When I saw Ed Sunday morning for the first time in two weeks, we both just hugged each other, kissed and cried. Something big tough farmers like Ed and wary and cynical writers like me are not accustomed to doing with other men.
But you could actually feel the love and connection passing between us. Ed seems able to see right through me, he told us right off that Maria encouraged people with love and kindness and I encouraged people by bullying and browbeating them, and the truth of this surprised me, it was especially perceptive of Ed, who has other things literally on his mind.
Beneath, the browbeating, Ed said, I had a great big heart. That almost got me to tear up.
We were just so happy to see each other. Ed says I am his best friend, and I am never sure what that means, and intimacy always causes me to go into my shell, because it was so often dangerous to me, but Ed knows me, there is something in each of us that connects with the other.
Ed has untreatable brain cancer, there are 10 tumors in his head. He and Carol have just returned from a trip together from White Creek, N.Y., to the Badlands of South Dakota and back. Ed looks good, talks a mile-a-minute, has a million observations to make and fresh lectures to dispense. His new scheme is to ride around to cities and towns and give lectures on being positive in the face of suffering and trouble.
His farm looks like a construction project, sons, daughters, grandsons, granddaughters, in-laws seem to be working around the clock installing new beds, ramps, a motorized cart and a dozen other improvements and replacements. The sawing and hammering go on all day, Ed Gulley has become an intense and loving family work project.
Since Maria and I are not close to our families, and do not ever call on them in an emergency, it is an amazing thing for both of us to see, the family has circled the farm wagons around Ed and is determined to make him comfortable and happy. Tonight, his granddaughter Schuyler (above) is cooking dinner.
The other night, Ed assembled all of his grandchildren – there is a busload of them – and told them to be themselves, make up their own minds about things, and resist the temptation to let other people tell them what to do. I have no idea how this wisdom was received by his captive young audience, but they all sure seem to love him.
Ed was passionate about the wisdom of his refusing any special treatment for his tumor. He believes if he had permitted the biopsy the doctors wanted to perform, he would be dead now. Somehow, the medical process made him feel as if he was in imminent danger of dying, when in fact, he was just beginning a new chapter of life.
His trip with Carol – they seem to have renewed their vows and love deeply on this journey – taught him a different lesson. He says he is very much alive, he is eager to spread a positive message to people about cancer and illness, and he says he could well live for years, even longer.
Ed and Carol left hurriedly for their trip about two weeks ago, even as Maria and I were on the way to their house to give them leather journals to write in. They are still sitting on our dining room table. Ed said it bothered him every day of the trip that they had left without saying goodbye to us, and I suppose I was bewildered by it. We understand that we are all important to each other, we didn’t take it personally.
I didn’t hear from Ed or talk to him during the trip, and it seems that Ed and Carol were in need of reconnecting with one another in preparation for this profound new experience. So they did.
I was frustrated to not be able to help him or even know where he was, although I got comfortable with the idea of doing nothing as a real contribution. Ed was worried that I might be upset by his prolonged silence, and I was, for a few hours, but it is his right now to do whatever he wishes whenever he wants, and I explained to him he need make apologies to no one, least of all me.
I understand that Ed declined sharply on the trip after a few days, and grew frightened, but today things seemed to return to a better placel.
We hope to continue to encourage and support Ed’s great creativity. Maria and i brought Ed an acrylic painting kit, complete with brushes, palette, easel and canvases of different sizes.
Ed was very happy to get them, he wants to start painting. I also brought him and Carol BLT sandwiches from the Round House Cafe. He loves those sandwiches.
Ed said he would love to go out to lunch with me again regularly, as we did before, but he but is anxious about his left side, which is growing weaker and not functioning well.
He is losing control of his left eye, hand, leg and arm. He doesn’t want to bang into anyone if its crowded. We’ll try it out and see what happens, I can just as easily bring the food to him.
Ed finally agreed to start taking steroids to reduce the swelling in his brain and that has helped to focus and energize him, he says.
He says the big lesson of his journey was that he is not yet ready to die, and does not believe he is close to dying. He said he imagined the powers that be up in heaven coming to his number and seeing that he wasn’t ready to go. So they decided to leave him alone for now.
I told him it was a vivid story, but i was concerned that he was assuming that he could control death, and that was a major assumption that gave me pause.
We all are entitled to our ideas about death, but I wondered if it could really be that simple, that we just look up and tell the powers that be, as Ed calls them, to take our number off of the chart. Would anybody die if that were so? Ed didn’t answer.
After taking the steroids a few days ago, each day got a little bit better than the previous one. You can follow this journey here. And in Ed and Carol’s own words.
It sounds as if the trip was surprisingly social. Ed is no wallflower normally, but on his trip he sought out the company of strangers and reveled in their conversations.
Ed says he enjoys approaching strangers everywhere he goes now, and telling them about his illness and having wonderful conversations with people about life. He’s going to write about that and paint about it. He met wonderful and loving people everywhere, he said, including other people with cancer.
Coming home, he is surrounded all day by people in his family, by his devoted pack of Australian Shepherds, and by his two cats. One or another of these animals is always by his side or at his feet. One of his Aussies has gotten protective of him and is putting his teeth on visitor’s legs. The dog isn’t breaking skin but is leaving black and blue marks. Something to look forward to.
Ed asked me to pass along a message from him to my readers in my writing, he wants me to write about the need for us to be positive and supportive of people and devote more resources to helping the sick and the poor.
He’d like to see a massively funded national campaign to cure cancer. It should have been done years ago, he said.
I warned him that he was beginning to sound like Hillary Clinton’s health care program, and he laughed – Ed is, like almost all farmers, a life-long Republican. Farmers, I told him, never vote for people who might actually help them. He laughed again.
But helping the poor and the vulnerable, I said, is also a message of Jesus. It’s good for all of us to remember this when we’re not sick, I suggested.
I also said I delivered my own messages on the blog and he was in good shape to deliver his on his own blog, so I’d rather just write about what I see and feel and hear.
He laughed and said this was why he loved me, because I was stubborn and independent. And will tell him what I think. Back atcha, I said. Ed has always been larger than life, and that is true now, even in sickness.
I don’t wish to proselytize on my blog, but his ideas and values and observations are very much worth listening to.
On balance, Ed seems the same to me as when he left on the trip, except for his left side, which is clearly feeling the pressure from the large tumor in the back of his brain. That is a sign of the cancer moving I am told. That is visibly worse than when he left, and at times, he is unable to stand up or walk on his own. His balance is weakening.
He is also, as is to be expected, more emotional.
Like many victims of chronic illness, especially cancer, Ed is concerned about dignity as well as comfort. He is not in pain, he said, but is concerned about being able to use the bathroom himself and feed and dress himself. We had a good and honest talk about that.
I was interested to hear that he does not feel that he is dying, at least not imminently. He is very much alive, and full of plans for his life.
I urged him once again, as I have before, to get a professional medical evaluation of the farmhouse so the appropriate medical services can help him, whether it’s hospice, or somebody else.
People often have reservations and misunderstandings about hospice, but they are not about death, they are about living in comfort and with choice. Hospice officials always lament the fact that people call them when its too late. (Disclosure: I am a hospice volunteer.)
Ed heard me, but I think he’d rather leave this to his family right now, they all want to help him.
I told him that all of this is up to him and Carol, not me, but that I would continue to be honest about my thoughts and pass them along. A good death, I said, was one we really thought about.
How this proceeds is his call, I said, no one else’s. I am not there to run his illness, but I will be a friend, which is more to me than just nodding and listening and clicking in sympathy.
Ed would not love me for that.
A number of people on social media are messaging me with possible cures for Ed’s cancer, and while Ed welcomes these messages, I don’t. It’s not my business to tell Ed how to treat his cancer, nor do I trust strangers on the Internet to diagnose people they have never met.
So it was a beautiful visit, joyous and filled with feeling and promise. I am glad to have my best friend back. It feels good and right. I will continue to look for appropriate and bounded ways to help.
Good best friends are hard to come by and it lifted my heart to hear that Ed plans to be around a good long while, so we can be really good male friends and grump and huff at each other, and once in awhile, kiss and hug and cry with each other too.