I drove by the Gulley farm this afternoon, and I saw a half-dozen cars and ATV’s parked in the driveway. I texted Carol to say Maria and I would come another time, it seemed she had plenty of visitors.

She texted me back thanking me, she said she had more visitors than she had expected. I’ll probably get back over there Monday, I haven’t been in a couple of days.

I didn’t think I should be there as members of his family said their goodbyes. I didn’t feel I belonged.

I’ve been thinking over the weekend that it’s time I stopped writing about Ed every day, I think it’s Carol Gulley’s story now, it’s hers to tell, no longer mine.

Right after his diagnosis, Ed asked me to come over and we sat down together and he said he had some big favors to ask of me; he wanted me to share his experience with cancer openly, he asked if I could help.

Sure, I said of course.

He wanted several things.

First, he asked if I would write a book about the way he dealt with cancer so the story might be helpful to other people. Ed  was looking for whatever good he could find to come out of the dread diagnosis, he wished his legacy to be helping others.

Then, he said he would like for me and him to do some videos together, we could talk openly and honestly about how he felt and how the brain tumors were affecting him. It could be a useful dialogue, he said, he trusted me completely.

Finally, he said he would like me to write a book about his process of dying with cancer, including the lessons he had learned about fighting with it and accepting it. He hoped something good would come of his cancer, perhaps the government would awaken and spend billions to look for a cure.

At the time, Ed was hearing from people telling him not to believe the diagnosis, he met several people who said they had been diagnosed with cancer years ago and were still fine. A part of him was flirting with the idea that he might be able to fend the cancer off with a positive and strong attitude. He has always had that.

He suspected this might be wishful thinking, and I was certain it was. Ed was changing at this point, he had 10 tumor in his brain, and I thought he might be overreaching.

He kept keeping the door open to the idea of miracles and spirits and divine intervention.  You never know, he said. And that is true.

Ed loved to get messages from strangers online, or strangers anywhere, he had no skepticism about any of the things people he meet on the street and waitresses in restaurants told  him, there was no cynicism in Ed, outside of dairy farming, where he was tough and savvy.

He believed what some  people told him, especially when it came to surviving cancer. He wanted everyone on the earth to contact him, he wanted to hear from every one.  Social media, I told him, is a blessing and curse, it brings love and support, it also brings bullshit and amateur diagnosticians.

He didn’t really believe me. But he wanted there to be meaning in his death.

I am pleased to report that I was able to achieve two of the three things Ed asked of me as a last request from a friend. You are my best friend, he told me again and again, and I reminded him that he told me several times that his best friends were his brown cows, the Swiss Steers.

At the time, Ed could still laugh and joke.

I believe he was telling the truth about the cows.

I was glad to be second, I said. I knew how much he loved those cows. We never lied to each other.

I told Ed I would be proud to do the videos and when he could no longer do those, I would write about his very hard journey and try to convey the sense of it.

I would carry his message and do what I could to help him educate people who might have to face this awful fate. He and I did more than a dozen videos and a score of daily reports on his slow  decline into a deep and coma-like incoherent sleep, where he is now, in “transition” say the hospice people, as his organs begin to fail.

Ed is dying, quite actively, we can no longer speak to one another in any meaningful way. Most of the time, he does not know me or recognize me. I do not try to feed him or get him to eat unless he asks.

I told him I could not promise to do a book, i said I didn’t wish to write a book like that, it was not the kind of book I write or wish to write. I told him I knew publishing well, and that was not the kind of book they wanted to publish these days.

He said nothing, but he nodded. I think  he was disappointed. But I could not lie to him or make a promise I couldn’t keep.

I should be honest and say that Ed made another request to me two different times: he asked me to help him die. I could not make that promise to him either.

This and the book were the the only requests Ed made of me that I denied.

Beyond that, and at this point, I am feeling that this is not my story to tell every day any longer.

It is Carol Gulley’s story. She tells it every day on her blog.

I have been very careful to stay out of her decisions and the decisions of her family. There is much love and trust between us, but I also know that we are very different people in many ways.

The family are devout Christians, I am not. They believe Ed is going to Jesus. They expect to meet him in heaven. They are a very engaged family, very present, rocks all, and I have no family involved in my life.

At every turn, they make their own decisions and do whatever they can by themselves, they rarely reach outside or ask for help. This is the way they have lived, this is the way they have farmed, this is the way Ed will die, in his own time.

They have not asked me for guidance in this last phase of Ed’s life, I don’t really know how much medicine he gets, or why he is up at night, or what he and Carol say as they sit up at night together in the dark.

There is no reason for me to know any more than they tell me.

Carol writes on her blog today that “one of the tough things for me is when he (Ed) says he wants a drink and doesn’t realize the straw is in his mouth…he doesn’t know what to do with it. Or he reaches out for something that isn’t there…” Ed is confused at times, she says, and doesn’t know what he is supposed to be doing.

Ed’s cancer is taking over his consciousness.

This is the profound time for Carol and her family. Ed has been that way for awhile.

In one way or another, they will now have to decide how hard to fight for Ed to live, how much food to give  him, how much morphine, how hard to try and communicate with him and understand him, or whether or not to accept that he is no longer rational, and worst of all, whether to let him go.

I have no wish to be involved in those decisions, they are sacred. I admit it is difficult for me to see him in this way, but it is much harder for Carol.

People often tell me they know how hard this must all be for me, but it is not that hard for me. Ed gave me a great gift when he asked me to help in this way. He permitted me to feel loyal and good and useful.

I no longer am surprised when Ed is not rational, the Ed I knew left a long time ago. As often as not, I find myself speaking to his cancer, not to him, a sometimes frightful and disturbing experience. And now, he cannot speaking to me at all.

I love and trust this family, and I think they love and trust me. And I will keep it right there, where it belongs.

I suspect I would do many things differently than they do things, and I want to keep back of the line that tells me to back away and leave the story of the last days of Ed to the people he loves the most and that love  him so dearly.

There is a sacred circle around Ed, I am not in it. They have been wonderful to him beyond my imagination.

To be very honest, I have no idea whether Carol and her family would choose to act in the way that I might act, or do what I might do. I would be surprised if that were the case. I don’t want her to have to deal with my opinions, then I might not be able to help Carol or Ed at all.

My wish for Ed is that he suffer no longer, and leave the world soon, nobody who cares about him can bear to see him like this.

I have received hundreds and hundreds of messages from you all about my writing about Ed, and I thank you and felt I needed to explain this decision, rather than just stop.

Carol is also my good friend, and our relationship is deep and honest. If she asks me for help or advice, I will give it freely and honestly. Otherwise, I want her to have this story to tell, as she wishes to do. No one loves Ed more than she does.

This doesn’t mean I will walk away from Ed or the Gulleys, or never write about him.

I will continue to be there just about every day or whenever I am needed. I am happy to sit with him and read to him every afternoon, as long as Carol wants me to.

I will almost write about this further when something presents itself or is in keeping with Ed’s request that I help explain what this process is really like so that others may learn from it.

I will honor his requests to the extent that I can. I guess this is a kind of goodbye.

I am very proud of the work Ed and I did together, and hopeful it  has been and will be helpful to others. In my life, when I am proud of something, that is a good time to stop. It is so easy to make people uncomfortable and to overreach.

That’s what my gut is telling me.

Ed is in his final days, and Carol in the center of the storm. I if I could step in and take this awful burden off of her, I would happily do it. But that would not be the right thing either.

So I will be writing when there is something for me to write about, but not every day. This is now someone else’s story to tell, and I am humbled to step aside.