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.

Saturday, June 17, 2017

I Definitely Don't Want a Card

My kids have made me a better person. Why would I want them to give me anything on the third Sunday in June?

Thursday, June 8, 2017

Thanks for the birthday wishes

Yes, it was a very good birthday.

I woke up early so I can be a useful member of society. And I don't think there's anything more useful than judging a middle school science fair.

In the evening I helped my running club organize a 5K race. It is so satisfying to see all the moving parts come together so that hundreds of people could simply have a good time.

Thanks forKristen
Then I ran the race. Ran! Ran! Ran! Ran! Ran! Ran! I used streetlamps and fire hydrants and big trees to mark my distances and I ran half the distance and walk the other half. I got a head start so I made sure I ran when I heard people cheering for me. And I knew they were cheering for me because it wasn't the generic you look great or go runner. Hundred wish me a happy birthday either by name or my personal cheer "Fuck You GBS"

Then, the post race event was a party for me. Of course it was because they sang happy birthday.

Finally. coming home to this card made by my daughter truly made my day.

©Sabrina Ring

Monday, June 5, 2017

Back to the bucket list

I'm not a list of things that haven't been checked off yet. I think that's kind of bad karma.

ü  I completed a  marathon (then 28 more marathons)
ü  I completed ultramarathon
ü  I ran from Brooklyn to Nassau County and back


Now I have one more item on the bucket list to check off. I ran over and East River bridge that doesn't have a pedestrian lane. I ran over the Rikers Island bridge. Then I ran a 5K race on Rikers Island.

The race itself was kind of underwhelming. I imagined that I would run past prisoners behind barbed wire and gated windows, doing what I imagined prisoners would do. Or I thought I would be part of some overdramatic scene out of Oranges the New Black, or the first minute of a Law and Order Episode. But none of that. In fact it was just a little spooky. Running around buildings that I thought could have been empty because behind the barbed wire there were no cars parked next to them and no indication that people could even see me through the windows. I found out that often you see prisoners taking care of the landscaping but that was canceled for the day because we were running there. I also saw no evidence of people visiting, which I only hope was the case because we were there early on a Saturday morning. There was just one point where prisoners were yelling out the window. And in fact there were yelling very positive messages of encouragement. And I actually did find it encouraging that people who were locked up would cheer for me. I also thought we be transported around the island in a paddy wagon, but it was just a regular school bus that they use to move visitors around in.

And the race wasn't really designed for runners. I think about 75% of the participants was staff at the island and it was an excuse for them to get to see from a different angle and be cheered on by their workmates. At the water station they handed out sealed plastic bottles and the mile markers seem to be randomly placed around the course. They said you had to finish the 5K within one hour and I thought that would've been pushing my limits. The clock said 1:00:02 when I finished but my teammates GBSs said the course was more like 2.85 miles. The most memorable part of the course was actually the awesome views we had of the runways at LaGuardia Airport.


But here's the thing. Three years ago I was suddenly paralyzed. And I thought, I really believed, that I wasn't ever get to get to check anything off my bucket list again. I accepted that. I really thought that GBS sealed the lid on that bucket. I spent uncounted hours in the hospital reviewing my accomplishments. Remembering that that was who I was ..... Now I get to sit here and brag about one more running event that I got to check off my bucket list. 

Friday, June 2, 2017

Get on up (Update June 2017) NSFW and TMI. Not safe for work and too much information!

Update: June 2, 2017

I didn't think I'd be updating this again for a while, but today I had a little breakthrough. Using a credit card is a lot easier than cash because paper money and coins tend to fall out of my hands. It's much easier to just hand my card to the salesperson. But sometimes you have to handle the card yourself. In those cases,using the chip reader is a lot easier than swiping because it's easy to stick the card in the slot wait a moment and then pull it out. 

But until today, the ATM machine at my local bank didn't really work for me. You have to insert the card and pull it out rather quickly. My fingers haven't been that good at pulling it out rather quickly. This challenge hasn't stop me from trying, but if I try to many times the card will not work anymore. But I'm not shy, I had no problem going into the bank and asking the nice manager for some help.

But today, I forgot that it was a challenge. I just walked up to the machine stuck my card in and out in the proper amount of time and then press those little buttons and got my hundred dollars. #FUGBS


Update: December 10, 2016........................................................

As a review, I walked into my doctor's office on May 7, 2014. She set me straight to the hospital with a little note that said I had Guillain-Barré syndrome and by that evening I was unable to stand on my own. When you can't stand you can't stand in front of the toilet. So in the hospital, and in rehab, and for a while after I got home, I had to use a smooth wooden plank to slide from a wheelchair onto a rolling commode. A few months after I got home I was able to keep the commode over the toilet and get myself there with a walker. But all this time my hands were healing much slower than my legs so when eventually I was able to get on and off the regular toilet I was still unable to cross the finish line and use toilet paper 

So while I came home from rehab on September 18, 2014 I haven't been independent in any sense of the word. It was about a year before I was able to use a fork and a spoon myself, or bathe myself, or brush my own teeth. But in the year beginning the summer of 2015 I slowly gained the ability or purchased the tools so I can handle most of the activities adults take for granted. I had the round doorknob replaced to the back entrance of my apartment building with a lever and a pushbutton combination lock so I didn't have to use a key. I also put a giant rubber band on my apartment door so I can pull it closed and got a funky keychain so I can get in and out of my own apartment without leaving the door unlocked. So basically, by the end of the summer of 2016 the only thing that kept me from spending my days alone like an adult was the fact that if I needed to use toilet paper I would be as they say 'Shit out of luck.' 


So I figured out which bidet would work for me and had it installed. Then my wife and I were figuring out all the other little details that would need to be arranged for so we wouldn't have to pay someone to hang around with me all day. We bought a new coffee maker (I'm sorry planet Earth we got a Krups machine) .... Figured out how to leave the lids a little open so I can have lunch. I even asked the staff at the YMCA where I work out if they would mind helping me with some of the contraptions I need to pull the bars on some of the devices (When they smiled and just said "that's why we're here", I was overjoyed). One of the last little humps that I had a figure out how to get over was putting my own socks on. You wouldn't think that would be that hard except I still don't have the grip strength in my fingers to pull them up.

If you've been paying attention to my blog you would've known that on September 25 I fractured one of the little bones in the foot. I didn't need a plaster cast, but I did have to wear a boot that was secured with Velcro straps. Since the neuropathy in my hands hasn't healed as well as my feet I was unable to get that boot on and off. But earlier this week I was given the green light by the orthopedist to just take it easy wearing regular shoes.
So, exactly 31 months from the day I walked into my doctor's office and was told to hurry up and get to the hospital because you have a life-changing illness, I walked out of a different doctor's office knowing that I can begin to resume a normal life. This week I was able to say goodbye to the person that I had hired two years ago to help me do almost every activity I needed to do. Now, I can wake up, get out of bed, and do everything you do in the bathroom. I can make myself coffee, get dressed and leave the house. I could choose to go to the gym or take a bus or subway in a different direction. With a little bit of advance planning I can go into a restaurant and by myself lunch or go into a grocery store and bring some food home. 

I can compare my disability to slavery and institutional racism. But I think I can appreciate what it's like to have your freedom restricted.


Home Alone

Out Alone

Fuck you GBS

I'm free at last






Update October 22, 2016 .....................................................

It's been a long time since I updated this post. Maybe too long. Maybe I should've bought a bidet months or years ago. But now I have one.
Now that I purchased this model from
Overstock this pops up as a Facebook ad.

So my dear reader, you only have to use the tip of your imagination to think of the indignities I had to go through about once a day because my fingers and wrists are is about as useful as a big of carrots. 

Now, I can get on up whenever I want to go, as long as a home. 

It might be a long time, if ever before I get to update this post again. But a lot of people only sit down on their own toilets....

..... And if anyone says I told you so, I'm you spend a few days at your place thanking you....



December 2015..................................................................................................................................

On the third to the last time I visited my friend Paul in hospice, I witnessed something no one should ever have to see. We were chatting for a while he asked me to hand him the buzzer for the nurse. We ran so many miles together he didn't ask me to leave because he had to pee. When the nurse came in he said he needed some help getting to the toilet. She then said something like, "We talked about that Paul, remember what happened last time, your legs are too weak, we have to bring you a bottle."  Nobody should ever be in the room with someone who was told they already stood in front of the toilet for the last time. 

Fast-forward a couple years and I'm in the intensive care unit this time. Remember, I walked into the hospital, but once I was there they did n't let me walk around too much. The morning of my second day I buzzed for the nurse and told him I had to pee. I made it to the bathroom but when they let go of me in front of the toilet I almost hit the ground. They said after this we'll bring you a bottle.  In that moment I was with Paul again

For a couple weeks I was able to hold the bottle, and then neuropathy started to affect my hands worse. For four months while I was hospitalized and a few more months at home I couldn't even stand and be at the same time. Then for a while I was able to stand, but I didn't have the hands to deal with the rest of the process, so I still needed a person and a bottle. A couple months ago I was able to work out the process of peeing, but pants with zippers and buttons not so much.

Last night I decided to push the envelope a little. For the first time in almost 19 months I just got up, walked to the bathroom, took a leak, and came back to the living room without asking for help. This is big. This means, that if I wearing the right kind of pants I could use a public restroom by myself.


October 2015............................................................................................................................................

I need to give this one more update. And it's also time to describe some of the processes I had to go through in various hospitals.  You don't really have to read this, because it is NSFF(not safe for work) and TMI (too much information)

When I went to the emergency room I was just wearing shorts and a T-shirt. I difficult to be moving.  I actually get my shorts on for about five days in intensive care. Then one evening a couple of nurses aides came over and said hey you want to take a shower? I had been out of bed and for five days, and wasn't thinking much about showering but it sounded like a good idea. They put me onto a thing that was like a combination of a wheelchair and a beach chair. They rolled me into a little room that had a shower and then they peeled me out of my clothes. I said out loud goodbye dignity", because I actually sort floating away like a balloon into the hospital  For the past year and a half I've been struggling to get it back.

Where do the boy parts go?
When I walked into my doctor's office back in May 2014 I knew I had problems. But one of them like was myself. Prior to all the weakness that occurred in my arms and legs, I had incredible pain. Kidney stone level pain. And I've had kidney stones and have been told I be prone to more. So I keep oxycodone around. When I had this pain I self medicated little. I didn't know that oxycodone doesn't work on nerve pain, but since the pain to go away I just took more oxycodone. It didn't help, it did make me happy but it did make me really constipated. So being a quadriplegic and totally clogged up was not a fun combination. All my fifth day in the intensive care unit I mentioned to my nurse that I got a problem, that I had not pooped in five days. She said yeah we know if nothing happens tomorrow it's all of our problem. So in the middle of that night I rang the bell.

So.....I'm in intensive care and having gotten out of bed or pooped in five days. They bring over this chair with a little hole in it and tell me that they will help me get on it. I look at it and say "but where do my boy parts go?" The nurse says don't worry about it do what you gotta do. Okey-doke he but IP when I poop. So they hit me up on that thing, but as I predicted I became a frigging fountain. Sorry.

The constipation all effects of the oxycodone lasted for about a month. I stayed on a once a week schedule during that time. In acute rehab they had better rolling commodes with my boy parts, and they actually rolled me over a real toilet. But the first two out of three poops I had at Rusk required a plumber after I was done. I don't know about you, but have ever were able to look back and say holy shit that was the biggest poop I ever had. Well, I looked back and four turds and each of them was the biggest crap I ever took in my life.

Yeah, I got regular and came home from the hospital.  That was 13 months ago. But I still needed a sliding board to get over onto a raised commode. It took me a few months but then I was able to put the commode in the bathroom and use a walker to get to it. Then the walker became unnecessary. But, I couldn't even stand in front of the toilet.

So in the spring I was able to pee standing up. It was really exciting to recycle that portable uranal.


A few weeks ago I started up Occupational Therapy again. It's great. I'm just ask questions like what do you want to do that you haven't been doing. There's been so much I've been afraid to try, but lately I've learned that I can yes drink from a glass, no more beer through a straw.

The third week of OT I said that I didn't know if I could get up off a regular toilet. So we tried it in the therapy gym. Without holding onto anything and without taking my pants down I easily sat down on a toilet. And then I got right back up! FUCKING WOW. 

Yeah, I still need a little help in the bathroom with those things that require fine motor skills from the fingers. But raised arm commodes and urinal jars are behind me. (Pun intended)





August 2015..................................

life's been getting better, been spending four or five hours out of the house it any given time. I just have to make sure I go before I go.

April 2015 ...................................

I wrote this post below back in August when I was in rehab.  Lately, I've been posting about my progress how far I can walk the fact that I can handle a flight of stairs now.  But my whole day revolves around personal needs that I need help with.  I don't need a sliding board anymore, but I can't just go anywhere.
...................................................................................

Written from rehab in August 2014

Sometime in the next 24 to 36 hours you're going to feel the need to go to the bathroom. You're going to get up, go to an appropriate place, take off an appropriate amount of clothing, sit down for an appropriate amount of time, and when you're done you're going to clean yourself. Hopefully get up and wash your hands leave the room and move on with life.

If you are a believer thank your god that you can do this without pressing a button, and calling for help, using a sliding board and a commode chair that was specifically adjusted for your height. If you're not a believer just don't take taking a shit for granted.


Thursday, June 1, 2017

No bad choices here

A quick update. Lately, I've had two choices of where to join groups of people to go for a run on Tuesday evenings.

I can join the Open Run Program created by the New York Road Runners at Brooklyn Bridge Park. Below, is just one photograph  from the album that Larry made a couple of days ago when he joined me for a run there.

Looking West, from Brooklyn Bridge Park


Or, I can join the Manhattan Chapter of Achilles International. Below, is just one photograph  from the album that Larry made a couple of days ago when he joined me for a run there.


 Looking South, from the reservoir in Central Park


I used to volunteer at the Brooklyn Tourism Center. One day a family from Paris came in for some maps, and we started talking. They said they were from the greatest city on earth, and I appreciated their arrogance. Everybody should think that from the greatest city on earth. But as a New Yorker, I know I'm right.

Tuesday, May 23, 2017

NYRR Brooklyn Half Marathon Race Report

You would think that the highlight of a half marathon would be to run in the last hint of a mile with the race director and then get a hug from the CEO of the Road Runners club. We,, that was close. After all, I was quite pleased with myself. Three years ago I had to ask the nurse to lift my butt cheek so I could fart. Two years ago, I could even make it out of my house to watch the race. Last year, I completed the race wearing ankle foot orthotics. This past Sunday, I did it again with no orthotics and it actually took me 15 minutes longer. And so what, I finished last in the largest half marathon in the United States. I hope to finish last in lots more races.

The highlight of the race came at about mile 12.5, when the small fleet of school buses that was picking up runners and bringing them to the finish line caught up to me. I have been in those buses, back in the 90s when I was trying to break 4 hours in the marathon. I needed a ride to the finish line in the New Jersey marathon, the Long Island marathon, the New York City Marathon, I was able to walk off the course on a 1 mile loop on a marathon put on and Randall's Island. I even drove the bus (it was actually a Honda Civic) a couple of times for the Yonkers marathon.

But Sunday that bus drove by with its door open and the driver made eye contact with me. We didn't say a word to each other, but he knew from the way I look back then I didn't need to get in that bus. The driver didn't hear me, because my mouth didn't make any sounds. In my mind at 100 dB I heard the cheers of my friends, "Fuck You GBS"



BTW, my friend Larry snapped a picture of the bus driver.

Thanks Reverend Grim




Friday, May 19, 2017

FUCK

Until a couple of days ago the photo to the left with my Facebook profile picture. Until I got a phone call from the GBS foundation telling me it disturbed some of the patient's who might see my profile picture. I immediately realized that I represent an organization that is larger than myself. So I changed it immediately.

But my friend at the foundation seemed confused as to why put it up. I thought she wanted an explanation. I didn't give her one. Mainly, because I thought any discussion about it would become more of an argument about my First Amendment rights. And that would only become ugly. And by ugly I mean me defending my right to be an ass hole.

So here it is...  I don't give a shit about useless words, symbolic events, or meaningless platitudes. In fact, I think they do more harm than good. I can't imagine that wearing a certain colored ribbon for certain month does any good except benefiting the people who manufacture ribbons.

My Facebook ad feed is cluttered with people trying to sell me T-shirts that celebrate rare disease month. They are the same people who are trying to sell me T-shirts because I was born in June or went to Sheepshead Bay High School. They're not helping people with rare diseases, Geminis or my high school alumni. They're just a T-shirt companies.

So here's the bottom line. If I am hanging from a cliff don't tell me to hang in there, reach down and give me a fucking hand. If I have a rare disease don't think wearing a ribbon is gonna cure anyone or prevent anyone from getting it. Donate money to medical centers that are doing research. Or better yet, donate money to the political campaigns of people who want to get elected and use our tax money to prevent rare diseases.

And BTW, tomorrow is the Brooklyn Half Marathon, I will be participating in it at all my friends and teammates will be helping me celebrate GBS awareness month by cheering "FUCK YOU GBS!"





Sunday, May 14, 2017

A year ago I made a deal with the devil

For the first few weeks all the doctors kept coming into my room and smiling and saying, "Oh, you will be fine in a year."   I looked up Guillain-Barré syndrome on The Google and realized their definition of fine was not really what I thought fine was.  But I was able to deal with that because anyone's definition of fine was better than staying a paraplegic.

Then a few weeks later I had to go back to the hospital.  There in the most empathetic voice I heard my doctor say words I will never forget, "Maybe we have to change your status to the chronic one"

Fuck You, Satan!  But, honor that deal and keep my kids healthy.  You can throw all the shit you have at me, I will smack it back and spit it in your face.

Thursday, April 27, 2017

I had no idea

April 27 was a Sunday in 2014. The day before I was really sick.  I didn't sleep well the night before, but I thought I was fine to go to work. I really enjoyed my job and look forward to every day. I worked for a company that organized road races and I was usually the guy who would fill up the truck with tables and cups and water and fruit the day before the race. On race day I would ride my bike down to where the truck was parked and get to the race site a few hours before the race. I would help set up the course which meant getting the water and tables and cups out to where they needed to be and/or but in the mile markers and arrows out there. Then, just before the race will start I get back on my bike and leave the runners around the course.

Saturday, April 26 was like that. Except, after I put out the mile markers I had to use the port a parties which are just being delivered, I jumped up on the truck and told the guy not to move the one I just jumped into it until I got out. I then led the runners to the turnaround point over 4 miles from the start. My job was to wait there until the last runner came by making sure none of them kept running. The runners were spread out, so while none of them were looking I was able to throw up off to the side of the course. Then I collected the mile markers and brought them back to the starting line and got six or more. I managed to help load the trucks. I skipped my favorite part of staffing a race; the post race brunch.

I got home and realized how sick I was because I had a fever of about 102°. And then when I went to the bathroom I didn't know which way to face when I got to the toilet. I called my friend/boss and told him I didn't think it would be a good idea to be counted on for the next day. I wasn't going to try to wake up again at 4 AM. I updated my Facebook status and crawled under the covers. 

A week and a half later, Wednesday, May 7, 2014 I stumbled into my doctor's office and told her that I've been having this weird problem with my hands and feet.....

I miss it so much. 

I was working in parks. 

I miss driving trucks. 

I miss working with runners. 

I miss walking over to the starting line a small race, picking up a bullhorn and telling the runners things like, "don't bother trying to avoid the first puddle you won't be able to avoid the next five." 

I miss being the only person who got to watch the lead runners fight it out for first place in my bicycle's mirror. 

I miss making sure that everyone who already finished knows that the last runner is on their way in so they can applaud.

I miss going out to brunch after the race and having some of the people who actually participated in the race come over and thank us. 

At least I don't have to miss being recognized by strangers in the street... 




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