Showing posts sorted by date for query Natural history. Sort by relevance Show all posts
Showing posts sorted by date for query Natural history. Sort by relevance Show all posts

Thursday, January 5, 2023

I like playing tour guide

My phone buzzed on New Year's morning while running a race.It turned out that my Florida family was visiting.So I went home and changed my smell and met them in Central Park. Trying to find people on their way to Central Park is kind of tough, and my cousin kept sending me messages That she thought were helpful but not so much."We are heading to Central Park by 5th". Yeah, Central Park has a few miles of Fifth Avenue near it. But I figured out they were near The Zoo they sent me this picture to the right. The description on the picture was "we are at the puppet guy just past the children's zoo". I didn't look very hard at the picture but I knew there's usually a busker just north of the zoo,  in the park. I should have actually looked a little harder at the picture because I could have responded that his name is Ronnie.He staffed the birthday party my kids had when they were in kindergarten at Puppet Works.New York City is a very small town.

Then we gathered up there five kids and headed down to Chinatown.My cousin commented to me that he thought five kids was easy compared to having twins. No, in fact it's the other way around.I had two kids at once, but we had one agenda. We fed them bathed them put them to sleep all the same time. And they kind of entertained each other. His kids all have different agendas. Five agendas. Not so easy.

Anyways, the Florida family wanted to do a museum day.The Museum of Natural History and then next door, The New York Historical Society had a special exhibit on the Jewish Deli. (That exhibit was about as interesting to me as the Harry Potter exhibit would have been. But it gets people to pay the admission fee.)  After I slept in the museum of natural history I really felt no need to go back. But, believe it or not, I've never been to the New York Historical Societies museum.The plan was that the family of seven would meet me at the deli exhibit at 3:00 p.m.knowing they would be late, I got there around 2:30 so I can enjoy the museum.The painting is called nurse Tracy and a better and authorized reproduction can be found here and here. Having spent an inappropriately long time in the hospital this pees really struck a cord with me.She looks like all the nurses who kept me alive. And of course the real model for this works at NYU Langone. 

I've said this before but let me try to put it in other words.I really don't know anything about art, but I have learned that it's not a bad idea to go to museum and look at the stuff.People with a critical eye have determined it's good stuff.Just sit down and try to figure out what's good about it. Sometimes you can find it on your own.



To the right is an image of the Ramones standing in front of a sign that says Gabba Gabba Hey. It's kind of weird to see this in a museum now because based on this photograph I chose how I dressed for about 10 years of my life.



Below is something that doesn't really look like a big deal. At first look it would look like a college diploma but it is actually the actual Pulitzer Prize given to Robert Caro for writing the Power Broker. When I got to the end of that book I remember thinking to myself that this is why books went awards.It was really neat to see it.If my career path years ago would have stayed in academics, this would have been my highest accomplishment. 




Friday, June 23, 2017

I did not write this, but you should read it.

Believe it or not, sometimes I am at a loss for words. I used to see people who are using a cane or walker and I would tell them that I used to use that kind of device and that I hope they got to throw it away like I did. Now I keep those words to myself because many of those people replied that that was a nice thing to say but it's never going to happen. You see, in the world of broken bodies, my condition is the exception. I am slowly getting better. But for most people with neurological conditions their symptoms are worsening over time. So, now when I see someone using assistive device that I used to use, I just keep my mouth shut. I might've been trying to make them feel good, but I don't want to make them feel bad.



I don't want to pretend I know anything about MS. It's just that as far as I know it's something that gets worse over time. So sometimes I see people who outwardly look a little bit like me. Or like I did a few months ago or a few years ago. And it makes me sad to know that while I'm getting better they are trending in the opposite direction.

Please read the essay below. If you read just some of it the beginning is fine. Originally, my daughter gave it to me because it was just one of those practice reading essays that she had to answer questions about in preparing for her standardized tests.


On Being a Cripple

To escape is nothing. Not to escape is nothing.
–Louise Bogan
The other day I was thinking of writing an essay on being a cripple. I was thinking hard in one of the stalls of the women’s room in my office building, as I was shoving my shirt into my jeans and tugging up my zipper. Preoccupied, I flushed, picked up my book bag, took my cane down from the hook, and unlatched the door. So many movements unbalanced me, and as I pulled the door open I fell over backward, landing fully clothed on the toilet seat with my legs splayed in front of me: the old beetle-on-its-back routine. Saturday afternoon, the building deserted, I was free to laugh aloud as I wriggled back to my feet, my voice bouncing off the yellowish tiles from all directions. Had anyone been there with me, I’d have been still and faint and hot with chagrin. I decided that it was high time to write the essay.
First, the matter of semantics. I am a cripple. I choose this word to name me. I choose from among several possibilities, the most common of which are “handicapped” and “disabled.” I made the choice a number of years ago, without thinking, unaware of my motives for doing so. Even now, I’m not sure what those motives are, but I recognize that they are complex and not entirely flattering. People–crippled or not–wince at the word “cripple,” as they do not at “handicapped” or “disabled.” Perhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates /gods /viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger.
But, to be fair to myself, a certain amount of honesty underlies my choice. “Cripple” seems to me a clean word, straightforward and precise. It has an honorable history, having made its first appearance in the Lindisfarne Gospel in the tenth century. As a lover of words, I like the accuracy with which it describes my condition: I have lost the full use of my limbs. “Disabled,” by contrast, suggests any incapacity, physical or mental. And I certainly don’t like “handicapped,” which implies that I have deliberately been put at a disadvantage, by whom I can’t imagine (my God is not a Handicapper General), in order to equalize chances in the great race of life. These words seem to me to be moving away from my condition, to be widening the gap between word and reality. Most remote is the recently coined euphemism “differently abled,” which partakes of the same semantic hopefulness that transformed countries from “undeveloped” to “underdeveloped,” then to “less developed,” and finally to “developing” nations. People have continued to starve in those countries during the shift. Some realities do not obey the dictates of language.
Mine is one of them. Whatever you call me, I remain crippled. But I don’t care what you call me, so long as it isn’t “differently abled,” which strikes me as pure verbal garbage designed, by its ability to describe anyone, to describe no one. I subscribe to George Orwell’s thesis that “the slovenliness of our language makes it easier for us to have foolish thoughts.” And I refuse to participate in the degeneration of the language to the extent that I deny that I have lost anything in the course of this calamitous disease; I refuse to pretend that the only differences between you and me are the various ordinary ones that distinguish any one person from another. But call me “disabled” or “handicapped” if you like. I have long since grown accustomed to them; and if they are vague, at least they hint at the truth. Moreover, I use them myself. Society is no readier to accept crippledness than to accept death, war, sex, sweat, or wrinkles. I would never refer to another person as a cripple. It is the word I use to name only myself.
I haven’t always been crippled, a fact for which I am soundly grateful. To be whole of limb is, I know from experience, infinitely more pleasant and useful than to be crippled; and if that knowledge leaves me open to bitterness at MY loss, the physical soundness I once enjoyed (though I did not enjoy it half enough) is well worth the occasional stab of regret. Though never any good at sports, I was a normally active child and young adult. I climbed trees, played hopscotch, jumped rope, skated, swam, rode my bicycle, sailed. I despised team sports, spending some of the wretchedest afternoons of my life, sweaty and humiliated, behind a field-hockey stick and under a basketball hoop. I tramped alone for miles along the bridle paths that webbed the woods behind the house I grew up in. I swayed through countless dim hours in the arms of one man or another under the scattered shot of light from mirrored balls, and gyrated through countless more as Tab Hunter and Johnny Mathis gave way to the Rolling Stones, Credence Clearwater Revival, Cream. I walked down the aisle. I pushed baby carriages, changed tires in the rain, marched for peace.
When I was twenty-eight I started to trip and drop things. What at first seemed my natural clumsiness soon became too pronounced to shrug off. I consulted a neurologist, who told me that I had a brain tumor. A battery of tests, increasingly disagreeable, revealed no tumor. About a year and a half later I developed a blurred spot in one eye. I had, at last, the episodes “disseminated in space and time” requisite for a diagnosis: multiple sclerosis. I have never been sorry for the doctor’s initial misdiagnosis, however. For almost a week, until the negative results of the tests were in, I thought that I was going to die right away. Every day for the past nearly ten years, then, has been a kind of gift. I accept all gifts.
Multiple sclerosis is a chronic degenerative disease of the central nervous system, in which the myelin that sheathes the nerves is somehow eaten away and sear tissue forms in its place, interrupting the nerves’ signals. During its course, which is unpredictable and uncontrollable, one may lose vision, hearing, speech, the ability to walk, control of bladder and/or bowels, strength in any or all extremities, sensitivity to touch, vibration, and/or pain, potency, coordination of movements– the list of possibilities is lengthy and, yes, horrifying. One may also lose one’s sense of humor. That’s the easiest to lose and the hardest to survive without.
In the past ten years, I have sustained some of these losses. Characteristic of MS are sudden attacks, called exacerbations, followed by remissions, and these I have not had. Instead, my disease has been slowly progressive. My left leg is now so weak that I walk with the aid of a brace and a cane; and for distances I use an Amigo, a variation on the electric wheelchair that looks rather like an electrified kiddie car. I no longer have much use of my left hand. Now my right side is weakening as well. I still have the blurred spot in my right eye. Overall, though, I’ve been lucky so far. My world has, of necessity, been circumscribed by my losses, but the terrain left me has been ample enough for me to continue many of the activities that absorb me: writing, teaching, raising children and cats and plants and snakes, reading, speaking publicly about MS and depression, even playing bridge with people patient and honorable enough to let me scatter cards every which way without sneaking a peek.
Lest I begin to sound like Pollyanna, however, let me say that I don’t like having MS. I hate it. My life holds realities–harsh ones, some of them–that no right-minded human being ought to accept without grumbling. One of them is fatigue. I know of no one with MS who does not complain of bone-weariness; in a disease that presents an astonishing variety of symptoms, fatigue seems to be a common factor. I wake up in the morning feeling the way most people do at the end of a bad day, and I take it from there. As a result, I spend a lot of time in extremis and, impatient with limitation, I tend to ignore my fatigue until my body breaks down in some way and forces rest. Then I miss picnics, dinner parties, poetry readings, the brief visits of old friends from out of town. The offspring of a puritanical tradition of exceptional venerability, I cannot view these lapses without shame. My life often seems a series of small failures to do as I ought.
I lead, on the whole, an ordinary life, probably rather like the one I would have led had I not had MS. I am lucky that my predilections were already solitary, sedentary, and bookish–unlike the world-famous French cellist I have read about, or the young woman I talked with one long afternoon who wanted only to be a jockey. I had just begun graduate school when I found out something was wrong with me, and I have remained, interminably, a graduate student. Perhaps I would not have if I’d thought I had the stamina to return to a full-time job as a technical editor; but I’ve enjoyed my studies.
In addition to studying, I teach writing courses. I also teach medical students how to give neurological examinations. I pick up freelance editing jobs here and there. I have raised a foster son and sent him into the world, where he has made me two grandbabies, and I am still escorting my daughter and son through adolescence. I go to Mass every Saturday. I am a superb, if messy, cook. I am also an enthusiastic laundress, capable of sorting a hamper full of clothes into five subtly differentiated piles, but a terrible housekeeper. I can do italic writing and, in an emergency, bathe an oil-soaked cat. I play a fiendish game of Scrabble. When I have the time and the money, I like to sit on my front steps with my husband, drinking Amaretto and smoking a cigar, as we imagine our counterparts in Leningrad and make sure that the sun gets down once more behind the sharp childish scrawl of the Tucson Mountains.
This lively plenty has its bleak complement, of course, in all the things I can no longer do. I will never run again, except in dreams, and one day I may have to write that I will never walk again. I like to go camping, but I can’t follow George and the children along the trails that wander out of a campsite through the desert or into the mountains. In fact, even on the level I’ve learned never to check the weather or try to hold a coherent conversation: I need all my attention for my wayward feet. Of late, I have begun to catch myself wondering how people can propel themselves without canes. With only one usable hand, I have to select my clothing with care not so much for style as for ease of ingress and egress, and even so, dressing can be laborious. I can no longer do fine stitchery, pick up babies, play the piano, braid my hair. I am immobilized by acute attacks of depression, which may or may not be physiologically related to MS but are certainly its logical concomitant.
These two elements, the plenty and the privation, are never pure, nor are the delight and wretchedness that accompany them. Almost every pickle that I get into as a result of my weakness and clumsiness–and I get into plenty–is funny as well as maddening and sometimes painful. I recall one May afternoon when a friend and I were going out for a drink after finishing up at school. As we were climbing into opposite sides of my car, chatting, I tripped and fell, flat and hard, onto the asphalt parking lot, my abrupt departure interrupting him in mid-sentence. “Where’d you go?” he called as he came around the back of the car to find me hauling myself up by the door frame. “Are you all right?” Yes, I told him, I was fine, just a bit rattly, and we drove off to find a shady patio and some beer. When I got home an hour or so later, my daughter greeted me with “What have you done to yourself?” I looked down. One elbow of my white turtleneck with the green froggies, one knee of my white trousers, one white kneesock were blood-soaked. We peeled off the clothes and inspected the damage, which was nasty enough but not alarming. That part wasn’t funny: The abrasions took a long time to heal, and one got a little infected. Even so, when I think of my friend talking earnestly, suddenly, to the hot thin air while I dropped from his view as though through a trap door, I find the image as silly as something from a Marx Brothers movie.
I may find it easier than other cripples to amuse myself because I live propped by the acceptance and the assistance and, sometimes, the amusement of those around me. Grocery clerks tear my checks out of my checkbook for me, and sales clerks find chairs to put into dressing rooms when I want to try on clothes. The people I work with make sure I teach at times when I am least likely to be fatigued, in places I can get to, with the materials I need. My students, with one anonymous exception (in an end-of-the-semester evaluation), have been unperturbed by my disability. Some even like it. One was immensely cheered by the information that I paint my own fingernails; she decided, she told me, that if I could go to such trouble over fine details, she could keep on writing essays. I suppose I became some sort of bright-fingered muse. She wrote good essays, too.
The most important struts in the framework of my existence, of course, are my husband and children. Dismayingly few marriages survive the MS test, and why should they? Most twenty-two- and nine-teen-year-olds, like George and me, can vow in clear conscience, after a childhood of chicken pox and summer colds, to keep one another in sickness and in health so long as they both shall live. Not many are equipped for catastrophe: the dismay, the depression, the extra work, the boredom that a degenerative disease can insinuate into a relationship. And our society, with its emphasis on fun and its association of fun with physical performance, offers little encouragement for a whole spouse to stay with a crippled partner. Children experience similar stresses when faced with a crippled parent, and they are more helpless, since parents and children can’t usually get divorced. They hate, of course, to be different from their peers, and the child whose mother is tacking down the aisle of a school auditorium packed with proud parents like a Cape Cod dinghy in a stiff breeze jolly well stands out in a crowd. Deprived of legal divorce, the child can at least deny the mother’s disability, even her existence, forgetting to tell her about recitals and PTA meetings, refusing to accompany her to stores or church or the movies, never inviting friends to the house. Many do.
But I’ve been limping along for ten years now, and so far George and the children are still at my left elbow, holding tight. Anne and Matthew vacuum floors and dust furniture and haul trash and rake up dog droppings and button my cuffs and bake lasagna and Toll House cookies with just enough grumbling so I know that they don’t have brain fever. And far from hiding me, they’re forever dragging me by racks of fancy clothes or through teeming school corridors, or welcoming gaggles of friends while I’m wandering through the house in Anne’s filmy pink babydoll pajamas. George generally calls before he brings someone home, but he does just as many dumb thankless chores as the children. And they all yell at me, laugh at some of my jokes, write me funny letters when we’re apart-in short, treat me as an ordinary human being for whom they have some use. I think they like me. Unless they’re faking….
Faking. There’s the rub. Tugging at the fringes of my consciousness always is the terror that people are kind to me only because I’m a cripple. My mother almost shattered me once, with that instinct mothers have–blind, I think, in this case, but unerring nonetheless–for striking blows along the fault-lines of their children’s hearts, by telling me, in an attack on my selfishness, “We all have to make allowances for you, of course, because of the way you are.” From the distance of a couple of years, I have to admit that I haven’t any idea just what she meant, and I’m not sure that she knew either. She was awfully angry. But at the time, as the words thudded home, I felt my worst fear, suddenly realized. I could bear being called selfish: I am. But I couldn’t bear the corroboration that those around me were doing in fact what I’d always suspected them of doing, professing fondness while silently putting up with me because of the way I am. A cripple. I’ve been a little cracked ever since.
Along with this fear that people are secretly accepting shoddy goods comes a relentless pressure to please–to prove myself worth the burdens I impose, I guess, or to build a substantial account of goodwill against which I may write drafts in times of need. Part of the pressure arises from social expectations. In our society, anyone who deviates from the norm had better find some way to compensate. Like fat people, who are expected to be jolly, cripples must bear their lot meekly and cheerfully. A grumpy cripple isn’t playing by the rules. And much of the pressure is self-generated. Early on I vowed that, if I had to have MS, by God I was going to do it well. This is a class act, ladies and gentlemen. No tears, no recriminations, no faint-heartedness.
One way and another, then, I wind up feeling like Tiny Tim, peering over the edge of the table at the Christmas goose, waving my crutch, piping down God’s blessing on us all. Only sometimes I don’t want to play Tiny Tim. I’d rather be Caliban, a most scurvy monster. Fortunately, at home no one much cares whether I’m a good cripple or a bad cripple as long as I make vichyssoise with fair regularity. One evening several years ago, Anne was reading at the dining-room table while I cooked dinner. As I opened a can of tomatoes, the can slipped in my left hand and juice spattered me and the counter with bloody spots. Fatigued and infuriated, I bellowed, “I’m so sick of being crippled!” Anne glanced at me over the top of her book. “There now,” she said, “do you feel better?” “Yes,” I said, “yes, I do.” She went back to her reading. I felt better. That’s about all the attention my scurviness ever gets.
Because I hate being crippled, I sometimes hate myself for being a cripple. Over the years I have come to expect–even accept–attacks of violent self-loathing. Luckily, in general our society no longer connects deformity and disease directly with evil (though a charismatic once told me that I have MS because a devil is in me) and so I’m allowed to move largely at will, even among small children. But I’m not sure that this revision of attitude has been particularly helpful. Physical imperfection, even freed of moral disapprobation, still defies and violates the ideal, especially for women, whose confinement in their bodies as objects of desire is far from over. Each age, of course, has its ideal, and I doubt that ours is any better or worse than any other. Today’s ideal woman, who lives on the glossy pages of dozens of magazines, seems to be between the ages of eighteen and twenty-five; her hair has body, her teeth flash white, her breath smells minty, her underarms are dry; she has a career but is still a fabulous cook, especially of meals that take less than twenty minutes to prepare; she does not ordinarily appear to have a husband or children; she is trim and deeply tanned; she jogs, swims, plays tennis, rides a bicycle, sails, but does not bowl; she travels widely, even to out-of-the-way places like Finland and Samoa, always in the company of the ideal man, who possesses a nearly identical set of characteristics. There are a few exceptions. Though usually white and often blonde, she may be black, Hispanic, Asian, or Native American, so long as she is unusually sleek. She may be old, provided she is selling a laxative or is Lauren Bacall. If she is selling a detergent, she may be married and have a flock of strikingly messy children. But she is never a cripple.
Like many women I know, I have always had an uneasy relationship with my body. I was not a popular child, largely, I think now, because I was peculiar: intelligent, intense, moody, shy, given to unexpected actions and inexplicable notions and emotions. But as I entered adolescence, I believed myself unpopular because I was homely: my breasts too flat, my mouth too wide, my hips too narrow, my clothing never quite right in fit or style. I was not, in fact, particularly ugly, old photographs inform me, though I was well off the ideal; but I carried this sense of self-alienation with me into adulthood, where it regenerated in response to the depredations of MS. Even with my brace I walk with a limp so pronounced that, seeing myself on the videotape of a television program on the disabled, I couldn’t believe that anything but an inchworm could make progress humping along like that. My shoulders droop and my pelvis thrusts forward as I try to balance myself upright, throwing my frame into a bony S. As a result of contractures, one shoulder is higher that the other and I carry one arm bent in front of me, the fingers curled into a claw. My left arm and leg have wasted into pipe-stems, and I try always to keep them covered. When I think about how my body must look to others, especially to men, to whom I have been trained to display myself, I feel ludicrous, even loathsome.
At my age, however, I don’t spend much time thinking about my appearance. The burning egocentricity of adolescence, which assures one that all the world is looking all the time, has passed, thank God, and I’m generally too caught up in what I’m doing to step back, as I used to, and watch myself as though upon a stage. I’m also too old to believe in the accuracy of self-image. I know that I’m not a hideous crone, that in fact, when I’m rested, well dressed, and well made up, I look fine. The self-loathing I feel is neither physically nor intellectually substantial. What I hate is not me but a disease.
I am not a disease.
And a disease is not–at least not single-handedly–going to determine who I am, though at first it seemed to be going to. Adjusting to a chronic incurable illness, I have moved through a process similar to that outlined by Elizabeth Kubler-Ross in On Death and Dying. The major difference–and it is far more significant than most people recognize–is that I can’t be sure of the outcome, as the terminally ill cancer patient can. Research studies indicate that, with proper medical care, I may achieve a “normal” life span. And in our society, with its vision of death as the ultimate evil, worse even than decrepitude, the response to such news is, “Oh well, at least you’re not going to die.” Are there worse things than dying? I think that there may be.
I think of two women I know, both with MS, both enough older than I to have served me as models. One took to her bed several years ago and has been there ever since. Although she can sit in a high-backed wheelchair, because she is incontinent she refuses to go out at all, even though incontinence pants, which are readily available at any pharmacy, could protect her from embarrassment. Instead, she stays at home and insists that her husband, a small quiet man, a retired civil servant, stay there with her except for a quick weekly foray to the supermarket. The other woman, whose illness was diagnosed when she was eighteen, a nursing student engaged to a young doctor, finished her training, married her doctor, accompanied him to Germany when he was in the service, bore three sons and a daughter, now grown and gone. When she can, she travels with her husband; she plays bridge, embroiders, swims regularly; she works, like me, as a symptomatic-patient instructor of medical students in neurology. Guess which woman I hope to be.
At the beginning, I thought about having MS almost incessantly. And because of the unpredictable course of the disease, my thoughts were always terrified. Each night I’d get into bed wondering whether I’d get out again the next morning, whether I’d be able to see, to speak, to hold a pen between my fingers. Knowing that the day might come when I’d be physically incapable of killing myself, I thought perhaps I ought to do so right away, while I still had the strength. Gradually I came to understand that the Nancy who might one day lie inert under a bedsheet, arms and legs paralyzed, unable to feed or bathe herself, unable to reach out for a gun, a bottle of pills, was not the Nancy I was at present, and that I could not presume to make decisions for that future Nancy, who might well not want in the least to die. Now the only provision I’ve made for the future Nancy is that when the time comes–and it is likely to come in the form of pneumonia, friend to the weak and the old–I am not to be treated with machines and medications. If she is unable to communicate by then, I hope she will be satisfied with these terms.
Thinking all the time about having MS grew tiresome and intrusive, especially in the large and tragic mode in which I was accustomed to considering my plight. Months and even years went by without catastrophe (at least without one related to MS), and really I was awfully busy, what with George and children and snakes and students and poems, and I hadn’t the time, let alone the inclination, to devote myself to being a disease. Too, the richer my life became, the funnier it seemed, as though there were some connection between largesse and laughter, and so my tragic stance began to waver until, even with the aid of a brace and a cane, I couldn’t hold it for very long at a time.
After several years I was satisfied with my adjustment. I had suffered my grief and fury and terror, I thought, but now I was at ease with my lot. Then one summer day I set out with George and the children across the desert for a vacation in California. Part way to Yuma I became aware that my right leg felt funny. “I think I’ve had an exacerbation,” I told George. “What shall we do?” he asked. “I think we’d better get the hell to California,” I said, “because I don’t know whether I’ll ever make it again.” So we went on to San Diego and then to Orange, up the Pacific Coast Highway to Santa Cruz, across to Yosemite, down to Sequoia and Joshua Tree, and so back over the desert to home. It was a fine two-week trip, filled with friends and fair weather, and I wouldn’t have missed it for the world, though I did in fact make it back to California two years later. Nor would there have been any point in missing it, since in MS, once the symptoms have appeared, the neurological damage has been done, and there’s no way to predict or prevent that damage.
The incident spoiled my self-satisfaction, however. It renewed my grief and fury and terror, and I learned that one never finishes adjusting to MS. I don’t know now why I thought one would. One does not, after all, finish adjusting to life, and MS is simply a fact of my life–not my favorite fact, of course–but as ordinary as my nose and my tropical fish and my yellow Mazda station wagon. It may at any time get worse, but no amount of worry or anticipation can prepare me for a new loss. My life is a lesson in losses. I learn one at a time.
And I had best be patient in the learning, since I’ll have to do it like it or not. As any rock fan knows, you can’t always get what you want. Particularly when you have MS. You can’t, for example, get cured. In recent years researchers and the organizations that fund research have started to pay MS some attention even though it isn’t fatal; perhaps they have begun to see that life is something other than a quantitative phenomenon, that one may be very much alive for a very long time in a life that isn’t worth living. The researchers have made some progress toward understanding the mechanism of the disease: It may well be an autoimmune reaction triggered by a slow-acting virus. But they are nowhere near its prevention, control, or cure. And most of us want to be cured. Some, unable to accept incurability, grasp at one treatment after another; no matter how bizarre: megavitamin therapy, gluten-free diet, injections of cobra venom, hypothermal suits, lymphocytopharesjs, hyperbaric chambers. Many treatments are probably harmless enough, but none are curative.
The absence of a cure often makes MS patients bitter toward their doctors. Doctors are, after all, the priests of modern society, the new shamans, whose business is to heal, and many an MS patient roves from one to another, searching for the “good” doctor who will make him well. Doctors too think of themselves as healers, and for this reason many have trouble dealing with MS patients, whose disease in its intransigence defeats their aims and mocks their skills. Too few doctors, it is true, treat their patients as whole human beings, but the reverse is also true. I have always tried to be gentle with my doctors, who often have more at stake in terms of ego than I do. I may be frustrated, maddened, depressed by the incurability of my disease, but I am not diminished by it, and they are. When I push myself up from my seat in the waiting room and stumble toward them, I incarnate the limitation of their powers. The least I can do is refuse to press on their tenderest spots.
This gentleness is part of the reason that I’m not sorry to be a cripple. I didn’t have it before. Perhaps I’d have developed it anyway–how could I know such a thing?–and I wish I had more of it, but I’m glad of what I have. It has opened and enriched my life enormously. This sense that my frailty and need must be mirrored in others, that in searching for and shaping a stable core in a life wrenched by change and loss, change and loss, I must recognize the same process, under individual conditions, in the lives around me. I do not deprecate such knowledge, however I’ve come by it.
All the same, if a cure were found, would I take it? In a minute. I may be a cripple, but I’m only occasionally a loony and never a saint. Anyway, in my brand of theology God doesn’t give bonus points for a limp. I’d take a cure; I just don’t need one. A friend who also has MS startled me once by asking, “Do you ever say to yourself, ‘Why me, Lord?”’ “No, Michael, I don’t,” I told him, “because whenever I try, the only response I can think of is 'Why not?”’ If I could make a cosmic deal, whom would I put in my place? What in my life would I give up in exchange for sound limbs and a thrilling rush of energy? No one. Nothing. I might as well do the job myself. Now that I’m getting the hang of it.
Copyright 1986. Arizona Board of Regents.
All Rights Reserved.

Sunday, April 5, 2015

I know I did one thing right

I'm not saying I don't do a lot of things right but this one I know I got right.

Daddy daycamp began almost as soon as my kids were born. My wife was working from home then she went back to school.... It was my job to keep the kids occupied and I loved it. I waited until they were eight to quit my full-time job, I should've done it the day they were born. But that's another story

I embraced being a dad by embracing New York City.  Every day with my kids was like a new day in a new city I just acted like a tourist and had fun.  We became familiar with all the iconic institutions that make New York City great.  We were regular at the American Museum of Natural History, the New York Hall of Science, and all the institutions of the New York Zoological Society.  I realized that these places were just for staring at cages or artifacts.  They were places to work or volunteer.

It occurred to me that when I was a young teenager my summer opportunities were limited to two different kinds of things.  Hanging out at the beach/pool club or getting a crappy job.  I did a little of both until I was about 19 or 20.  Hanging out was not good for much.  I had jobs fast food restaurants and retail establishments.  Looking back those jobs were worse for me than doing nothing.  If your first job is a fast food restaurant you learn to hate going to work, you hate your boss and you hate the customers.

When my kids was still in diapers I noticed the youth guides at the Prospect Park Zoo.  They were cheerful kids who would hang around exhibits and help engage my toddlers.  I asked one of them how young they could be to start volunteering there.  The kids said 14, then I knew where my son would be in 10 years.  You see, as far as I'm concerned when it comes to domesticated animals in the cage that out of the cage it's just vermin.  We did the gerbil thing, we also had a few turtles and a handful of fish.  As far as I was concerned it would've been much more efficient and less smelly if we would've just flushed money down the toilet.

Someday, he might narrate the show
Last winter, I didn't push my son very hard... I gently let him know that he was now old enough to be a Discovery Guide at the Prospect Park zoo.  My prodding was very gentle.  He was almost 14 and I knew I pushed him too hard he would push back.  (Because I remember when I was 14 my parents would've told me to be careful on train tracks I would've been hit by a train.)  I just sent him a link and let them check it out himself.  I would've gone with him to the orientation but I was in intensive care.  So maybe the fact that he went by himself made it work out all for the better.  When he came to visit me in the hospital he told me about the program.  I will always remember his exact words.  "Dad, it's a tiered program, if I stay for all three years they might let me narrate the sea lion show. "  Bingo, I knew my son was not to make minimum wage at a fast food restaurant.  He was going to make friends and gain experience at the zoo.

He was there to three days a week all summer.  And I spent the whole summer in the hospital.  When the summer ended he switched to a weekend program and was there every Saturday.  Last week I got a new electric chair.  Being pushed around the zoo wasn't that fun but it was nice when I got to drive myself there.  This Sunday I son took a busmens's holiday and gave me a tour of The Zoo.
Apparently, this goat is called Ringo

With pride he told me the species name of most every animal in the zoo he also told me they were called.  He told me which sheep were friendly and which ones were grumpy.  He introduced me to all the other volunteers, and I got to meet his boss.

There was a lot of good feelings going around.  My son was proud of himself and I was pretty proud of him to.  And in a little way I was pretty pleased with myself for steering him in that direction.  I was also very happy to be out of the house in my new Electric Chair



Thursday, May 2, 2013

Guest Blogger: My daughters research paper.


Pickles


In the mood for a pickle juice snow cone? How about a pickle candy cane during the holiday season? Or even some pickle flavored chewing gum or mints? Well, this tangy, salty, sweet, and savory snack is so beloved by us, that we have made a ton of unbelievably wonderful, flavorful, and sensational kinds and variations of it that tickle our taste buds. Pickles have been in some of the most important events of history, including Shakespearian plays, biblical texts, and many important historical figures’ lives (including Amerigo Vespucci, Christopher Columbus, and NapolĂ©on Bonaparte). Pickles are often considered the work of five star chef and artisans, but not anymore! Read on to find out how to safely make and preserve pickles in five different ways.

When making fermented pickles it is important to know about lactic acid and salt. The first thing you need to know about is lactic acid. When produce is actively fermenting, salt turns natural sugars into lactic acid. Lactic acid gives fermented pickles their characteristic tang that everybody loves. The second thing that you need to know about is salt. Salt is very important during fermentation. If there is too much salt, the sugars will be overpowered and lactic acid won’t have a chance to be created. However, if there is too little salt, the sugar will overpower it. That will make too much lactic acid, making the pickles disgustingly sour. Also, it is important to make sure that you use salt specifically labeled for pickle making. Regular salt usually has iodine, that will darken your pickles. In addition, it has anti-clumping agents that will cloud your brine. Therefore, lactic acid and salt are very important when making fermented pickles.

There are some precautions that you should take in order to successfully make your fermented pickles. One of them is to keep your pickles under the brine. Oxygen will spoil your pickles, so if you keep them under the brine, no excess oxygen will touch them. Another one is to keep your pickles at the correct temperature. The ideal fermenting temperature is between 65°F - 85°F. This is important because if the temperature is too high, the pickles will ferment too fast, making them too sour to eat. If they are too cold, they will not ferment at all. Finally, you should check on your pickles daily, just in case anything has gone wrong (i.e. they are floating above the brine). In conclusion, before fermenting produce, you should know some tips for making delicious fermented pickles.

When making quick pickles, fruit pickles, relishes, and chutneys you need to know the similarities and difference between them. For example, the similarities and differences between fruit pickles and quick pickles is that fruit pickles are a type of quick pickle. They both use vinegar of at least 5% acidity instead of lactic acid. They do not undergo the long fermentation process, hence the name ‘quick’ pickle. However, fruit pickles generally are topped with a boiling vinegar sugar mixture, giving them a much sweeter taste then regular quick pickles. Another example is that a chutney is a type of relish. To make relish, you chop produce into small pieces and cook them down in vinegar. You do this with chutneys as well, but they have more complex flavors. Relishes are usually a one note vinegary/salty condiment, in contrast, chutneys are tangier, spicier, sweeter, and more savory then relishes. Therefore, quick pickles, fruit pickles, relishes, and chutneys are all a type of quick pickle, but are very different from one another in taste.

Once you have made your pickles, you need to know how to preserve them. When preserving pickles, you need to know the difference between pressure canning and a hot water bath. Pressure canners are good for preserving low acid foods, like beans, and non-pickled vegetables. On the other hand, preserving using a hot water bath is a great technique for preserving high acid foods, like fruit, pickles, and vinegar based sauces (i.e. tomato sauce). You should always preserve your pickles with a hot water bath, unless the recipe specifically says otherwise. You also need to know the steps to preserving food in a hot water bath. The first thing you do is place your filled pickle jars in a pot filled with hot tap water with a rack on the bottom. Then, you turn on the heat and start the timer when your water starts to boil. The heat from the boiling water makes the jars expand a very little bit , pushing out all the air. Additionally, the heat kills harmful bacteria. Finally, after about 10 minutes, you can lift your jars out of the boiling water with jar lifters. As the jars cool, they retighten, creating a vacuum seal that will keep your pickles fresh for at least a year. As you can see, these are the steps to preserving pickles using a hot water bath.

There are a lot of great tips and tricks to ensure that your pickles are made safely. For instance, you need to know when your pickles have spoiled. When pickles are slimy, smell bad, have a cloudy brine, or are pink they have spoiled. If your pickles are extra bitter, they are not spoiled, and are perfectly safe to eat. Although, if you want your pickles to be less bitter, don’t dilute the vinegar!! This will throw off your recipe’s exact ratio! You can add more sugar or other sweeteners (i.e. honey) to solve the problem. Also, unless your pickles are actively fermenting, you should also throw them away if any mold is growing on your them. However, if your pickles are actively fermenting, any mold you see forming on the brine, it can be removed with a spoon. Therefore, you pickles will be safe to eat if they have the right qualities.

Also, you need to know how to safely preserve pickles. To do this, you need to thoroughly sanitize your jars. When sanitizing your jars, you need to scrub them inside and out, and then boil them for 10 minutes to kill any bacteria and germs. Also, you need to make sure your jars don’t break. There are three reasons a jar could break: thermal shock, pressure, and impact. Thermal shock is when jars break because of dramatic changes in temperature. This will happen if you put cold jars in boiling water, or if there is no rack on the bottom of your pot, and the jars are right on top of the flame. When jars break because of pressure, it’s usually because there wasn’t enough head space in the jars, or the screw bands were screwed on too tightly. This makes it so that no air can escape the jar when it is boiling. Impact will break a jar is if it is swung around, thrown into something, dropped, or otherwise damaged. Therefore, there are many steps to safely preserve pickles.

I hope I have renewed your undying love for the humble yet complex flavor of pickles by teaching you to preserve and safely make pickles in five different ways. Now that you know how to ferment, brine, and preserve anything from cucumbers to lemons, apples to beets, and even shrimp, what’s stopping you! Grab some mason jars and a couple of ingredients, and get pickling!

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That is the paper.but it also included a shopping trip to the Brooklyn Brine Co.  When you are in 7th grade and let the owner of a pickle factory know you are doing research on pickles you get a tour.


Thursday, April 11, 2013

Fun with Google Streetview

I think the Google Car caught a diaper changing moment.  Check out the Streetview.

44 W 81st St.  Across the street from the American Museum of Natural History.


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Tuesday, April 9, 2013

It's a trade off.

I do actually leave Brooklyn.  Sometimes I actually got out of NYC.  I do see how other people live. They have bigger houses that cost less.  They have things called lawns and backyards.  They don't have to move their car just so the street might get cleaned.  Their kids go to schools with actual athletic facilities.  They have community pools that you actually want to spend the day at.   Yea, there are pluses that I am missing out on.

Today I did not miss them

Today I chaperoned another class trip.  This was a great trip.  My kids are finishing up their study of geology, specifically how glaciers left their mark on The Earth.  So on this first wonderfully warm day of 2013 (up to 82 degrees) the class walked out of their school building and went down the staircase on the corner and took the B train to 81st St.  30 minutes later we were in Central Park.

This Central Park

Just to look at rocks.


Billions of people live their entire lives without getting to Central Park and my kids do it on a whim just to look at rocks.


I learned something too.
























I always thought these lines were caused by the glacier.  Notsomuch.  They are from the way the rock folded when it was being created, deep underground.




These grooves were scratched by the glacier.  The kids used compasses to see that all those lines faced the same way.

all the groves on all the rocks in Central Park are aligned North - South. 











The kids also observed that this stone is a glacial erratic.  Eleven year olds love to say that.







The kids had their lunch on the steps of the American Museum of Natural History. (That happens to be the San Remo behind the kids, It is where they filmed Ghostbusters)


Since they were studying the earth and still had an hour to kill.  We actually went into the museum.

and back to school by 1:30.

Yea, I am happy to be raising City Kids.



Hey, while researching this blog post I played with Google Street View.  I think the Google Car caught a diaper changing moment.  Check out the Streetview.



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View Larger Map

How is that for my 1,000th post?

Friday, April 5, 2013

We'er Back, ya'all.

As described earlier, we took a Spring Break Road Trip.

It Atlanta we visited the Georgia Aquarium, the largest indoor aquarium in the world.  It was worth the trip.  It looked like most of the other families made a shorter trip.  It was here that I noticed that these southern families were not like mine; They were younger.  People that I thought were big brothers or sisters were actually parents. Maybe some of them should have read the sign to the left.



It was kinda like a reunion because this beluga is from The Coney Island Aquarium.  She was doing a flip for us.


The main attraction at this aquarium was the dolphin show.  "Show" is the operative word here. According to About.com "The newest residents at the Georgia Aquarium are 11 Atlantic bottlenose dolphins. Unlike most of the sea creatures at the Aquarium, the dolphins will not be on display except on special occasions. Instead, they will be part of a Broadway-quality show called Dolphin Tales." Holy shit, was this a show. But not the Broadway I grew up with, this was the new Disnyfied Broadway.  The most amusing part of the show for my kids was that they got to watch me squirm in pain as I looked at our tickets to see how much we paid to see this crap.  Lots of bad dancing and some lip syncing and no science or anything educational at all.

We did some research and found that there is a restaurant in Atlanta.  Flip Burger is owned by one of the competitors form one of them Food Network Shows. The drive there was cool too.  It I think we drove through a neighborhood called "The Park Slope of Georgia"  Eating there was like eating in Willimsburg because nobody talked like a New Yorker expect that when we looked out the window we saw sky as opposed to another building or a bus..
We went back to our hotel and next door was the Museum of Coca Cola.  I could not imagine paying money to see a collection of soda related products.  We looked at it after dinner and it was closed anyway. They do make sure you don't bring you hand gun in with you.  Below is a photo of my son and the man who invented Coke.
17 spoons of sugar.
Then we drove on to New Orleans.  That city was mostly about eating.  Our first stop was the Cafe Du Monde for, zeppoles, I mean beignets.  If they were zeppoles we would be eating them outside in the streets of Little Italy. Beignets are breakfast food.




We wandered the streets of the French Quarter and it reminded me of pre-Giuliani Times Square, but wilt slightly less porn and the drinks had more artificial colors.  I had one meal that stood out as special.  We randomally walked into Sylvain's on Chartres Street.  The service was authentically friendly and everyone liked their dinner.  I actually ordered a food that I thought was extinct. As you know I grew up in Sheepshead Bay.  The bay was named after the sheepshead fish, which has long disappeared from Mid-Atlantic waters.  I learned last week that it is common in the Gulf of Mexico.  It made for good eating.

Thanks VeronicaG at Virtual Tourist
We happened to wander into the Palace Cafe just for dessert.  Little did we know that they had a special place for people to sit who just wanted dessert.  They have a Dessert Bar; 8 or 9 stools facing a window into the dessert station in their kitchen.  We did not have to look at a menu, we got to see what was being made.  But we had our's prepared at our table.  Bananas Foster. We happened to be in the place were Mr Foster ordered it every night.

Do you see the window in the back.  That is where we sat, looking into the kitchen.  Seriously, I bet an entire meal at that place would have been great.



If the crusty kids were a bit nicer they
 would get more drugs.
NOLA (as it is spelled on the t-shirts) is also a cool city to explore.  Like New York it has it's "element".   We have many types of people living in occupying the streets and other public places..  We have the homeless who find that the subway platform is safer than the shelter and the mentally ill who are Lost.  We also have crusties. (hippies who choose to beg and live in the streets)  Even though the outskirts of NOLA were still devastated by hurricane damage we did not see any evidence of it's human suffering in the French Quarter.  Just a lot of fools that gravitated towards the fact that public intoxication is legal and acceptable in New Orleans. Those days are behind me.  One can drink in public as long as it is not in glass.  We had to climb over a pile of them to get to the Mississippi River.





We also took some official tours.  On our fist full day in New Orleans we took a Swamp Tour.  It was fun for the whole family.

We took a flat bottomed boat into the swamp.



















and we did see an alligator.  Our guide said they were just coming out of brumation.  Their metabolism was still slow so they were not so hungry.  Our guide said they can't resist a marshmallow because they think they are eggs. I like eggs but think marshmallows are junk.  Does that make me an alligator?

The boat tour was definitely great.  but we choose the optional bus ride to the swamp, thinking that that ride would be somewhat touristy.  Notsomuch.  It was just a bus ride and it cost as much as the boat tour.  We could have save $100 and driven.  Afterward we might have taken a detour and had some real cajun cooking.

We also got to see some of the destruction left by Katrina.  I made a point of NOT asking any of the locals about the hurricanes.  I know I don't like it when tourists ask me about "9-11"





The next day the boys and girls split up for different tours.  The girls went on a buggy ride pulled by a mule.  They got an interesting tour of the city and they got off and entered one of New Orleans' above ground cemeteries.  There they leaned that Nicholas Cage has been preoccupied with New Orleans.  He moved into the French Quarter but the locals would not accept him till he bought a grave site.  There it is to the left.  The locals think it is ugly.  Later that night we saw Nick Cage's house.  (Did you know that Nicholas' real last name is Coppola and that he is 25 years younger than is less hansom brother Francis.)



We were also just a short drive to the Gulf of Mexico.  Didn't go there either.  We see the ocean all the time.  Why go out of our way to see a gulf.













The boy and I got in the car and drove to Fulsom La. to visit the Global Wildlife Center.  For me the coolest part of this mini road trip was getting there.  We got to drive across the Lake Pontchartrain Causeway.  The boy got to sit in the front seat and take this photo.

I was actually a little disappointed with the Wildlife Center.  Or maybe I should just say frustrated.  For the first time in a few days we left the world of tourism and were experiencing life as locals do.  I forgot it was Spring Break.  The place was infested with campers and piles of kids supervised by not enough grown ups.

The main activity there was to ride in a wagon into the animals habitat and feed them.  We did not know about the feeding part.  At most of the zoos I have been to you can put a quarter in a gum ball machine and get a handful of animal food.  Here families drooped $30 on a 5 gallon bucket of food.  Then the kids proceeded to through it at the animals.


 It was not a very natural setting for these beasts.  Most of them were quite overfed.
In fact our guide told us that some of the animals were not put there on purpose.  The ducks just flew in and ate so much that they got to fat to leave.

This place seamed to me to be a real life animal version of  Wall-E.  Not the cute robot love story part, but the part about the fact that people got so used to having food shoved down their throats that they could not even get up and get it if they tried.

We also took the Haunted History Tour.  I don't think I would have been uninterested in anything on this tour even if I was not exhausted.  It is a week later and I don't even remember anything.  But I do think it was cool that we saw Touchdown Jesus.  Our guide said it was older than the one in Notre Dame.  Like I knew what he was talking about.  But I took a photo anyway.

Little did I know that we were staying a few block from the actual place that my guitar hero died.  Johnny Thunders overdosed at the Saint Peter Guest House, just a few short blocks from where we were staying.  Maybe I can organize a tour here in NYC  Rock Stars seam to come here to crash and burn..  We will walk by all the places where rock stars died.  Hey, look, it kinda exists already.


On the drive home we were halfway through Tennessee we looked ahead and realized that Bristol looked like a good place to stop. We took out the smart phone got a good deal in a hotel.  Our suite was bigger than my first apartment.  Seriously, in Park Slope it would have been worth at least $500,000, $750,000 with a doorman.  Well that was for the perfectly adequate Hampton Inn - Bristol. 

On the way to the exit in Bristol we saw a billboard for Bristol Caverns.  Hey, we only had to dive 600 more miles to get home, so why don't we go there in the morning.  It was not a big time killer and we got to dive on State Street. The Eastbound side was in Tennessee and the Westbound side was in Virginia, cool!

Anyway we had a very nice 30 minute tour of the Caverns.  A little history, a little science and the guide let my son hold the flashlight.  Very nice and not far from the Route 81.




And then I got a spot right in front of my house.



What more could I ask.



This is not me

This is not me
Not me.

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