I’m standing at the kitchen sink shelling shrimp for dinner and I’m thanking my lucky stars I’m not my famous (within certain political and literary circles) friend who is “terrified” (I know this because I’ve just got off the phone with her) at the thought of her reading later tonight in Santa Fe, where she will not only read to an eclectic group of unknowns but to her new boyfriend as well, who is also famous and flying in from out of town for the occasion.
I’m terrified only when I anticipate the nasty letters I might receive for the essay or newspaper article I occasionally write for a weekly Santa Fe paper that explore the political battles I deal with as a community activist. When the paper devoted an issue to the question of race and culture in northern New Mexico, where I live and work, I wrote about how the environmental movement fails to address issues of social justice. While I was careful not to call any particular enviros racist, I did identify the policies they effect as such. Surprisingly, I didn’t get any nasty letters for that article, but the one I called “A Question of Semantics”, which poked fun at these same environmentalists who co-opt language in an attempt to validate their positions (I questioned their use of the word “radical” to describe what I see as their reactionary politic) raised a lot of hackles.
However, this is merely a by-product of my by-default career, if one can call it that. With my “unmarried partner” (the box I checked for the 2000 Census) I write a community newspaper and organize around issues of environmental and social justice. If someone in high school had told me this would be a career, I would have laughed in her face. I was destined for academia, perhaps the law, at least “great things.” That I never got there is perhaps due to the fact that my concept of “there” was destroyed by the process of “getting”, which is essentially the substance of mine—or anyone’s—life. The “getting” took place in the late 60s and early 70s, when I and my fellow travelers were engaged in smashing the “there”—Vietnam, the military industrial complex, the nuclear family, etc.—as fervently as the times demanded.
But that’s only part of the story. My famous friend, who is “terrified” in Santa Fe, came of age alongside me, but obviously decided at some point in her life that she would dedicate it to writing books. And part of the dedication would mean being part of a national (i.e. “famous”) community that was writing and speaking to the same issues as she. I don’t know if people who so dedicate themselves to certain causes consciously say, to be successful in my endeavor I must be willing to promote myself, so that my voice becomes part of the larger voice that is listened to, that makes a difference.
Whether or not this is a conscious decision, the effect remains the same, be it Scott Nearing or Andy Warhol. I just finished reading a memoir by Helen Nearing of her life with Scott, who in an interesting twist of fate was first famous as an academic and political activist until he was banished from academia and became even more famous as a homesteader who repudiated academia and the public life (although he remained steadfast in his political life). Although a certain air of self-righteousness permeates this book and several of those they wrote together, it seems that Nearing genuinely believed that in order to share his private and political vision of what constitutes a good and moral life (he never would have embraced poststructuralism) he needed to lecture, write books, travel, spread the gospel, so to speak.
Warhol, on the other hand, dedicated his life to being as notorious as possible for the sake of that notoriety. Whether this was motivated by the Nietzschean “will to give expression to one’s personality” or simply the drive for “utter moral worthlessness”, like Colette’s first husband, Willy (from Secrets of the Flesh, Judith Thurman’s biography of Colette), doesn’t really matter. He procured his fame, just as Nearing and my friend did, and they all had or have to deal with what fame brings in our society: terror, unwelcome distractions, or attempted assassination (at least for Warhol).
It’s easier to stay home, both physically and mentally. In one of my feeble attempts to actually get a book published with the local university press, I remember telling the editor that I lacked the chutzpah it took to promote myself, and that if her press didn’t publish me this would be the beginning and end of that particular career (and it was, if you don’t count the children’s book I wrote that was published by a Santa Fe house that took 10 years to sell 2,000 copies). I’ve written some national magazine articles over the years that chronicled life in northern New Mexico, which people in mainstream America find fascinating, but the few attempts I’ve made to sell articles of import, where my voice could perhaps make a difference on critical issues of environmental justice, they were dismissed as too “local” or too hard to understand by an “eastern, urban readership.” Thus I learned that one has to pay dues, like my terrified friend, before one’s voice is heard.
I imagine that there are millions of us out here, voices that are knowledgeable, analytic, eloquent, profound (I’m not necessarily claiming all these qualities). Just like all the painters who may have been a lost link between cubism and abstract expressionism or abstract expressionism and Andy Warhol. Or composers, like the eccentric woman who hitchhikes around Taos in her mumu and straw hat and is occasionally acknowledged for her operas that are locally performed. I once wrote a short story (which sits in my bottom drawer) about her called the “Woman as Artist” (I turned her into a painter). In my story she sits on an old car seat on her back porch with her legs stretched out onto an adjacent chair to rest her varicose veins: “I’ll never be a huge success, honey,” she sighs to the narrator. “It’s not in the cards. Or should I say, it’s not in my blood. I can’t sell myself to the highest bidder to get there, like the cold-blooded ones do. Do you have any idea how many talented people there are out there in the world—painters, musicians, composers, writers, philosophers—living in places just as obscure as this crumbling adobe in El Rancho, who will never, ever see even the modest success that I’ve had in this fucked up society that defines your worth by how much you sell yourself for? Then once you’re sold they have to keep investing in you because so much money is at stake. Doesn’t matter if you’re old, stale, hackneyed and worthless—if some investment banker on the upper West side bought you for thousands of dollars to hang on his wall, by God you better double or triple by the time he’s ready to sell you to an investment banker on the upper East side to hang on his wall. ‘All the world’s a stage and we’re only the players.’”
Maybe some of this is sour grapes. I don’t have the talent that I give my Taos character, and I often lack her equanimity. But I do share her devotion to her old car seat on her back porch where she can see the Sangre de Cristo Mountains across the fields of irrigated pasture that have defined this view for 300 years. We also share a love for our neighbors, whose ancestors have lived here for 300 years. And I appreciate their regard for the work I do to help maintain these pastures and lives. That it is a way of life, not a career, is what I mean by “de-fault.” My friend who is terrified and famous also experiences this way of life, but it is within a different context, with an edge that, at least for me, spoils the quietness, the safety, the sameness. I don’t buy the adage that only things that terrify you are worth doing.
One day my almost grown son calls to ask me what I’m doing. When I tell him I’m working on my book about environmental justice, he says, mom, why don’t you publish your stuff. Ah, hito, if you only knew. But I tell him that I’m going to get down to work and finish up my memoirs of life as a norteño activist, my second novel, and edit my book of short stories so he and his brother can read it all when I’m dead. Mom,
I’m going to publish all if them, he says. Good luck, I tell him, you have my blessing. I won’t be around to be terrified.
Sunday, August 9, 2009
Saturday, August 1, 2009
Health Insurance
Preface to this blog: This posting was written in 2008. In 2009 my partner Mark had an experience with the medical industrial complex, as we now refer to it, which more dramatically reveals that it is irreparably broken, with no hope of repair beyond revolution. Stay tuned for that story.
I was fifty-six when I first got health insurance. Two years later, I’m wondering if it was more of a burden than a benefit. Here’s the story.
I have arthritis: I’ve had it as long as I can remember and in as many places in my body as there are joints. Before Insurance, which I will refer to as BI, I did what I could with over the counter pain relief, an occasional shot of cortisone, slings for my arms to relieve tennis elbow, and hiking poles for the downhill stretches. When I tore my meniscus hiking the Grand Canyon (I probably already had a partial tear due to weak joints caused by disintegrated cartilage) and could barely walk down the stairs, much less squat in the garden, I shopped around for the most affordable orthopedic surgeon, who gave me a discount for cash, and under a county indigent fund got the hospitable bill paid off. The surgery was arthroscopic, and I was hiking the trails again within a few weeks.
So when I actually qualified for insurance, through a new state program that covers the under-employed and self-employed who can’t afford private insurance, I figured I was home free, at least with the stuff that Western doctors are supposed to be able to deal with. I finally had the ugly subcutaneous benign something or other removed from my upper arm, a colonoscopy (ugh!), and a few other check-ups that I was supposed to have before fifty.
My left thumb was already in trouble before I got the insurance, but the bone spur that developed at the base of the joint became increasingly painful. If I accidentally banged it against a wall I almost fainted. So I got a referral from my doctor at the rural public health clinic, which is the only place I’d ever gone to see a doctor (other than the guy who repaired my meniscus) and off I went to the hand specialist in Santa Fe (it wasn’t really “off I went” because it took almost two months to get an appointment). He sent me for specialized x-rays, and another month went by before I got his pronouncement: I had a deformed bone between my thumb and wrist and the treatment is called arthoplasty — as opposed to an arthroscopic — surgery to remove the bad bone and either replace it with a small piece of tendon from my arm, fuse the bones together, or implant an artificial “spacer” between the bones. I opted for the tendon, and he told me I’d have to wear a cast for a month, then go to a removable brace so I could start physical therapy, and be good as new (with maybe a little less strength than before) in three months.
I kept putting off the surgery because my life kept getting in the way (should I not go back east to visit our younger son who was obviously depressed as hell his first semester at the University of Pennsylvania, should I not be able to make pies for Thanksgiving and Christmas, or should I miss cross-country ski season?). But eventually I couldn’t stand the pain, and I had the surgery January 16.
It is now the end of June and these past six months have been some of the most miserable of my life. My hand has not only not healed but has triggered a chain nerve reaction in my arm, shooting pain from my hand up to a frozen shoulder and across my shoulders and even down my back. The surgeon was prepared to recast my hand—“it shouldn’t be hurting like this”— and sent me off for an MRI for my shoulder, where they shove you into this tube that is inches away from your face and tell you to be sure not to move because then you’ll have to start all over. They give you a panic button to push (and many people do panic, you can bet on that) and then the noise begins, the whirring and pounding and whining, despite the ear plugs. I closed my eyes and didn’t move, so it was over in 20 excruciating minutes. When the surgeon saw the MRI he said I had a small tear in my shoulder tendon and some abrasion, but that it really shouldn’t be causing me this much pain, so he sent me to his partner, the shoulder guy. The shoulder guy saw me for ten minutes, max, and said the same thing: these injuries shouldn’t be causing your shoulder to freeze up, which we need to unfreeze. He didn’t even want to look at my hand until I insisted: “That’s Dr. _______’s business.” But then he looked at my hand for a few minutes, asked me some questions, and said, “I’m going to go call Dr. _______. So he spoke with Dr. ________ on the phone, came back into the room and said, “I think you have Reflex Sympathetic Dystrophy.”
I, of course, had no idea what Reflex Sympathetic Dystrophy was, and he didn’t enlighten me, except to say that surgery seemed to have set off some nerve problems in my arm, that he wanted me to get a bone scan for diagnostic validation, and then he’d send me to the pain clinic on the floor below where they’d give me a shot in the neck. “What kind of a shot?” I asked. “A local anesthetic,” he said. “You may have to get it a couple of times but that should do it.” I got him to write down the name of this diagnosis before I left, and I went home.
Notice that he said “A shot in the neck.” What he didn’t tell me was that the treatment he was prescribing is a shot in the spine, that Reflex Sympathetic Dystrophy is one of those autoimmune classifications that doctors dump illnesses into when they can’t really figure out why you’re in so much pain, that there is no definitive diagnosis (not a bone scan or a blood test or anything else), and that there is no effective treatment. I learned all of this on the Internet the next morning, of course. As soon as I saw that RSD, or as it’s also called, Complex Regional Pain Syndrome, has a support group, like Sjogrens (which I already have) and fibromyalgia (which my younger sister has) and that I was consigned to a life of never ending pain and debilitation (as testimonials on the web site declared) I burst into tears.
After weeks of bitching and moaning and wishing that I’d never gotten the insurance and never had the operation, I decided to get a second opinion, which meant I had to be thankful that I could afford to do so—meaning that I had the insurance (fifty per cent of bankruptcies are triggered by medical bills). And I actually found someone who is trying to heal me. He’s a sweet Jewish doctor from New York, which immediately made me feel better, who had me in his office for two hours reading the medical records I’d brought with me from the other orthopods, listening to my story, asking me questions, looking at my whole body, recognizing me as a person with a medical history who might need some holistic treatment and gentle reassurance. He said, “Let’s not assume you have RSD, doctors don’t know everything,” and sent me back to the physical therapist, who is loosening up my arm. He also, without any request on my part, gave me a prescription for Valium, so I could sleep, and asked me if I wanted to try a new drug that might or might not work, to help relieve the pain.
So I took the drug, which does help, I’m loosening up my frozen shoulder with a physical therapist who also told me, “Let’s not go there.” I’m actually managing to fall asleep without the Valium, and the pain is diminished. So while I haven’t “gone there,” to the land of chronic pain and suffering, I still have a ways to go to the place where everyone experiences a little pain and suffering.
Solution: A complete revamping of the health care system, where everyone is covered by government, single pay, comprehensive insurance but also assigned a health care advocate who follows your course of treatment, informs herself about diagnoses and what treatments are necessary, possible side effects of treatments, what alternative treatments are available, etc. This person should be the doctor, but that probably ain’t going to happen, so let’s find someone else and pay them well to do it. The system would end up saving millions of dollars in uncalled for diagnostic tests, treatments, rehabilitations, etc. And patients might feel like human beings again.
I was fifty-six when I first got health insurance. Two years later, I’m wondering if it was more of a burden than a benefit. Here’s the story.
I have arthritis: I’ve had it as long as I can remember and in as many places in my body as there are joints. Before Insurance, which I will refer to as BI, I did what I could with over the counter pain relief, an occasional shot of cortisone, slings for my arms to relieve tennis elbow, and hiking poles for the downhill stretches. When I tore my meniscus hiking the Grand Canyon (I probably already had a partial tear due to weak joints caused by disintegrated cartilage) and could barely walk down the stairs, much less squat in the garden, I shopped around for the most affordable orthopedic surgeon, who gave me a discount for cash, and under a county indigent fund got the hospitable bill paid off. The surgery was arthroscopic, and I was hiking the trails again within a few weeks.
So when I actually qualified for insurance, through a new state program that covers the under-employed and self-employed who can’t afford private insurance, I figured I was home free, at least with the stuff that Western doctors are supposed to be able to deal with. I finally had the ugly subcutaneous benign something or other removed from my upper arm, a colonoscopy (ugh!), and a few other check-ups that I was supposed to have before fifty.
My left thumb was already in trouble before I got the insurance, but the bone spur that developed at the base of the joint became increasingly painful. If I accidentally banged it against a wall I almost fainted. So I got a referral from my doctor at the rural public health clinic, which is the only place I’d ever gone to see a doctor (other than the guy who repaired my meniscus) and off I went to the hand specialist in Santa Fe (it wasn’t really “off I went” because it took almost two months to get an appointment). He sent me for specialized x-rays, and another month went by before I got his pronouncement: I had a deformed bone between my thumb and wrist and the treatment is called arthoplasty — as opposed to an arthroscopic — surgery to remove the bad bone and either replace it with a small piece of tendon from my arm, fuse the bones together, or implant an artificial “spacer” between the bones. I opted for the tendon, and he told me I’d have to wear a cast for a month, then go to a removable brace so I could start physical therapy, and be good as new (with maybe a little less strength than before) in three months.
I kept putting off the surgery because my life kept getting in the way (should I not go back east to visit our younger son who was obviously depressed as hell his first semester at the University of Pennsylvania, should I not be able to make pies for Thanksgiving and Christmas, or should I miss cross-country ski season?). But eventually I couldn’t stand the pain, and I had the surgery January 16.
It is now the end of June and these past six months have been some of the most miserable of my life. My hand has not only not healed but has triggered a chain nerve reaction in my arm, shooting pain from my hand up to a frozen shoulder and across my shoulders and even down my back. The surgeon was prepared to recast my hand—“it shouldn’t be hurting like this”— and sent me off for an MRI for my shoulder, where they shove you into this tube that is inches away from your face and tell you to be sure not to move because then you’ll have to start all over. They give you a panic button to push (and many people do panic, you can bet on that) and then the noise begins, the whirring and pounding and whining, despite the ear plugs. I closed my eyes and didn’t move, so it was over in 20 excruciating minutes. When the surgeon saw the MRI he said I had a small tear in my shoulder tendon and some abrasion, but that it really shouldn’t be causing me this much pain, so he sent me to his partner, the shoulder guy. The shoulder guy saw me for ten minutes, max, and said the same thing: these injuries shouldn’t be causing your shoulder to freeze up, which we need to unfreeze. He didn’t even want to look at my hand until I insisted: “That’s Dr. _______’s business.” But then he looked at my hand for a few minutes, asked me some questions, and said, “I’m going to go call Dr. _______. So he spoke with Dr. ________ on the phone, came back into the room and said, “I think you have Reflex Sympathetic Dystrophy.”
I, of course, had no idea what Reflex Sympathetic Dystrophy was, and he didn’t enlighten me, except to say that surgery seemed to have set off some nerve problems in my arm, that he wanted me to get a bone scan for diagnostic validation, and then he’d send me to the pain clinic on the floor below where they’d give me a shot in the neck. “What kind of a shot?” I asked. “A local anesthetic,” he said. “You may have to get it a couple of times but that should do it.” I got him to write down the name of this diagnosis before I left, and I went home.
Notice that he said “A shot in the neck.” What he didn’t tell me was that the treatment he was prescribing is a shot in the spine, that Reflex Sympathetic Dystrophy is one of those autoimmune classifications that doctors dump illnesses into when they can’t really figure out why you’re in so much pain, that there is no definitive diagnosis (not a bone scan or a blood test or anything else), and that there is no effective treatment. I learned all of this on the Internet the next morning, of course. As soon as I saw that RSD, or as it’s also called, Complex Regional Pain Syndrome, has a support group, like Sjogrens (which I already have) and fibromyalgia (which my younger sister has) and that I was consigned to a life of never ending pain and debilitation (as testimonials on the web site declared) I burst into tears.
After weeks of bitching and moaning and wishing that I’d never gotten the insurance and never had the operation, I decided to get a second opinion, which meant I had to be thankful that I could afford to do so—meaning that I had the insurance (fifty per cent of bankruptcies are triggered by medical bills). And I actually found someone who is trying to heal me. He’s a sweet Jewish doctor from New York, which immediately made me feel better, who had me in his office for two hours reading the medical records I’d brought with me from the other orthopods, listening to my story, asking me questions, looking at my whole body, recognizing me as a person with a medical history who might need some holistic treatment and gentle reassurance. He said, “Let’s not assume you have RSD, doctors don’t know everything,” and sent me back to the physical therapist, who is loosening up my arm. He also, without any request on my part, gave me a prescription for Valium, so I could sleep, and asked me if I wanted to try a new drug that might or might not work, to help relieve the pain.
So I took the drug, which does help, I’m loosening up my frozen shoulder with a physical therapist who also told me, “Let’s not go there.” I’m actually managing to fall asleep without the Valium, and the pain is diminished. So while I haven’t “gone there,” to the land of chronic pain and suffering, I still have a ways to go to the place where everyone experiences a little pain and suffering.
Solution: A complete revamping of the health care system, where everyone is covered by government, single pay, comprehensive insurance but also assigned a health care advocate who follows your course of treatment, informs herself about diagnoses and what treatments are necessary, possible side effects of treatments, what alternative treatments are available, etc. This person should be the doctor, but that probably ain’t going to happen, so let’s find someone else and pay them well to do it. The system would end up saving millions of dollars in uncalled for diagnostic tests, treatments, rehabilitations, etc. And patients might feel like human beings again.
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