16 June

Time With Ed. Seeking Some Truth

by Jon Katz
Seeking Some Truth

Friday afternoon, went to Ed Gulley’s house to sit with him and talk, we sent three hours together. Ed told me  I was his best friend, and he trusted me completely to tell him the truth and to speak my mind. He said I was the kind of man who did what he said he would do, and I appreciated that.

It was an honor.

Ed said one of his regrets was that we didn’t know each other longer. I told him I had depended on him for his strength and generosity, he had always rushed to help when I needed it. And who else who take a dead bear  home for us?

He asked me again if his illness  was hard on me, and I said it was at first, I was getting used to dealing with it.

Ed is going through a series of phases in response to his cancer diagnosis – at least 10 tumors in his brain.

Sometimes, when he talks, he sounds as if he doesn’t expect to live long.

Other times, he feels his trip to South Dakota and his time to think and talk with Carol and others is increasingly persuading him that he might have a very long time to live. Sometimes, I think I hear denial, other times radical acceptance.

Like most people hearing this news, he was struggling to make sense of it.

Ed is not a simple man. He is working hard to come to terms with his own looming mortality.

He met several people on the trip who have had brain tumors of years, and he is focusing on the idea that this might happen to  him, attitude matters he says.

I told him I had no idea how long he might live, but I didn’t believe in miracles, and I always played the odds. Be careful of advice from strangers, I said, especially online. Anybody can tell a story.

Ed says the doctor who told him of his illness  gave him no warning or preparation for the bad news. His doctor thought he had what is called a “brain bleed,” an intercranial hemorrage that resembles a kind of stroke, but which can often be treated.

After his MRI, the doctor came into the office and said bluntly, “you don’t have a brain bleed, you have a tumor.” Ed was stunned, and from the doctor’s words and tone,  Ed expected to die almost instantly. He was certain when he went to South Dakota that he would die on the trip.

He says it was that doctor who had led him to believe his time was very short, his future hopeless. He was now learning it needed be that sudden or brief. He realized that no one really knew when he would die, some of that depended on him.

He wasn’t ceding control of his life to a doctor.

He had told me earlier he was going to the Badlands to die.

But the trip had a different consequence and impact, Ed said. He realized that death would not be so immediate, if it came at all, he was in no pain and although he did have troubling symptoms, he came to believe that attitude  was critical, and if you focused on being positive and creative and moving forward, he now believes he might well live a long time.

And this, I believe, is the way Ed has lived his life, with a fiercely positive belief in himself and his ability to survive every obstacle thrown at him, and farmers, he pointed out, encounter every obstacle there is.

He said he wanted to fight for the family  farm and call attention to the terrible struggle of family farmers, I said I thought it was too late for that, that corner had been turned, the famiiy farm would  soon be a rich memory. For the first time since I had known him, he agreed. That was a sad moment Friday afternoon.

I see that  Ed is tired, and while he struggles to control his left side, he is learning to compensate, and is in no pain. He can get up and go the bathroom and go outside for short walks. His family has built him a solid ramp and guardrail out the back door.

You can follow Ed’s  journey into the whirlwind on his blog, the Bejosh Farm Journal.

He said his favorite crow stays by the barn behind the house and keep an eye on Ed. He says he reassures he dogs and cats every day that is he fine, he tells them they don’t have to worry. But they do.

I told Ed I was still learning how I might help him. I bring art supplies, and colored pencils, I call him every day, and i visit him whenever things are quiet and he would like some company. I take him out to lunch when he is up to it.

Carol gets frustrated with me and urges me to drop by anytime. But I can’t, I wasn’t raised that way. Privacy is precious to me, and I told Carol I would come when invited, not otherwise.

She sighed and said okay. She is quite use to dealing with willful men.

2 Comments

  1. Doctors are not trained to give their patients bad news. It has to be the toughest part of their jobs. Don’t you think they would have nightmares? I would.

    Fight the good fight, Jon.

  2. As a nurse, I cannot tell you how many doctors I have seen walk into a patient’s room and blurt out bad news, then walk out. This usually leaves it to the nurses to explain, console, and comfort. To be fair, though, many younger doctors now seem to be more compassionate, so maybe med schools are incorporating some “bedside manner” classes into their curriculums.

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