14 August 2018

Ed Gulley, Rest In Peace. Rising Above His Life

Ed Gulley

Carol Gulley was kind enough to text me last night at 10:20 p.m. that her beloved farmer had died, peacefully. It was time. Ed had suffered enough, and so had Carol and her children.

I checked last night to find out how many people die each day in the world, and of course there  is a group called the Ecology Global Network that keeps track.

Ed had a lot of company. More than 55 million people die each year on the earth, 6,316 people die each hour, and 151,600 people died yesterday.

Ed's death was noticed, most of the others will not be.

I keep asking myself: Why is that?

A lot of this has to do with Ed, of course. He was unusual, there are not a lot of people like him.

He was a born story-teller, and an artist, and also, to be frank, something of a charismatic windbag.

Like a  TV anchor, he just loved the camera, and the camera loved him. Ed was a big man who lived a big life, and he was always looking for ways to rise above himself, to listen and learn. He loved his own story and told it often.

He was a natural performer, with his long beards and camouflage pants and shirts.

Unlike his wife, he was not a private or shy person, Ed was one of those people – like me, I guess – who find it completely natural to be standing at the podium pontificating.

He would, at the drop of a hat, opine on almost any subject, especially farming and the ways in which people ought to treat one another. He spent much more time with cows than with his family, and while he loved them all very much, he made no secret of the fact that cows were his best friends.

Ed was part prophet, part creative, part farmer and part preacher. He loved to give lectures, and if I had to hear his milk price how-to-be-a-farmer lecture one more time, I would have thrown myself into the creek. His high regard for his opinions was balanced with a great heart, he loved to give and help and fix.

He was always available to others.

Then there were the blogs. Ed wanted his illness and death to have meaning, to be noticed, he hoped others might benefit from his sharing his brain cancer. Carol wrote about it on her blog, I wrote about it on mine. I joked with Ed that he was getting more attention than Winston Churchill, and he seemed to think this was only natural and right. Sometimes, I will admit, this made me uncomfortable.

Ed's death revealed the great and growing power of the blog – such an ungainly word – to reach out beyond our own lives to share our experiences and touch the lives of other people, something our vast media world has so much trouble doing.

I love my blog and am often reminded of its radical new power to shape ideas.

I told him I wasn't comfortable deifying people, as often happens when people die. If I was to write about him, I would speak the truth. Great, he said, that's why I want you to do it.

As a writer, I have always been fascinated by death, or common human experience and Ed gave me an opportunity to explore it with someone who trusted me and left me alone. He never once told me what to say or complained about what I wrote.

He gave me full and complete access to his experience, he never once shied away from talking or being photographed, he never once ran out of things to say, even as he could no longer sit up or speak easily. He was never coy about being photographed, as many people are. Go for it, he would say.

Carol is more complex, her loyalty to Ed and love for him drove her to write every single day.  She is a much more private person than he is. They balanced one another perfectly, as he was an artist, she is a writer.

I hope she keeps on sharing her life beyond her farmer. I think she intends to do that. The two of them built an enduring and valuable work in their blog, the Bejosh Farm Journal. Ed was always grateful to me for encouraging them to tell their stories.

This experience was important to me, but not  easy.

It just isn't simple to watch someone you care about die in that way or any way every day for months. Writing about it kept me grounded.

It did bother me at times. I had no wish to intrude on Ed's family, which loved him beyond words.

I didn't wish to invade their privacy, and I wondered why this death was so much more important to people than the other 151,600 deaths that occurred yesterday. But it was, people related to Ed, they wanted to know about his illness and his death, he just had that intangible chemistry, he  was always larger than life, even in death.

People loved his independence, and he was one of the blessed – he loved what he did, every day that he did it, from farming to making art.

And, as I always did when I was a journalist, I loved a great story and never turned away from one.

Ed's celebrity in death was, of course, also because Carol and I both wrote about Ed's illness and death so often. That's why some lives stand out among others, because some people notice them,  tell their stories.

I am often reminded that this is something that happens to few people.

Carol was a good and faithful Boswell to Ed, she was devoted to telling his story. She reveres and loves him.

I promised Ed that I would write about his illness and death, this, he said, would be his legacy,  we did videos together, we talked for hours, and Ed was never once at a loss for words or thoughts or opinions about it. Whenever I sat down to write about him, there was always something to say. He was a fascinating man.

We did it together, we did it well, I think, I am proud of us.

At one point, Ed told me God had chosen him to die in this way to spark awareness of the need to help children with cancer have a cure. Another time, he said he was fortunate to have a writer as his best friend, he knew his messages would get out into the world.

And Ed had a lot of messages to send out into the world.

He told me once that his death might spark a feckless and corrupt Congress to help the dairy farmers all over the country in such need.

His illness seemed to focus him on the artist inside of him even more than the farmer, until the very end, he sketched, drew, painted. He was so open to learning and changing. When he got sick, he abandoned the idea of farming and turned it over to his children.

We often disagreed.

I was bothered by his insistence that the farm continue on forever and that when he returned to the earth in 30 years to look, he wanted to see the brown costs in the dairy barn that he loved so much. I thought this was selfish, a burden to place on his children at a time when dairy farms all over the country were collapsing.

Why, I asked him, should they have to follow your dream?

I said I could not imagine asking my daughter to write books for the rest of her life if she didn't want to do that (she doesn't). I wanted her to have her own life.

He brushed off my argument. He sometimes thought his life was so grand everyone should live it.

Oh well, he said, if it didn't work, then it just didn't work.

I tried not to feed Ed's grandiosity, even as I was inevitably feeding it. He repeatedly asked me to write a book about his cancer, and I had no trouble saying no. I'm not sure your death is worth a book, I said, all of us will die. He just looked at me and accepted what I said and felt. That was the thing about Ed, he was always himself, and he always let me be me.

Ed was at peace with himself, it was never death he feared, just the pain it might inflict on others. He asked me almost every day how I was handling his brain cancer. I was fine, I told him, I don't have brain cancer.

My life as a journalist taught me how to detach myself from too much emotion.

But still, I loved having Ed as a friend and will miss him in my life. Ed left a big mark on me and on Maria, and that will not be an easy hole to fill. I believe I honored my promise to share this experience and try to chronicle it, and I believe that work is done now.

Writing about dying is one thing, death is another. This is no longer my story, it is now Carol's story to tell and that of his children.

Knowing Ed, I'm sure I will be writing about him again, but not about his death.

In the coming days, a lot of people will be eulogizing and praising and perhaps even romanticizing Ed, I won't be one of them.

He doesn't need that from me, and it isn't my style. I do not  wish to think of Ed as a hero or saint or superman, one of his great qualities was that he knew he had an ego that needed puncturing. I don't need to make him a God to love him and miss him.

Ed was larger than life in many ways, but he was also very real and very human. I am certain that is what I loved the most about him. He found many ways to rise above his life, and in so doing, transcended it.

His imperfections, like mine, were as big as his virtues. I want to remember him as he was, a big man, a devoted farmer and husband, a loving person, a great friend. It is not a cliche to say he was one of a kind.

And the last of a breed that will be missed. So long, good pal.

Posted in General
13 August 2018

Final Gifts: What Do We Say To The Dying?

What To Say To The Dying. Ed Gulley this past winter

For the past few weeks, I've sat next to Ed Gulley every afternoon as he began the painful and disturbing process of dying from brain cancer. I've watched the friend I knew vanish a bit every single day, and saw his helplessness in dealing with it.

There was not just the destruction of his powerful body which had worked so well for him for 65 years, there was also the gradual destruction of his self, of his identify.

It has been painful, of course, to see this vibrant and charismatic man decline and die.

But I respect life and accept it, and I am not shocked or horrified by it.

I am drawn to the spiritual beauty and power of death, as well as shaken by its sadness and finality.

For me, I think the hardest part of the experience has been trying to know what to say to Ed as he  was increasingly unable to speak for himself or express his feelings and thoughts to the people around him.

I have seen the hospice workers in action, and I have observed that they always talk to Ed as if nothing has changed, as if he was the person he was six months ago, before the diagnosis. As if he can hear and understand everything.

They never speak to him in an altered, patronizing or affecting way. And I can see that he likes that and appreciates it and is comforted by it.

I know that most people, myself included, have trouble knowing what to say to the dying.

Some men tend to joke and try to banter, people offer thanks and good wishes but almost everyone except the hospice workers speak in a different voice than they would normally use, as if the dying are deaf or have lost their ability to hear and listen.

After all, how could most people know what to say? Death is taboo and hidden in our world.

Mostly, I notice, I am silent when I am sitting with Ed.

I either read to Ed or tell him the news of my day, or I try to listen to the sounds he does make and interpret the motions he is still capable of. Carol talks to Ed all day and gives him news of the family and the farm, she assumes that he can hear her. She believes that strongly, and never lets go of the person she knows him to be.

People who study the dying believe they do hear and understand much of what it happening around them, and it often gives them comfort, and eventually, the strength to leave.

I have a new book a friend and reader recommended to me, it's called Final Gifts: Understanding The Special Awareness, Needs and Communications Of the Dying, it was written by hospice nurses Maggie Callahan and Patricia Helley and it helps me to better understand how to talk to Ed as he dies.

"By trying to understand, and therefore participate more fully in the events of dying," write Callahan and Helley, "families and friends can gain comfort, as well as important knowledge about what the experience of dying is like and what is needed to achieve a peaceful death. They can carry that new knowledge forward, finding continuing solace in it after the death of the person they loved, and as they face future deaths, including their own. By becoming more sensitive to the messages and needs of the dying, professionals can give better care and gain a greater sense of satisfaction."

I think my unease at talking with Ed comes from the very verbal and spoken nature of our friendship. There was really little transition period here, one minute he was right there, the next he was in another totally different place.

How do I make a transition like that? I guess the truth is that I don't, and can't.

In our own ways, we are both guarded people, wary of showing emotion and feeling, more inclined to action than agonizing or dithering, as we both called it. Ed had mastered many of the problems in his life – when a cow was sick, treat it, when a tractor broke, fix it, when a blog was suggested, just do it.

I'm the same way, I'd rather do things than dwell on them.

We talked openly and easily with one another, and with much of the banter and humor and bluntness characteristic of male friendships. Ed is much more macho than I am, he is a true man in the Marlboro ad sense, even as the artist in him began to rise, and I am not a true man in that sense.

But he respected the writer in me and the thinker, and so we met in the middle. Perhaps we were each something of what the other wished to be at times.

How to translate this into talking to him when he can no longer talk? How to comfort him and reassure him and support him as he makes the epic transition to life to another place, the true nature of which is completely unknown to us?

What to to say to him as he lay gasping for breath in his hospital bed?

The requests and feelings of the dying are often difficult to decipher.

"Their recognition of the importance of these needs, along with concern for family and friends, can cause the dying to control the time and circumstances of death until those needs are met, write Callahan and Helley.

"These requests often involve someone else; they may be for meetings or the healings of relationships."

Nearing death, Ed talked to me of visions of loved ones or spiritual beings – in his case, of dead relatives or Native Americans. He spoke of feeling warm, peaceful and loved. He saw bright lights and people from his past, some of them dead. He reviewed his life and talked of tunnels and bright lights, of his children and Carol.

As the cancer has progressed, Ed no longer speaks at all, and I no longer believe he is conscious of what is happening around him.

The hospice people say I am wrong, they say he is aware of who and what is around him, he just can no longer speak of it. They know much more than I do, but still…. I felt that was true until the last few days, but now I think his spirit is gone, his body is simply running on energy and his own fearsome strength.

My own idea of letting go is leaving Ed in peace as he gathers himself to die. He doesn't need my thoughts or conversations now, he needs to do what he needs to do. I am not really a part of that any longer, I can be there if that helps.

Ed always spoke of me as his best friend, and I was touched by that. I think more than anything, it just meant that we trusted each other. That carried over in our discussions about his death.

I think onlookers like me often miss or misunderstand the attempts of the dying to communicate about what is happening to them, or what they want. Once or twice, Ed emerged from what seemed to me to be a near coma to grab my hand and beg me to help him die.

What was he really asking me? I think he was telling me he wanted to go.

I did understand that he was not afraid of death, he was afraid of the impact of dying on his family, his wife, children and grandchildren, on seeing him wither and die.

Ironically, he was most afraid of the people who love him the most, because he feared they would not want to let him go. He underestimated them, I think, they are strong and want to end his suffering.

Ed was never afraid of death that I saw, he was terrified of being seen weak and diminished and dying.

I often assumed that what I was hearing was confusion – in medical terms, a mental state characterized by bewilderment or disorientation and in appropriate reactions to voice and stimulus.

But I also know that in death and dying, bewilderment and disorientation may stem from the unfamiliar, unexpected experiences of dying. And too often, the responses of those caring for dying people only add to their bewilderment.

The other day, I took Ed's arm and said goodbye for the night, my 100th goodbye.

He blinked, and Carol, who was standing with me, said the blink was his way of acknowledging me or saying that he heard me, of saying goodbye. I can't say if that is true or if it isn't true. I guess I'll never know.

My primary thought when I talk to Ed is to never patronize him or talk to him as if he were anyone but Ed. I'd rather not speak at all than to pity him.

If he hears me at all, I think, he hears my voice, a familiar voice, and I hope a trusted voice, I hope a soothing voice.

I think that is enough. He doesn't need to understand everything I am saying or feeling. He has bigger fish to fry.

If he knows I am there, then it was a good and valuable conversation.

Posted in General

Sandals For Joan: Action Instead Of Commiseration

Sandals For Joan

This morning, a postcard arrived from Linda in Falls Church,  Va. There was a short and simple message, which I deeply appreciated. "This is a card telling you that I appreciate you and all that you do. Your decision to move to action instead of political commiseration was an inspiring example."

How nice for her to go to the trouble of writing me that note, Linda succinctly and perfectly described what I chose to do in November of 2016, and it was to change my life in positive and wonderful ways.

As I was reading Linda's postcard, a package arrived in the mail, it was from Amazon, and it contained a pair of sandals that I bought for Joan at the Mansion.

They cost $17.49. They came about after an aide at the Mansion came up to me and said Joan needed sandals for the summer, she mostly walked around in socks and sneakers.

It has taken awhile for people to come up to me at the Mansion and let me know what people need, and I am grateful for it. A pair of sandals is not, on the surface, a big deal, but it is a big deal, for me and for Joan.

My idea was, as Linda said, to move to action rather than arguing and lament, I just did not want to spend the next four years or any significant part of my life arguing with people or wringing my hands about the state of the world.

At the time, I never imagined how many people – we call them the Army Of Good now – felt the same way.

My idea was to focus on the refugees and immigrants coming into Albany and New York State, on the refugee children that make up a struggling soccer team, and on the residents of the Mansion, a Medicaid Assisted Care Facility in Cambridge N.Y.

Since then, we have raised tens of thousands of dollars to help people, to do good, to uplift and support.

Focusing on this groups, photographically and in words and ideas, enabled people to get to know them. I never raise money for institutions, but for people. I never help anyone who won't be photographed, because I want the people who send money to know exactly where it is going.

The sandals are a perfect symbol of the evolution of this work. A small act of great kindness. They will make an enormous difference in Joan's life. Today, two computer games arrived for Peggie, and tomorrow, two brightly colored shirts will arrive for Wayne. Small acts of great kindness. All of the will make a difference in the lives of people.

A few days ago, I was able to bring Tim a used Canon Powershot camera. I thought he was getting his l leg amputated in September, but his leg worsened, and he is having the surgery today. He is not coming back to the Mansion for several months, if at all. I am thinking of him today and wishing him well.

He is a sweet and honest and brave man, I am glad he got his camera in time. I am so lucky to be doing this work, and so grateful for the support so many of you have given me, as we move to action instead of hatred and argument.

Friday, Kelly Patrick is moving out of her tend and into her double-wide trailer. I'll be there to take a photos.

If you wish to contribute to this work, you can send a contribution to The Gus Fund, c/o Jon Katz, Post Office Box 205, Cambridge, N.Y., 12816, or via Paypal, jon@bedlamfarm.com.

We fill the holes in people's life, $17.49 is not a lot of money, but it brings a lot of comfort.

And thanks for the postcard Linda. It lifted me right up.

Posted in General

Sucking Up To Chickens: The Mealworm Campaign

The Mealworm Campaign

My relationship with chickens has been up and down. Not only do they steal the cat food right out from under them, they love to take smelly and slimy chicken dumps on the back porch. Maria is cheerful about this, but it makes me edgy, and I am known to drive the chickens away with brooms, water hoses and shoes.

I will admit that sometimes i turn the water house on and ambush the hens when they come for the cat food, popping up around the corner of the house and spraying hose water on them. They cluck indignantly and run off, but always return the second I go in the house.

I cannot honestly say that chickens are dumb, they can be  crafty, but they sure are smelly sometimes.

Needless to say, this has strained our relationship somewhat. I am working to regain their trust and affection, I don't want there to be any unpleasantness lingering with me and my animals. So I have a giant bag of mealworms and twice a day, I throw some  handfuls out to the hens.

They love mealworms, and they are beginning me in a new light. Chickens, like most dogs, are a bit whorish, they tend to love whoever feeds them, especially whoever feeds them mealworms. Now, they let me come right up to them with the camera and  follow me around the pasture hopefully.

Posted in General

Happy To Pose

Happy To Pose

The donkeys, intuitive, observant and intelligent, understand me and my relationship with the camera, unlike the chickens or the sheep, who are not intuitive, intelligent or observant. They are happy to pose when the see the camera, and they expected something for it – oat cookies, a piece of carrot, some fresh corn husks.

Lulu and Fanny and I have reached a keen understanding, they will happily pose for me if I have treats in my pocket. And donkeys being donkeys know if I have treats in my pocket. And if I don't they will imperiously trot off and away from me and my camera.

Since people love photos of donkeys, I am not in a strong negotiating position.

Posted in General