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She was one of the first residents I noticed after I arrived at the Institution.
Actually, now that I think of it, I probably noticed her wheelchair first: it was attractive to me, as colored lights are attractive to a baby. Quite simply, I'd never seen anything like it before.
There was a little fiberboard tray in front of her. Attached to the tray were five round brightly colored buttons with wires coming out of them. Each button was marked with a letter: F, L, and so on. I soon realized that the buttons corresponded to a direction that her power wheelchair would take when she pressed it. (The fifth button was used to tilt the chair back.)
This little set-up had been devised specifically for her and her unique needs by the wheelchair specialist there; for apart from her head, she could only move the lower half of her right arm. And a poor pathetic little thin arm it was! She would raise it slowly, make a little fist, hesitate, and then with a studied deliberateness bring that tiny fist down upon one or another of the buttons. In such a wise -- as a judge wields his gavel -- did she decisively propel herself in one direction or another -- until she reached an impediment; then she would as deliberately chart herself another direction. And so on, until she reached her destination.
Most of the residents who were able to drive themselves used joysticks to steer with. Those were analog devices because they were of infinite gradation. By contrast, this woman's chair could be termed digital. Later, after I found out that she had been an engineer in her 'former' life, I used expressions from NASA like "course corrections" and "successive approximations" -- both of which appealed to her immensely.
I soon discovered that this woman was operating a power wheelchair which was every bit as idiosyncratic as its owner would prove to be. It was, for example, not unusual to see her going round and round clockwise in a circle. I suspected that this was due to the fact that, as the day wore on, it became harder for her to reach the 'L' button; so she made use of her geometry skills wherein 90° left is the equivalent of 270° right. Of course, this method failed her when a wall or other impediment prevented her from turning to the right. Indeed, at times she would find herself stranded somewhere because her little arm had become useless to reach any of the buttons.
Her wheelchair also had the dubious distinction of making the loudest sound -- a resounding 'ker-KLUNK!' -- whenever the motors were disengaged (that is, every time she changed direction.) This would echo up and down the corridors, thereby alerting the rest of us that an eccentric chair and its driver were on the loose in our vicinity.
She seemed, more than any of the other residents, to form an integral part with her wheelchair. The two -- machine and rider -- appeared to have been welded together as one unit. The chair may have been tilted back a bit, but the whole thrust was forward; and in its profile this viewer was reminded of the severity of a set of bronze bookends he once owned, of an Indian and his horse called "Dying Savage."
Her name was Sybil, a prickly word which seemed to fit her. She appeared to be a parody of the term "Old Maid" as I knew it from my childhood: severe of countenance and spare of flesh, with glasses, and a thicket of wiry charcoal-gray hair on top.
But she was a prickly pear in her disposition as well. Sybil was at my lunch table each day, and so I got to see -- and hear -- her in action up close. What I saw was an ultra-high-strung individual who would go off the emotional deep end at the slightest provocation. For example, if the aide feeding her attempted to feed her a bite of salad when she wanted a bite of chicken, Sybil would yell at the aide. In such cases when the latter did not understand or care, Sybil would get more strident, until she began to cry and eventually to scream.
Fortunately for our own nervous systems, Sybil's voice volume was greatly dimmed by the increasing weakness of her chest muscles; so what was meant to be a scream came out as more like a wail, albeit one that was still penetrating. Of course, the irony here was that the weakness of her voice resulted in her inability to communicate effectively, which led to the problem to begin with.
The tantrums occurred at virtually every meal. I wondered how it would be, to have every one of my meals become a living hell, as Sybil's were to her?
Sybil seemed to arrive at the lunch room each day with a chip on her shoulder. I was always seated across from her, and so I could observe her at my leisure without seeming to stare. She came to our table with what I call an "I-smell-shit-look" on her face. When her meal (which she had signed up for in advance) was brought to her place and briefly uncovered while they removed the part that kept it hot, her face assumed a look of the utmost horror, as if she had just seen some primordial ooze from another galaxy, (though, come to think of it, this woman whom they called "Science Girl" there at the Institution might find such a discovery to be distinctly fascinating!) and she spit out the words: "What is it?!" with utter disdain while shaking her head in disbelief.
At that point I had learned by bitter experience to take it upon myself to inform her of the exact contents of her meal. This would elicit one of two extreme responses: either a thin little smile and sage nod of the head; or the darkest of looks which portended a breakdown. In the latter case, I would quickly intercede for Sybil, using my superior (though not by much) voice power to inform the aide that this meal was unacceptable to her.
At times I would become disgusted with this sort of behavior on her part. After all, on many days it effectively ruined the meal for the rest of us at the table. (How do you behave when someone is throwing a fit at your table? Are you able to carry on a normal decent conversation with the others? You are not. Everyone tends to look away from the disaster and pretend it doesn't exist. We try to eat normally, but our guts are tied in a knot; and we sadly realize that yet another meal will not be well digested properly.)
On a couple of such days my resentment boiled over. Once, a nurse was trying to placate Sybil while she was throwing a tantrum.
Me to the nurse: "Will you be here tomorrow?"
Nurse: "Yes -- why?"
Me: "That's when I've scheduled my nervous breakdown."
On another day Sybil was screamingly micromanaging how she wanted the aide to deal with her food.
Me to the aide: "Oh yes, one more thing -- could you please cut each of her grains of rice in half?"
In my disgust with her behavior, I would mock her chosen field: "I have heard of Electrical, and Mechanical, and Civil, and even Industrial Engineers; but you are the first example of an Un-Civil Engineer that I have ever encountered!"
And, on those typical days when her cries became audible, I would announce, in imitation of Houston during the Moon Landing (or, perhaps more relevant, the infamous situation at Three Mile Island): "We have Meltdown!"
Sybil had been a resident at the Institution long enough, that some time before I came she had received a single room (singles are allocated by seniority.) This seems to have been to everyone's benefit, for reasons one could determine simply by being in the hall in the evening after she was in bed. There one could hear the meltdowns brought on once again by her failure to micromanage her own care. Indeed, it is impossible to imagine her with a roommate, for she seemed oblivious as to how her incessant anemic howlings might affect another person.
Those howlings mainly went unanswered by the nursing staff after awhile. True, the squeaky wheel gets the grease -- at first; but if the grease doesn't stop the squeaking, then you learn to ignore it.
When I first arrived at the Institution, Sybil was trying to go to church on Sunday mornings. But she missed many Sundays because of scheduling mishaps. Those lapses in bringing herself closer to Godliness became glaring when on more than one occasion I heard her yell at someone who she perceived had wronged her: "God damn you!" (I have no idea why she invoked God, when she was perfectly capable of damning someone herself.) At those moments I felt no sympathy for her at all.
She was, in fact, the poster child for nastiness.
For this reason, she was essentially a loner. One could see her during the course of a day, sitting all by herself in one place or another with her Indian-penny profile, ruminating. She sought out no one's company; and, with the exception of my roommate who read her the TV listings each evening, no one sought hers. When I passed her I would often greet her in a friendly fashion; this would brighten her up (indeed, she never got angry with me) and she would ask me how I was. And so we would talk for a moment or two -- which usually consisted of me asking her a couple of generic questions, and her answering in an eager affirmative. But soon I would make my excuses to get away.
What can be noticed in all of the above is an almost total lack of empathy on my own part for the resident Sybil. I felt that, like all the other residents, she was responsible for her own actions. This assumption was only cast into doubt when we met her mother, a dear sweet old lady who doted on her daughter. Aha, so she must have inherited the awful temper from her father! But when I asked about this (in a discrete way of course: "Excuse me, but can you tell me whether your late husband was as nasty as your daughter is now?"), I was told that he too had been a very kind and decent man.
Could Sybil's horrible temper have spontaneously sprung from her like Minerva from the head of Zeus? Yes: most likely it stemmed from the disease (MS) with which she was afflicted.
So I deliberately began to dispassionately observe her behavior in the dining hall. And I noticed that the first thing she requested was for the aide to turn off her chair. The reason for this was perfectly rational and it stemmed from bitter experience: it was to prevent her from making the mistake of accidentally driving her power chair into the table, thereby crushing the rest of us.
But, as I noted above, Sybil tended to try to shout to make herself heard. (She also tended to deliver the request in the form of an order, the politeness added on as an afterthought: "Turn off my chair! Please.") Unfortunately, the aide would get very defensive, saying: "Don't shout at me -- I'm not deaf!" You see, by this time Sybil's reputation had preceded her and she was apparently now typecast as "trouble". Of course, Sybil would try a little harder and yell a little louder; while the aide would yell at her or ignore her. And so things would rapidly escalate, until there was a minor (tears) or a major (screaming) meltdown.
Sometime during that exchange I would shake my head sadly and murmur the last words of Cool Hand Luke: "What we have here is a failure to communicate!"
This was a crucial stage in my relationship with Sybil: it marked the first time I was able to see a meltdown at least in part from her point of view. In doing this, I began to develop a sympathy for the woman.
And so I would try to preempt breakdowns before they began to take root: this I would attempt using humor, theater of the absurd, or just plain flattery. When Sybil would wheel up to the table (by her method of successive approximations), I would complement her driving. (The praise was sincerely bestowed: she really was good at that as long as she did not lose control.)
And, on a typical day at lunch when the meal was delivered to her and I saw the storm clouds beginning to brew on her brow, I would chide her with gentle-yet-satirical humor. "Oh my goodness, what if it's meatloaf?!" I would intone in mock horror as I referenced her most hated meal. For a moment she would stare darkly at me; then, seeing that I was playing with her, she treated me to a wan little smile and a shake of her head, which told me that, on some level, she was aware of the absurdity of her behavior.
At times she would call out a phrase or two, snippets of things vaguely remembered from her youth. These I would respond to with my limited knowledge. Once, for example, she called out "Water water everywhere, And not a drop to drink!" I filled in the missing line: "And all the boards did shrink!" I then asked her how to spell the very first word in the title of that poem, but she laughed and shook her head as if to say, "It's just too long ago!" And in such ways as this did I divert her from mischief for at least five minutes at lunch.
She constantly inveighed against the unnatural processed foods they served us there at the Institution. A favorite refrain of hers, repeated in a sort of doomsday chant each time they had the hatred product, was: "White bread, soon dead!" One day, seeing her dark vehement looks, I turned the tables on her by intoning: "Wheat bread, soon dead!" -- which confused her for a bit. After that, I would answer each of her chants with one of my own wherein the type of bread always changed (I arrived at 'pumpernickel' around the fifth iteration.) When she would gaze at me in disbelief, I would lightly add: "Well, it rhymes too!" In such ways did I divert her from her darker side.
I would catch her up when she would carry this natural foods-obsession to an extreme. One day when she asked for sugar and the aide asked, "Regular, or Sweet 'n Low?", Sybil became irate that she should even be offered the latter. At that point I teased her thusly: "You know Sybil, so-called white sugar is heavily processed -- it's not 'natural' in the least!" Once again she gave me her wan little smile, indicating that I had bamboozled her yet again.
Every day a piece of fruit would be put on the table for Sybil. She demanded, utterly without humor, that this be placed between her legs for consumption later. I took to calling it "Fruit of the Womb".
Did I help tame the savage breast? Unfortunately, I don't think that I did. Sybil seemed to live her life in sequential events that had nothing to do with one another. So I might seduce her into a smile one moment; and then she would be melting down again in the next.
One day Sybil seemed to choke on some food she was eating. The nurses there at the Institution were understandably concerned, because the ingesting of food into the lungs can lead to pneumonia, which is a major cause of death of MS patients. So they began grinding up her food.
Sybil was beside herself with rage at this major change in her eating habits. She didn't just want to take food in as a car takes in gasoline. She wanted to chew and taste and
savor and finally swallow her food; that is, she wanted to enjoy the whole rich experience of eating. And she claimed that she was able to do this right at that moment.
For the first time, I felt something like admiration for Sybil and her protests.
Of course the doctors and nurses had to be careful. So while they continued to test her, they kept bringing her generic-looking 'food' wherein it was impossible to tell from looking whether what had been ground up was meat or fish or something else. No doubt all of the other residents would have accepted this unfortunate state of affairs as a necessary stage of living with the disease. But not Sybil! She went on a sort of hunger strike wherein she would screamingly refuse the blah offerings they attempted to foist upon her.
Fortunately, they discovered in time that her swallowing problem was a temporary one and they were thus able to insinuate normal food back into her menu.
As I noticed those things, the behavior of this observer changed in a subtle but unmistakable way yet again: I began to watch over her around the Institution, to take notice out of concern for her welfare. In this I had free reign, for, with a couple of exceptions, no other resident there seemed to care whether she lived or died. I had the sort of feeling one would get when one was adopting a hard-luck case.
Every summer evening just before bedtime, ten or twelve residents (including -- surprisingly? -- Sybil) would attend 'Jokes Night' out on a remote part of the terrace. At the conclusion, almost everyone would drift back inside. But Sybil would remain out there for a good spell, as if to welcome the encroaching darkness. And I would often ask her whether she was okay, or whether she needed help. Most of the time she was fine and my help was unnecessary. But, thinking back, I wonder whether my evening ministrations didn't provide a sort of balm for her existence?
Anyway -- that is the story of the resident Sybil and the development of my admittedly peripheral relationship to her -- a process which like her driving could be described as a series of successive approximations.
Was I some kind of minor saint because of the times I watched over Sybil and occasionally helped her? Please! I have already shown that I had a very low threshold for intolerance of her outbursts. It's true that I helped her, but no more than a few others had done. And what I did do for her was done at least in part out of a sort of arrogance as to the certainty of my superior skills. I engaged her in minor discourse, but most of that was in response to the flotsam and jetsam of her memory, as well as to show her the (very limited, but she didn't know that) extent of my so-called erudition. Because of my attentions paid to her at lunch, I have little doubt that she considered me to be her friend. But I failed her in that role for at least two reasons: first, I sometimes avoided her company or ignored her; and second, I did to her what true friends would never do to one another: talked about her disparagingly behind her back.
To invoke another mathematical expression that would have intrigued her: my approach to friendship with Sybil was asymptotic; that is, I allowed myself at times to come very close to becoming her friend, but somehow I was always able to avoid that state of dubious bliss.
I have never met anyone who knew what she wanted so intensely at any given moment that she was willing to do whatever it took, within the range of her feeble powers and oblivious to what anyone else might think, in order to get it. Supremely self-indulgent? So it would appear. A spoiled brat? Evidently. But in one sense Sybil, precisely because she had never compromised any of her principles, became one to be greatly admired. She and her actions may not have been attractive (though in the literal meaning of the word they obviously have been to this writer), but you have to admit that, unlike the rest of us, the woman kept her integrity.
(31 October 2008)
Postscript: My relationship with Sybil continued to develop (if that's the word for it) over the course of my three-plus years at the Institution. But something else was developing in us over that time: our diseases. I think that three years for MS is at times equivalent to about three decades in the lifespan of a 'normal' individual. Over those three years, Sybil gradually lost the use of the rest of her right arm. So the brightly colored buttons on the machine were removed (actually, smaller less flashy ones remained as a sort of sentimental reminder), to be replaced by a system which required only her head and chin to operate.
But in the same amount of time, I lost the use of both of my hands. First the right arm became useless; then the left arm, which controlled the joystick (which I used to drive and steer with), began to fail me. And so it was that one evening after Jokes, I found that I could not move my chair because I could not move the joystick. I couldn't ask for help because every one had already gone inside. So there I was, trapped out on a remote part of the terrace with the coolness and dankness of the late summer night closing in on me and no one in authority knowing I was out there.
Did I yell out for help? No. By then my chest muscles had become weaker; and besides (in such a way did I reason myself out of this simple strategy), the windows in the whole building were for the most part all closed. But the real reason was probably due to aesthetics: I had already seen so many examples of screaming and yelling, I think I had become constitutionally incapable of doing such a thing myself.
But within ten minutes an aide came out and asked whether I needed help. I told her that I most certainly did, and I asked her how she knew that I was stranded out there? She replied: "Sybil told me that you were in need of help."
So there it was. In my arrogance I was so busy studying Sybil like a bug under a magnifying glass, and so eager to manipulate her emotionally like my own personal puppet, that I apparently missed a couple of key things. The first was the encroachment of my own disease. And the second was the fact that my object of study might also be studying me.
I was also reminded of a certain fable by Aesop. I think it is called "The Lion and the Mouse."
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