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.