Day: August 11, 2018

Note: I take responsibility for this essay, it reflects my opinion and no one else’s.

My friend Ed Gulley was told in April that he had an inoperable, terminal brain cancer – ten tumors in his brain alone – and that there was no hope of meaningful treatment or recovery, or surgery and chemotherapy might slow the progress of the cancer.

From the beginning, Ed was clear to everyone who would listen that he did not wish to have his life prolonged, that he wished to die quickly, and before he suffered greatly.

He said repeatedly that he did not wish to live or be seen in a severely impaired or crippled way. He wanted to die at home.

He wanted to leave the world when he was still clear and strong, before his children and grandchildren could see him wither away and lose his mind or was a shadow of himself.

In a way, he got his wish. He will  die at home, thanks to hospice care.

In a way, he did not get his wish. His wish was taken from him by weak politicians and uncaring bureaucrats.

He has lived for weeks past the point in which he wished to live, or that his life had any meaning. He dreaded subjecting his family to prolonged suffering, and that is precisely what has happened. He dreaded suffering for himself.

Not only has he suffered greatly, but his family has suffered as badly or worse.

What a horror for them to watch this charismatic, powerful and active man wither almost to a skeleton, be put in diapers and medicated heavily so that he could sleep and be free of pain. They desperately wanted him to stay, they never wished to see him like this.

I don’t write editorials here, and I don’t tell other people what to do. But I have to write about this.

Even as Ed has lost consciousness and any kind of coherence, people in his family – quite understandably – are still hoping he will drink and eat so that his life might last a little longer. What, I wonder, will juice do for him now? But it is such a natural thing to feel, how awful for them to be in this position.

Ed is very close to the end now, and almost every single member of his family has now expressed the wish that his suffering and degradation will end so he can die peacefully and the way he wished.

It was bad enough to see how Ed has had to suffer needlessly and pointlessly, mostly because our legislators all live in a different time, when people died quickly and in their own homes. And because there is so much money to be made off of the suffering of the terminally ill.

People don’t die quickly or in their own homes any more, they are kept alive for years by medical technology, doctors without empathy, hospitals and nursing homes that worry much more about lawsuits than people.

This is not a system for our time, it is a system for medieval times.

It must change.  For the sake of the living and for the dying. Two states permit what they call “assisted suicide,” it ought to be called the “right to die.”

Our politicians are so busy taking money and covering their hides they have forgotten how to help the vulnerable or do the right thing.

Several weeks ago, Ed clasped my hand and begged me to help him die.

He repeatedly pleaded and begged me to intervene if the people who loved him refused to let  him go, or couldn’t let him go, and is so often the response of loving and caring people.

Now, his family is prepared and even eager – for the sake of ending his suffering – to let him go, and still he must linger, unable to awaken, unable to speak, unable to understand what is happening to him. Groaning and reaching out again for empty space.

It is hard for me to even imagine what that must feel like for  him inside of that whirlwind, or for me to understand why our society is subjecting him and his family to this legally and medically sanctioned torture and cruelty.

For weeks, his devoted wife Carol has been tearing herself to pieces agonizing over the decisions she has to make alone about how long he should live and how hard she ought to work to keep him alive. Today, she prayed for him to die, and hoped he would drink his juice in almost the same breath.

No spouse should have to make those kinds of choices, day after day, night after night, week after week. Seeing her exhaustion and agony is just as hard as watching Ed’s.

I believe Ed has – had – the right to die when it was clear there was no hope for his treatment and when it  became clear he was losing control over his body or mind. In advanced countries, terminally ill people can decide when they want to die. What more sacred right do any of us have than to control our own deaths?

It is not for any politician to tell Ed how and when he must die, or for any doctor to force him to live by 17th century codes and ethics.

If this was hard for me, can any of us imagine what it must have been like and is like for Carol, or for him, or for their children Chad, Jesse, Maggie and Jeremy, and how painful for Ed’s grandchildren to see day after day?

The cancer was bad enough. Ed’s suffering these past months is worse. And unnecessary. And barbaric.

He wanted to die many weeks ago. He begged to die. He had the right to die when he wished under these circumstances. There is no reason for him to hang on and decline day after day, to have to beg friends to help him die, with no legal  or moral way for them to do it.

I do not have the right to kill Ed, but he does have the right to die.

My own father had a different vision of death than Ed. He wished to be kept alive by any means possible for as long as possible, even as he neared 90 and was almost completely incapacitated. That was his wish and his right.

It is not mine, it was not Ed’s. It is not the wish of Ed’s family.

Carol wrote today on her blog that she has had enough. Ed’s family, as supportive as any family I have ever seen, has had enough. And most importantly, they have had enough of his suffering and disintegration.

“Enough,” she wrote, perhaps the most powerful word she has chosen during this ordeal.

I’ve been careful not to write about Ed in an angry voice, nobody needs more angry voices in our culture. But I am angry, I have felt anger rising over the past few days as Ed’s suffering has turned into a nightmare for everyone.

If I can’t honor his wishes, I can at least speak for  him.

Isn’t a life cut short by cancer enough of a trial for a person and his or her family. Must everyone go through a second prolonged Hell?

I am sorry beyond words that I failed in my promise to help him die in the way he wished. I am not God.

I am not a political person or a joiner, but there is a Right To Die movement, and I hope and pray it succeeds. They will surely get a donation from me.

Our world really gives me or Ed or you any way to die in a decent and humane way. Ed had the right to die as he wished, and we as a society have no right to steal that from him.

For hundreds of years, the Quakers have been supporting and working with refugees to America and their children. I became a Quaker when I was fourteen, and have always tried to embrace the values of this gentle and empathic faith. Sometimes I succeed, sometimes i don’t, but it is always the light shining in front of me.

I was very happy today, the refugee soccer team, the Albany Warriors, went to the first of three scheduled meetings at the Powell House, the Youth and Family Retreat and Conference Center operated by the New York Yearly Meeting of the Religious Society of Friends.

I wasn’t there, but Ali said it was wonderful the counselors and youth leaders at the Powell House walked the refugee children – most from Asia today – through games and activities designed to build confidence and safety in young people who have suffered trauma.

The youth center also offers games, a library and some snacks. There is nothing to break or knock over, this facility is built to promote well-being and recovery in young people who have not always had that experience.

There are two more Saturday sessions, they are inexpensive and essential, I believe, for these children. \ Ali agrees, he and I will talk more tomorrow about the program and our plans for the next two sessions. Different members of the team will go to each one.

These visits are inexpensive and valuable. I hope we can send these children there many times int the coming year.

Thanks for your support of this work. If you wish to contribute to the soccer team and the work we are doing with them, you can send a contribution to The Gus Fund, c/o Jon Katz, Post Office Box 205, Cambridge, N.Y., 12816 or via Paypal, [email protected].

The hospice worker was done cleaning and talking to Ed, she was packing up her things.  I was there sitting with Ed so that Carol could go and get her hair cut.

Over the past few weeks, the hospice worker and I had gotten to know each other well, I was often there in the afternoons, and she was easy to talk to.

As a hospice volunteer, we both could talk easily about hospice work and what was happening with Ed, and I was struck by her gentle and loving ways. She really knew what she was doing. She really loved what she was doing.

She seemed to dwell over Ed for a long time when she was done.

Ed was so comfortable around her, there are few people on the earth he would allow to bath him and change his diapers. Everyone in the family loved her as well.

As she was leaving, I said I hoped to see her on Monday, but she said, “I’m not sure I will see you on Monday,” so she wanted to say goodbye then.

I was surprised, and I asked her if she was taking another job or moving away. She paused and looked at me, and said nothing. Then I realized what she was saying.

“Oh,” I said. “I get it.”

She was saying she wasn’t sure she would be needed again by Monday. Hospice people know how to say goodbye.

Ed had slipped into a near coma, his face had become a kind of death mask, almost skeletal, he could no longer speak or respond or swallow pills.

All of his medications had to be administered orally and every two hours. It was hard to see him.

And all of his medications had been increased to make him comfortable and stop his thrashing and ease his pain and help him to sleep. It would not be long now.

I have enjoyed getting to know and talk to Ed’s family, something I rarely had the chance to do before.

I know they were all puzzled by the friendship that had emerged between Maria and me and Ed and Carol, I could see they didn’t quite know what to make of it. I doubt they knew people like us.

When we saw them, they were polite, but seemed uncomfortable, they didn’t know what to say to us, and we didn’t know what to say to them.

Most of their talk was farm talk, the intense and endless gibberish that centers on cows and feed and tractors and misadventures and accidents and  crops and weather and milk prices. I had little to say about those things or contribute.

I have known all of my life that I make most people uncomfortable, and have learned to accept that as my own mark of individuality and identity. It is just the way it is, it is neither good nor bad.

Yesterday Carol came back from the hairdresser to say the appointment had to be canceled due to a family emergency.

I asked her if she wanted to sit at the kitchen and table – she is always the most comfortable there – and talk. If I didn’t ask her, she would just go and stand by Ed’s beside and wait for him to need something.

I have learned that you never know what people are thinking if you don’t ask them. Very few people ever ask me what i am thinking, and I am a reporter at heart, I always want to know what people are thinking.

At the table she opened up and came as close to relaxing as she can come these days.

We started talking about family. She always asks about my granddaughter, is amazed that we don’t lie close to one another.

I asked if she had any siblings, I had not seen a single member of her family come to the farmhouse since Ed was diagnosed with brain cancer.

I wondered at this. If ever a family member might want to show up to offer support, it would be now.

She shocked me by telling me she had a brother and two sisters. I had never seen them or heard about any of them.

She told me one of her sisters had lived with her and Ed for seven years when she went to a local school. I asked her if her sisters and brother knew what was happening, and she said she had e-mailed them right away.

I asked if she wanted them to visit, and she said yes of course, and her sadness seemed to deepen, so I dropped it. She had enough sadness.

Carol has always felt sorry for me and for Maria, because we are not close to our families, and because I only occasionally see Robin, my granddaughter. Carol thinks this is very sad. I always tell her it’s not really sad, Emma and I love one another, we just lead different lives in different places.

I said I was stunned to hear about her absent siblings, I was learning that at the core, she and I were much more alike than it might seem.

Carol is definitely the proverbial onion, layer after layer keeps peeling off and revealing a strong and complex self. Ed was different (yes, I am speaking of him in the past tense now, he is gone in my mind), everything was on the surface, nothing was held back.

There were no layers to peel off, Ed was always Ed.

But Carol is only sometimes Carol.

It was hard for me to fathom, someone as attached to family, to children and grandchildren as much as she is, yet her own family, like mine, seemed utterly disconnected from her.

Carol sees her grandchildren almost every day, and talks about them constantly, she is so proud of them. She suffers from depression, it sometimes makes her quiet and reflective.

Yet there was this other side, never mentioned, even as often as we speak. I could see what a hole this had made in her heart.  I know what a hole that is.

When the hospice nurse came to check on Ed’s medications, Carol’s son Chad came in, Chad has what the farmers call the “milking addiction,” he is addicted to farm life, like Ed. He is always grimy and exhausted, he works almost round the clock.

He and his wife Kate are working hard to keep Bejosh Farm running, that is their calling, like all farming, an obsession. Before Ed’s sickness, I had almost never spoken to him. He is different from Ed, he doesn’t say that much, but he says what he needs to say.

Chad went into see Ed and he asked the hospice nurse if Ed knew he was there.

Of course, she said, Ed knows you are there, he just can’t speak to you.

I am in awe of hospice nurses, but that doesn’t seem to be true to me, not yesterday.

I don’t think Ed has known I am there for a day or so now. He is so close to the end, his brain and organs are shutting down, he can’t even swallow a pill. I might see my hospice friend on Monday or Tuesday, but I doubt it.

Chad came over to me – we had barely ever spoken before, but I have come to love and respect Chad and his wife Kate, they have been so honest and warm and they work so brutally hard. And they are authentic, in their words and feelings.

When Chad asked if Ed knew him, Carol came over to give Chad a hug and it was a powerful thing to see, I took a photo of it. Carol is somewhat like me, she isn’t comfortable showing emotion, she was showing it then. She was telling him it was okay to let go of Ed, to give him permission to go.

“You know what?,” Chad said to me.”I want him to go, I know he wouldn’t to be like this.” This is hard thing for any child to say, but it was so true and open. That’s when Carol hugged him.

“I’m so proud of this family,” he said.

I said he should be proud. The family has been a rock for Ed, from beginning to end.

Ed is getting to die just the way he wanted to die, at home, surrounded by people he loves and who love  him. He did not die in some hospital or nursing home bed, pushing a buzzer all day hoping someone would come to him, subject to needless and hopeless procedure after procedure, recovering from one pointless surgery after another,  kept alive beyond all reason or comfort or peace.

He was the truth right away and accepted it. It took others awhile to get to the same place, but they did.

When someone needed to wipe his bottom or hold him on the commode, there was always someone to do it, right away.

Carol and her children could not stop his cancer or make him well, but they gave him the greatest gift any child could give a parent or spouse. They gave him the most loving and peaceful death it is possible to have.

And I was so happy to see that Carol, denied the love and support of her family – I know what that feels like –  found it when she needed it the most.

And I guess the same might be true for me.

__

And today, Carol, brave and strong now, wrote this on her blog. There is so much to learn in darkness, so many ways to grow, and wow, has she grown. It is time, she told Ed, to let go.

“But honestly, enough is enough…as much as this is tearing all of us up…it is time to go. You will forever be in our hearts and lives; you can see all who have left before…that includes your beloved cows and dogs, just to name a few.

Go, enjoy and save a spot for the rest of us…we promise to do you proud. No worries for that.

Go rest high on that mountain…please. I love you to bits…we know how strong you are both inside and out…that is why it is so darned hard to watch this all happening to you knowing it is not going to improve.

Calling it quits is not a weakness. It will be the final act of strength you can show us all and for that we will be eternally grateful…We all love you dear Farmer.”

Very good news this week. The refugee soccer team (ten of them) are going to Ramblewild, the famous Forest Adventure Park on August 20 to spend three or four hours from 15 to 100  feet off the ground and up in the trees, where they will  built team work,  and build confidence. And have a blast.

The focal point of the aerial adventure is a 15 ft. high central platform, which is the starting point for the eight aerial obstacle courses. Courses meander from tree to tree at various heights throughout the forest and include elements like high wires, zip lines, balancing logs, rope ladders, cargo nets,  and suspended bridges.

The Aerial Adenture, which we chose for many reasons, including cost, runs three-and-a-half hours.

Four of the eight courses cross over the ravine via zip lines that will keep the team members over 100 feet above the bottom. Everybody will be wearing helmets and gloves, and be attached to zip lines to keep them from falling. Guides will be available throughout the course.

I want to thank Derek Hargreaves of Ramblewild for donating gloves to the players at no charge, they will also be able to use them in soccer practice and games.

Ali says he is going to climb up as well.  I am not going up in the trees, but I am joining the team at a lunch we ordered that will be delivered by a nearby country store – wraps and sandwiches – at 1 p.m., when they come down from the trees.

I thank Ramblewild for a discount as well, it cost $601 for the players to sign up for this activity, I think it will be wonderful for them, and thanks for your support. I appreciate Ramblewild. They don’t just pretend to care, they care.

Also this week, I spent $540 to purchase 13 tickets for the Lac Du Saint Sacrement Luncheon and Dance Cruise on September 13. That paid for 10 residents and three staffers to help and supervise.

We went last year and it was a particular joy to see the residents and the fun they had. As of now, Joan is not signed up for the trip, I’ve offered to buy a ticket for her and for an aide to assist her if it’s okay with Morgan Jones and Julia Harlin, the activities director. I think she’d really love it and I’ll be going also and can help keep an eye on her.

The cruise is a hoot, a beautiful ride around Lake George, lunch and dancing. It lifted my heart to see some of the residents put their walkers aside and  hit the floor. Joan was first among them.

I’m also still hoping to be able to get the soccer team to the New England Aquarium in Boston to see the giant octopus exhibit there and the newly renovated and expanded aquarium, considered one of the best in the world. I think that would end up costing around $700 if I factor in food.

Today, the soccer team makes the first of two visits to the Powell House Youth Center and Retreat in the hills just outside of Albany. They will engage in supervised confidence building activities from trained counselors and can play the games inside of the youth center – pool, guitar, song, and they can visit the extensive library there and get some snacks.

I hope the Powell House will be a regular element in their lives, the Quakers have been working with refugees for centuries and know what they need.

Negotiations involving refugee children and the elderly are complex and require a great deal of planning. I’m getting good at it.

Another big move this week:

In the next few days, I’m going to write a check for $1,900 on behalf of Kelly Patrick, the Mansion certified nursing aide who has been living in a  tent with her daughter and grandson all summer.

Kelly has found a double-wide trailer and plans to sign a rental agreement this week. I thought initially it would be $1,600 but the rent is now $900 a month, and her grandson will be living with her. Kelly has a lot on her plate.

With the funds you sent, I’ve also purchased a TV and some household needs for Kelly.

So this is a banner week for the Army Of Good. I’ve spent a lot of money, but it will really change and enhance lives. I wish all of you could see the progress and growth and confidence of the refugee children.

You are altering the course of their lives, and of Kelly Patrick’s as well. She is deserving of support. We have helped transform the Mansion. It is already a loving and warm place, but they needed a lot of help, they are a Medicaid facility, and discretionary funds are tight. We are helping a lot of people, from getting them air conditioners to buying clothes and shoes, (this week, I’m order  two computer games for Peggy.)

The fund is getting low, naturally, I don’t keep money sitting around, and if any of you have any spare change lying around, please consider sending it to the Gus Fund a/k/a The Mansion Refugee Fund, c/o Jon Katz, P.O. Box 205, Cambridge, N.Y. or via Paypal, [email protected].

I’d like to get it back up to around $1,500 and chill for a couple of weeks. We have some wonderful things planned for the Mansion and the soccer team and some of the refugees. I intend to keep this work small and measured, small acts of great kindness. So grateful.

Your contributions have made this wonderful work possible, and I thank. Doing good feels good, it is the most selfish thing there is.

There was a surprise celebration for me at the Mansion Friday, they put together a special birthday card and also gave me a cup full of goodies. I wasn’t expect it, it was a beautiful gesture and meant a lot to me, I even managed to pull a short video out of it.

I love these people, and am so lucky to be able to help them. You can help me help them buy donation to the Mansion/Refugee Fund, a/k/a The Gus Fund, c/o Jon Katz, P.O.Box 205, Cambridge, N.Y., 12816.

At the Mansion, we don’t seek miracles, we commit small acts of kindness. We will the holes in people’s lives.

This week, sandals for Joan, and new shirts for Wayne, and a small TV for Ruth and Ken (who is in the hospital again.) You can write to Ruth c/o The Mansion, 11 S.Union Avenue, Cambridge, N.Y., 12816. She would welcome the mail.

Although, thanks to those of you who sent tote bags to Sylvie. She has enough now to last a lifetime. Or knowing how much Sylvia loves to receive letters, maybe not that long. You can write to Sylvie c/o the Mansion, 11 S.Union Avenue, Cambridge, N.Y., 12816.