10 May

A Visit With Ed Gulley And Shiver. Acceptance, For Sure.

by Jon Katz
Visiting Ed

Ed and I were supposed to have lunch today, but he had to cancel, one of his grandchildren was rushed to a hospital in Albany after suffering a high fever for days. I really felt for Carol, the worry in her face  was profound.

Their grandson is undergoing tests today and tomorrow. I  thought it would be helpful to bring some soda and pizza and dessert over for dinner and leave it there, we didn’t expect them to be home.

They had gotten  home early from their meeting with a lawyer to sign papers that will turn the farm over to his children, and give Carol lifetime rights to the farmhouse..

Ed has been diagnosed with terminal brain cancer and next week, he and Carol are hoping to set out on a trip to Indiana and visit some old friends. If Ed is up to it, they might take a break for Montana, if not, they’ll come home for good.

There are numerous  tumors in Ed’s brain, and he has declined any kind of extreme treatment. Many of his friends and relatives have urged him to undergo surgery or chemotherapy, but he won’t, and is at peace with his decision. It is not a decision I would every argue with, one way or another. It is intensely personal. But many people believe they know better.

We sat in the new room Ed built himself – his rescue cat Shiver hangs out with him there – and we talked for an hour or so. I invite Ed out to lunch every day, sometimes he can make it, sometimes he can’t.

Ed and Carol  want to spent some time alone together traveling, this is very important to him. I hope it is an easy and meaningful experience for them. I urged them to buy a new Apple laptop, as I suspected, they went for a cheaper Hewlitt-Packard laptop from Staples, as I knew they would.

I hope the customer service is as good. This is a more comfortable choice for them.

I wrote yesterday about being the friend who cares, and I hope to be that  friend for Ed. The friend who shares his pain but does not try to take it from him or steal it. The friend who can  touch his wounds and his pain with a gentle and tender hand. The friend who can be silent in despair and stay with him.

I sometimes have trouble with the gentle part, I asked Ed how he was today, and he said “great,” without skipping a beat, as men do, and I looked him in the eye and poked him in the chest and said “don’t lie to me, do you hear me? Don’t lie to me. You can tell me to mind my own business, but you can’t lie to me! We’re not going to do that.”

He stopped and looked startled and told me how he really felt.

He is okay, he is accepting his illness, he has no plans to “battle” his cancer, as people often say they are doing.  Ed says he feels pressure in his eyes if he reads too long, and tires easily. He spends the day on his new throne, the couch in the living room extension he built last year with his own hands and with some cats and dogs.

He is not withdrawing in any way, quite the opposite, he is eager to meet and talk with friends, neighbors, farmers, e-mailers.

Carol is always with him, except when she runs out to shop.

The obits always say someone lived or died after a long “battle” with  cancer, but it is not a war in my mind, it is a powerful chapter in life, and that kind of illness cannot often be cured by will alone. Ed isn’t in a fighting mood, he knows better than to militarize fate.

I will be  honest, he is different already, he is beginning to leave me and others, he has changed.

And of course he has.

He is almost desperate to talk about what is happening to him, he talks to waiters and salespeople in box stores about it, he talks to neighbors and old friends and relatives and blog readers and e-mailers about it. He is a man on a journey, opened up and changed forever.

Neither he nor I can tell any longer what the line is between the cancer and Ed’s mind.

I just don’t know. I am quite sure he doesn’t either.

Ed’s sense of humor is there, he is seeing visions and ghosts and Pilgrims and Indians, he is in a deeply spiritual mood, it is a time of  reflection for  him, not lament. He is gentler, softer, more open. He is very centered on  himself.

He is thinking and writing and reflecting all the time, he does not stop.

I don’t have any answers for him, and he has few questions for me. I think of the friend who can tolerate not-knowing, not curing, not soothing, not healing, and who can accept the reality of our ignorance, our mortality, our powerlessness.

I hope to be that kind of friend for Ed, he has always been that kind of friend for me.

I told him I would invite him to lunch every single day. He should come when he wants to, if he wants to. He might be leaving as soon as Monday on his trip. Godspeed.

2 Comments

  1. this is a beautiful and heartfelt post, Jon. I know you are and will be, a true friend to Ed………. and he will welcome and embrace your love and acceptance. This is a rough one….but it sounds as if he is living each day as he wants to- and that is most important. I will follow both of you on the journey ahead
    Susan M

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