Wednesday, A Family Trip To Wal-Mart: Lisa, Mudasir, Baseer
Wednesday, Ali and I hope to give Lisa something to smile about, she has hard a hard time since her husband was killed in a roadside bomb in Afghanistan by religious extremists. Her sons Mudasir and Baseer spent most of their lives in a refugee camp, Lisa said it was her husband who made them laugh and smile.
None of them have yet been to Wal-Mart, and Mudasir and Baseer have never had new clothes or new toys. I asked the Army Of Good for help in raising $500 for the trip, and as usual, they came through. I have the $500.
If I get more, I will either spent it on necessities for Lisa and the boys, or just give it to her outright, she has gone without for a long time and she is honest and hard working. We have helped her find a new and clean apartment in September, in the meantime we hope to let the boys choose the clothes they want and the toys they want.
I think they have all known enough extreme deprivation. This will be fun. I can’t wait to see what they will choose.
Thanks for much for your help, if anyone wishes to contribute to this excursion, you can do so by sending a contribution to the Gus Fund, c/o Jon Katz. P.O. Box 205, Cambridge, N.Y., 12816. ,or via Paypal, [email protected].
Until I began working with the Mansion residents and the refugees and immigrants, I hardly ever set foot into a Wal-Mart store. Now I know them inside and out. Life is fascinating almost every day.
Thanks for your help with Lisa and her family. We are working hard to give her and her sons and open field, as Lincoln used to say all Americans deserved. I love these photos of Lisa and her sons. She even smiled a bit. I confess I was making faces at her, and Mudasir was conspiring with me. We bonded.
I took this photo in the winter when the refugee soccer team came to Cambridge, to serve lunch to the Mansion residents. A beautiful visit.
Next week, they begin practicing for the fall soccer season, and they needed some No. 5 Soccer balls, which I found online, in various colors.
Soccer Team Balls
(Ed Gulley gave us this sign a few months ago, we’re going to hang it up tomorrow.) I’ll bring these colorful new soccer balls to Ali when I see him in Albany Thursday. As the official sponsor of the Albany Warriors, soccer balls are my responsibility.
It seems that Ed is always talking to his animals – to the cows, to his verbal Cockatiel Oz, to Shivers and Otis, two former rescue kittens, , and to his big furry Aussies, Minnie, Miss Putz, Grissom and Lovey.
He talks to the goat Sadie, and to the peacocks whose name I don’t know, and to the hawk he rescued and nursed back to health.
He talks to the crow who follows him around the farm and is most always perched outside of his window. He talks to moles, possums and chickens.
Yesterday, Oz told him he was not ready to die, so, he says, he didn’t. The dogs circle him endlessly and bark at visitors. He is always reassuring them that he is okay, that they are fine. I caught a short video of Oz’s daily dialogue with Ed, the two chat with each other all day. Come and see.
I scrapped a longer video of my talking to Ed because he seemed to have little energy to me today, and I didn’t think he said what he wanted to say. We’ll try again tomorrow.
This one was quite revealing, Ed has spirit animals all around him. Like man farmers, Ed lives close to nature, it is a primary source of his strength and identity.
You can look at this photo and be alarmed or sad, or you can look at the photo and be touched deeply by the love and commitment of a family. I felt in a sense that this was my most important photo, it shows the trust and love and commitment of a farm family.
This afternoon, my mission was to get Ed some colorful markers and pens so that he could use more color and dimension to his drawings, which are graceful and evocative, even though his struggles. I got the idea this morning, and I knew it would work. His drawings were getting darker and grayer.
Ed loved the idea of color markers, I went to the art store in Bennington while he took a nap. He was feeling better, but still exhausted.
Ed said he felt good today, was eating heartily and felt more like himself. The nurses and the family had gotten his blood sugar down from 600.
He said he would draw with me if I would hold and uncap and cap the markers and pens. He said he never really knew any longer where his left arm and leg was. I was surprised to see that he really only had the use of his right hand and arm. And he could not move himself.
Ed said he wanted to sit up, and i thought he just needed the chair to rise up, but it seems he is unable to push himself up or sit up without help. Carol can’t do it by herself, and neither could I.
Two of his sons and a daughter and law and Carol came in to get behind him and push him up so they could raise the chair behind him. Much of his body simply is not working for him now.
Farm Flower, Ed Gulley
After the family got up and left, I stood by his side and handed him the colors he wanted – green, yellow, purple. His strokes were precise and sure, he wanted to sketch a flower he sees growing outside by the farmhouse.
He seemed confident and sure with the pen in his had. He had to press the marker flat on the bed and resting on his limp left arm. He knew where he was going and what he wanted to do.
He told me his daughter Maggie and her daughter were going to Indianapolis for a week in search of a school athletic scholarship, and he promised her he would be alive when she got back. That was a worthwhile goal, he said.
I taped a longish video with him, but I decided not to put it up, we just really didn’t get anywhere, and because he was so tired, I found myself talking too much. So I scrapped it, and took another one of him talking to his animals, especially his beloved Cockatiel Oz and Shivers, the frozen kitten he rescued from a nearby pasture in the middle of winter.
That one worked, and it is short, I’ll put it up shortly.
Ed never stops talking to his animals, and he believes they never stop talking to him. He is, in every sense of the word, an Animal Communicator.
They are such an important part of his life. He loves a chicken as much as he loves a peacock or a cow.
The color markers were a good idea, Ed loved them and looks forward to getting to know them better. The idea of color seemed to brighten him.
He told me to take this one home to Maria.
I think helping Ed draw is something I can do that would be helpful. He is better than yesterday, for sure, but the cancer is relentless, it doesn’t rest. It is moving to take control of his body. Ed was struggling to find his spark today, and no one could blame him.
The house felt calm to me for the first time, I think this very close-knit family has, like Ed, found acceptance. Humans are drawn to routine.
As we know, this is an up and down thing, it is one way one day, another the next. I am along for the ride. I believe Ed when he say she has accepted cancer, and the fact that it will pretty much do what it wishes to do.
I am grateful to the Gulley Family for inviting me into their life at this time, and supporting the work Ed wants so badly to do. It is humbling for me.
“When he shall die, Take him and cut him out in little stars, and he will make the face of heaven so fine that all the world will be in love with night and pay no worship to the garish sun..” – Shakespeare.
When you drive down the Gulley’s driveway, the farmhouse is on the left and the milking parlor is right ahead. The first thing we saw there when we first visit was this strange and eclectic wall which is the welcome sign to the farm, filled with Ed and Carol’s old collectibles, art, and farm paraphernalia.
I had never seen anything quite like it, and I thought these people were either crazy or quite wonderful. It turns out I was right on both counts, The Gulley’s are unique in many ways, crazy and wonderful at the same time.
We all became fast friends right away.
Yesterday, as we left the Gulley’s, I turned to Maria, and I said “wait a minute, I ought to get a photo of the Gulley’s Welcome Wall.” We both felt it might be a sad photo if Ed dies, as will happen one of these days. He has terminal brain cancer, and appears to be in the active stage of dying.
But then, I had another feeling, it came right up from inside of me, and spoke up loudly during the night, it was a voice that said “but wait a minute, it is only sad? Is that all this wall is?”
Must death be such an awful and grim reality for so many people? Isn’t this wall really a triumph an affirmation of life and art and friendship? Why must it be sad just because the creator of it is dying?
We have become so unprepared for death and disconnected from the idea of it – loved ones rarely die with us any more, they die on machines with tubes in them out of sight of the world and beyond our reach, usually after long years of suffering – that we can only live in dread of it.
Death is a stranger to most of us, a taboo, a heresy. In the world of popular culture, it simply does not exist, it is never mentioned. We don’t see it in the movies, on the news, in books or magazines. Our leaders never mention it, unless it comes as a tragedy. Congress never debates it.
It’s curious, since it will come to all of us, but few of us seem want to know about it.
When it does come to us or near us, we have no context in which to put it, it has almost never been thought about or considered, only feared. in my hospice work, I saw again and again that there were good deaths and bad deaths.
The good deaths were one people had a chance to talk about it and think about it. The bad deaths mostly came from people and families who considered the death of their loved ones unthinkable, and thus, never thought about it.
I first saw this very grim view of death in the animal world, people remember their pain and loss for years, but almost always forget to mention the joy and laughter. My dogs are nothing but a joy to me, I will not make them into a misery, or look for them on any bridge.
I came to feel the same way about people.
When I joined a Quaker meeting in my adolescence, nothing struck me more than the way Quakers dealt with death. Rather than only grieve the dead, they celebrated the lives of their loved ones and gave thanks for knowing them, they told warm and funny stories about them.
Life was a privilege, they thought, to be honored.
In the Jewish world I grew up in, death was a signal for days, even weeks of grieving, from wearing black to covering mirrors to rending garments and endless lament. I knew it was loving, but it never felt like love to me.
People should grieve in the way they need to grieve, but I decided in that Quaker Meeting that I eventually joined that I would choose their view of death, it was an accepted, inevitable and universal part of life.
It was sad, but not only sad. Life was something to be grateful for, not just something to prolong.
In my life, as a journalist and a hospice volunteer I have seen all kinds of deaths, there are, in fact, good deaths and bad deaths.
Those bad deaths always seemed to come to the people who lost control of their death, who spent long and hard years in institutions being shuffled from one place after another to places they didn’t wish to ever be. The quality of their lives disintegrated with almost every trip to the hospital or nursing care or rehab unit or adult home.
Quite often, they never came back.
A Mansion resident who had been sick for years told me she didn’t expect to live much longer, the doctors had finally run out of surgeries and medications to give her. I’m sorry, I said. “Don’t be,” she said, “I don’t care any more.”
That’s where I don’t want to be, and where Ed Gulley will never be, the place where he no longer cares.
The people thrown into our vast and profitable (to others) system of death most often lost almost everything they ever loved and were then sucked into this endless Gulag of bureaucrats, doctors, insurance companies, for-profit nursing homes, cold and inhuman laws and enormous corporate bureaucracies for whom aging and death are a booming profit center.
We all know we are going to die, and everyone we love – people, dogs, cats, brothers and sisters, neighbors, friends and enemies – are going to die, yet the death of a human being we love, always seems a great shock and surprise, especially when it someone we know. We don’t seem to know what to do with it. A friend and minister told me he looked at death as a friend, come to take us to another place.
Ed Gulley has chosen a different path to death, once he was diagnosed with terminal brain cancer, he walked away from doctors and the health care system and began planning for his death.
He wanted to die at home, to be with his wife and family, to avoid any further invasive or expensive surgeries or treatments. In exchange, he was prepared to die much sooner than was necessary. He was prepared to trade time for choice and control.
He chose quality of remaining life over quantity. He thought about it, and chose the best path for him.
And he is getting the death he wants, in the way he wants, with the people he wants around him day and night. He is slowly losing strength, but has felt none of the pain or dislocation or discomfort of surgery or chemo-therapy.
Every since health care professional or cancer victim that I have spoken with says Ed made the right decision for his kind of brain cancer, yet no doctor suggested this course to him, or ever told him he might do well to avoid the surgeries and extreme treatment (like chemotherapy) that the health care system routinely and automatically offers.
No one ever told him there was nothing they could do for him, he had to do what was best for himself.
Ed had to come to that by himself, which is a pretty remarkable thing for a dairy farmer. And good for him. He will have the death he wants, he will have a good death. Hospice will help him to do that in comfort and peace.
The truth is, this photo is a happy one, not a sad one, if I am being honest.
Ed has had a good life, worthy of respect and celebration.
He spent it doing the work he lives with a wife and children and a host of animals he loves. He talks to his Cockatiel Otis every evening, just before he turns on his Yankee game on an old 1950’s radio, as he has done for over 50 years in the summer.
Last night, he told me Otis told him, “not today,Ed, you will not die today.” He believed him. He is always right, he said.
All of his life Ed was busy, happy and fulfilled. He loved living and working with animals, he adored his children and grandchildren and cows and tractors. He worked hard, often in difficult circumstances, but as he told me he was “my own man every day of my life.” I said I was happy about that.
When his jaw got inflected, he decided to skip the doctor and injected himself in the mouth with penicillin he usually gave to the dogs. Why would you do that? I asked. “Oh,” he said, “the doctors make too much of that stuff. It it was good enough for the cows, it was good enough for me.”
They do not make them like that any more.
Is there any life better than that?
It was, of course, not a perfect life, no farmer or mortal could ever hope for such a thing, it was a hard life, but it was a good life, and it was his life. Is the cup of life half full or half empty? Is there cause for rejoicing as well as grief?
When I look at this photo of the Bejosh Farm Welcome Wall I feel happy for Ed and the life he lived, and the welcome and energy that this strange wall conjures up. it is not a sad photography, it is a joyous affirmation of a life fully and well lived.
When Ed dies, we shall take him and cut him out in little stars, and he will make the face of heaven so fine that all the world will be in love with night, and pay no worship to the garish sun.
