In 1997 my brother, Edward Louis Zeines, passed away after a long and painful struggle with ALS. It is this experience, and maybe a few other things, as to why I will not accept the ice bucket challenge.
My brother was an interesting guy and had a great deal of influence on me (both good and bad) when I was growing up. To get the bad stuff out of the way: he was 8 years older than me and used to terrorize me on a regular basis. He would often want to rough house with me which more times than not, which mostly resulted in some form of serious injury. To get a clearer picture of our age difference, when I was 5 years old, my brother was 13. Just imagine what it would be like for a 5 year old to be in a wrestling match with a teenager. It made me tough. He taught me judo which we learned from a book and I would practice flipping him in the living room, but somehow at the end of it all, I would end up getting hurt.
Another thing about my brother Ed was that he had a knife collection. He was a bit obsessed with weapons in general. When he was 12, he took an old plastic snorkel and refashioned it into a blow gun with darts made from sewing needles. One day while we were playing around, he accidentally launched one of these into my face missing my eye by a mere inches. The knives and swords he collected adorned our shared bedroom wall. He even made a few machetes himself carving out the handles and molding the metal blades from scratch. He would also make wooden guns for me which had a rubber band mechanism to launch cardboard squares as bullets. He was inventive to say the least.
But the thing that I feel most influenced by, was his creative streak which showed up as drawing early on. His sketches of crazy men and spaceships got me interested in the fun that is drawing. So to this day, I owe my own obsession to him. One that has given me great insight and pleasure.
In 1987 my brother told me over the phone that he was having trouble with some pains in his arms and legs which he at first thought were Charley Horse. It was soon thought to be MS (multiple sclerosis) but soon the death sentence of Lou Gehrig’s Disease (ALS) was the prognosis. At age 39, he was given five years to live (he lived 10). When he showed up at my daughters first birthday party in April 1987, we were shocked to watch him walk across the room on stiff legs.
As the months passed, we would speak on the phone, his voice became increasingly strained. His home care was becoming more and more difficult to manage. There are many things I will not even trouble you with here because there is a measure of shame in coping with a disease like this and I just don’t think all the details would be useful. In truth, you can never do enough for someone in this condition. As his life was transferred to a nursing home, that became even clearer.
He spent his last years at Waterview Nursing Home in College Point, Queens. It was here that he began to write poetry on a small voice computer. This man was no longer my brother. The disease had transformed him. He became a prisoner in a failing body. As a result, he was difficult to be around. He was frustrated and angry. Communicating became very difficult. During the course of his time there, we visited him less and less. It was a difficult place to bring oneself to go to. This is not something I am proud of, but it is the truth. To boot, my brother had young children of his own who would never know what it was like to have a normal family. As his life neared its’ end, my own family broke up through separation and divorce. Late one night in early 1997, I got a call from his wife saying that he had passed away from complications resulting from pneumonia. I had the sad duty of calling my mother to give her the news.
You would think after hearing my story, which is brief and leaves out a whole lot of facts that I do not wish to share, that I would be the first to jump on the bandwagon and take up the “Ice Bucket Challenge” which has swept like wild fire through the internet. But I will not. Throughout the years of my brother’s illness, there was never any help from any organization. The presiding charity at the time was Jerry Lewis’s organization MDA (Muscular Dystrophy Association). At the time, ALS was seen as a minor province for them, but I now see the Ice Bucket challenge displayed boldly on their sight.
Disease charities have a long history. But in my view, none have done much to cure anything. The current CEO of MDA, Gerald C. Weinberg pulled down a reported 400K in salary. MDA raises in the vicinity of 175 million in donations a year. Why would an organization like this want to cure the disease they profess to represent? I am not accusing MDA of anything, and there are no reports that I can find, but I am not fully convinced, at least in the case of my family, of their merit.
This type of behavior is nothing new. It has been proven true of cancer where innovative and natural cures are proposed, and then squashed because it threatens the American Cancer Society. Pharmaceutical companies would fold if such an event were to occur. Their mission is to treat disease, not cure it. I have mentioned in the past that if illegal drugs were suddenly to become legal, it would have an impact on the Drug Enforcement Agency, the prison industrial complex and drug companies. It is in their best interest that this never happens.
I am not going to back up my argument with facts or references. There are plenty of stories around the internet that can verify my point of view and if you really wanted to, the reader is free to research them. This is my gut feeling. It may not be entirely rational I admit, but my experience supports a basic mistrust of large charities.
Maybe the reasoning behind my feelings comes from reading about how other things do not happen due to large corporate interest. A good example is the resistance to the legalization of hemp. If hemp growth (NOT Marijuana) were to be legalized, there are about 200 different corporate interests that would be impacted. Cotton, dairy, fuel, fiberglass, plastics, paper, construction and lumber are among the areas that would be threatened by the legalization of hemp. These areas represent corporate power houses who have lobbied for years against our better interests.
This is what I feel about disease charities. They play on our emotions. They make us feel that if we do this small thing, send in our $100 check, we will be doing so much to help find a cure for this most horrible disease. And yes the disease is most horrible. But more times than not, your check will never reach a laboratory or a scientist working on a cure. It will go to keeping the giant corporate structure that gets on television every year at Labor Day, parades a group of afflicted children around to stimulate your sympathies, and then funnels the cash to keep the glass giant alive.
So in my view and as someone who has actually had to bare the consequences of ALS, that the “Ice Bucket Challenge” is extremely naive.
Of course if you like to pour ice water over your head and video tape it for your friends, I say all power to you. But please do not nominate me or any of my family members. We have suffered enough at the hands of this disease and would like some real solutions.
It is hard to describe my feelings to a politician. It almost seems like an act of futility. I believe in the old joke that says “How do you know when a politician is lying? He is moving his lips!” Just to let you know, I voted for you, even though I was aware of the stacked odds against implementing your progressive agenda. Given that, I still stand behind many (not all) the initiatives you expressed in your campaign for mayor. My wife even joined your team and was sitting ringside at your inauguration.
And I half understand why you need to sidle up to the governor. We all have to get along with our co-workers, right?
Well here is the other half of that understanding. I am an artist who has always sat far to the left of most things. I am not a radical or a subversive, but I have been known to express extreme left ideas. This may be a byproduct of my clear understanding of humanity and a reaction to the rampant epidemic — addiction to greed. A disease which has rapidly consumed just about everything hopeful on this planet. My response is to look ever deeper into my own heart and search for personal ways I personally can have an effect on our current paradigm.
Another full disclosure about the woman I am married to: like your wife, she is a women of color and a staunch activist and realist in the growing area of urban farming, an agenda I strongly support. So much so that I am now working hard to make this my family’s collective future as I ride that road into my so called “senior” years.
So it is with these small revelations that I will not be supporting any of your candidates in the upcoming primary. For one, I cannot in any shape or form support Fracking. Our environment has taken so many direct hits with no response, it is sickening. And to support a governor who would stand with those who will shamelessly pollute and poison our very source of life, which is water, is unconscionable.
I am also aware of some of the forces you were up against the moment you took office. That force I refer to as the “Developer Steamroller.” This force I fully believe is perched to roll over everything in Brooklyn. With rents in Crown Heights jumping 21% in one year, someone like myself needs to take stock and wonder if there is any future living in this city. Also, with the recent bulldozing of a community garden in Coney Island and several similar stories from around the country, I have to wonder whether an urban farming initiative has any real future in New York City. I say this because even though on the face of it, urban farming may be the most sensible movement to come along in decades—greed addiction threatens to undermine any effort to create a counter attack on poverty. Growing food has been proven to be even better than artists in resurrecting blighted neighborhoods. But once the positive effect has taken hold in any area, the urban farmers need to keep one eye open for the coming reclamation of the land they are farming on. The developers are sending a message that says…”Thank you very much for improving the prospects of my property. Now take your tools and your compost, and get the f**k out of here!”
Until a few days ago, I was not even aware there were any candidates who opposed Mr. Cuomo. I, like everyone else thought he was just a bad dream we were all stuck with. When the New York Times denied him an endorsement (I don’t read any newspapers or watch TV, news included) and the information reached me through social media, it was a wake up call for me, and maybe hopefully a lot of other New Yorkers. I intend to rally people to get out to the primaries. In NYC, the primaries are extremely important as this is a democratic city, and the election can very well be decided by the primary.
So to reiterate, my position is one of progressive movements that do not run counter to our capitalistic ways, but should actually serve to help build a new economy in America. Urban farming, transportation alternatives, renewable energy and re-envisioning education (my wife and I are among the founders of Brooklyn Free School) are issues that to me point the way to a more positive future. As it stands now, NYC has been rated the most unhappy city in America and it is no wonder — as every sense of hope is consistently being attacked at every minute. I am a long time member of the Food Coop in Park Slope so I support GMO labeling and NO GMOs in our food. I would like to see the eradication of harmful pesticides in the growing of our produce or at least a real evaluation of that process and a move away from an industrial farm model. I support community meals, community farming (CSAs) and most things that have the word community in it.
It’s my position that fossil fuels need to quickly become a thing of our past and anything that supports a positive future for a real “green” economy will get my vote. I am aware that because I cannot put large amounts of lobbying cash into anyone’s pockets, that I am looked at as insignificant. But if people will pool together their efforts and try to jolt our politicians awake as to the direness of our situation, our vote can make a real difference.
So if you and Andrew are a little nervous, I feel that it is tough luck. Andrew should already be suffering from severe stomach ulcers with the frequency of his counter intuitive decisions. The consistent grimaced look on his face speaks volumes.
Of course you still have a chance to appeal to your base, and return to some of the common sense policies you rode into office on. As a fellow Brooklynite, I know you are capable of it.
Some years ago, I watched this British film called The Bar Mitzvah Boy. In it, a working class Jewish family in North London undergo preparations for their son’s Bar Mitzvah. Meanwhile the boy is going through all kinds of apprehensions which no one seems to notice except his sister. While the parents are busy arguing over who will sit with whom at the catered affair, their son is going through anguish. The upshot is that the boy is a no-show on the big day.
His sister finds him in the park and confronts him why he did not appear and how disappointed everyone is. The boy lists the aforementioned distractions of all the adults. His sister asks him if he is afraid to recite his Torah portion. He says that he is not and that he can recite it standing on his head, which he proceeds to do.
When this is brought to the Rabbi’s attention, it is declared that he has fulfilled his bar mitzvah requirements by reciting his haftarah before the lord.
I relate this because for one, it has always stuck with me. My own bar mitzvah was a very stressful affair. My father really could not afford the event, which always seemed like a competition between neighbors and relatives as to who would have the more lavish affair. I remember being harassed by the photographer constantly (he doubled as a magician) and I did not have a moment to hang with my friends or get to speak to my relatives and to hear whatever pile of nonsense they wanted to relate to me about my “big day.”
And these days, from what I hear, these events are even more over the top.
When my son was born, it was a question about whether he would be circumcised or not. My wife is not Jewish, but her brother and cousins had all undergone the procedure. When I asked my Nigerian doctor for advice, we went over the pros and cons, and the conclusion was on the pro side. But from what I had read, I wanted it done by a mohel, and not a surgeon, so we waited the requisite time.
My key business associate was (and is) orthodox and through him, I became friendly with his rabbi. When the time came, I asked Rabbi Fund, if he could recommend a mohel, and would he preside over the ceremony.
Jewish law requires that 3 holy men be present and that in order for a child whose mother is NOT Jewish be circumcised, he must also undergo conversion. We agreed. My wife and I, and our son met in a small Flatbush storefront synagogue and the deed was done.
But when Noah was approaching his 13th birthday, we asked whether he wanted to be bar mitzvah’d or not. We spoke with several people. My son thinking that this meant getting a lot of money, had to be put straight regarding our financial situation. That said, he was also apprised of the work involved in learning to read Hebrew and recite his Torah portion. So basically he refused his induction into Jewish manhood and the matter was laid to rest.
Yesterday, we made a vist to his grandmother who is in rehab just outside the limits of Crown Heights. We took a long route by walking from Eastern Parkway through some of the most orthodox sections of Hasidic Brooklyn.
As we passed one of the Chabad tables, a young man and two very young boys approached me and asked “you wouldn’t happen to be Jewish?”
Now I already know what is coming next and sometimes I just shrug them off. But on this day somehow, I was feeling spiritually predisposed so I said yes. They then asked if I would like to do a mitzvah (good deed) by putting on tefillin. I then explained my son’s situation to them.
We learned that the first time a young man puts on tefillin and recites the accompanying prayers, he is officially bar mitzvah’d. Noah agreed to the opportunity and we both stood there, on this busy sidewalk on Kingston Avenue, and recited the prayers with the phylacteries on our heads in the bright sun. When I covered my eyes, to utter a silent prayer, I thought only of my family and what I wished for everyone, which is peace and prosperity.
Then we walked on. I asked Noah if he felt any different, to which he said “no.”
But something was different.
And this allowed me to relate to him, a much loved joke.
Moishe and Chaim are good friends. They are always discussing ecumenical ideas, arguing over philosophy and trying to face the big questions about life.
One day they are walking down the street and they see a banner hanging outside a church which reads “Convert to Christianity and get $50!”
They stop in their tracks and look at each other. “It would be nice to get the $50” says Moishe. Chaim agrees.
When push comes to shove, Chaim agrees to enter the church, and report back to Moshe afterwards.
15 minutes later, Chaim comes out. Moshe is there waiting for him.
“So, how’d it go?”
Chaim shrugs his shoulders.
“Do you feel any different?” asks Moshe
Chaim says, “No, I feel the same.”
Moshe asks “The $50. Did you get the $50?”
Chaim looks back at Moshe with a look of consternation and says, “$50? What’s with YOU people.”
And with that I say happy Bar Mitzvah to my wonderful son. Now you are a man.
Norma Elaine Durrant needs your help with her mounting medical costs due to a serious neurological illness.
In May this year, Norma Elaine was finishing up her time in Kingston Jamaica. She was about to fly back to the States, but needed to stay just a few weeks more in order to attend an awards ceremony, where she would receive the Prime Minister’s Medal of Appreciation for her long service in education to the island nation.
At the end of May, Norma Elaine began to complain about symptoms of dizziness, nausea, numbness and unusual sensations in her head. On June 1, her daughter (my wife) flew down to Kingston, Jamaica,to accompany her back to the States so that she could see her doctor. When her daughter arrived in Kingston, she observed what she believed to be the beginning signs of a stroke and immediately took Norma to the hospital where her condition quickly deteriorated. She was admitted to the Critical Care Unit at University Hospital (UHWI). She began to lose muscle control on one side of her face and body which caused her to be bed ridden in Jamaica for a total of 6 weeks. She could not swallow on her own and had to be fed via feeding tube. She contracted hospital borne pneumonia and aspiration pneumonia during her stay. After 4 weeks in Critical Care she was transferred to Medial Associates where we were encouraged to seek special evaluation in the States because her tests did not conclusively confirm that her symptoms were the result of a stroke.
It was at this stage that we began to look into getting her to NY via air ambulance.
The air transport alone would cost 23K and the insurance company would not pay for it up front. She could not fly on a commercial flight as she could not swallow and would need oxygen throughout the flight. Therefore the transfer costs fell on the family.
Norma was finally transferred to NY Methodist Hospital in Brooklyn and has spent the past two weeks improving dramatically. But here, as in Jamaica, after several tests(MRI, CT Scan, x-ray, ultrasound, etc), doctors still could not confirm a stroke. However, based on her symptoms, they still recommended agressive nuero rehab. She is now at The Dr. Susan Smith McKinney Nursing & Rehabilitation Center in Brooklyn where she will receive the treatment she needs.
As you can imagine, entering the US Healthcare system with any kind of insurance is still expensive. Many of the copay costs, the air transport and other services fall immediately on the patient, and over time add up to tens of thousands of dollars. We are asking family, friends, neighbors, fellow church members and good samaritans to help Norma in her recovery and post recovery. She has spent her life in service of others. Please help her return to a normal life as soon as possible.
There are moments in life, where a series of events converge, to put one in a position that questions the core of our very existence. This may be one of those moments for me. It is one of those times I have to ask, why I am where I am, without the wish for a ready explanation. It is this kind of questioning, which needs to go deep, that there is a flash of great wisdom—one in which a vision on how everything is connected. If I were a better mathematician, I would be able to write an algorithm that would explain not only all of nature, the stars and the galaxies, but how those realities are connected to my struggles with money, the illnesses of loved ones, the seemingly chance encounters with new strangers and the opportunity to express myself in front of different groups of people.
It was with a sense of abandon that I agreed to spend a day at the Alternative Education Resource Organization Conference (AERO) which has been going on for the last few days at Long Island University’s CW Post campus. I will justify my first paragraph in a bit, but I wanted to give a brief recap of the day and why my sense of universal connectedness is especially strong this morning. My daughter and I left here early in the morning to catch the trains out to Westbury. We were met by taxi and en route, the driver picked up another attendee. We quickly exchanged introductions and before we even reached the campus, I was already engaged in discussions about the school, where this person came from and by the end of the ride we quickly delved into philosophical territory about why we care so much about the education of children. It set the tone for the day. Not having a clue or an agenda, I randomly picked which workshops I would attend. My method was akin to throwing a set of dice or going “eeny meeny miny moe.”
I saw the workshop “Experiencing Awareness Through the Body” by Margo W. MacLeod. Margo and her assistant were the first people I met at the table in the morning. I was unsure if I would attend. I spend my year engaged in activities centered around self awareness. Being a bit of snob I saw myself rejecting another approach. But looking around at the other topics, and my daughters enthusiasm, I followed the invisible thread that led me into the room.
I was pleasantly surprised with the gentleness and unpretentiousness in the way the workshop was conducted. We were led in a very simple sitting, which covered familiar territory for me. It established a quiet in my body and deepened breath which supports a state of calm. Next we were asked to stand and with eyes closed, to slowly and carefully walk around the room with this same sense of awareness. When we came into contact with another person, we were to stop and take an impression of what we felt the moment before we made contact. For me, there was a sense of the subtle body heat of another. The second part of the exercise was when making contact with another person, we were to stop and slowly stand back to back with that person. Then sit down on the floor with our backs together. Keep in mind that I did not know any one except my own daughter so there is a huge element of trust here. As we sat, the presenter placed an object into our hands. With eyes closed, I tried to sense what it was. At first I thought it was an artificial flower but then realized it was simply a balloon. We were asked to try to feel the color and texture (interestingly, I sensed it to be red and when I opened my eyes, I was shocked to see that I was correct.) We then followed with a number of games involving the balloon.
I left the workshop feeling very refreshed and awake. This particular approach to quiet work was not presented without reason. It is a method of creating self knowledge in children as well as adults. It originates from a school in India and you can find out more about it at their website. The video is of particular interest and was shown at the beginning of our workshop.
Next we went to the auditorium to witness the two keynote speakers of the morning. Ramchandra Das who runs 3 ashram schools in Nepal, and Skyping from England, Zoë Neill Readhead, daughter of A. S. Neill and now Principal of Summerhill, the oldest democratic free school in the world.
After lunch we attended “Bringing Democratic Education to More Communities” with Nikhil Goyal. This is where it became interesting for me. Nikhil is a very engaging and intelligent speaker. He is also very young (19.) The discussion went around the topic of why we have such a difficult time getting others to accept this seemingly successful mode of education. Nikhil said that when he visited Brooklyn Free School, his first reaction was “where were the metal detectors? Where were the guards? Where were the unhappy children?” But here is where I saw the opportunity to bring a certain level of understanding which has come from experience. I said (in essence), “what you are asking for is a huge paradigm shift. The world, at least to my eyes is extremely messed up. A situation that has in truth, been created by us adults. And we are asking that our youth take possession of this f**ked up situation, and fix it. Then the education system that created this mess wants to tell the children what they need to know in order to have the skill, knowledge and desire to correct the woes of humanity. What we in the democratic movement are suggesting is that EVERYONE drop their attachment to how they understand things, and trust children to find their own path to knowledge and actualization. But most human beings, including those sitting in this room, are unable to do that completely. Talking about it does not really help because we are asking people to “imagine” what this form of education can do. Until one actually experiences it and is directly affected by it, over a period of time you begin to absorb the fact that Democratic Education is actually another dimension of learning which is completely unfamiliar to the average person. To change how people receive this is paramount to trying to change the whole of the planet.”
We all eventually agreed that the process needs to be through osmosis. There are many more Free Schools now then there were ten years ago. But there needs to be a bigger understanding about how these schools will survive past a decade or so. One elder gentlemen brought this out very clearly. He said that we need to become familiar with the word abjure (def: solemnly renounce.) This is a huge leap for most of us, including this writer. It requires a willingness for me to give up my false sense of authority. But in doing so, it allows me to realize that in truth, I am not in control of my life. I would like to think I am, but as I approach my 59th birthday, I am beginning to accept that I am not. And I am okay with that. Because it gives me the opportunity to study my condition in a whole new way. There is a sense in me that everything is connected and that my own condition has brought me to the unique understanding that is beginning to unfold in me. I am still thankfully in a process of learning and growing.
This sense of “being-connectedness” draws me out of any self pity for things not always being easy—for events converging in a way to make me feel the truth of my own discomfort. It is because I have a wish for something more. A wish to live a life that is truthful and meaningful. How that happens may not be entirely up to me. But there is something I can do. I can make myself available to this new understanding and not resist the truth of it. I am where I am because of where I have been. If I surrender my false sense of authority, it gives me a chance to find a real sense of authority. And that sense has much greater value in the real world. So by the end of this workshop, the fact that we had gotten out of bed in the wee hours began to make itself known. I had a hard time keeping my eyes open. After the second afternoon workshop, where I worked with mind mapping, we headed home. But I am full of thoughts and feelings this morning about the strong sense that I am just one small point in a grand fabric. I am grateful for my one day experience for helping me back to that truth.
Holidays. A time where I am possessed by the deep need to lay about and do absolutely nothing without any guilt. One of my guilty pleasures is to search for movies from the past year that I have not seen and kick back and watch. If it is science fiction, even better.
So it was with great disappointment that I chose to attempt watching Enders Game. I am not going to bore the reader with a recap of what the film was about. Basically Alien invasion infuses earthlings with resolute survival instincts to retaliate and destroy enemy. In this version, kids are trained for that purpose, because it is understood that children process complex data way faster than adults. Children are selected to be killing agents for earth.
Science fiction, which I read a great deal of in high school and then in art school, was for me, a genre rich in imagination. For instance, The Foundation Trilogy by Isaac Asimov was a far richer Star Wars scenario then the latter mentioned. Robert Heinlen, Harlan Ellison, and others were all so rich and varied and exciting to read. So why is it that every big screen sci fi has to have some scenario involving war or dystopia. Have we become so jaded that we cannot envision a future that is not a direct extension of the present? Do we have any sense of hope?
Now I am going to reveal my own idea for a premise. If you wish to collaborate on a story with me, I am all ears. So here it is…but keep in mind that if I see a script in a year or two without credit and it becomes a multi million dollar project, I am calling my lawyers.
What if another race of beings from far away came with a purpose—not to destroy or dominate or usurp us, but rather to enlighten the planet? I have this vision of a superior race, who observing our condition, sends an electro magnetic pulse onto the surface of our planet which instantly puts the entire human race into a state of instant self realization. What would be the consequences of such an event? Would it all be positive? Could the majority of humans sustain such an event without going completely mad? My working title is “The Bodhisattva Ray”
I believe that the current sad state of films coming out of Hollywood is the way it is because for one, everything is about making money. Two, most screen writers and directors do not have the personal vision to see much past what has already been done. And three, very few humans are actually in the process of seeking enlightenment, therefore they are unable to see a race or planet that would represent a higher ideal.
I often walk the streets of Brooklyn, many times accompanied by my son, where our discussion and thoughts work out scenarios where the world could be improved. How things could be made better. What would our streets look like with less or no cars. What if people cared more about their immediate environment? What if corporate businesses, fast food restaurants, liquor stores, cheap food markets (too much candy, chips, lotto tickets and sweetened soft drinks) did not litter our landscape, but rather open spaces (for ALL) existed and our mobility was clean and sustainable? What if there were food gardens everywhere? Or that community among neighbors was part of the natural order rather than an occasional feel good event?
I am waiting for a good movie like that. It probably will never happen though. This is because there will be no fancy weapons, no horrific and scary aliens, no kung fu and there will be no requisite murder, death and violence. After all, they will say, who wants to watch a film full of meditating, peaceful and functional characters? Disharmony is so much more entertaining.
Join Chris on this twenty-year tour of his singular writings on children and education. His parable-like stories and probing essays deliver his insights with a clarity and immediacy seldom found in books about teaching and learning.
Chris’s four decades of experience with kids of every imaginable kind in deeply human settings have earned him a profound understanding of just what it is they need in order to develop to their fullest. While so much of the educational literature today deals with children as though they were disembodied brains, A School Must Have a Heart explores every dimension of learning and development—and doesn’t stop until it gets to the heart of the matter.