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Thursday, July 11, 2024

Happy Disability Pride Mouth



This morning was the kickoff celebration for disability pride month at
Manhattan
Borough Hall
Brooklyn Borough Hall. I was asked to speak. Strike that, I was honored to be asked to speak. Apartments in all sorts of other things I've given testimony and I just stand up and start talking. Today actually put some notes together. Below are my notes I think I stuck to them.

just updating this post with a picture of me spontaneously being asked to speak at Manhattan Borough Hall

Brooklyn
Borough Hall





I wasn't always like this. Anyone can say that at any time but I had a significant change in my life 10 years ago. 10 years ago, everything changed.


10 years 2 months and 3 days agoI walked into the hospital. When I walked in I had no name for prideI was an upper middle class straight white guy.Let me rephrase that I was an upper middle class straight not yet disabled white guy. 


Until then I always thought pride was for other peopleI didn't need it because I had all my privilege I just thought of myself as an ally and didn't even know what that meant


I stumbled into the hospital because I was developing weakness in my arms and legsI was diagnosed with Guillain-Barre syndrome and Didn't come home  for 135 days. I came home because I was able to transfer myself with the help of only one person They said I'd be fine in a year. They were wrong Because they Meant that I'd be physically fine in a year. Yeah, they were right. I'm fine


I don't think I really started thinking about disability pride until a couple of years agoI just started doing the things I used to do as an able-bodied person. But then I realized I wasn't an able body person anymore and i  wasn't sick. I was a person with a disabilityI had to embrace that and move on with my life.I couldn't be ashamed of myself.I wasn't thinking about pride specifically. But I was thinking about the opposite. Shame. I wasn't going to have any of that


 And then two things happened. 


I saw the movie Crip Camp And went to other films at the real abilities festival. And read Nadina's book and Judy's book and Dick Traum’s book


I also broke through the barrier of complaining about how I was treated as a person with a disability to becoming an advocate for people with disabilities.  And I started hanging out with people like Jean and Kathy and Joe And Chris and Q.


The words disability and shame had nothing to do with each other.When I leave my house I have to wear ankle foot orthotics.  Otherwise I'll turn my ankle and trip over my own feet.

Some people wear them under their pants. That's their prerogative. I choose them to wear on the outsideI and put blinky stickers on them.I'm not ashamed of them.They help me walk just like my eyeglasses help me see and just like someone's car helps them get from one place to another. Nothing to be ashamed of… People that have shame don't get together with each otherThey live isolated lives.Unproductive unhappy lives. Eventually they might make it to the Texas state house. But I'm so happy I live in Brooklyn so I can make this speech in Brooklyn Borough Hall. With pride.

… 





Tuesday, September 11, 2018

September 11, 2001.

It was a Tuesday.  Most people are forgetting it was election day here in NYC.  It would be easy to forget even if it were not canceled  It was a primary that everyone knew was gonna result in a runoff for Mayor.  Giuliani (thank God) had reached his term limit so Bloomberg and Wiener were fighting it out.  Isn't it funny to look back.....  Bloomberg won and proceeded to crown himself King and extend his term, a thing Giuliani would have liked in 2001.  And where is Wiener now?  Hiding somewhere because he showed his wiener on twitter.  I have just been informed that the 2001 Democratic Primary for the Mayor of NYC was a fight between Mark Green and Fernando Ferrer.   Wiener ran for Mayor in 2005.  Bloomberg was a Repubican in 2001.  So I got everything totally effed up.

But I digress.....

My polling place was (as usual) chaotic. I did not know it then but it was the second of three places I would be assigned to vote without actually changing my address.  I think they divided up the neighborhood into voting sectors before they put two large apartment building on my block ....  in 1916. That year they assigned me to vote in PS 321.  It didn't even occur to me in 2001 that from 2005 to 2011 that would be my kids school...  That I would go on to teach an after school class in that gym.   My kids were babies,  I was not even thinking about kindergarten.

So voting always meant long lines and friendly interactions with my neighbors.  I remember starting up some friendly banter with the man next to me on line.  A well dressed, really tall African-American who said "You think you got a problem, I am a Republican.  I'll bet they don't even have my ballot up there."  A Republican primary in NYC?  Who ever heard of such a thing??

So I cast my vote and randomly chose a direction to get to the subway to work.

I will not talk about the rest of September 11, 2001.  I am sure that millions of people are ready to share their stories with the world.  I am not even ready to share that day with my children.  I will just say that I was not a hero nor did I attend any funerals.  But still my hands are trembling now.

So, about 9  years later I am chaperoning a class trip to Plymouth Church. Sitting next to me is my friend Ino.  He is one of the other Dads in the neighborhood who has the luxury of getting to go on his children's class trips.

When our tour ends our wonderful guide took questions.  After all the kids got their questions answered Ino raises his hand and asks (Is this really a question?,) "Wasn't Lincoln a Republican, how come everyone forgets that it was a Republican who freed the slaves?"

I punched him in the ribs and told him to shut up.

Then I realized that I have know him since before our children started kindergarten together.

Sometimes, just sometimes I like to think of September 11, 2001 as the day I made a Republican friend.

I hope I am not being selfish.




P.S.: This is a story that starts like mine

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, May 10, 2015

Back to work!

Attention paranoid people and any investigators from a company that's not giving me any money anyway.  I am not working.  Nobody's paying me I'm not receiving any compensation.

A little over seven years ago my wife and I did the math and we realized we can still pay our bills if I left my dead-end job.  It was getting kind of ridiculous to make not so much money just to take it home and give it to someone to watch my children.  I should've done it the day they were born but I waited till they were eight.
Getting 10,000 cups filled at 5 am

I never really thought about labels but I became a stay at home dad.  I was even interviewed for a few times be people who like talking about labels.  I just googled myself and found this very inaccurate article.  and here is an accurate quote that I don't remember giving, A Japanese reporter took me out to lunch because there is no word for stay-at-home dad in Japan.

Watching the Marathon in my rearview mirror
But I wasn't a stay at home dad for long.  I really enjoyed filling up my date with volunteering.  I really enjoyed chaperoning class trips. But I drew the line when the principal asked me to chaperone the trip that my kids weren't even going on.  I also would just hang out in school to be an extra adult in the school yard during recess.  

I also started helping out a lot more with my running club.  I started taking the lead in organizing races.  I found that the only thing more fun than running a race was running a race, was organizing a race.  Since I had some time on my hands and a medium amount of organizational skills I took leadership of the summer evening race series that had usually 25 or 50 people running and I brought it up to 200 people.  I gave it a slogan.  "Tell your friends but tell them not to tell their friends, we don't want this getting too big."  This week I helped design the new course for this race.  Were not making the race bigger for the sake of making it bigger but everyone who comes is good I have a really good time.

Then something unexpected happened.  My phone rang and two different guys called me with in a few months and said," I hear you know how to organize races that make money, can we have lunch?"  Yeah, people wanted to pay me to do what I was doing for free and really enjoying.  This sounded fun.
The cameras love me

I really really enjoyed my job.  So many times I would pause and just look at the sky and say "Damm, I'm getting paid to do this".  What could be more fun than spending a weekday in a quiet park with a bicycle and figuring out where the starting line and.finish line should be.  I would get to decide where the best place would be to have the post race party.  And then be back there a week later and seeing people enjoying themselves there.  On more than a few occasions I would set up the while markers before the race and then get back to the starting line just in time to pick up a bullhorn and say things like, "don't bother avoiding the first puddle because you can avoid the next five."

I once helped organize a race on Governors Island, right next to the Statue of Liberty.   After being lead bike and then riding the course for two or three more times to make sure everyone found their way back to the finish I remember taking a one minute break and getting off my bike and just looking at the Statue of Liberty and appreciating the fact that I was getting paid at that very moment.  The staff all came over on an early ferry and we got to watch the sunrise from the boat.  But at the end of the event I didn't want to go back to Manhattan with my bike, so I took the Brooklyn ferry.  Before I went home I bought a chicken and rice from a street guy and then took a nap under a tree.  When I woke up there was a whole family who had just run the race a few feet away and the mom looked over at me and said," I hope my kids didn't disturb you know how hard you work today."  I felt famous.

Back about the time I started getting paid to help with races two people who I knew because their kids were on the same track team with my kids will organizing a race to raise money for the local PTAs.  The event was small and the race management was kind of a mess.  So I said to them I don't how much are paying that guy to organize your race but I think I can do a better job and I'll do it for free. "You're hired.",  Said my friend who I didn't know at the time was my City Councilman. 

This is fun
 I'm really proud of the work that I've done and help bring this race from something small the something that helped raise a lot of money for a lot of schools.  I'm also really happy to see people having a good time at this race.  That means a lot to me.  Last year I missed it because I was in intensive care.  Last week I did something I hadn't done any year.  I got in a car so I can go to a planning meeting.  This morning I got to that race.   It felt really good to be out there again.  Organizing volunteers and having them place cones and just the right places so that our participants (kids) didn't step into an active bike lane.

I'm feeling pretty good right now.  I think it's because I like being thanked for the help I do as opposed to thinking people for helping me.


I can still help





Tuesday, October 15, 2013

in loco parentis

first...  Many of my blog posts are offensive.  I really hope nobody takes this the wrong way.

4 and 3 and 2 jobs ago I worked as a school administrator. When I started out I was in my early 20s and my students were just about the same age.  I also went from being a graduate student with a part time job as an administrator to an administrator who was a part time graduate student.  It was a little weird.  But my supervise told me a Latin phrase "In loco parentis", In place of parents.  I had to come to terms with the fact that parents sent their kids to school and they expected someone to watch out for them.

I really didn't do that.  I did not go to work and watch out for the kids.  I did what I could to cover my ass.  I made my boss look good when it worked for me.  But for 20 years I did not act "in place of parents".

But then I stopped working it a school and started volunteering in my kids school a lot.  A LOT.  I chaperoned a lot of class trips and I helped out a recess on a regular basis.  I truly internalized the phrase In loco parentis.  For whatever reason, their parents were not on the trip, but I was.  I help them up when they fell and wiped away their tears.  I broke up fights and made them realize they were friends.  I cleaned them up when they got bus sick and bought them lunch when they forgot theirs.  They were not my kids but I was there and their parents were not.  I don't know how far I would have gone for any of the kids I was chaperoning.  I probably would have done whatever I would have done for my own child.

and then this happened.

Last Tuesday evening my son came back from Prospect Park and said there was a "crime scene" on Prospect Park West.  I didn't give it much thought till after dinner when I saw this on the Park Slope Stoop
POSTED 5:56pm: At about 5:15pm on Tuesday, a young boy was hit by a car on Prospect Park West at 3rd Street. According to the FDNY, they received a call about a 12-year-old boy being struck by a car, but they say the child was transported by Hatzolah, so they could not provide info on the boy’s condition, though there are reports on Twitter about serious injuries. There are also reports that the NYPD crash investigators have been requested to the scene.
So I went to bed knowing that my son was not making anything up.

In the morning I look at the update and it says this.

UPDATE 11:45pm: We are sorry to report that the NYPD has confirmed what a neighbor shared in the comments. The young boy passed away due to injuries sustained in the incident.
A website announcing Samuel’s — called Sammy — bar mitzvah notes that he was preparing to celebrate the big occasion in just over a month from now at Kolot Chayeinu here in Park Slope...................
When I click on the word bar mitzvah I instantly see this.

I can't breath.  Sammy was in and out of my kids' classes from kindergarten to 5th grade.  They were never best friends but I would not have minded if they were.  He was a good kid.  A really good kid.

I specifically recalled watching him play soccer during recess.  My daughter waked by and did not look his way.  I remember thinking that it would be ok if she looked his way in a few years.


I woke up early the morning of the funeral.  How could I go?  I would be any use to anyone.  I was already crying at 5:30 in the morning.  I turned to Facebook.


He was in and out of my kids' classes from kindergarten to 5th Grade. I can't count how may class trips I chaperoned with him.
But, he was not my kid, or even my their best friend. I hardly knew his parents.
So if I am crying now, am I supposed to be strong later at the funeral?
  • BB So so sorry Michael. The funeral will be a nightmare. You won't be strong. That's ok.
    PP Being strong means you will cry.
  • SL There's no way not to cry. A few years back when one of my students was hit by a truck, and died a bit later, I couldn't stop. It's about the loss, the senselessness, the tragic moments that happen and the moments you feel and know that his family will never share again..My thoughts are with all of you today.
  • DBG I don't think anyone is going to be strong at the funeral. We can lean on each other. We'll be there
  • JBG I won't be strong either. It's so very sad. But that's the purpose of the funeral isn't it? To cry and grieve together for this unspeakable loss. If it takes a village to raise a child, then that village will also mourn him. While the suffering of Sammy's family is exponentially greater than anyone's, we have all lost this child and mourn his death. I hope and pray for Gary, Amy and Tamar to be able to find some comfort during this.
  • SM I haven't lived in Park Slope for more than 14 years and don't know this family at all, but I'm crying. 
  • SRD Crying is wonderful. It shows you care. I am crying how. This is terribly sad. Everyone will be crying. Its more than OK.
  • CRB Cry, cry. You're not supposed to be strong. You're supposed to express what you feel. Since you can't move the clock back, cry.
  • DBM So sad! The same thing happened to a student of mine during the summer of 1997, and she was the same age. Everyone who knew her will remember her for the rest of our lives.

  • Some of these comments were left by friends that knew Sammy too, and some by friends and family that never knew him made it easier for me to pull it together. I needed to know it was ok, not to be ok. Becasue this was not ok.

    As a devout atheist who was bar mitzvahed himself, I found it odd to actually  listen to the Rabbi.  But when she said that the entire extended community was sharing the pain of Sammy's loss, I understood.  Yes, I hardly new him, but it hurt.

After the funeral I walked around the neighborhood.  It was scattered with 8th graders in black suits.  A few were eating lunch in front of their old school.  They were on they would have been with Sammy, a few years ago.  This was so wrong.

So, to Sammy's family, I know there is nothing I can say to reduce your terrible pain.  I just want you to know that there are people you never even met that share it.

    Would I have jumped in font of that van? 

    You betcha. 

     Everything would have been fine. 

     I wish.

Tuesday, June 4, 2013

On Broadway!

I am not such a fan of the musical theater.  Really.  That shit is wasted on me.  Let me define that for you if you don't know me.

A while back I had the opportunity to see Les Mis and Showboat in the same week.  Wanna here my review?  "The chair was much more comfortable at Showboat."  I was the guy that woke up during intermission at The Nutcracker (at Lincoln Center) and put on his coat because he thought it was over.  Yea I was that guy.  I shoulda kept my coat on and gotten some fresh air.

Anyway my kids were in the school play. They were in Fame Jr.  I thought they were in Fame with a Jr after it.  No.  Fame Jr  is part of Broadway Jr,. 60 minute musicals designed for middle school kids.  Broadway Jr also got my kids to see a real Broadway Show.  A few weeks ago hey went to see a manatee of Nice Work if You Can Get It.  Matthew Broderick even came out to speak to the kids after the show. It was cool the way he paid homage to the Stage Manager. "I might be a movie star, but she tells me when I can should get a drink of water."







Like most middle school events there was an end of he year celebration

Hundreds of students took to the Broadhurst Theater stage Monday morning, making their Broadway debut before their peers, educators and supporters, as part of Broadway Junior Celebration. 
Hosted by The Shubert Foundation and Music Theater International, the annual event – now in it’s eight year – is a celebration and culmination of the Broadway Junior Program, which builds theater programs in New York City schools with limited arts programing.   Backstage 

So for the 4th school day in a row I chaperoned a school trip.  All thirty school got to perform a song.  Every school had one student speak first for a minute.

Let me paraphrases....

"I made new friends that like me"

"I am really shy, but on stage I can be loud."

"We are really proud of all the hard work"

"Our teachers are great"








So, Dr Dorita Gibson, Deputy Chancellor for Equity and Access (wtf does that mean?) said that being in the school play was a factor in improving school performance.  Duh, you don't need a fancy title to know that.


Musical theater does not have to be for me, but now I understand why it has to be.


And, by the way.  I could not help but stand and applaud after most of the performance.  They were great.





I also got to put my special skills to work on the way to the theater.  I knew that the passes that are given to teachers for their class to get on the subway specifically say that they could only be used after 9am. But we needed to be there by 9 and at 8:30 the clerk in the booth said she would not open the gate.  The teacher in charge told me we were going to have to look for a clerk that would open the gate.  I put a stop to that.  Since they are all going to do their job I directed the 40 of us to an unstaffed entrance and had a kid with an unlimited MetroCard go in and open the gate.












This is not me

This is not me
Not me.

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