Day: August 5, 2018

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.

As long as Maria and I have been together, we have driven around the country together while I take pictures and she draws. Sometimes, if she is so moved, she takes pictures of me taking pictures. This used to make me uncomfortable, just as my photographing her made her uncomfortable, but we got used to it.

I can’t begin to count the number of times I asked her to stop the car or turn around and go back, she has never once complained about, she keeps her pads handy in the back of the car, I hope she shares those sketches with the rest of the world one day.

Very of them are of me, but some are.

The line between our art and our work is pretty thin, sometimes invisible.

We lead open lives and share much of them. I am proud to say that finally, I have no secrets. There is nothing bad to say about me that I haven’t said myself and don’t know myself.

Some people are always badgering me to change, and become the person they wish I would be, but I have landed now, and I am comfortable with me. Take it or leave it.

Maria is comfortable with me also, and so here I am, looking at this very lovely photograph of me taking a photograph of a rainbow we spotted hanging over a farm.

Maria was sitting in the car sketching, and then she saw me and took out her Iphone and got this shot. I could tell she was pleased with herself.

I like it, it speaks to me, and is me. This is where our creative lives together fuse. I will want to keep this photo, not only because she took it but because it is really is me. That’s what good artists too, they capture the essence of people.

And I, for one, feel it’s important to let them.

The last thing we expected to get today was a new fish tank. But we have one, and at half price.

I was thinking today that in one sense, every pet fish is a rescue fish, they all live in crowded tanks and need homes. We have two goldfish and six snails, and our 20 gallon tank is doing beautifully.

Today, it was cleaning time,  we emptied out half the tank, replaced it with settled water, put in a few new plants.

At one of  our “office” meetings, Ali had told me there was a member of the soccer team who was dying for his own fish tank, he is a budding science scholar and he would love to have his own tank for study and for his class science project. His teacher is excited about the idea.

Grades are very important to the players on the soccer team, few of their families have the money to send them to college, and they all want to go.

Some of our political leaders like to portray immigrants as thieves and murders, but that is a grotesque lie:  these boys are dying to improve themselves and get the best possible education. They are grateful to be in America; today, they all went to see Mission Impossible, courtesy of the Army Of Good.

This child is an honor student, eager to be a scientist. I had that in the back of my mind, thinking he should get the tank if we ever got a new one, which we were not thinking of doing.

We spent a couple of hours exchanging water, pumping out the waste in the bottom, placing the new plants, taking out the decaying ones,  the goldfish and snails are hardly and unflappable.

Maria loves doing projects like this, and I confess I do also. We’ve been plotting it all week.

We seem to love watching the fist at times, the tank has all natural plants and is soothing and restful to watch.

I got the tank for Maria as a birthday present and it was a good present, she loves the fish, named Frieda and Diego, and the big white snail named Socrates, and I can’t keep track of the names of the five smaller snails, Maria knows them all.

We have talked often about getting a somewhat larger tank, it would be easier and we could perhaps add another fish or snail – we’d like to stay small. But we were not planning anything now or in the near future. We have a new dog coming soon.

The timing of things today altered our plans.

We were barely finished when I got an e-mail from Petco announcing a dramatic “one dollar sale” on fish tanks, one dollar off each gallon all the way down to 50 percent. Half off. That meant a 40 gallon tank would be around $50.

In the late afternoon, we scooted over to the Bennington Petco to talk to Devon, the manager there.

We looked at the 40 gallon tanks, but we thought they were too large for our table, and then Maria spotted a 29 gallon tank for even less money – much lower than the tanks on Amazon or elsewhere.

We decided on the spot to get one. Fate seemed to be intervening.

Frieda and Diego and the snails can have even more room and we can construct a beautiful landscape with the plants we have.

The pump we have now will work in the bigger one and the larger tank fits perfectly on the table, as you can see. I’ll let the water settle for a week or so and we’ll make the transition next weekend.

I’m going to meet with the soccer team player, a refugee from Asia, and see what his mother thinks about his getting a tank. I know they are short on funds, so he would need a stipend to pay for food, filters, and some inexpensive equipment like a net, etc. and a new pump and filter.  We have everything else he might need, including an LED light and some gravel.

I want to make sure he is committed to caring for the fish (just like the rescue groups do) and also that he will have enough money to take care of the tank or work to pay for supplies. But I don’t care if he goes to school all day, he can still have the fish.

Ali says he is a hard-working kid who is serious about learning and very responsible. And he has suffered a good bit.

Looks promising.

I would stay in touch and help him if figure things out. Much of my childhood was taken up breeding and caring for tropical fish – I had a half-dozen large tanks in my room at one point when I was 10 or 11.  I abandoned fish when my heating thermostat short circuiting and blew up all of my tanks. My dog Sam rushed upstairs and licked most of my carefully bred fish up off the floor and ate them.

I didn’t have another fish until Maria’s birthday last year.

It’s curious, but it is very nice to have them again, it brings me back to a difficult time but in a good way. I still like having a fish tank, and I remember almost everything I learned.

So we got the 29 gallon tank, it is just the right size for the table, set up the new LED lamp, hosed it down and filled it up. It fits.

Tonight, we dragged the garden house into the house to fill up the new tank, the water was colder than the air so the sides frosted a bit, it looks quite beautiful. I’ll test the water in a few days, mineral content and PH.

I like the symmetry here, we get a bigger  tank for little money, a worthy refugee child gets a tank for little or no money, and some needy goldfish get a future scientist to take good care of them.

I won’t need outside funds for these, the cost will be low, and this one is on me. It feels personal.

I also get to make some good use of my childhood time with fish. I am surprised that I have forgotten nothing. I’ll love teaching this wonderful child how to do it if he will let me.

Life is mysterious and wonderful sometimes. All the time.

The soul of an old barn is a mystical universe, it has its own story, sense of time, history, climate and eco-system.

The author Carolyn Jourdan (Heart In The Right Place)  wrote that an old barn is a “shadowy world of swirling dust illuminated in tiger stripes by light shining through the cracks between the boards.”

There, you can find dust, old bales of hey, leather, tack, chain, rope and boards, baling twine hanging from rusty nails, hammers, tools, rakes, pocket knives, layers of mold and detritus and life lost in the layers of history.

Maria and I and our friend Susan went to Vermont this morning to have our favorite Sunday brunch at Chauncey’s in Arlington. On the way back, I stopped to photograph one of my favorite old barns.

One of these days, it will have collapsed or been taken down, old barns are disappearing every day across rural America, they cannot really be replaced. Everything does change. I savor my time with them.

In 1960, according to the U.S. Humane Society, there were about 12 million owned dogs in the United States. Today there are more than 70 million owned dogs, as many or more cats.

My mother fed our dogs  table scraps and never heard of store-bought dog food, pets rarely saw a vet.  Our dogs slept in the basement.

Today, Americans spend more than $50 billion on care for their pets. Animal health care has run out of control cost wise, just as human health care has. In 208, it is estimated that Americans will spent more than $72 billion on their pets.

Dogs have moved from the periphery of our lives to the center, from sleeping in the garage to sleeping in bed, from dying quick and natural deaths to having their lives prolonged at all costs by any means – just like people. Their main work now is providing emotional support to needy humans.

In that time, we have also seen the rise of one of the most compelling and intense social movements in American history, the animal rescue movement. This is a movement that has saved, re-homed and helped heal countless millions of dogs. It has also in places become strident, out of touch, exclusive and increasingly resented.

For a movement that depends so heavily on public support and good will, this is deeply troubling.

In the animal world, as in the political world, we seem to be losing the ability to talk to each other, and use our own common sense and judgement about each other. We resort to paranoid, legalistic and bureaucratic procedures to try to judge people and gauge their humanity.

Do any of us really think this works? Just look at the news. It is a cruel society that assumes everyone we deal with are liars or worse.

I have rescued more than 100 animals in my time on the farm, including sheep, donkeys, chickens, dogs and barn cats. But I have not done enough on my blog and in my writing to help this movement save the lives of dogs and find good homes for them.

I am controversial on my feelings about this issue, but not in the way many people think.

I believe there is a dog in America for anyone willing to love them and care for them, whether, they are old or not, have a fence or not, have kids at home or not, or go to work, as almost all able-bodied Americans do.

I believe the process by which the rescue culture has come to define eligible adopters has become irrational, cruel and self-defeating, to the detriment of dogs and people.

I completely understand the reasons for caution and vigilance when it comes to finding new  homes for dogs – many people are not honest or careful in their choice of dogs –  but I am weary of hearing every day from good people with big hearts who are rejected and frustrated and hurt by the arbitrary, unthinking and often completely unjustified terms and restrictions place on dog adoption.

Ethel, who is 68, tried a dozen times to adopt an older dog who can’t or won’t run or walk for great distances, just as she can’t. Because she had severe arthritis, she was rejected again and again.

I am in the process of adopting a Boston Terrier name Bud who really needs a good home, and I have found a rescue group – Friends Of Homeless Animals/RI – that seems to love animals and people, and wants to find good homes for their dogs as much as they want to stop people from getting them. It is a tricky balance, but FOHA/RI could be, in my mind a role model for animal rescue.

They focus on dogs with heartworm and other diseases, but they are available to talk to people and make informed judgements about them. I jumped through a bunch of hoops, which I was happy to do, but I got the feeling they were on my side as well as Bud’s and wanted the two of us to come together.

When someone adopts a dog, we can never know for sure that they are wonderful, honest and loving people. There are no guarantees, rescue workers are not detectives or social workers or psychologists. Circumstances change, people change, people sometimes lie.

But the answer is not to shut out the elderly, the working, the poor, and the young from adoption, not while millions of dogs are looking for a home. Animal abuse is a horrible thing, but so is human abuse.

Sometimes we just have to take risks for the many dogs in urgent need of homes. For me, the first question any rescue person asks a prospective adopter is: “how can we make this happen?”

If it doesn’t work, it doesn’t work, but it seems harsh to me to presume that people seeking dogs are all liars and abusers because some of them are.

The animal rights movement made a profound mistake in using animals to assault and harass people who live and work with them, and to drive animals away from people.

This spectacular misstep will  forever limit a movement that could really have helped animals and the people who care for them. As it is, the movement is despised by millions of pet and animal lovers..

I will not ever assume that every person without a big fence and a job is an animal abuser, unworthy of adopting a sick dog recovering from heartworm or brutality or starvation, or an old and orphaned dog that just needs a place to live.

Or that anyone who works is unfit.

I have spent a lot of time working in the past year or two to help vulnerable people – refugees, the elderly. It’s time I also worked to help the most vulnerable animals. Bud has heartworm and was abandoned and cruelly mistreated. I am eager to give him the home he deserves.

In searching for a dog to replace our dog Gus, who died earlier this year from the dread disease megaesophagus, I realized just how difficult it is for many dog lovers to adopt a dog now.

Apart from the cost, which now ranges from $400 to $600 in many cases, I saw that I could not adopt a dog unless I had a tall and expensive fence, unless I worked at home, unless I  had no young or small children, unless I listed and explained every dog I ever had that died, unless I provide veterinary and personal references.

I am not suggesting all of these conditions are unnecessary, just that the 12 million dogs languishing in shelters or foster care deserve better than this. So do the people who are eager to love a dog, and are stung by being rejected by animal rescue groups.

I personally know too many wonderful people who have been rejected and are heartbroken and wounded by the process. They would make wonderful and conscientious dog owners.

The goal should be that anyone who really wants to adopt a dog and can provide references and has no history of cruelty should be able to get one, regardless of their age or employment or yard fencing. A small child is an important consideration in dog adoption, too many are injured by dog bites in the face, but it ought not be an automatic disqualifier.

One rescue group I contacted asked me to sign a waiver agreeing that a representative of the group could enter my home unannounced at any time and for any reason for the life of the dog. I can’t imagine agreeing to let the government do that, why would I let a rescue group? The request is fascistic.

Should people who work really be banned from having  dog?

There is no respectable behaviorist who would seriously argue it is cruel for a dog to be alone at home for the eight to ten hours people are away working. Dogs in the wild sleep for up to 15 hours a day in their dens, it is not even healthy for dogs to be busy and stimulated all day, this idea is a consequence of the over-emotionalizing of animals that has become an epidemic in recent years.

Dogs are not children, and children are not dogs. They should never be seen as the same thing.

The dog world has unthinkingly embraced the idea of the “no-kill” shelter without comprehending there is no crueler fate for a dog than to be confined to a crate for years or a lifetime. This makes us feel good, not them. It is the worst kind of animal abuse.

Dogs are adaptable, they want to be loved and fed and sheltered, there are no fixed time requirements for those things.

Just think of the many Katrina dogs who have been happily re-homed all over the country, I don’t know of a single one who died because their people worked or didn’t have a five-foot high wire mesh fence or a good job.

Most communities in urban and suburban American now require dogs to be walked on leashes, the dogs do fine.

Most dog lovers spent $10,000 a year on health care along for their pets. Do we really want the joy of dog ownership to only go to rich people who don’t need to work and can afford thousands of dollars worth of fencing?

There is not a day when I do not receive messages like this:

“Alison: Thank you, Jon for your comments and thoughts on this. I’m a long time reader first time commenter. I am someone who has been declined from rescue groups repeatedly and for years. I am single, I live alone, I have a full-time job (with flex hours and work from home option 2 days a week), I don’t have a family, I don’t own property (despite landlords approval for a dog), I don’t have a fence, my car isn’t big enough, please forgive me as I live with two cats, as a distance runner I may run too many miles for a dog (I think this was my favorite reason to be declined for a young border collie cross – mind you the advertisement stated they were seeking someone who was “athletic”) and the list goes on – so much so that I have bigger battles to fight and have decided to explore other avenues of dog ownership. Which while it sort of breaks my heart, I believe everything happens for a reason, but I still look and still make futile attempts and one day I’ll find my dog – but a lot of things in the universe have to be in alignment for it to happen. I began to feel like every application was an apology of sorts – sorry I’m a good person, trying to do a good thing but yeah not married, fully employed, no kids, no fenced yard and cats. It’s like a bad online dating profile. And yet my shortcomings for the rescue groups aren’t shortcomings in my eyes at all. Doesn’t matter if I’ve volunteered with rescues and shelters, doesn’t matter past experience or future desire – my most recent conclusion is: in this country it has become easier to obtain a firearm than rescue a dog. Each group could learn something from the other. I’m looking forward to your stewardship in the community! Keep us posted if there is anything we can do along your journey! Keep writing! Thank you!”

This is just wrong.

And from Susan:

“The fenced yard is huge, my mother and I both had to let go of our buddies do to cancer, seizures, lung issues at 12 years and 14. We miss them terribly. We live in a park that does not allow fences, but we also are not allowed to tie a dog out, we have to be with our pet on leash at all times, I would do this anyway because it is to easy for them to disappear or get injured. We absolutely love a rescue but unfortunately are auto excluded due to non fence.
Too many animals out there  have not been treated well, and need people who want to love and care for them, but as society goes only the very wealthy with big yards are able to be considered worthy. I do understand fully rescues want to be positive they are not putting them back into to same or worse situation and I am so thankful they do, but not every person without a fence is horrible, not everyone without a fence is incapable of loving them.”

These messages make me heartsick. Something is wrong with a system that treats people like this. There are so many more dogs needing homes than people asking to adopt them.

So I’m going to be working hard to support a rescue group like FOHA/RI, they seem worthy and empathetic to me, not only on behalf of dogs but people as well. They charge only $200, pay for the dog’s medical care and transportation to the adopter.

They wanted to work with me from the beginning, even as they vetted me thoroughly and appropriately.

The most meaning references in my mind were from my vet and her staff. They know better than anyone how I treat my dogs. They matter the most in my mind. Any other name I provide is almost certain to be a friend.

FOHA takes lots of precautions to see that their dogs go to safe and loving homes. But they also treat people with dignity and compassion. I have great respect for Carol Johnson, who is fostering Bud and provides me with continuous updates about his condition and offers to help me in any way.

And she is tough as nails, she would never let Bud go to a dubious owner.

Carol wanted references, but we also took the measure of one another, and came to trust each other. That was important to me, to her, and to Bud. That is what made it happen.

I look forward to bringing the work of this group to the attention of the Army Of Good, and broadening my “good” campaign to include dogs as well as people. It seems a natural and even overdue fit. Hope you can come along.