I never felt the bite, my leg just suddenly felt hot and extremely itchy, a deep red rash spread from my thigh dow to my ankle. I thought of getting to the doctor’s but when we went online, and saw the marks closely matched the photos of a spider bite. It could have happened out in the pasture or sitting in my chair or even in bed.
I’ve had the bite for two days and the rash and swelling just turned uglier and bigger, the itching and swelling so bad I was thinking of going to the hospital. Whatever spider it was must have had some powerful venom. I still have ice over the bite and am still pouring tubes of Benadryl and Cortisone on the itching, and it seems the ice is bringing down the swelling a bit.
This is a first for me, and I always value first experiences. I’ve had enough, I’d like to sleep a bit tonight. I feel the impact of the bite all over my body.
How odd, I thought, I have never been bitten by a spider and know nothing about spider bites. Life on a country on a farm is chock full of surprises and new lessons, but I am not sure I grasp what the lesson is here. I think we’ve turned a corner today. The ice has numbed my leg. I never even saw the little sucker.
Once a week or so, Ali and I meet halfway between Albany and Cambridge in our “office,” a convenience store in Schaghticoke, N.Y. When I think about it, it is a beautiful thing, a Muslim and a Jew sitting in this small town out in the country, turning some of the heads of the truckers and farmers who come in for coffee.
We make our plans to help the soccer team, and the refugee and immigrant families scattered around Albany. We talk and plot and scheme and have coffee.
Ali and I love one another, we are brothers, and today was a big day for us. I was reminded today that there are many people in the world who do not hate.
Today, I gave Ali a check for $2,500 – this was my own money – to buy a used van for the soccer team. This was an important and liberating moment for us and for the work we are doing with the refugee and immigrant children and their families. He is on the way to purchase it right now.
We faced something of an emergency. And we are very happy with the way it is turning out.
It was no longer possible for Ali to use the big white vans he was using to bring the soccer team to tournaments and practice, to go on retreats and outings and visits to the Mansion.
Nor could we continue our weekend grocery runs for the refugee families in need of food or clothing. We try to find a different family every Sunday that needs food.
RISSE, the refugee and Immigrant support group withdrew permission to use the vans unless all of the funds for these activities came directly to them for disbursement, and went to their board for approval.
That doesn’t work for me. We need the freedom to move quickly and be sure of where the funds are being used and when. As many of you know, I am averse to bureaucracy. And I want every donor to know – and to see – where every penny goes when it is donated.
I am committed to transparency, that’s why I take so many photographs.
I am not comfortable funneling it all into a bureaucracy, where I have no control over it.
If you send me a donation, I can promise you it will go precisely where you want it to go, and right away. And I have kept that pledge. it is my contract with the Army Of Good.
So I made a big decision, too go out on my own and do this work with the help of Ali and and some other people who wish to help the refugees.
I will continue to support RISSE in any way that is possible, and I would encourage all of you to do the same. But I am heading off on my own, starting out own support group with our own wheels.
It’s a little scary, as bold decisions usually are, but I’ve been waiting all my life to be free to do things like this, and I’m not going to give that away.
We don’t need to ask anyone for permission, or wait for money to be approved and disbursed. We are close to the refugee families now, and have a good understanding of what they need. Some of those needs can’t wait.
Ali and I are eager to work together to continue this work, and we are both excited to have our own transportation available seven days a week, 24 hours a day. Ali has been looking for a van for weeks, and he found a 2006 Odyssey, inspected, with new tires and in good shape.
To get this van, we didn’t have time to launch a fund-raising drive, and I am happy to donate the funds myself.
We had a great time whooping and laughing in our “office,” Ali and I don’t look like anyone else there, we do stand out. Everyone has been courteous and welcoming to us.
We were very happy today, nodding and smiling at the people in the next booths. Ali and I just click, we see the world in the same way.
This feels like a huge step for me in a year of huge steps.
In recent months, I have not only meet and gotten to know the soccer team players, but also a number of families from Myanmar, Thailand, the Congo, Syria, Columbia, Tanzania and the Sudan. So many of them have come here with so little, and face deep and cruel cuts in support and subsidies from the federal government. I feel close to them, and admiring of their struggles for a better life.
I find that many have urgent needs that are not being met by anyone.
So, and with Ali’s great and invaluable support, I am working to highlight those needs and trying to meet some of them. I am touched at how well we work together.
Ali has helped me to see and understand the refugee and immigrant controversy in America in a very intimate and personal way. I could not have done that by myself. And I could not have found a better human to work with, he is devoted to these children and their families, he thinks of them every day, they trust him completely, and thus open their lives and hearts to me. This is just what I dreamed of doing when I started this work.
My short term agenda:
I am organizing a tutoring program for middle school refugee children struggling with language problems. I have found a wonderful tutor named Suzanne, we are bringing six children to her home next week, we are setting up a tutoring schedule for all six of them. I have raised more than $1,000 for this work.
Tuesday, I am meeting a mother from the Sudan, she has two children, her husband has been crippled by spinal disease, and she has just been evicted by her landlord because she was $75 short of the rent. Her hot water was cut off for weeks. She is moving to a new apartment. She needs groceries now, she is paying her new rent.
The soccer team, the Bedlam Farm Warriors, are playing in a tournament next week, they need transportation to their games. Some need shoes and clothes. Some need tutoring.
We are also identifying refugee children with special needs – bringing a microphone to a young singer, a digital camera to a young artist, a dress for a young student who only has pants.
We are planning retreats for the team, a visit to the Great Escape and a boat ride.
I have arranged for uniforms for a girl’s refugee basketball team forming in Albany. The Army of Good has just donated $23,000 worth of school and other supplies to RISSE through the RISSE Amazon Wish List program. I hope the Wish List continues, it was a staggering success.
I will be concentrating on raising funds for my new and quite unofficial, slightly rogue group.
We are funding all of these activities ourselves, from the support we get is from the Army Of Good. This is a liberating step for me and for Ali as well. I will be able to help people in new and creative ways.
Your support is welcome: The Gus Fund, Jon Katz, P.O. Box 205, Cambridge, N.Y., 12816, or me via Paypal, [email protected].
Ali is purchasing the van right now, i hope to have a photo up later tonight.
This morning, Carol Gulley broke the news on her blog that I feared but dreaded hearing: Ed has an inoperable brain tumor – actually six or more in his brain – and he has declined chemo, surgery or therapy.
The doctors say his peripheral vision is already affected by the tumors and he wants to have some time to see a bit of the world, for the first time in 40 years, and while he is able.
Ed says he doesn’t want to feel any sicker than he does.
“I am writing to update you on moving forward,” wrote Carol on her blog today. “Travel is first on Ed’s list and as soon as we can pull things together he is heading to see the blue Montana skies…then off to whatever destination he likes.”
The family is already gathering to run the farm and take it over and keep it working.
Ed wants to set out to see a rodeo in Montana, visit friends in Amish Country, and he is determined to go to Maryland to buy and bring home a large wooden gorilla, so he can sit outside of the farm-house and shout “I’m still here!”
Carol is a student in my writing workshop. As a life-long dairy farmer, she is new to writing. In a few weeks she put up a blog, even thought she had never seen one. It is very successful. So many people look at me like I’m mad when I talk about the power of a blog. Ed and Carol got it right away.
Carol takes videos and photos and is working with Ed on a book on a book about the four seasons of Bejosh Farm.
She and Ed plan to blog from the road. Carol is a genuine writer, the real thing. She is brave, authentic and articulate, even under the worst kind of pressure and sorrow.
I am beginning to find my center in this, I am beginning to figure out how to be a friend in this time. I’m already working with Ed’s daughter Maggie to find voice recognition software to go into the new laptop they are buying for their trip. I’ve been trawling online reading through catalogues and reviews and have 100 pages of printouts.
Ed is already having vision programs and may have difficult manipulating a keyboard. I’m seeking voice recognition software – they call it assistance technology – that will make it easier for him to control his new laptop with his voice and writing without having to type on a keyboard.
Ed finds our farm calming, he and Carol are coming over today. The farm and our home are always open to them, it feels good to help them in that way. I hope he is here often. Every time we meet, Ed thanks Maria for guiding him on his own artistic journey.
For me, the road to clarity and peace comes from figuring out how to be helpful, rather than wring my hands. Ed and Carol are farm-strong and tough, they will handle whatever they have to handle. Like me, they respect life and accept it. The farm is a greater teacher of acceptance. On a small family farm, you accept life or perish.
But even pig-headed Ed, the man of the iron will, knows he will need some help.
Of all the people I have ever worked with or talked with, Ed and Carol grasp the power of the blog to find their voices and speak to the world and use creativity – writing and images – to tell their story.
They can and will speak for themselves. They have embraced new technologies that terrify even much younger people, they are determined to tell their story to the world.
For me, adjusting to the inevitable loss of one of the best friends I am likely to have is hard. It is hard to see the rationale for that, until you understand that fate doesn’t need one. I will get there.
Like death itself, this is sad, but not only sad. Ed will treasure this time and opportunity. In recent years, managing the grind of a dairy farm has been wearing him down. Ed has had a good and full life, he is grateful for it.
In the past few years, Ed has found himself and so has Carol.
He has grasped his own potential and unleashed his own creativity.
Most of his working life has been about his farm, the land, and animals. To that he has added writing and art, he has unleashed the creative spirits yearning to be free. Ed’s life never permitted him to stretch his mind, those barriers are gone now.
He is free. I am eager to see what he creates.
If you come to our Open House this Fall, you will see the fruit of his creation, his evocative and authentic art sculptures. They will be all over our lawn.
Ed is a larger than life person, people like that live on and on in many ways. I expect Ed will be around a good while, he is stubborn and mean, but he and I will talk openly about death, we won’t dwell on it or run from it. Illness will not define him, or be the legacy of his life. And fear will not overwhelm him.
We will have some fun, shed some tears, tell some lies. Friends sometimes take each other for granted, that will not happen here.
When Henry David Thoreau wrote about the death of a friend, he said when that happens, the fates have bestowed upon us the task of a double life, we must go forward to fulfill the promise of our friend’s life also, in our own life, and to the world.
Ed is one of those very rare birds with the courage to change and to grow, and to fulfill the promise of his great mind and creative spirit, to the end and beyond.
Maria and I have devoted our lives to doing the same, and if I ever falter or stumble, I will hear a loud and strong voice in my head, thundering, “get off your ass, no moping!”
