Day: January 11, 2018

I have a curious and self-made role at the Mansion, I am not on the staff, and am not entitled to know where people go when they suddenly disappear.

The staff, many of whom are friends and close to me, clam up if I ask where people have gone, and I rarely do. I can buy clothes for people and with them and my dog, but I may not know if they are alive or dead, or ever coming back when they disappear.

And it is not my business.

That is really what they mean when they talk about outliers, my life long position in the world.

Joan is one of my favorite people at the Mansion, she has a sweet soul and the heart of the poet.  I love to photograph her and she loves to be photographed. And she has beautiful stories to tell.

Joan has some memory issues, and conversations with her are different and inventive, a series of shrugs, feelings, smiles and hand waves for emphasis or agree  on things that are never clear.

I cannot bring clothes or books other things to Joan because she packs them all up in suitcases to await transport to her next home. It isn’t that she doesn’t like the Mansion, she is just always on the way to someplace else, even though she never leaves.

Two weeks ago, she left, I knocked on her door with Red, who she loves, and there was no answer. I pushed the door open, as I sometimes do, because people can’t always hear me, and saw right away that Joan was gone. I did not ask where she was, or if she would be back, and no one told me.

At the Mansion, these sudden disappearances are common and fraught. No one talks much about the people who disappear, federal Hippa laws do not encourage community or intimacy, they often turn the elderly into mystic ghosts who lives must remain hidden and unknown.

When people leave, they sometimes go to the hospital, sometimes to nursing homes, sometimes to visit members of their family. Quite often, they don’t return they vanish into the vast netherworld of hospitals, nursing homes, rehab facilities. Many are just never seen or heard from again.

So I wasn’t sure what to expect from Joan.

Yesterday, I was at the Mansion and a staffer who knew Joan and I are pals pulled me aside and whispered “Joan is coming back tonight.” This morning,I  went over to the Mansion first thing with Red and there she was sitting in a hallway chair, looking out the window.

It was a wonderful sight.

I asked Jane how she was, and she said “fine, they didn’t really do anything to me,” and that was about I learned, Joan and I drifted into on of our existential talks, where we both speak  and say nothing recognizable, yet communicate perfectly..

“Oh, well,” she said, so he is a beautiful dog, isn’t he?”

“Yes..”

“It was nothing but raining, really…”

“It was cold..”

“Well yes, and wouldn’t it be?”

“It would…”

“Yes, yes, I wouldn’t want to live there either..I told them that..”

I saw the bandage on her leg.

“Did you hurt your leg, Joan?”

“No, no, she said…I hope it’s time for lunch soon.”

And she added, “thank you.”

It was wonderful seeing Joan back at the Mansion, greeting Red, whose name she has never known (or mine.)

I asked her if there was anything she needed, and she laughed and threw her head back and smiled..

“Need, oh no, nothing..I don’t expect rain.”

I was very glad to see Joan, Red too. You can write to Joan c/o The Mansion, 11 S.Union Avenue, Cambridge, N.Y., 12816. She may not respond, but someone will read your letters to her, and she will listen to them.

It is no pleasure to have a dog who is sick, for sure, but it is, in many ways, always a gift to feel. I think trouble brings out the best in many people – their empathy, their compassion, their common sense of humanity. I am grateful for the things I can feel, I am never really more alive when there is fear and pain.

I loved seeing Maria holding Gus in the waiting room and leaning over to kiss him. There is so much love in my life, I sometimes cannot believe it is real.

At such times, Maria and I grasp our need and love for one another, we are pulled out of our selfish and conflicted selves and dragged into the shoes and hearts and souls of other people. At such times, people remember how much we have in common rather than how much divides us, we affirm our sometimes forgotten humanity.

In truth, I do feel lucky to have people and animals in my life than I can love and laugh with and worry about and, if necessary, mourn. The absence of feeling is a kind of death to me. And I was once kind of dead.

I remember what it is like to live a life without many people (and animals)  to care about and think about.

Gus is an especially appealing character, and his illness affects me differently than other possible losses. I believe that death and suffering are as much a part of life as joy and fulfillment.  I think we are ideas, really, as much as we are material things. The idea of Gus is the intrepid little man living a larger life than we expect from little men.

But being young or small offers no immunity, the fates play their own cards, not ours.

That is the drama of being human, sickness with health, light after dark, warmth after cold,  death after life, one comes with the other, one is often connected to the other.

There is no reason to expect Gus is dying, he is not,  but obviously, the specter of it hovers, i see in the posts and messages, and in my own writing. It isn’t that it is imminent or even likely, but it is possible, and we all fear it. At such times I realize what I love and why.

In my subconscious, I label and categorize deaths differently. I felt relief for my parents when they died, life was hard and painful for them, I had this feeling when they died that they were released from the heavy burdens of life, as I suppose everyone is.

Oscar Wilde famously wrote about this idea of suffering and death: “Death must be so beautiful. To lie in the soft brown earth, with the grasses waving above one’s head, and listen to silence. To have no yesterday, and no to-morrow. To forget time, to forget life, to be at peace.”

Rest in peace, Mom and Dad.

In my hospice work, I learned that can be sad, but not only sad. Death, like life, can be beautiful and affirming. I admit that these things are in my thoughts tonight, and as always, I am grateful for the chance to be alive. Life is precious, and I do not ever take it for granted.

No one knows the author of this poignant exchange: “Life asked death, ‘Why do people love me but hate you?’

Death responded, ‘Because you are a beautiful lie and I am a painful truth.”

Gus is nowhere near death, but the sickness of this loving and happy creature, just at the beginning of life, opens me – and others –  up in a particular way.

Gus has not had all of his life, but his life is his life, just like everyone else’s.

My dogs have often taught me how to feel when I could not feel myself. They often kept my feelings alive when I thought they were dying. I do not mourn my dogs much, I believe they are spirit creatures, they come and they go when they want. The wonder of dogs is that there is always another dog to love.

Gus is different, of course, too young, too full of himself. His purpose has not yet been revealed to me. He is, therefore, not ready to go.

Trouble is liberating to me in a way, it reminds me that I am not in charge of much, I am powerless and helpless when it comes to life and death. We can fuss all we want about pills and treatments and chairs and medicines, but it isn’t me who will decide Gus’s fate or any other human or animal.

Even if we quibble and squawk and hate in the fractured human world, we shall all dance in the general dance together, I am pleased to be reminded that I am not God, and decisions about life and death do not belong to me. I am nothing, another leaf about to swirl and twirl to the ground.

“It is the secret of the world,” wrote  Ralph Waldo Emerson, “that all things subsist and do not die, but retire a little from sight and afterwards return again.”

Gus and I were calming each other at the vet today, and Maria took this photo. He’s a pretty adaptable and agreeable dog, he nearly went to sleep in my arms.

This was an intense and emotional visit to our vet, Dr. Suzanne Fariello. Gus has lost nearly three pounds, a significant loss for a dog that weighted 15 pounds two weeks ago.

This is a serious setback in our efforts to figure out how to treat Gus’s megaesophagus because it suggests his body is not processing nutrition.

If it continues, there is nothing we can do for him, even tube feeding wouldn’t help, and I would not accept that treatment for him.

Dr. Fariello said she was discouraged, but not yet hopeless and neither are we. Still,  we need to reverse it, period malnutrition is one of the fatal symptoms of megeasophagus.  We went straight to plan B, re-arranging his diet and medications.

Gus’s ribs were showing for the first time today, and he looked almost gaunt. My heart sank at this news, it is not good news.

Gus has been eating 1/3 of a can of Purina Pro Plan EN Gastroenteric Veterinary Diet food, we’ve shifted to feeding him four times a day (we have to hold him upright for at least 20 minutes after each meal, and now mixing in Royal Canin’s high-protein, high-calorie recovery diet.

It’s possible the Pro Plan was the cause of the weight loss, even though that is a serious symptom of ME. We’ll know in a couple of days. I’ve already given Gus two of the new feedings (his antacid and anti-nausea medication was also increased.)

I might be imagining things, but I think his belly has filled out a bit already this afternoon. It’s really too soon to know.

Dr. Fariello and I talked frankly about the options before us.

She agreed with me that the specialists don’t really have anything to offer Gus. Although the much-discussed Bailey Chairs are often cited as the best option for treating ME, we have both seen from our separate research that there are about 50 possible treatments for the disease, none of which are believed to be cures.

We see no further reason to consult specialists, we all agreed, they are expensive and their techniques and diagnostic tools are expensive, and they have no magic procedures or pills for ME. We agreed that we don’t need a Bailey Chair right now, and that we are not going to try 50 different remedies or treatments. Our elevated eating benches will arrive shortly.

I will not permit Gus to suffer from malnutrition or a slow starvation and end his days spitting up. Dr. Fariello said she knows how I feel and will respect that, she felt the same way. I will protect you from that, she said, and I wanted to hug her for that. (I did hug her, but it was, she said, quite appropriate.)

Nor am I comfortable with all of us spending our lives and most of our days holding him up or propping him up or making special puree food recipes. We have devoted much of the last two weeks on Gus, and it is not a way we want to live permanently. Maria has lost half of her work week and my own writing schedule has gotten erratic. For me, it’s somewhat  easier I suppose, because writing about Gus is my work. But that doesn’t make it easy.

There are really no end of the things we could try, but we have to have some reason to think they might work. There is no cure of megaesophagus and slow starvation is not acceptable for me, or for Maria, for Gus. We won’t be keeping him alive for us, it has to be for him.

The best one can usually hope for is special diets, elaborate stand-up eating arrangements and some “happy years” of life. The term does not bring me comfort. There is no getting rid of ME.

I told Dr. Fariello that Maria and I were in complete accord about what we think is appropriate for Gus.

We went to see if his weight can go back up and determine if we can limit his food regurgitations.

On that score, this was a good day, there was only one spit-up this morning, and none since, even though he has eaten three meals.

His stool was normal just a few minutes ago, which suggests this new food is being digested. Weight grain is critical, because it will  tell us if nutrition is being absorbed. It’s odd about people who love sick dogs, we become stool scholars.

Maria and I can happily live with an otherwise healthy Gus spitting up his food once in a while, or even once or twice a day. We might get there if we can  get some weight back on him. The last two days have not been sustainable, we would have to give up much of our work to maintain this level of maintenance, vigilance and worry. And there are a lot of animals here, and a farm that needs a lot of attention.

I just picked Gus up and it seems to me already looks better. Is it wishful thinking? Dr.Fariello also did some acupuncture with him, she is not sure if it will help or not, but believes it’s worth a try. He struggled with it, unlike Red.

This is new terrain from me, and I will learn from it. There is nothing solid to cling to, no technological or surgical marvels or magical pills.

I asked Dr. Fariello what it was we were shooting for, what our goals are.

She said she didn’t know, she was quite honest with me. At the moment, we want him to  gain weight and regurgitate less. If we can get there, we can build on it. She is talking to her friends and mentors, some of them specialists, and I am doing my homework online.

This was  a hard and emotional session, it got serious, the stakes seemed high. Maria cried a bit – for her, crying is a way of talking, her emotions are on the surface. I got angry watching Gus squirm and yelp a bit as he got a shot of vitamin B-12 and some acupuncture needles. They he settled down. He is a good, sweet, boy and now is the time to fight for him.

I felt low in the vet’s office, not so much now. He is eating well, keeping his food down, and from his bowel movements, digesting it. If we stay on this track, that will be good news. I feel quite hopeful, and I can’t say it’s based on one solid thing, but there it is.

Maria and I are cautioning each other to be steady. We go up and down, thinking it hopeless, and then when he looks so alert and affectionate and alive, we feel better. That is where we are now. I’d like to stay there for awhile, but we also need to be armored for tomorrow. There is no way to know.

January 11, 2018. I think I’ll do this in journal farm, this blog is a Farm Journal, after all.

Gus woke up feisty and active this morning, he was jumping around like a monkey hopping on and off the sofa top, trying to lure me into some tug of war with his teddy bear.  He did not appear to be an unhealthy dog in any way.

I tried some new things today.I rolled his food into tiny pieces, and waited a few seconds before feeding him anothe piece. I put a few drops of olive oil on them to lubricate them. He was active, alert, playful. Maria and I were both hopeful today, I even did some visualizations with him.

I am glad we are going to see Dr. Fariello this morning, I am concerned about Gus’s weight, his ribs are beginning to show and I am concerned we will find out he is losing weight.

I talked with two ME specialists yesterday and they said feeding him the food as he stood upright and holding up upright for nearly 30 minutes after eat was precisely the right treatment, they both said it was the same idea as a custom-made chair, they said the high benches we ordered would serve the same outcome.

They should be here shortly.

I find with any animal illness I write about,  I am invariably offered great support and also intense criticism from people who believe they have the answers for me, and my animals. Sometimes, it seems that everyone in America believes they have a direct pipeline to God, and everyone else the devil. I love the words “I don’t know,” they keep my feet on the ground.

Someone messaged me this morning asking if I would regret it if I didn’t get a Bailey Chair and Gus died. I am used to questions like that.

I answered as truthfully as I could. The answer was no, there are a dozen or more things people use to treat megaesophagus, not just one and Maria and I (and our vet) and some internists all believe we are doing the best we can for Gus right now. He is eating with his head up, and is upright for long stretches after eating.

Like most of you, we do the best we can for as long as we can, and speaking only for myself, I do not look back on my decisions, I make them in good faith, and if they don’t work, I move forward into life. My life will never again be one of regrets, I’ve done that.

We are not there yet, but sharing this part of the experience is important, because I want to encourage openness and trust, and I am in debt to the hundreds of people offering us and Gus their good wishes.

Social media works both ways, the good and the bad. It’s important not to forget that. It’s also important to stay steady and focused, and above all, to keep perspective. This is about the dog.  I will not permit Gus to suffer in any serious way for any prolonged period that is my faith to him.

Sometimes, I am learning, the esophagus simply will not function, no matter what position the dog is in, both internists told me, and only an X-ray can determine if the condition is getting better or worse. If the dog is losing weight, or suffering from malnutrition, the good options for us narrow. Some people choose to keep the dog going by any means possible for as long as they can. I understand that, but I doubt I would follow that path. It’s not time to make that decision.

The gastroentric food is the best food for him, and a few drops of olive oil were a good thing to try.

One of the doctors suggested crating Gus for an hour or so after meals, she thought his being active could be upsetting to him right after eating.

After we finished breakfast this morning, Maria had to go out and I sat down to write. Gus same in to visit and regurgitated on my knee, and after that was cleaned up, once again on the floor.  He looked both frightened and uncomfortable at that moment, and I’m sure he did not feel well.

I’m crating him until we get to the vet around noon. Usually, he vomits four or five times if there’s a problem. Since I put him in the crate he has been quiet and seems to be settling. This is not about trying one thing, but many things.

If we are lucky, we will find something that works for him. This is all pretty new, and there are no straight or easy lines.

I ought to say this is wearing on us, but it is not unbearable and we are handling it fairly easily. We are relieved the very brutal cold wave is ending, that made things harder. I see that Maria is very worried about Gus, she is an extraordinarily sensitive human being, and I would be shocked if this wasn’t upsetting for her, or for me.

I am neither hopeful nor despairing about Gus, and I’m looking forward to today’s meeting around noon with Dr. Fariello. Fingers crossed, and thanks for coming along. I promised good and bad when I started the blog, this has elements of both.