Day: January 22, 2018

The photographer Walter De Mulder defined photography this way: “always seeing something, never seeing nothing.” Since I began taking photographs around the time i met Maria – i know the two things are connected – I have been privileged to see the world anew, to discover the color and light and emotion of the world in a completely new and different way.

For a man entering his sixth decade, that was nothing short of a miracle, and remains a miracle today.  My eyes had a great rebirth.

Several months ago, I noticed that when I read the pages of a book, the tops of the letters were cut off and blurring, this shocked me, as reading and writing, like photography, is akin to breathing for me.

My sight is precious to me, as it is to everyone else. I went to the doctors and they found a retinal disorder,  a burst blood vessel. This is sometimes related to diabetes, sometimes to other things. I never had to think about seeing.

This incident caused a large swelling in the eye. Unchecked, this could lead to blindness, and until a few years ago, invariably did.

The first round of treatment was a special eye drop, and the swelling has been reduced and is away from the retina, and my vision is  excellent and has returned to normal. I see all the letters quite clearly. But the swelling remains and is threatening the retina, and will almost certainly return.

So Monday, after Maria and I get back from Salem, Mass.  to celebrate her birthday,  I go to an eye hospital for tests to see what kind of treatment or surgery is appropriate for me, and perhaps undergo surgery on the spot.

They are focusing on laser treatments, which often work in these cases.

My doctors seem optimistic about laser treatment removing the swelling completely. That would be great. There are other options, including regular injections into the eye. Like so many things – open heart surgery, for instance – they sound more disturbing than they are, and are done so frequently as to almost be mundane.

For me, this is not a drama or a tragedy, and I am not terrified of treatment. Open heart surgery brought me perspective, so has working with so many people with no access to  health insurance or modern medicine at all. I feel both confident and fortunate. This is life, and I accept that life comes with struggles and change.

I don’t feel the need for prayers – I don’t think this rises to that level – many people have it so much worse than I do. Maria will go with me to make sure I  do what I’m told and to be by my side.

Not too long ago, the doctor told me, there was no preventing blindness from this disease. I have nothing to squawk about.

Now there are miracle procedures and medications that routinely save the eye and the sight. I feel quite fortunate to be on the right end of this treatment.  I would miss many things about losing all or part my sight, of course, but I most often think of not being able to take pictures or read books in a conventional way.

My art lenses are hard enough to focus without retinal troubles.

So in the interest of being open, I just wanted to share the news. I’ll write about it again when it’s over, and thanks in advance for your good wishes.

Most of us don’t think about seeing that much, there isn’t much reason to. We do it automatically and instinctively.

Photography has truly taught me to see, not to look. My pictures are not what the camera sees, they are what I see. My life is so much richer for them, and they were the means by which Maria and I, both voiceless and stunned with fear and confusion, learned to talk to and love one another.

The philosopher Frederick Nietzche wrote about seeing in the “Twilight Of The Idols.” To learn to see, to accustom the eye to calmness, to patience, and to allow things to come up to it; to defer judgment,” he wrote, “and to acquire the habit of approaching and grasping an individual case from all sides.”

This, he said,  is the first preparatory schooling of intellectuality.” One must acquire a command of the instincts that obstruct and isolate. Seeing allows the world to come up to us.

More later.

 

Gus and his megaesophagus have settled into a routine of sorts, a kind of rhythm we are still working to get used to. Almost all of the cliches about megaesophagus have turned out to be mostly true. There are good days and bad days, no one can really say why one day is better than the next.

One day, he starts spitting up or vomiting his food, the next two days might go without incident. I took him to the Pompanuck refugee retreat knowing full well it might not be good for him, but he loves to be around kids and I don’t want him to live the life of a recluse dog.

Already, I am living the kind of life with him that I don’t really believe in. Our vet prescribes pill and holistic medicines, we feet him four times a day, then hold him upright for 15 to 20 minutes, he spits up regularly, and we clean it up regularly. One pill is three times a day, one herb table is one/half a pill once a day, anti-acid pill in a syringe 30 minutes before every meal.

Food is gastroenteric, high-calorie recovery supplement, mixed with pumpkin for fiber, sprinkled with a few drops of olive oil for lubricant. Nice, mushy stuff fed to Gus while he is on his hind legs, we hope it slides right down.

I did not imagine we would get so comfortable with vomit, or become so adept at the 30 second clean up (it was a minute two weeks ago.)

He has special foods laced with high-calorie supplements braced by different pills. I think if I’d gotten one of those Bailey Chairs it would have pushed me over the edge, and I a close to the edge.

At Pompanuck, Gus trawled under the dining room table scarfing up crumbs and leavings – I imagine one or two of the refugee kids slipped him some food. He started regurgitating the food almost instantly, but he had a blast there, and ran around like the demon he can be. The kids love him.

Today, a good day until just before noon, he spit up once, then a second, much more expansive time. We should put him in the crate more when that happens, but we are reluctant to do that. The vet has added some herbs to his diet, the kitchen counter looks like a nutrition research facility – cans, pill bottles.

Away from his illness, Gus is his old self. Affectionate, energetic, curious, playful. He spends most of the night in bed, curled up against me or Maria. So far, no spit-ups in bed, it is mostly a morning and mid-day thing. He and I wrestle several times a day, and once in awhile, I might take a nap, and he will, at some point, hop up onto my chest and shower me with kisses.

Disconcerting but neat. Like his mother, he is a very loving creature.

Gus fits quite well into our lives. He is happy playing with Fate, hanging our in Maria’s studio, sleeping in my study while I work.

Tomorrow, a soft muzzle will be arriving and we will see if he can get easy with it and join us for walks outside and treks to the pasture.

I have been busy and haven’t had time to do much research on the disease, I have this growing feeling that I know all I need or want to know,  this is where we will be, this is what life with Gus will be like, up and down, good and bad, sad and fun.

Some days you forget about it, some days you are reminded very powerfully of the disease.

We have adjusted our routines and schedules to care for Gus as best we can, and our work and time together and outside travels have not really been affected.

If it stays here, where it is now, we can live with it. If it changes, we’ll have to figure it out. We look at Gus all of the time, and say to one another, it would be very difficult to imagine life without him, or Red, or Fate. Sometimes you just have to pay a price for the things you want and love.

And do it with grace, and without lament, self-pity or complaint. Life happens to everyone.

How big a price we can pay – the medical costs are rising and are weekly –  is an individual decision, no one else can tell me or Maria how to make it. For now, we’re good and I think he is too. He keeping his weight, eliminating his food in a healthy way, full of fun and himself. We are handling it.

Next week, another visit to the vet, another acupuncture session, but no more pills. We’re doing enough pills. By then, we hope he will be acclimated to his muzzle – we have to persuade him it will be fun – and racing around like a farm dog again.

I’m not sure there is anything more to learn, or anywhere else to go.

We are blessed to have two businesslike animals, Lulu and Red, they are the anchors of our farm.

These two animals are remarkable, each in their own way. They are affectionate, loyal and intelligent. They are businesslike, focused and serious.

Neither one plays, races around in circles, causes any kind of havoc or trouble. In the morning, Red keeps the sheep in their place, Lulu marches quietly to get her hay for the morning. Lulu stands guard over the sheep all night – donkeys are very good guard animals – and red never takes his eyes of the sheep.

Neither animals can be bribed – not for good, not for anything else. They each have their work to do and do it faithfully, without drama or chaos. They make the farm run.

“And what do you benefit if you gain the whole world but lose your soul? Is anything worth more than your soul?” Jesus Christ, Mark 8:34-38.

It’s a curious thing, but sometimes when I look at the news and it seems things in our amazing  country are just getting worse and worse, I am struck by this odd realization that my life is just getting better and better. How can this be?

It is selfish of me to look at it this way, is it narcissistic and self-centered? I am well aware of the suffering and struggle in the world, I see it almost every day. In building my cathedral, I see that when I work with the refugees or the Mansion i feel good about myself, and my life. So, I see, does Maria.

I feel sometimes that many in our country are becoming angrier, more cruel and less forgiving.

As this happens, I find myself becoming less angry, more generous and increasingly empathetic.

It’s almost as if I am living in an inverted universe.

This does not make me a saint or superior in other way, it is the path I set out on as a response to the argument and divisions I see around me. It is my selfish way of staying grounded and hopeful and having a life of meaning.

As always, a Jew turned Quaker, I find myself turning often to the writings of the true Jesus Christ, I don’t worship him as  God, I admire him as the best kind of human, as one of many divine spirits and inspirations. Like the writing of Thomas Merton, his life gives me a framework for mine, even as I see many of the people who call themselves Christians have reinvented him to serve their political needs.

You have heard the law that says, ‘Love your neighbor’ and hate your enemy,” Jesus said in Mathew 5:43-47. “But I say, love your enemies! Pray for those who persecute you! In that way… For he gives his sunlight to both the evil and the good, and he sends rain on the just and the unjust alike. If you love only those who love you, what reward is there for that? Even corrupt tax collectors do that much. If you are kind only to your friends, how are you different from anyone else?”

This is a hard lesson for me in so many ways, I dislike my enemies and often am intolerant of them. I think of the people who message me all of the time saying they love to read my thoughts even though they often disagree with me, and I think if you only consider those who agree with you, what reward is there in that?

If I can only understand my friends and am only good to them, how am I different from anyone else?

My cathedral asks me to be different from other people, to find myself in doing good, and the Army of Good has surrounded me in a cloud of faith and purpose, the refugees and Mansion residents teach me the gift of caring and giving, and so there I am, feeling better as it sometimes seems as though things are only getting worse.

Every good deed I do chips away at my anger and resentment and regret, I grow and change ever day. Many small miracles for me.

In my mind, the world is not coming to an end, the Apocalypse is not here, our way of life is not about to end. I remember that everyone who disagrees with me or dislikes me or rages about me believes in the justice of their own cause. We all think we are the righteous and the good, and who am I to say it isn’t so?

The sun does shine on all of us, the evil and the good, and we are all called to follow our own light and our own truth. Sometimes, when I read the news, as I did this morning, I play a kind of game, an exercise in empathy: what if all of the people who disagree with and who trouble me are right? How can I stand in their own shoes and see the world as they see it? Sometimes I can do it, sometimes I can’t.

It always settles me and keeps me steady to try.

The refugee retreat was a joy, and it was also exhausting and draining, harder than I imagine to pull together and more demanding than I thought. But the feeling of doing good lifts me up above all of that and  refreshes. I am tired in the head and soul.

This morning, life intrudes. Maria broke her glasses, and she is a world champion procrastinator, she always wants to do her art. I’ve finally persuaded her – she hates being told what to do, especially by men –  to go to the optometrist today and get new glasses before our trip to Salem, Mass., this weekend for her birthday.

This will be a good transitional trip for me, making the turn from the intensity of the refugee retreat back into the unpredictable yet reassuring rhythms of life. Back to life.