplifting, I left feeling strong and grateful for my life.
I read half of a novel sitting there, held Ed’s hand for a few minutes, gave him some water, and I remembered yesterday, when he asked me what he had done to deserve to be stricken in this way.
I brought a poem that a long-time blog reader and cancer survivor named Lorlee e-mailed to me. She went to a cancer writing workshop and the exercise was to write to cancer, and have cancer write back.
This, she said, sharing the poem, is what cancer wrote back toher. She thought it might help Ed to not blame himself for something that is not his fault:
The poem is called “It Is Not Your Fault.” I read this to him this afternoon.
“I am random
I am not selective of my victims
Don’t take it personal.
I am simply a force in nature,
scattershooting.
I am not malevolent.
Just haphazard.”
I told Carol I would be happy to go sit with Ed Thursday afternoon. Tomorrow. It is the right place for me to be. Maria wants to come, it’s on the way to belly dancing class. All around us, life is everywhere.
Every now and then, I walk out into the pasture without Red or another border. The sheep look at me suspiciously, as if expecting Red to pop out my pocket at any moment. Sheep are not the brightest creatures in the world, but like chickens, they are smart about what they need to be smart about.
Once they were satisfied Red was not with me, they sidled up to me and sniffed my pockets, hoping for a great. I don’t give treats to sheep, they get too pushy. But it is nice to visit with them once in awhile.
More and more, it appears Flo’s kidneys are failing, a common occurrence among barn cats in the country. She is gulping a lot of water, losing weight, sometimes skipping her food.
We have chosen to treat this naturally, we’re not taking her to the vet for more blood work, tests or X-rays and scans, no pills or other treatments.
Flo is eating right now and drinking a lot of water and we will keep an eye on her. If it appears that she is suffering, we will most likely euthanize her quickly. We don’t know how old she is, she lived in the woodshed here for two years without showing herself until she came out in a snowstorm, sizing up Maria accurately and turning her charms on me.
Since then, she comes inside in the winter and on stormy nights. She loves to nap in my lap when I nap.
Flo and I have a sweet thing going, she has seduced me into bringing her into our lives, and she is the first cat I can say I truly have loved. She is also a barn cat, through and through, loving her independent, resourceful, and sometimes murderous life.
I have great respect for barn cats, they live the free lives of cats, and often pay a price for it. Good news for mice, baby rabbits, moles and birds. Flo has had a great life.
I planned on taking it easy this week in order to replenish the depleted Gus Fund, which supports our work with the Mansion Residents, the refugees in need, and Ali’s soccer team, the Albany Warriors.
Thanks for your responses, so far I have received about $800 in contributions, plus $500 to help pay for the soccer team’s upcoming trip to the Great Escape Adventure Park towards the end of August (Thanks Liz, you are an angel).
I also scrambled a bit to order a new lightweight wheelchair scale for the Mansion, they said it wasn’t urgent, but I think it was. The current wheel chair scale is quite old and rickety, and is very difficult for the staff to use.
Some of the Mansion residents can’t stand up to walk on a scale, they have to get their chair on a wheel chair scale, the existing one is small and damaged, it demands a lot of labor from the staff. I did an unusual amount of online trawling for me – the one we needed was listed on one website as costing $800, but I found it on Amazon for half of that amount.
So it’s on the way, coming to the Mansion in three weeks. The new tablecloths are appearing in the dining room, (bought by you on their Amazon Wish List). Everyone who needs an air conditioner has an air conditioner, the culmination of a two-year Army Of Good project.
The residents look at these for hours every day, they have really brightened their meal time.
So my Gus Fund is slowly coming back to life but still not quite where I need it to be in order to move forward, I want to get it between $2,000 and $3,000. We are getting there. i’m postponing refugee visits until I know I can support them, even in a limited way. In our universe, this takes a little time. We have big hearts in the Army Of Good and small wallets, which is one of the most wonderful things about all of you.
The small donations are just as important as the big ones, it touches my heart to see those $5 and $10 bills from all over the country. Talk about grass roots.
And the other good news is that our soccer team is going to Great escape and the Mansion residents are getting a modern wheelchair scale. Also that Sifa has moved out of her drug-infested neighborhood and into a nice apartment, Lisa and her boys fresh food and new clothes, Hawah loves her new apartment and Said is comfortably settled with books, a TV and a smartphone that lets him talk to his children in Iraq every day.
Life is good. I could use a little more help to get rolling again, small donations are really what we are about. You can contribute two days: by sending a check to The Gus Fund, c/o Jon Katz, P.O. Box 205, Cambridge, N.Y., 12816, or via Paypal, [email protected].
I hate to ask for money, but going good is a gift to me, and I see, and to many of you, one of the richest experiences of my life. And I am just getting started. We do our work in a small and measured way, and it counts for a lot. I wish you could see the gratitude and joy in the faces of the people we help, thanks to you.
