Empathy and Lack of Empathy (edited)

Before I start, I want to tell you about a wonderful site on the web, and recommend a visit there: Check out http://www.compassionatecooks.com for info on a plant-based diet and man’s cruelty to animals. Also, wonderful nutrition info you simply cannot find in one place anywhere else is here, easily accessible especially if you go to the podcast and begin with #1.
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President Obama has said that in his search for a Supreme Court nominee, he is going to be looking for something with empathy. I am going to give him the benefit of the doubt of assuming the shorthand to mean that he wants the nominee to have the capacity for empathy. But what did he mean, or by extension what do we ourselves understand by this word “empathy”? The German term, coined by the German philosopher Rudolf Lotze, or Theodore Lipps (sources conflict) in the mid-nineteenth century (einfühlung) or the literal English translation, “in-feeling” was originally a term of art appreciation. “Empathize” was coined in 1924 came closer to the meaning it has today.

 

In explaining his vote against Chief Justice John Roberts, Obama wrote:”[w]hat matters on the Supreme Court is those 5 percent of cases that are truly difficult…In those 5 percent of hard cases, the constitutional text will not be directly on point. The language of the statute will not be perfectly clear. Legal process alone will not lead you to a rule of decision…. in those difficult cases, the critical ingredient is supplied by what is in the judge’s heart.”

 

Definitions of Empathy abound and here are just a few. Wickipedia: “Empathy is the capability to share your feelings and understand another’s emotion and feelings. It is often characterized as the ability to “put oneself into another’s shoes,” or in some way experience what the other person is feeling. Empathy does not necessarily imply compassion, sympathy, or empathic concern because this capacity can be present in context of compassionate or cruel behavior.” (Italics mine)

 
Hannibal Lector in the Silence of the Lambs had empathy, a terribe empathy, and he used it to horrific advantage as he was able to intuit volumes about a victim, having gotten, as we say, into the person’s head. He also had no comscience, since he seems to have had no regrets, he perhaps even enjoyed having inflicted pain and horror upon the persons he murdered in such grotesque fashion. But he did so because he understood just how much pain he would be causing them…Note, later I thought about this and wondered if it is true that he actually could experience the semi-vicariousness of empathy and still be so willing to inflict torment on others.  It seems to me that if he truly understood — in the sense of feeling for and with the person — how he or she suffered, he could not possibly cause such pain. Also, is not implicit in the notion of empathy some indication of compassion? Well, you see how difficult the subject turns out to be!

 

To continue with others’ definitions: Carl Rogers wrote:  “To perceive the internal frame of reference of another with accuracy and with the emotional components and meanings which pertain thereto as if one were the person, but without ever losing the “as if” condition. Thus, it means to sense the hurt or the pleasure of another as he senses it and to perceive the causes thereof as he perceives them, but without ever losing the recognition that it is as if I were hurt or pleased and so forth.”

 
Khen Lampert (2005): “[Empathy] is what happens to us when we leave our own bodies…and find ourselves either momentarily or for a longer period of time in the mind of the other. We observe reality through her eyes, feel her emotions, share in her pain..”

 

 

There is something else that precedes empathy, which seems to be innate to the human species. Emotional contagion according to Wickipedia is “the tendency to catch and feel emotions that are similar to and influenced by those of others. One view developed by John Cacioppo of the underlying mechanism is that it represents a tendency to automatically mimic and synchronize facial expressions, vocalizations, postures, and movements with those of another person and, consequently, to converge emotionally.”

 

 

Sympathy or “feeling with” on the other hand, used to mean what empathy has now come to mean. “In Eng., almost a magical notion applied to it at first; e.g. in ref. to medicines that heal wounds when applied to a cloth stained with blood from the wound. Meaning “conformity of feelings” is from 1596; sense of “fellow feeling” is first attested 1662. Sympathize “to have fellow-feeling” is recorded from 1605. Sympathetic “sharing the feelings of another” is from 1718.”

 

 

Now, my concern is not actually Obama’s use of the word, though I frankly believe he simply meant “humanity, or humane spirit or humanism” or something like that. It is rather with my own ability to feel empathy that I am concerned. I know that many people get anxious when I tell them I fear I cannot feel empathy, because to them it marks me, or might if true, as somehow less than the warm, caring and compassionate human being they take me for. Now, how I feel being whatever it is, I firmly believe that what I wrote back in 1984 remains as true today as it ever was then, that love, and forgiveness and compassion are decisions of the will and acts that flow from them, rather than pure feeling-states. In fact, I venture to say that the feeling itself is less important, if important at all, than the act.

 

 

Take Mother Theresa for example. After early spiritual experiences, she apparently led a life almost entirely bereft of the feeling of God’s presence in her life, a state of bleak lack of further spiritual connection. She was close to despair more than once. Yet she came to be regarded as a saint for her acts of humble compassion and altruism and few ever knew how desperate she sometimes felt. So good was she seen to be, such an example of true Christian values, that she may soon be declared an official Saint of the Roman Catholic Church

 
There is absolutely no implied analogy here, nor any claim that my acts resemble those of Mother Theresa in any imaginable way. I mention her only as an extreme example of someone who was clearly an exemplar of compassionate goodness, but who nonetheless felt different on the inside from what people always assumed. This does not, and should not, detract from the value of her acts, nor their purity as acts of love and kindness and selflessness. No, in my book they only point them up the more, for being driven only by her will and her conscious decision to act on what she knew she had to do, rather than on the easy impetuosity of emotion. The decision she made to give her life to the poor and sick of Calcutta must have been hard; it is always easier to act when emotions run high. But that only makes the fact that she did, and continued to make that self-sacrificing act her life for decades afterwards, all the more breathtaking.

 

 

Now where was I? Mother Theresa seems to have felt empathy, though of course we cannot know this. All we know is that she acted compassionately and humbly and with extreme kindness always. We want to think she felt empathic, but have little evidence to prove it (or disprove it) in the end. I think this is why I brought her up. There is no comparison between us, of course, my problem being the evil I cause rather than the good she spread. However, I rely on a display of compassion to others, which is deceptive, as I am ashamed of my evil essence, do not in fact wish to pollute and contaminate as I do. I do not lie and tell people I am harmless, but I try to act like a good person, to be seen as empathic and sympathetic, always ready with an open ear and a willingness to listen at all hours of the day or night. I do good things, go out of my way for people, believe that it is the acts of love, of compassion that is important, because I must: I cannot feel either!

 

 

I do not know why this matters so much to me, but I believe it has a great deal less to do with empathy than with something far more selfish: I treat people as I know I want them to treat ME. I want to be listened to, I want to be assisted when I need help and so forth. So I do it for them, hoping someone else might also do so for me. Not in return, mind you. No, I know the world does not work that way. But perhaps, in some fashion, I might “earn it”? And if not, well, I did not deserve benign treatment anyway, being evil and malignant from the start…In short, I practice the golden rule, perhaps, but a very self-serving kind of one.

 
But the difference between this and empathy is huge. I ask a fundamental question that is in fact the reverse of the essential one asked in empathy: Not how would I feel if I were that person, if I were that person with such and such happening to me. But how would that person feel if she were I? It is a subtle point, a subtle distinction, but a crucial one. On the one hand a person shows a capacity for true empathy — how does that other person feel? — and on the other merely demonstrating that he can recognize a feeling state in another person because he has felt something similar in himself and he can imagine himself feeling that way again.

 
Many years ago, my father put together a book on the subject of empathy in which he, revealingly, made precisely this semantic error, defining empathy as “how would that person feel if he were I?” I tell you this only because I believe that my own lack of empathy stems from his, from his inability to teach me to feel what he himself cannot feel or understand. My mother was not particularly close to me growing up, because she felt that I somehow felt superior to her, which was far from the truth. Nevertheless she took into her head that notion and could not get it out (her worst accusation to me, when angry, was “You are just like your father..!”) with the result that I felt shut out a lot, forced not to feel or reveal any stray feelings that might still arise (Note: the bulk of my emotions had long since been squelched or shut off in my extreme effort not to be hurt or let anyone ever know they’d hurt me, or know anything else I felt, for that matter…) ** She did feel compassion and empathy, but nonetheless her effect on me in this respect was minimal, her effect on me was  hurtful. (Not in every way, mind you. She was a good mother in general, though she failed me in some crucial aspects.)

 
** Note that relations with both parents are vastly improved at present, that I love both deeply. I write of the past truthfully, but without rancor or even regret.

 

 

In any event, the result was that I had neither mother nor father to teach me either in words or by example or in action what empathy was, and it was my misfortune to be too shy and perhaps too ill already to meet or interact closely with any other adult who could substitute for them. The result of that, I fear, is that I cannot actually feel empathy, and without empathy I cannot feel real love. But hell, I don’t even feel affection, not really. I never ever feel like reaching out and putting a hand on anyone, or hugging them spontaneously…If I have ever done it, it has been stiffly and without feelings of desiring to or without “getting any good feelings,” only feeling reluctant and even repelled.

 
Did I say I could not feel affection. I must correct myself: I feel deeply affectionate for my cat Eemie, and this despite all my earlier avowals that I wanted to get rid of her for fear that I might kill her…I dunno why I said that. I think, no, I know it was because she was not sleeping alongside me anymore and was, for some odd reason, ignoring me, just sleeping in her spot behind the bookcase and eating secretly and sleeping at night by herself, so that I felt abandoned, and all she ever did to announce her presence was to knock things off the table when I was asleep, and break them!

 
But since I got out of the hospital in February, things have changed. Eemie is back to sleeping next to me, on top of me, or in between my feet. She crawls onto my lap when I am typing or reading and tries to get me to stop everything and pet her. And she ankle-dances around me all the time, as if she cannot bear not to be near me. In short, I no longer feel abandoned by her…

 

Which leads me to this: What can I do about all the above? Well, I do not know exactly. Dr O never quite believed, or never believed at all, that I felt neither empathy or love. I am not sure why…But I believe she was wrong not to do so. I think I feel it is unsafe to feel empathy for other humans. In that understanding, I have been visiting CompassionateCooks.com and listening to the podcast Food For Thought that comes out of that site. It is wonderful and informative and everyone should listen to it, for the nutritional information alone, even if you continue to eat animal flesh and secretions. After spending literally all weekend gorging on the 20-45 minute podcast episodes, I have decided that the cruelty-free vegan lifestyle is something I must try, that I can learn to feel empathy for animals first, and if I can do that, I will surely be able to feel it for humans. Because once I can really appreciate that pigs screaming when their throats are cut for slaughter, feel the same pain and fear that I would, and feel it with the empathy that might make it so painful to people, then I can’t imagine I won’t appreciate the pain/joy/sorrow etc that other human individuals may feel under the specific situations facing each. Maybe then I might have the capacity to feel affection and even love. I am 56. Can I hope for this before I die?

9/11: What Really Happened…

I know that many people accept that 9/11 happened as we have been told it happened. They believe that “Osama bin Laden” was behind a diabolical plot by 19 hijackers to attack America, crashing planes into the world trade center and the pentagon, killing thousands and traumatizing the country for years. They believe that the heat of the jet plane fuel was hot enough to melt the steel of both world trade centers’ construction and pancake all floors one onto the next into a neat implosion at free fall speed, just by chance. They believe, in short, what the 9/11 Commission has seen fit to tell us — whatever it has told us, though it stopped telling us anything from the very moment that the towers started to collapse, as if the rest were irrelevant. Well, the following video is something you should watch, and I hope you will watch it all the way through its hour and some more minutes length. It is both unnerving and fascinating, though it will be deeply distressing to anyone who wants to believe in our government’s complete beneficence and goodness (who believes in that anymore anyway?)

If you need any more convincing, I will ask you a couple of questions: what happened to the wings of the plane that hit the pentagon? Yes, I know, the plane itself disappeared in the hole it made into the pentagon, and was “vaporized.” But there is no hole where the wings hit that I can see! So where are the wings? And do not tell me they fit into that hole as this was a BIG jet not a Cessna. Measure the space by the windows. No way could an entire jet and wings fit in that circular hole!

Question #2: What happened to the plane that fell from the sky in Pennsylvania? The one we have been told the passengers forced the pilot to crash rather than follow the hijackers’ orders? We have been told it vaporized upon impact. Say that again? It vaporized upon impact. But what are they saying? Even the Lockerbie crash, which included a mid-air explosion, produced bodies and large pieces of debris. WHERE are the plane and bodies in the PA crash? NOTHING vaporizes in a crash from an ordinary jet flight. You have to pass at very great speed through much atmosphere to vaporize, so only something such as an meteor from outer space might vaporize, but often does not We can only hope that a piece of satellite space debris will. So think about those two inconsistencies in the story we have been handed, and ask yourselves: what else should I be questioning.

Then take a look at the beginning of the film before you write it and me off altogether.

New Psychiatrist – 2nd Appointment

Dear Dr C:

 

Today when I left your office, I had to get natural bug spray as I walk at the State Park at least once a week and I usually forget to use it for the mosquitoes and ticks…Well, I went in, made a beeline for where I thought the display would be (having really no idea, I had to traverse the whole store before I found it, unfortunately, given that people there — as I told you — were talking and thinking about me and looking at me and wanting me not to buy or to buy certain things as usual…). ButI found it finally. Luckily there were not too many choices and the choice was made for me when I saw the word “local” and “made in Connecticut” as I knew that would please the “locavores” who were monitoring my purchase — a locavore being someone who eats only from local sources.

 

Despite the fact that it was the most expensive bug spray on the shelf I took the bottle and found the shortest line…No, actually, the line I stood in was the one where the woman before me actually looked at me without a frown, and in so doing gave me permission to stand behind her. I paid with my last ten dollars, though the cashier made everyone wait, impatiently I am sure, because he didn’t believe it cost $9.99 and he “didn’t want to overcharge me.” Hah!

 

Finally, I emerged from the store safely, shouldered my bag, and headed for the car. But as I stepped near the curb, a red Mini- Cooper drove past me and I understood immediately that this was your car, Dr C, and that you recognized me coming from Whole Foods. This seems entirely reasonable to me, since there was not another patient waiting in the waiting room when I left, so it seems likely that you were heading elsewhere after I departed…And suddenly a red Mini-Cooper seemed only rightly and properly “your car.” But somehow this conjunction boded very ill to me and I immediately became apprehensive, or what my sister, Dr O and my friend Josephine all called paranoid.

 

On one level I see what they were saying. But on the most profound level, I KNOW that what I know is truer than their objective observations. I was/am certain beyond the faintest doubtful smudge that you are in with Them, capital T. Who are They? They are the osteopaths of H_____, who have had a conspiracy against me for years.

Lynnie – Carolyn — told me I should talk about this with you, so here you are: this is only one of the big problems I have with you at the moment. Another one, which may be insurmountable in the end, is that I want to know why you sit where you do, I mean, way across the room from me. I do not want you to change. Do not suddenly get up and sit elsewhere. I just wonder why your natural choice is to sit, what is it, 10 feet away? Do I, as I fear, repell you? (If yes, is that because of the Osteopaths and what they have shared with you?) Do you fear me? Fear something? I can barely see you. I feel like you cannot see me, which is more to the point.

I need…I need…Oh, Lynnie tells me to do something different from what I “usually do” – be brave enough to ask questions when I should then sit still and listen to the answers, and ask for clarification if I still haven’t understood. To discuss what I feel rather than letting my paranoia get the best of me, not simply accept it and go with it full speed ahead. But I do not know HOW to fight the absolute certainty that things are going on, nor the special knowledge that I have. Zyprexa helped more than anything, but that is utterly unacceptable. Nothing else has made a dent. Except possibly the 35mg of Abilify, which I went back on tonight, just in case…We’ll see.

Enough is enough. I hope you don’t mind that I wrote this. I didn’t want to leave a message on your phone nor ask to have you call me. In fact, though, I may keep this until the 13th and give it to you then, as I am afraid you might consider it a burden to read a letter “off duty.” 

 

Sincerely,

PW

 

Now, that is what I wrote him, after the incident recounted in the letter, but in fact, I have found and called an APRN therapist, a female, who sounds and “feels” more to my liking, though I have not yet met her. Maybe I simply get on better with women than men? But that is not true, as I have had male docs in the hospital I preferred over the female therapists by far. I think, as I discussed it with Dr O, I found Dr C not so warm nor “safe” in the end, nor responsive to what I said. I had trouble talking with him, because he did not actually talk with me, only listened, which is not what I want in a  psychiatrist. I do not want that sort of “therapy” — I don’t want to delve into my past or my inner feelings. I have a hard enough time dealing each week with what is happening in my life, let alone the deepest darkest secrets that my mind hides from me and in which I have no interest…My goals in therapy are mainly two: to gain some self-esteem and self-confidence, which despite how I may sound here, I have almost none of, and two, to somehow, somehow, if possible, learn how to cope with and not be so chronically paranoid. Of course, those were Dr O’s aims with me all along, I imagine. But perhaps if I myself commit to them and learn how to work at them, more headway can be made. I sort of think, now that I know what paranoia is and how to recognize it, finally, that I need concrete exercises to practice how not to succumb to my tendency toward it. Ditto self-esteem, which tendency is just as strong, if not stronger, since it produces as much paranoia as grandiosity does. I cannot imagine what form such exercises might take, but I can imagine that they exist. I cannot be the first person to need them, after all.

 

WE MAD is at the printers but apparently it takes a month to come out from there, so it won’t be finished until May 28th! Geeze, and I thought it would take a week at most…This is going so slow. I cannot see how they could possibly have gotten the book out in February, even had I not been ill and taken a “month off”. At best they would have gotten the book out in April! I should have known that anything a publisher says with a deadline has to be taken with a grain of salt. But I cannot seem to get that through my thick skull and so I still keep on expecting things to be done on time, and keep meeting deadlines that no one else ever does.

ALS, or Lou Gehrigs Disease: A Confrontation.

I’m in the middle of writing a poem when the phone rings. I read Joe’s number off the caller ID. It’s 9:30 A.M. I set aside my poem and push the button for speaker phone. It’s not that I don’t want to talk, but I know the shortest call will take at least a half hour and most likely more. I am not ordinarily a telephone person. If I had my druthers I’d take email any day, but Joe has no choice.

“Hi, Joe,” I say, carrying the phone into my erstwhile bedroom, now my art studio. “What’s up?” I push the button for speaker phone and set the handset on the table near my newest project, the two and a half foot tall papier-mâché goose that is my first commission. Picking up a brush, I paint while I wait for his reply. Changing gears is always good for my brain and now that I’ve made the change, I find I’m happy to talk.

A distant ka-chunk, ka-chunk, ka-chunk comes back, a pause, then Joe says, “Pam. Pam. Pam.”  It’s actually a computer voice named “Fred” (or something) and it is not so different from Hal in the movie 2001, or more to the point, Stephen Hawkings. But it’s one with which I have become terribly familiar. If I did not have a single mini-tape of Joe and I talking in 2003 about Sister Wendy’s art criticism and what we think about a painting by Rousseau, I would have nothing by which to recall his old voice. As it is, I dominate the tape. Closer to the machine and apparently hypomanic, time after time I interrupt Joe in my enthusiasm, even when he does say something. But I can hear him in the background and when I deign to let him, he speaks fluently and without impediment.

The tape was made three years before everything changed, before slurring in his voice turned out to be the first sign that he had amyotrophic lateral sclerosis, otherwise known as Lou Gehrig’s Disease.

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There’s a moment like a car-wreck, when your heart is crushed, no air-bag to cushion bad news. It happened like this:

My wrists bandaged from the day before, I was sitting on my hospital bed in the room without any furniture, only an aide guarding the doorway, when several people walked right in: my twin sister Lynnie, my psychiatrist, and the hospital social worker.  My first thought about them was, A whole committee? What are they doing here? My second thought was, Uh, oh, nothing good can come from this! The fact that Lynnie was there struck me as particularly ominous; she had more power over me than the other two combined. I feared there were to be dire consequences to my previous day’s act of desperation: was I to be sent to the State Hospital, assigned a conservator, forced to have more shock treatments? Each of those things had occurred before and I could not bear them a second time.

I sat forward, my arms crossed protectively against my chest. “Why is Lynnie here?”  I muttered to Dr O, whom I thought of as my only hope and protection, though that hope was fading fast. She didn’t seem to hear or understand. I frowned. The Committee stood, silent, around my bed, towering over me, or so it felt. I cowered. I waited for the blow of some hammer I didn’t want to fall. After several seconds, I couldn’t bear it. “What do you want?!” I finally snapped. “I’m not going to–”

“It’s Joe, Pam,” someone said with infinite gentleness.

“Joe?” You mean this was not about me but about my best friend? Suddenly I understood. Hadn’t I witnessed with concern as Joe’s voice became increasingly garbled over the past 6 months? He had several times choked on food. No one could seem to figure out what was wrong. He’d had test after test. I started looking things up on the internet. I had come across some constellations of symptoms that seemed to match, but the possibilities were simply too dire to contemplate…

“He has Lou Gehrig’s disease.” My heart plummeted; it was as bad as I’d feared. But why call it by what was practically a euphemism? Did they think I’d never heard of Amyotrophic Lateral Sclerosis, motor neuron disease, that I didn’t know what it was? I knew what was in store: with a mind remaining intact and progressive paralysis of every single skeletal muscle, ALS was inevitably fatal.

There’s a moment like a car-wreck. Your heart mangled and torn, no airbag can pillow the punch. No, it was not I after all, but my best friend, dying, the news like a gun-crack at silent dawn. A wail burst from me. I pounded the bed and I hit myself. “I knew it, I knew it.” And I had known, all along, but feared if I spoke the words the terrible truth would become true: somehow I knew it was I who had dealt him such deuces…

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Added in Aug 2009:

That night, after the Committee left me in the care of aides still sitting one to one with me, I went to sleep alone in the room cleared of everything but my bed and nightstand and only my journal to write in. I had eaten little dinner, and spoken to no one that evening, only sat numb and silent, or writing by myself in my room, saying nothing to a soul about Joe or myself, about how I felt about either of us… But I was thinking about us, about how Joe, the dear man who was my most loyal and generous and deoted friend, must have felt when he got the news, wondering how he was feeling now…And I wondered how he dealt with it…I could hardly bear the thought of seeing him now, now that he was dying. Things felt to me almost unbearable, unbearably changed.

At the same time, I felt lonely beyond speaking of it to anyone. Despite all the commotion my temper tantrums caused there, and they did, I was alone most of the time trying in vain to control the self they believed i willfully chose not to…In fact I (Oh, I have been through this a million times, and it still rankles, but no more.  It doesn’t matter what they thought. They were wrong and if they didn’t know it or care, why should I?) Anyhow, I felt sad suddenly, not just for Joe, but for all of us, Joe, me, and Cy and Lynn as well, who were elderly and Lynn was very frail after having caught pneumonia in Israel sometime earlier (was it just that January in fact?). I cried a little, quietly in bed, until I finally went to sleep. But I slept shakily despite the Xyrem and kept waking, thinking I heard the aides talking about me…which likely they would not be doing, since what would they give a damn about me for? The book, that trusty old book the Four Agreements has finally pounded that into my head: They had their own lives, their own problems… my losing my best friend to ALS, or at least his body being given over to that terrible illness, was surely not their issue, or their sorrow, so why would they care about me or talk about me? (You see, I know that now, but try to convince me of that then and Id have sworn to you you were crazy, of COURSE everyone was thinking about and talking about me! It was clear as the sound of the traffic on the highway! — which come to think of it, might not have been audible either, though I thought it was, all the time..)

Finally, I guess no one wanted to talk to me, everyone being afraid of me, so they enlisted the Jewish Chaplain to come and counsel me, figuring if they could hear me cry, if she could “get me to cry” they would know I was all right…and that they would not worry about me. I know that because — oh, what the hell does it matter? She was very nice, the chaplain,  and very ecumenical, and I was gad to hear it as I would not have been happy with any religious rant…

When Joe did visit the next day, he looked great, smiling and almost joyful. It was weird. But he said that he felt fine, and he viewed the illness as a great adventure, even the propest of dying didn’t faze him. Besides he said, he was on the ten year plan…He figured if he could last three years, outliving expectations, then live five, he’d be good for the unheard of ten, maybe fifteen, or even twenty, who knows….And I believed him, just listening to him tell me his plans.

You know, I think his very optimism has carried him far.  See how is he is now, but he hasn’t gotten pneumonia a second time, quite despite the ICU’s predictions of constant recurrences and his making an early decision to die…No, he had one infection with C. dificilis, but after that, which was cured, despite its reputation for hanging on and on, he seems to have been quite well, and very well taken care of. NO bed sores for one, which to my mind indicates excellent care of someone who hasn’t left his bed or his supine position for more than two years…Which brings me to the case in point: he has made it three years! He was diagnosed in August of 2006, after havaing been ill since at least January. And it is now Aug 2009. So that makes it Three years he has survived this crummy disease. I asked him how his movement was and he was able to make some shaking movements so he has some muscle fibers yet…All is NOT as “gone” as I’d thought! He even has a twitch or two in his fingers…So he could use switches for all sorts of things, if he would let the staff know he had the use of those muscles. But he doesn’t, for some reason. When tested, he lies completely still and doesn’t let on that a single fiber remains active. Its as though he doesn’t want to move a muscle fiber any more, doesn’t want to live, physically, only wants to live in his mind…Forgive me for saying this, but it felt that way from the moment he was hospitalized. He simply abdicated moving once he got pneumonia, he stopped fighting and surrendered completely.

Why do I say that? Well, he never again tried to walk or move his arms or do anything that he could do before he got ill, and I think he probably could have done them or been rehab’d to doing them, had he simply wanted to. But I think being sent to the Hospital where he would be on a vent and trache for the rest of his life gave him permission to take on the role of paralyzed patient early, and he saw no other way…Perhaps he didn’t know that there would be other freedoms, like the step down unit and going outside with a portable ventilator, if he had tried harder to use the muscles he still had (after all, even with pneumonia he had been walking and driving and doing everything a non-sick person does, though with increasing weakness and difficulty. He had not yet begun to use a cane and had only just caved to getting orthotics made for his ankles…). I know he was terrified of being wheeled into the dayroom and left there to do nothing all day but be captie audience for soap operas and cartoons, but he wasn’t even trying to let anyone know he had muscles for them to train, or rehabilitate….so no wonder no PT therapists came for him!

Oh well, it was his choice, unconscious or not. It is all water under the bridge now, I guess. I just feel bad that he won’t even now let anyone know that he has this remaining ability to, say, shrug that could be useful…I have to beg him to blink his eyes to say yes, when we are using the alphabet board, but it seems to me that there would be other easier ways to communicate with us without the ERICA, if he would admit to the SLP (Speech-Language Pathologist) that he had muscles they could use to arrange something, hook him up to something.

Enough of this for now. I have a headache and this ain’t helping nothing.