Day: January 10, 2018

When you live with dogs, you make a deal, conscious or not. You will know loss, emotion, and grief. Dogs are different from people, they get sick often and never live as long as we would like. That is the deal. I am always puzzled by people who say they will never get another dog because they loved the last one so much.

Perhaps because I fell into a loveless life, love to me is something to cherished and grateful for, not something to never risk again. I always want another dog precisely because I loved the previous one so much.

I should say here that we are not anywhere near losing Gus, nor do I expect him to be gone from here. We are not at that stage in his illness nor do I expect it. We are stage one of a  dread disease, and I am learning more about it every day and we are trying many things to see what works.

Because megaesophagus is such a dread and difficult-to-create disease, i  have been thinking about how far we will go with Gus and trying to learn how much suffering he might incur as we stumble along. It is pretty clear to me that modern veterinary medicine has little to offer dogs like Gus, they can’t cure megaesophagus and have no cures.

Many people used custom made devices like Bailey Chairs or raised wooden bowls-on-benches to keep ME dogs alive for many years. We are all of us different, and I have developed a strong ethos about living with dogs that has or will someday come into play when it comes to Gus and his disease.

Gus is my first small dog, and he has squired his way into our hearts and lives. He fits in perfectly here, even the obsessive Fate loves chasing him around all day and  playing tug-of-war with his toys.

In the dog world, as in the political world, there is little tolerance for people who are different.  If you are different, if you sometimes think for yourself,  you are an enemy to be feared and  trusted. I try very hard to preserve my sense of my self as an individual, and I often find that a lonely place to be.

So I will have to weight and ponder my own ethics about dogs, illness, life spans and identity.

I work things out in my head by writing about them, and that is what I am doing here: working things out in my head and sharing them. That is what I do.

I don’t imagine having to reach any major conclusions about Gus for a long time, if ever. We are just in the beginning stages of this, and unless his own life is failing or in danger, we have lots of time, perhaps a natural life time for him.

But as I have written, it is good to think about these things before I am confronted with them, not after, when it is often too late to think rationally. Maria and I talk about these values and options a lot an we are of the same mind, although we often have different ways of approaching things.

First off, I have strong ethical concerns about spending many thousands of dollars on medical care for a chronically ill dog. I think it is wrong for me to do that in a world where so many children and people have nothing and are in such great need.

There are 67 million people living in overcrowded and filthy and dangerous refugee camps in our world, just to name one thing, and I balk at spending the $5,000 or $10,000 it would well take to examine and experiment and explore Gus’s illness for years. I know what medicine an X-rays and custom built chairs and special dog food and recipes and MRI’s and other new diagnostic tools cost. They cost a lot.

Several people have alarmed me by offering to launch gofundme sites to raise money for Gus’s care. I don’t want that and would never accept help for that.

These well-meaning people miss the point. It isn’t that I don’t have the money or can’t come up with it, it is that I think it would be wrong for me to take money for that or  spend it that way. Gus is our responsibility and we can afford to take care of him. We are not seeking help and don’t need it.

I don’t know exactly what the financial boundary is for treating an illness like megaesophagus but I do know what people spend on their dogs when it comes to specialized medical care for them. Ten thousand dollars is at the low end of the scale.

Secondly I have always believed that dogs that cannot live the natural life of a dog – at any age – are not dogs I would wish to enable. I don’t judge other people or tell them what to do, but I do feel strongly that the life of a dog ought not to be artificially preserved to support the emotional lives and needs of humans.

I’ve interviewed nearly 200 vets over the course of my book writing about dogs, and every single one of them has told me that the worst thing they see in their practices are suffering dogs whose lives are prolonged well beyond their natural time because people just cannot bear to let them go.

I would consider it selfish to do that to Gus or any dog I love.

I have been monitoring the lives of ME dogs who spent many hours sitting upright in chairs or sitting up in the laps of people so they can live extra years. If people wish to do that, that is their business, I have nothing to say to them other than good luck. I am not sure that is a life I could feel good about pushing Gus into. He is an energetic free spirit, full of life and play, and a dog who can’t process food well is a dog whose life is shaped in great measure by his need for humans to care for him a substantial part of the time.

I believe dogs support us and our lives, and I wish to be free to do my work, write my books and blogs, take my photos, share life with Maria and perhaps it is ruthless, but there are only so many hours in a day I can or wish to spend supporting a suffering dog with a chronic illness. I am not one of those people who would turn my life over to the process, it would be a lie to say otherwise. And I love my dogs a lot.

A life with dogs for me is also a life in balance, we serve and love each other, but we each are entitled to search for our own destiny.

I’ve talked to enough ME dog owners by now to know that this disease changes the life of the dog and the people or family who own and love the dog.

Maria and I are working hard to come to terms with this new reality, and this struggle has just begun for us. We are not the least bit inclined to quit. i do want to have my head clear for this long up-and-down process so when and if the hard days come, I will be prepared and have a sense of what to do. I don’t wish to make any decisions in a cloud of fear or guilt or confusion. I am clear in my own had about boundaries and limits – emotionally, spiritually and financially.

So very soon or way down the road,  I may well have to test my beliefs and see just how deep and strong they are. Megaesophagus is a tough disease, the real deal, there are no magic pills or miracle surgeries. It has left many dogs and humans in tatters. Many others live in peace with it. I will know soon enough which one we are here at the farm.

I am glad these decisions are far off, at least for now, although I know that is not in my hands.

Gus is a dog who is very much alive, despite his struggles with ME, he is enjoying life and full of spirit and affection. It is not time to make long and deep decisions about him, he brings us great joy and we have much to learn and other things to try.

Anyone who shares the story of their sick dogs online in America knows what they are in for.

In this case, I did ask for it, and I accept it. Standing my ground is very good for me, it is affirming and healing and promotes strength and resolution.

The furies of the animal world, the legions of second guessers, the hordes of amateur vets and diagnosticians, the people who love animals but seem to hate people, and the angry ideologues and animal thought police are always out in force and on the prowl. They do not care for people who make their own decisions.

But they will not frighten me or shut me up or keep me from sharing this journey. As many of you know, I will make the best decisions I can for Gus, working every step of the way with Maria – we are equal voices in this – and our vet, who we trust.

And with the other vets and researchers I have and will consult with.

I already know more about megaesophagus than many vets and most people, I will learn what else it is that I need to know and so will Maria.

Down the road – hopefully far down the road – I will come face to face with my own values, ethics and instincts. Megaesophagus is somewhat merciless, there are good endings and bad endings, but not always happy endings.

I intend to be prepared.

I  used to call Lenore “The Love Dog,” and she earned the title But I think Red may be surpassing even her. Ruth, a new resident at the Mansion, is wild about Red, when she sees him she drops to the floor and gives him the biggest bear hug, which he seems to love.

I am always a little surprised at how much Red means to so many people at the Mansion, and of course I should be. He represents the love and life they left behind, he is a living thing they can touch and feel and hug.

He loves unconditionally but always appropriately. He will ever jump or start or jump on anyone. He senses need and  attention and responds to it.

My therapy dog training with Red is the best dog training I have ever done and the most effective. Sheepherding training is complex, and often beyond me, but therapy dog training is somehow right in my wheelhouse.

Red is a magical dog, he connects with people in a particular way.

And I am grateful. Red has done so much for the Mansion and its residents, he reaps smiles and hugs and excitement wherever he goes. Slowly, the Mansion is filling up with life. The residents, enthusiastic and loving management and staff. two parakeets, a rescued cat, a Geranium garden and a therapy dog.

When Dr. Karen Thompson gave me Red, she said she hoped he might become a therapy dog, and I was determined to honor her wish. It was a great instinct on her part.

I’m going to ask Morgan Jones, the Mansion Director,  if she will let me bring in a fish tank, I think the residents would love keeping an eye on some fish, naming them and caring for them. The goal is to ease loneliness and boredom and helplessness. I can help with the first two, the third is beyond me.

I think Morgan will go for it. She is wild about animals.

I don’t know if there are any regulations against fish, but we’ll see. Maybe some goldfish and some guppies, and a couple of neon tetras.

 

Ok, here’s a quick lesson in how to look like an idiot while trying to communicate long-distance with your 14 month old granddaughter who (not surprisingly) loves dogs. It’s simple, just pretend to be a puppy using the new Iphone X dog emoji. It’s the next best thing to being there.

I’ve got to use the tools at hand. And I’ve looked foolish many times before. Come and see me talking to Robin using a dog emjoi. Strange times.

As I slowly get to know the RISSE soccer team players – they are not all that easy to get to know – I am patient and slow-moving. It is not really for me to get close to them, it is for me to support them in any way I can. I am getting to know them, and they are beginning to talk to me.

You can’t badger kids into opening up, it has to happen naturally or not at all. I am not their mother or father, I am not Ali. But I do want to help if I can.

Their lives are not simple. They miss their home countries, there are language and cultural and financial and political obstacles for them. Most of their families are split, their fathers are often not living with them, or couldn’t make the journey with them to America.  They have very little money to spend on things like soccer uniforms or movie tickets or winter clothes.

Right now, America no longer sees itself as a welcoming nation for refugees, and the children who go to school with them have picked up on that change. These kids are insulted all the time.

They suffer from isolation, from poverty (many wore flip-flops with socks for the upstate New York winter) and increasingly,  cruelty and bigotry from their American peers and classmates. Last year,

the RISSE office was burned to the ground by arsonists. They are routinely taunted and ridiculed by other boys their age. They do not have the money to wear the latest clothes or walk in the hottest sneakers or buy the newest e-gadgets.

They cling to one another in a fiercely protective community, they watch out for one another in a way no one else can watch out for them, except for Ali, who watches over all of them, a fiercely protective Mother Hen all his own. When they hike, they sing “we stand together or die together,” and they believe that is true.

Ali tells them all the time that what they are seeing is not the true America, but a temporary one, the real America will reappear. They adore him.

I’ve talked with Ali about talking with them about the challenges in their lives, seeing what can be done to support them, giving them a chance to vent with someone outside of their circle. He thinks it is a wonderful idea.

They are all coming to Pompanuck Farm next week (not this weekend, as originally planned), and i seem to be in charge of the retreat.

It will probably be cold, there will be sledding and snowball battles and hikes in the cold woods (Maria and Fate’s job) and Ali and I will be doing much of the cooking. This week, I’ve been searching online for a book to get all of them, something we can read together and talk about.

I think I found the right one this morning,

The book is called “Outcasts United,” it was published in 2009 by a New York Times reporter named Warren St. John and it is about a the Fugees, a team of soccer-playing addicts from a dozen war-and disaster ravaged countries who found themselves living in the small town of Clarkson, Georgia.

The original article in the Times had a huge impact, it brought a lot of money and equipment, plus a book contract for St. John and a movie deal that financed a team bus and a new school, the Fugees Academy.  There are a lot of Americans, I always tell the kids, who were once refugees themselves and very much want to welcome them and help them. The Army Of Good is showing them this is true. Their new soccer shirts bear the name “Bedlam Farm Warriors,” their way of saying thanks.

The book captures the emotional damage of the horrors of the refugee experience and the challenge of assimilating into a community that is alien in almost every way. It also portrays the struggle of Luma Mufleh. A refugee herself, when she decided to stay in America after graduating from Smith College, her father cut her off completely. She moved to Atlanta and started shopping in Clarkson. One day she saw a group of refugee boys playing soccer in a parking lot. She watched them for a while, and found her calling.

She realized that soccer was the answer to the boys isolation from the new world around them and their desire to connect with their new home. Goal and grit, energy an effort, are the same words in Albanian and Swahili. And English.

Luma became a coach and surrogate parent, and she and her soccer kids transformed their lives and the community they were in.

Reading this book, I could hardly think of anything but Ali, and the almost identical role he plays in the lives of these sometimes disconnected young boys, cut off from their own world, and struggling to live in an alien and sometimes hostile place.

This morning, i ordered 16 copies of this book for the 14 members of the RISSE soccer team, and for Ali and me. We will give them to the kids to read and we’ll all sit down and talk about the book when we get together at Pompanuck.

They are not, of course, the same as the Fugee Boys, every experience is different. But the plot is pretty similar, and I believe it will benefit them to see that they are not alone, and to also see how dedication and grit goes a long way in their new home.

The book is uplifting, it is about a group of soccer-loving misfits from all over the world and how they made it.

The perfect book to read together at our retreat in the midst of a cold winter.

I wrote earlier today about Gus’s rough morning, and what I took to be a cruel message from a woman in Texas suggesting I was putting my own ego above Gus’s recovery, and the message hurt me and made me angry. The new ways we communicate with one another promote discord and misunderstanding, and I have learned that if I try and make a human connection,  communication and understanding becomes possible.

It is so easy to send one another messages without thinking, we communicate easily, but often at the price of empathy and sympathy. Look at the hideous world of tweets.

In our world, where people are rapidly disconnecting from one another, it is easy to lose sight of the person at the other end of the message, to forget that we are all human we all feel many of the same things. I have faith in the people on the other side of the message, and I work to find them.

Sometimes, I do. I did today.

I was shocked and hurt by a message suggesting I was indifferent to Gus and his awful illness.

I wrote back to this woman explaining that her comment was hateful and hurtful, that Maria and I loved Gus as much or more as she did, and that I believed the love of animals should never be used as a screen to hurt or hate people.

We are feeling quite vulnerable with Gus these days, it is not clear that we can save him or help him, we both sat crying this morning as we tried to comfort him after a hard morning. It was a bad time to get a message suggesting we were killing him because we wouldn’t buy a Bailey Chair.

She responded angrily, and said she was just arguing for animals, that she was a good person, and that I just wasn’t willing to listen to her, she had saved a lot of ME dogs.

I wrote back urging her to not be a hypocrite, to bear false witness against herself, to be cruel rather than empathetic. Hateful messages are never about love, not of animals, not of people. Our messages softened with one another, she said she wasn’t trying to be cruel.

I told her Gus’s treatment would be determined by our vet and medical specialists in ME, and not by her telling us what to do.

We went back and forth for awhile, but there were germs and shreds of connection. She had lost two dogs to ME and also had been diagnosed with autism and Asberger’s. I sensed she had a big heart, she just didn’t really know how to communicate, and the loss of her two dogs filled her with a sense of urgency about saving others. Like so many people on social media, she didn’t see me as a person with feelings, but as another clueless man too arrogant to listen.

It was interesting, because we didn’t quit on one another. I respected her willingness to talk to me.

This was important to me, I sensed the person behind the message, a sensitive young woman, she had lost trust and faith in veterinarians and perhaps in other people along her way.

This morning, we broke through. I told her my wish for her was to learn to express her love of animals in positive ways, not by inadvertently harming vulnerable people. This afternoon, a breakthrough, a message that said “I am sorry if the way I expressed my real fear of a less than great outcome came across that way. My Asbergers makes things like that more difficult. Please accept my sincere apology and I do hope for the best for the little guy and for you.”

I got it, she was traumatized by the loss of two dogs to ME an she feared the same outcome I feared. She just didn’t realize we were the same, not enemies or aliens.

The true soul of a good person had emerged, not because she was agreeing with me or apologizing to me, but because we found the human, the person behind the message,  in each other, and when all was said and done, we  were very much the same, not all that different.

We didn’t give up on humanity, we sought it out.

I have been diagnosed at having what is called benign autism, and I am often more direct and insistent with people than I realize. I sometimes hurt people without having a clue.

Her message was sincere, and of course I accepted her apology, and explained that our kind of communications make it easy to misunderstand and harm one another. It happens to me every day, and I’m sure I’ve done it many times myself.

I told her I would welcome any help she could offer, and I felt we had made a connection, and I hoped she would stay in touch with me. And I hope she does. This is a big deal, I think, in our world where we increasingly learn to hide behind digital messages to learn to hate and harm one another. Face to face, I know I would like this woman, and having broken through the digital screen, we already do.

I learn much from these encounters, they help me learn and grow and change. Oddly enough, I think I’ve made a new friend, the payoff for not giving up on people.

We are all human beings, we all know fear and anger and hurt. We can break through this screens and walls if we treat one another with dignity and respect. That’s my faith, and I’m sticking with it.