| Number 116 | April 27, 2001 |
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This Week:
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Greetings, I am sorry that this week's issue of Nygaard Notes is a couple of days late. And I am sorry to say that this week's Nygaard Notes is a sad and very personal one. Perhaps it would be more responsible for me to put out nothing at all. Allow me to explain this issue of Nygaard Notes and ask for your forgiveness. I have mentioned several times over the past five months that my good friend and colleague Charlie Smith has been struggling with cancer. Three days ago Charlie Smith died. This is a blow to his family and friends, including myself. Many more people will miss Charlie. He was a tireless worker on behalf of people with disabilities. A big part of that work was his founding, with his father, mother, and a good friend, of the monthly newspaper Access Press in 1990. His loss will be felt widely and deeply. A large part of this week's Nygaard Notes is my response to the death of this remarkable man. Regular readers know that I have been editing Access Press since Charlie became ill in November. His death is thus not only personally painful, but has put unexpected demands on my time and energy. In addition... Exactly one week before Charlie's sudden death I learned that my long-time companion and soul-mate, Marjorie, has breast cancer. This has been more difficult than I am prepared to express right now in these pages, although I will share some thoughts on the social problem of cancer. There will be no Nygaard Notes next week, and perhaps not for a couple of weeks after that. My first priority is to support my partner at this frightening time. But not to worry; I will return. I just can't say exactly when. In solidarity, Nygaard |
-- Audre Lorde, "The Cancer Journals" 1980 |
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I have been thinking about little besides cancer for the past two weeks. I will share some of what I have thought and learned. Cancer is simultaneously a personal crisis and a social problem. Although this may seem obvious, many of my friends and acquaintances over the years nonetheless appear to have labored under the illusion that they could remain safe from some of the risks of modern life by "taking care of themselves." One can only believe this fantasy and I'll explain why it is a fantasy in a moment if one has internalized the individualistic worldview about which I have been writing in Nygaard Notes these past few weeks. My partner Marjorie has filled out many forms and answered many questions since her breast cancer diagnosis, and we have noticed that she appears to have done almost everything "right" in her life to reduce her risk of breast cancer. She has not been able to protect herself. A look at some statistics will bring the point home: As this week's quote of the week indicates, the experiences of breast cancer and mastectomy are shared by thousands of women. In fact, the American Cancer Society estimates that in 2001 approximately 192,200 new cases of invasive breast cancer will be diagnosed among women in the United States, and 1.2 million worldwide. More than 40,000 women will die from breast cancer this year in the United States. If we broaden the picture a little bit to include all forms of cancer, estimates are that 51% of people now living in Minnesota will have cancer before they die. One out of every two people. It's the same in the nation as a whole. Some cancer is undoubtedly due to individual bad luck or the unintended effects of personal choices. The individualized risk factors include: family history/genetics; early first menstruation or late menopause; alcohol use; obesity and/or high-fat diet; sedentary lifestyle/lack of exercise; and several others. Marjorie had none of these risk factors, yet she has cancer. Interestingly, there is a huge divergence in the information one gets about cancer depending on where one looks. The mainstream institutions, including the American Cancer Society, the National Cancer Institute, the Mayo Clinic, and so on, largely focus on two things: the treatment of cancer after it has already occurred, and what individual people can do to reduce their risk in regard to their personal behavior and lifestyle. In other words, they are unable or unwilling (probably both) to consider the idea that cancer is a social problem. This individualistic approach is standard in the United States, and you see the effects in our approach to crime (more cops), health care (more pills), education (more tests), suicide (more counseling), and on and on. The implications of this narrow focus are numerous. Ironically, as an individual with cancer, Marjorie will benefit from this focus. Much money has been spent on developing the treatments and surgical techniques which Marjorie will undergo. There are numerous institutions dedicated exclusively to treating cancer patients, and Marjorie will be able to utilize their resources. These things exist because there is no shortage of sympathy for each individual who is diagnosed with cancer. But why are so many of us expected to get cancer in the first place? A social response to the reality of cancer would require us to take a look at how our society is set up. Some estimates are that upwards of 50% of all cancers (maybe more than 70%) are caused by environmental factors. Pesticides, electromagnetic fields, engine exhausts, and contaminants in water and food are some of the environmental factors under study. Some researchers point to the various ways we have bombarded ourselves with radiation ranging from excessive use of X-rays on individuals to the rampant production of nuclear weapons and nuclear energy plants as the cause of a large percentage of our cancers. These environmental factors have not been studied nearly as much as the techniques for individual treatment and care. There is a reason for that. You can't understand the beach by looking at a few grains of sand. And you can't understand cancer, crime, suicide, health care, or anything else by only looking at your own family or talking to your own doctor. Considering that one-half of all the people in the country are expected to get cancer in their lifetimes, it doesn't seem too far-fetched to imagine that we have the raw materials of a potentially revolutionary movement aimed at changing the way we live. That is, perhaps, the silver lining in this time that seems so dark to me individually. Maybe we can learn from our mistakes if we can only talk to each other and allow ourselves to take charge of our collective futures. What I do not know, and cannot know, is how bad it has to get, and how many people's lives will have to be personally and individually touched by cancer or the other preventable diseases produced by our out-of-control culture, before we can begin to change things. When Nygaard Notes returns, in couple or a few weeks, I will have more to say about the social and political context of cancer, and of prevention and recovery. |
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(On the occasion of Charlie Smith's death April 2001.) Charlie Smith is gone, and I'm sorry. But I'm not sorry for Charlie. I'm sorry for all the people who no longer will have the benefit of Charlie's advice, his experience and, more than anything else, his caring ear. So many times I have been working with Charlie in the Access Press office when we are interrupted by a phone call from someone in trouble. Whatever we are doing is put on hold while Charlie takes in the problem and gives this person, in this moment, whatever they seem to need. Maybe they've called Charlie to talk to him about their disability benefits being denied. "What can I do now? I was counting on those benefits being there!" they would say. Or maybe they have read someone's story in Access Press and they have a similar problem, so they think Charlie might have a special solution to offer them. Maybe they just want to tell someone how badly they feel, or how badly they've been treated by the system. It never mattered. Charlie was there to listen. "Send me a copy of your story," he would tell them. "Call again and let me know how it comes out." I'm sorry for those people who won't have Charlie Smith to call any more. But I'm not sorry for Charlie. I'm sorry for the readers of Access Press. Access Press is Charlie's proud legacy, and it will continue as a strong voice for the community, just as Charlie would want and as the community needs. If we care about Charlie we can promise no less. Still... Many, many readers will miss that particular strong voice that Charlie provided. I have so often seen his dogged determination to speak the truth in the service of justice. The very last Editor's Column that Charlie dictated from his sickbed before he got too weak to write started out with the words, "Shame on you, Governor Ventura!" He was outraged about the Governor's cuts in funding for programs that serve the community. He thought it was shameful, so that's what he said. Another time I remember, from several years ago, is when Charlie and I were talking about his plans to write a commentary on a controversial national issue in which one of our local disability organizations was heavily involved. Charlie didn't agree with their position, and I was fully aware that many in the community were privately saying the same thing that he was thinking about publishing. I pointed out that he was likely to get in trouble for saying what he had to say. I even hinted that the paper might lose a major advertiser if he chose to publish what was on his mind. His response was short and simple: "Well, it's gotta be said." End of story. Duty called, and Charlie answered, as he always did: do what's right for people with disabilities, and if that gets you in trouble, too bad. I'm sorry for the community that is losing such a courageous voice. But I'm not sorry for Charlie. I'm sorry for the people who worked with Charlie in all of the countless meetings, coalitions, committees, caucuses, and other alliances of which Charlie was an integral part over so many years. We came to count on Charlie for his tireless work, his sense of duty, and his good, clear thinking. A special gift that Charlie gave his friends and allies in the struggle was his ability to point out the absurdity of it all, to cut down to size some of the people at the "top of the heap" who allowed themselves to get too far removed from the grass roots. Charlie could be devastatingly funny when he would mock and ridicule the pompous so-called "leaders" who couldn't hear or wouldn't listen to the voices of people in need. Those were the voices that Charlie heard most clearly, and spoke for most passionately. Charlie's humor offered great healing in recent years especially, when taxes and budgets were being cut everywhere you looked, and some of us were in danger of letting our anger paralyze us and make us less effective. Those were the times when Charlie would make some wisecrack to lighten the load, getting us to breathe and giving us the ability to respond when he would remind us and he WOULD remind us that there was work to be done. I'm sorry for all of the allies and friends whose loads will be a little heavier because there's no smart guy and wise-guy! named Charlie Smith to listen to, and to look to, when the going gets tough. But I'm not sorry for Charlie. I'm sorry for the friends who went to the State Fair with Charlie, or to the notorious Poodle Club. I'm sorry for all the people who would stop by Access Press for lunch and jokes, to catch up on the latest gossip, or to absorb the good-natured ribbing that Charlie so freely administered. I knew I could always count on him, as a friend, to pick up the phone or answer the door whenever I needed help, or just when I needed a dose of Charlie. So many of us cherished his LIVE commentaries on politics (those of you who haven't heard him go off on the Governor have truly missed something!). He loved figuring out things and helping his friends solve problems. And he was a reckless wheelchair driver, too. He almost ran me over once on the West Bank! I'm sorry for all the people who won't get to hang out with Charlie and take in all of the amazingly varied and fascinating aspects of this remarkable man. But I'm not sorry for Charlie. I'm sorry for his big brother Bill and his little sister Bridget. They love him more than I think I can ever know, and now they can't be with him any more, at least not in the way they would like to be. I'm sorry for Billy and Bridget's partners, Jenny and Diane, and for Charlie's nieces Katie, Maggie, and little Renιe, and for his nephew Alexander. He loved them all so much. There are other family members that I don't know as well. All of them will always have what he has given them, and I am sorry for them, that he can't be around to give them even more. I'm so sorry that they have lost this loving brother, uncle, nephew, and friend. But I'm not sorry for Charlie. Charlie and I talked about life and death over the years, and especially over the past few months. Neither of us had much to say about what we consider the Great Unknown, so we mostly talked about the life that he had. The people he's helped, the readers of Access Press, his allies, his colleagues, his friends, and his family they all let him know that they loved him and cared about him. And he heard us. He told me that he was overwhelmed by the outpouring. At first he couldn't believe it. I think, by the end, he did believe it. And that's why I'm not sorry for Charlie. He has the love of so many, and he has the knowledge that his life made a difference. No matter how long you live, you can't get more than that. So I'm not sorry for Charlie Smith. I love him. |