A different kind of day for Ed Gulley today.
Restless night, and today, he wouldn’t eat, refused his medicine, asked that there be no visitors, not even the hospice aide, not even me.
Carol wrote on their blog in the morning that it was a difficult time. Things had changed.
She texted me in mid-afternoon as I was thinking of heading over there, and said it was not a good time for visitors to come. Ed didn’t wish to speak to anyone. He seemed to be withdrawing into himself. I stayed home, of course.
This was usually the time when my therapy dogs Izzy and Lenore backed away from the people they were comforting. There was no need for them anymore, they sensed this. The animals around Ed were quiet yesterday. His chatty Cockatiel Oz was silent, all the time I was there. There was no sign of Ethel, the sleep-walking hen.
Carol told me Ed was sleeping a great deal and was sore, but that he didn’t want any food or any of his medications. I messaged back, I said it sounded like he was getting ready to leave.
She said she had the same idea. I don’t really know what is going on in Ed’s mind, some things are just not knowable.
He has repeatedly said in the past few days that he wants to be left alone, that he is tired of living in this way, that he wishes to die. For him, helplessness is worse than the cancer.
Ed has also said he has plans to draw and write more, get up and walk, and return to his farm sculptures. He said he wanted to respond to his cancer, tit for tat. That he had plenty of life to live.
I honestly couldn’t tell if it was Ed talking tough, which he often does, or if he believed what he said.
He was getting confused, not sure where he was living, or what had happened that day, or when the cows needed milking.
He says one thing, but his body says another. It does not say he will walk, visit the cows, return to his artwork. It seems to be closing down. Every person is different, every cancer is different. I can’t know. Neither can the doctors.
Our last open and honest talk with one another was on Tuesday, when he told me cancer was a battle, and I told him it really wasn’t, he had no weapons with which to fight it. His cancer, I said, did not retreat or give things back. What it takes away stays away. I hope he didn’t spend his remaining time in combat.
He asked me if I thought he would walk again, and I said I did not know.
But he had no feeling or control of his left side, and I could not see how he could walk that way, out of balance, with no muscle control, and on one leg. He was clear and listening, he peppered me with questions.
He kept asking me if I thought he was fighting the cancer and resisting it, and I said yes, he clearly was. He said he didn’t know he was doing that, he didn’t mean to make it a battle. He knew it wasn’t a fight.
He was, I said, referring to his illness as a chess match, a conflict, a battle of wits. They make a move, he said, they make a move.
I asked him if he had found any peace in this. I told him I did think he was fighting the cancer, trying to out guess and outwit it, he was fighting it every day in every way. I told him people were grateful for sharing his experience so they might learn from it. I hoped he gave thought to the good things he had done.
It was his nature, I said, he was independent and strong, I could not imagine his giving up control of his body without fighting. I knew how much he hated being dependent on other people to do the things he has always done for himself.
But there was also a time for acceptance, I said, a time for peace, a time for letting go. If he had had enough, no one would want him to suffer more.
No one, certainly not me, could tell him when that time was, he alone could make that choice, in concert with Carol and his children. They would not be happy about it, but they would honor his wishes, whatever they were.
I don’t know how much he heard, understood or retained. He seemed to be watching me closely, and listening to me carefully. When I was finished, he looked at me for the longest time, but I don’t know what he was seeing, or feeling. I could no longer tell.
He said he had to sleep, and his eyes closed.
Yesterday, Ed did not wake up when I was there, except to talk to his son Jeremy. I’m not sure he knew I was there.
We had said our goodbyes many times, and had our talks, and shared our stories with one another. I think he was finished with me, as he needed to be. I didn’t matter at this point.
Sitting there in that room yesterday, the sunlight striking his forehead, I felt us separating from one another, I felt him leaving, not leaving me so much – this truly is not about me – but making his peace with the world and beginning the process of letting go and gathering himself and his strength for what was to come.
I don’t mean this in a painful or regretful way, Ed and I have stood alongside one another throughout this ordeal, I just felt he had left me, and gone to a different place. I figured out how I could help him and Carol, and I did. Now I can’t help him any longer.
I am at peace with it.
I didn’t think we would ever speak again much, or laugh with each other, or argue and tell stories. I came home feeling sad, and spent. I knew I was depressed.
On Facebook this morning, a woman posted a message saying she was tired of reading about Ed, she had just lost two friends, and might I post a warning when I was writing about him so she could skip reading about him. She said liked my blog and wanted to keep reading it.
We had a brief exchange, as you might guess, and she apologized sincerely and profusely. She is a good person, I can’t imagine why she wrote such a thoughtless thing in such a thoughtless and public way, and I deleted her comments.
I wanted to cry at the way even good people can be. I am in no mood to fight.
Ed loved to hear my TV stories, and I loved to hear his farm stories.
He always wishes he had taken more time to free the creative lights inside of him, I always told him it wasn’t too late. He always thanked me for encouraging him, he thought he owed me so much. I thought he owed me nothing. We both wondered at the miracle of our friendship, which, on the surface, seemed unlikely.
Ed is the only person I think I will ever know who would take a dead bear out of my pasture so happily so he could skin it and make a necklace of its claws.
I hope that it is true, that Ed is letting go, that he will stop falling apart and dreading tomorrow.
He has suffered enough, and my wish for him is that his suffering ends. I’ve seen many people in hospice decide to stop eating and taking medication. It is usually a sign that they want to leave.
Perhaps in concert with Ed, I sat alone in my living room chair in meditation and quiet during the time I normally sit with him. I felt quite connected to him, as if we were sitting next to one another.
We didn’t actually need to be looking at one another any more, we were in the spiritual realm now.
I felt his presence, we were talking and laughing trading stories, he was trying once more to teach me the ridiculous old farm sayings his father had taught him. I was, as always, a horrid pupil.
We didn’t say goodbye, we just were suddenly apart.
I prayed for peace for Ed.
No one could have done more for Ed than Carol and his family, he loves them all dearly, but there is a time to let go and accept the will of the world. To respect life and bow to it.
That is for him to decide, and his body and spirit. I have the feeling that is where he is now. I am sure he will find acceptance and peace.
“Well,” he said after we had talked Tuesday, “thank you man.”
There was a pronounced finality to the way he said it, and I felt that. It was formal for us, and final. And he offered me his hand because he was too weak to hug or be hugged. “Love you, Jon,” he said, as he always does.
Tomorrow is another day, and there might be another Ed. I wouldn’t be stunned if he was wide awake and taunting me, back in the championship chess match.
Somehow, I don’t think so.
I don’t know if i will see him awake or alive again.
A part of me hopes so, a part of me hopes not. I suppose the people who love the dying are just as powerless as they are, and need to embrace acceptance as much as they do.
We have to let go, too. There is more crisis and mystery just around the corner.
You can follow Ed and Carol’s story on their blog, the Bejosh Farm Journal.
Jon, you have distilled the essence of the dying process and its effects on family and friends in this post. I am a hospice nurse. I can tell that, from your experience as a hospice volunteer, you have witnessed the last days many times. I truly believe that the spirits, angels, or whatever one wants to call them, are communicating with Ed and leading him on his next journey. It is indeed hard to want a peaceful transition for one’s friend, yet at the same time mourn the loss of his physical presence. I believe you and Ed have connected on a metaphysical level. You will be a valuable resource to Carol and family as they confront the circle of life.
I was very touched by your blog and you love for the Farmer. That this has happened to such a vibrant well liked honest working person is one of life’s injustices. I have been down this road where you are now –loosing someone that is not related but has become a powerful person in your life. This person too should have lived a full life well into old age instead melanoma took him mid forties. This journey That Ed has taken seems all too familiar too me and I guess that is why Carol’s and your blogs have struck me so deeply. Being let in on this very private part of a life of someone I don’t really know has moved me in ways I don’t quite understand but am sure that it will stay with me and make me a better more compassionate person. I hope that Ed can move on easily, peacefully and that his family will see this and be at peace with it. Thank you for sharing this experience.
You and Maria are good friends to Ed and Carol and their family. Thank you for sharing their experience through this next phase of life cycle. Bearing witness to this stage is so difficult but much better than hiding it away in a hospital. To be surrounded by family and friends and to be given permission to “move on” is a blessing. Thank you.
I’m so sorry for your heartache.
Thank you for this post.
My mother was reluctant to go to hospice, but knew she needed to go. She was living alone. She went on Wednesday. On Saturday, once she said goodbye to us, three daughters, one granddaughter, four grandsons.. We waited for my son to call. Her first grandson. He lives in Philly. After “talking” to him, more like listening to him say his goodbyes, she could not talk anymore. She passed less than two hours later.
Reading your last post about Ed, brings much of this back. I thank you because the process makes sense to me now. When you are going through it, you miss many of these details or are unaware of them.
I am sorry that you and Maria will be losing such a wonderful man. I was planning on coming to your Open House to meet you and the Gulleys.
You are in my thoughts. Take care of yourself Jon.
Jan from Maine
Sorry about your loss, Jan, thanks for the note. Hope to see you in October, Carol will be here, maybe even Ed…Who can say? 🙂