Ed Gulley and I met on Sunday night to record part two of our video series discussing his inoperable brain cancer and how he and his family are dealing with it. Ed has a great sense of humor, and I work hard to lighten our talks about, but today’s conversation was difficult and very real.
It is just what it is, and it might be painful for some of you to see and hear.
Ed wants to share what he is learning and feeling in the hope it may help others “in a similar situation,” as he puts it.
Ed describes the inexorable march of his cancer, taking a little bit of him away every day, undermining his confidence in his ability to control his body. It never stops, he says, he knows he cannot stop it. For the first time, he talked openly about his death.
He says the cancer is relentless, he must be conscious of it every minute. A powerful, active, engaged dairy farmer and artist, he is, for the first time in his life, confined to a relative small space, going to the bathroom – a dignity issue for him – requires planning and careful thought. “I’m not used to doing nothing,” he said, “it is hard.” He is also aware of the toll this illness is taking and will take on his family. That is a sobering thing.
Ed and I love one another and we talk easily. When I am with him, I put on my reporter’s hat and ask questions. He likes being asked specific questions, he says it helps him focus.
When I am home, it is hard. I keep thinking about what Ed is going through, this most active and engaged human. Sometimes empathy is not a gift.
This is also a very worthwhile thing for me to do, Ed has asked me to share his messages with the wider world, and you can also follow them on the Bejosh Farm Journal. We are planning part 3 tomorrow.
Ed seemed especially somber this afternoon, he is facing a new reality, and he is not one to experience such a thing quietly or without thought. His eyes are wide open. His body is failing in in small but growing ways. Ed has enormous self-awareness. He has a lot to say, and a lot to share, and I am grateful to be able to help him do it.
He is loving sketching and drawing, it has become an important outlet for him. Ed and Carol Gulley love receiving messages, even if they can’t answer or acknowledge all of them. If you wish, you can e-mail Ed or Carol. Their e-mail is [email protected].