I keep thinking each video with Ed Gulley is our last, but I keep being wrong.  Cancer is like that, it doesn’t need to be consistent or liked, and it surely doesn’t care what I think.

When I arrived in the afternoon so sit with Ed while he slept and sketched, to keep him company and let Carol get a short nap, I first read him the words of St. Francis on the death of a friend:

“Remember when you leave this earth, you can take with you nothing that you have received, only what you have given: A heart enriched by honest  service, love, sacrifice, and courage.”

Ed can’t talk for too long now, his breathing is labored, his energy wanting dramatically, his body is not really listening to him any longer. He did want to sketch. But I’ve been reading from some of my spiritual books.

I wrote yesterday about Ed’s compulsion to be creative now, but he was so tired the last day or so that I didn’t even think of a video. He seems to live for his sketches, paintings and poems. They give meaning to his life, now, he says, when he can no longer be useful or productive or independent as he has been  almost every day of his life.

I did think of a video today as I sat by his bedside reading a book, silently watching him sketch so intently, even as I could see his body failing a bit more each day, and sometimes more than a bit.”Do you want to talk about your creativity?,” I asked him.

“Yes,” he said, “very much. It is very important to me now.” To my surprise, he was ready.

For me, this was our most poignant video yet, and the only one in which some tears came to my eyes.

Ed and I talked about his creativity and how it helped him navigate the humiliation and embarrassment of needing help to perform the most simple tasks, ones he had performed all by himself for more than 60 years. He was, as always, open, honest, and at one point, heart-breaking.

This most active and powerful of men is quite helpless now.

A larger than life man, he admits he has encountered something much bigger than him.

He said the worst thing for him was the feeling of helplessness he had when he has to ask someone to do everything for  him – help sitting up, standing up, going to the bathroom, drinking, eating, taking a sip of water, a forkful of food,  or spoonful of ice cream, holding a pen or pencil.

A proud and fiercely independent man, he hates asking other people to help doing these once simple tasks he always took for granted, but are now impossible for him to do alone.

He can no longer stand up, walk a few feet,  sit up straight without being propped up by pillows and guard rails on his bed.

He cannot bathe or clean himself,  or walk. He hates to bother people, nor can he wait for what he needs, time is very different for him now. He is  frustrated and  feels humiliated and stripped of his pride and dignity. Sometimes, he says, he just wants to be left alone to die.

Sometimes, he is defiant, promising to walk again in a  few days. This is typical, Ed has some hard realities to consider.

It is quiet now when I sit by Ed every afternoon. I bring some food, neighbors and farmers are bringing food to Carol and Ed every day, no farmer has to cook a meal when they are in trouble and there are other farmers around.

It feels like a chapel more and more each day, apart from Ed’s children and grand-children, it is quiet. A hospice social worker drops by to talk to Ed and Carol, so does a home care aide, who bathes him and helps straighten out the bed.

The farmers who come by all day Saturday and Sunday are all busy, it is haying and corn harvesting time. Ed is well aware that this is the time of year when he would be out and in the tractor all day.

I bring a book – Anne Tyler today – and sit and Red. Mostly, Ed is asleep, when he wakes up he is either hungry or wants to sketch. We are very much aware of one another, but we only talk occasionally. The New York Yankees radio network is always on, usually at a low volume.

But the summer baseball chatter, so familiar to people like me in the summer, evokes a certain nostalgia and familiarity, especially on his 1940’s radio. That, and the farm and farmland all around give an iconic and timeless American feeling to his room.

I am sorry about the circumstances, but I love the quiet and the dim  baseball chatter, and I think Ed does, too.

Finally, he has a chance to think about what is happening to him, I can almost hear his mind whirring while he draws. He’s trying to make sense out of it.  It’s like chess, he keeps telling me, you make a move, it makes a move.

Our friendship, uncertain and confusing at first after his diagnosis, has taken root and found a safe and loving place. I know how to help now, what I can do and what I can’t do.

We trust one another completely, we don’t need too many words any longer, we just get the other. He often needs to just be left alone.

I am sorry to see Ed suffer and fail, but I was trained well in hospice work. I can’t save him, or tell him and Carol what to do. I don’t try to manage his disease. I  have no wish to take it from them. They will both do what they have to do.

There is really nothing I can do but be there, and give voice to Ed when he needs to have a voice. The videos are very important to  him.

I can provide some respite for Carol, when she lets me. I know the drill. I bring a book to read. I fetch a drink and some food. I am quiet unless spoken to. I make sure to stop at the Moses farm market  every day on the  way to Bejosh Farm, to bring strawberries, blueberries, corn or tomatoes.

I let  Carol sleep for a half hour or so, the longest she will permit herself to be apart from him.

I pick up my book on St. Francis from time to time, I need it sometimes almost as much as Ed.

Hey Ed, I said, let me read this to you:

“My dear son, be patient,”  said  Francis to a sick friend, “because the weaknesses of the body are given to us in this world by God for the salvation of the soul. So they are of great merit when they are borne patiently.”

I like that one, said, Ed, please read it again.

(You can follow Ed and Carol and Bejosh Farm every day on the Bejosh Farm Journal.)