There is no one really out there who is like Ed, at least no one that I have ever met.
Bejosh Farm is a kind of Disney World of dairy-farming filled with Ed’s creations, animals, paintings, sculptures and rock formations, signs and painted tractor parts. There are wandering goats, sweet and loving and lazy dogs, loving cows, impertinent goats, spiritual crows, dancing Cockatiel’s strutting peacocks and sleep-walking hens.
He and Carol worked hard at farming, but their love for animals and idiosyncratic creativity are in evidence all over the place. At the center of the farm there is a milkhouse and a dairy farm, but the farm is truly much more than that, it is a celebration of farming, nature and life, and is, in fact, a kind of museum.
Ed has a half-dozen barns full of industrial farm parts and pieces.
Ed is a self-described dinosaur, his species was fading from the earth, even before he got brain cancer. His lovingly designed Bejosh Farm is his signature, his letter to the world. it is quite colorful and loud, his legacy.
There is not likely to be another like him.
It is quite a place.
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It is curious how new forms of media, embraced by me, Maria, Carol and Ed, all have informed our friendship and our feelings and writing about Ed’s illness. As Ed becomes weaker and his body begins to betray him, the Bejosh Farm Journal has become Carol’s voice to the world, her daily journal of caregiving, and her deep emotional struggles to come to terms with the looming loss of Ed, who she has always called My Farmer.
Carol didn’t know what a blog was when we met, and her writing and photos have drawn tens of thousands of visitors daily from all over the world. When she needs to say something, she writes it.
The writer in Carol has emerged, and she has made it clear she will continue writing on the blog after Ed is gone. That is good news for me, her writing instructor. Ed was in my class first, but I kicked him out when Carol joined, I didn’t want him to overshadow or distract her.
And the writer in her has blossomed. He said he was an artist anyway, not a writer.
Ed thought it was a great decision. Ed always saw himself clearly, for better or worse.
Carol and Ed are natural bloggers, they are open, opinionated, and lots of life is always happening around them.
The blog is important to Carol now. I was an early and avid supporter of blogs. Carol took to the idea as well as anyone I have known.
Carol uses the blog to talk to her friends, here family, to me, to neighbors. She very much wants to be open and to make it clear that she is not thinking of giving up on Ed, nor is she ready to see him leave.
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At some point in the life of every dying person, there is a moment of reckoning for the sick one and for the family. Do we let go? Or do we fight to stave off death and prolong life? It is perhaps one of life’s most difficult, complex and confusing decisions.
One of the hardest decisions any of us will make in life is to say goodbye forever to the people we love. Nothing in our lives really prepares us for that. That decision involves medications and food and drink.
How long should we keep the people we love alive, and how much treatment and support do we wish them to have if they are suffering?
Nobody has easy answers to those questions.
Carol is making her stand.
She is sitting up all night with Ed, determined to get him to take his medicines and eat.
This is perhaps the only thing I have cautioned her about, this sitting up all night. Nothing will wear her out more quickly, but that is up to her. I know she won’t stop. And I won’t mention it again.
This could end quickly or be a long haul.
“Last night,” she wrote on her blog today,”I sat in the left chair through the night to make sure he was on schedule. He asked me several times if I was going to bed, and I said no, I was standing guard for the medication police. He finally gave up and realized I wasn’t backing down and all went well for the most part.”
Tomorrow, she wrote, she wants to get him up and moving outside if she can, and there is a full schedule of visitors through the day. She is trying to get him to drink, but that was not successful.
Carol welcomes visitors to the farm, especially on weekends, she believes it is good for Ed.
Her writing was buoyant and optimistic this morning, she is choosing to fight for more life.
These are intensely personal and difficult decisions, no one has the right to make them for anyone else.
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People ask me now if I am all right, they express concern and empathy for me, they say these posts about Ed and me are powerful and it must be very difficult for me to watch Ed struggle with his cancer in this way. I am getting a lot of sympathy messages, almost as if I had cancer.
I appreciate the concern, but these worries make me uneasy.
I will be honest and say that it is sometimes sad, but not difficult. I am fine.
When I am helping out at Bejosh Farm, I detach myself from what is happening, something I learned to do as a reporter. I have always been good at detachment, it helped me survive my early years.
I assume the role of the helper.
Ed is not my mother or father, or brother or sister or wife or daughter. He is a very good friend, even my best friend, and that is a very important thing, but I recognize it is a different thing from what Carol or his children feel.
It is a tragedy in many ways, it is not my tragedy.
My time with Ed since his diagnosis has evolved.
At first, we talked together about cancer and death, and did videos with each other, then we said our goodbyes, acknowledged his good and fulfilling life, and shared our love for one another.
Now, it is different, I sit in silence with him so others can rest and do some chores. Nothing more, really.
It is important work, but the easiest and less wrenching work for anyone by far.
The last thing Ed or Carol needs is much drama and emotion from me. I don’t care for drama stealers, I know what is mine, and what is theirs.
They need me to be steady and calm. To listen, not talk. To be a shadow on the wall, or a breeze on a window curtain.
When Ed told me of the diagnosis, it shocked and saddened me, and I struggled for a couple of weeks to sort it out. I really didn’t know what to do.
Now I do know.
I come for two or three hours in the afternoon, and give Carol a breather.
I bring fresh corn and fruit, the vegetable stand is right on the way.
I talk to Ed if he wakes up and wants to talk. I help him if he wants to draw. Mostly, on these visits, Ed doesn’t want to talk to anyone, he wants to draw and sleep. The toll his cancer is taking on his body is more and more apparent every day.
I know he is aware of me. I know he is grateful for silence.
He and I did our talking, we have said a bunch of goodbyes, so time to shift gears again. If I can help, I help, but I sit and stand outside the circle of Carol and her family, this time is for them.
I can only be helpful outside of this circle, I am not needed in it.
I’ve learned a lot about mortality in the past two weeks, as I have learned something about it on every visit to the Mansion or every hospice visit with the dogs. There is so much to learn about, and I want to be open and thoughtful about my own time when it comes.
Ed has shown me a lot about how to do that.
The people who way it is a gift to be present are correct. Sometimes less is more.
So I come and go like a ghost, which is what I try to be when I am there. Most of the time, I just sit and read and talk with Ed in the silence. I just walk in and sit. No long goodbyes, I just walk out the door.
On the weekends, I try to make myself scarce. There are all kinds of visitors on Saturday and Sunday, and Ed is quickly exhausted, and there is not much need or use for me. The best time to help is in the late afternoon on weekdays when it is quiet and everyone is tired.
It feels like sacred time to me, a gift.
Tomorrow, after visiting Ed, Maria and I are going to see a play in Dorset, Vt. We are going to tackle fixing up my study.
I am not going to pieces over Ed’s illness, I am not losing sleep or falling behind in my work, or forgetting my writing, my book, my health, the Mansion residents or the refugees. Maria and I have never been closer or more in sync.
After I leave Ed, I feel exhausted and often need to sit quietly or rest.
If there is churning emotion in me, I save it for my writing, it will show itself there. Writing doesn’t lie. People who read my blog have always known more about what I am feeling than I do.
Sometimes, when we are alone, and the farmhouse is quiet, I see a white light over Ed, and I more and more believe the spirits are coming to help him cross the road. Sometimes I feel it is so close, sometimes not.
I do not have cancer, I am not hurting in anything like the way Ed is. I am quite sincere when I say this is not about me, and it is not, and I am grateful for that. Carol thanked me the other night for helping out, and I said “I’m the lucky one. I get to leave every night.”
My wish for Ed is a peaceful and humane end to his suffering, as soon as he and Carol are ready for it, and that is entirely up to them.
I do not feel I need sympathy or commiseration, this is a very important and good time in life for me, and I will make the most of it, for as long as I possibly can.
My wish is to be helpful, and nothing more.
