What kind of thing do you return to again and again?

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Is it a favorite book, a favorite movie, a favorite album? What do you return to again and again?--Al

-- Al Schroeder (al.schroeder@nashville.com), November 27, 1999


I mentioned many of them in the entry, but not all--like Robertson Davies' DEPTFORD TRILOGY.--Al

-- Al Schroeder (al.schroeder@nashville.com), November 27, 1999.

Tennis. I'm a horrible player, too. The saying "practice makes perfect" does not apply here, because I took over-priced private lessons every Thursday of my childhood, yet I still haven't won a match in my life.. not even against the ball machine. I enjoy the sport though, even if the few balls I actually hit go over the fence.

-- Laura Copeland (laura@plink.org), November 27, 1999.

Al, I am so very sorry to hear about the loss of your son. You, Barbara and Brian now belong to a club that no one wants to be a part of. There is no greater pain than losing a child.

My wife, Tracy and I, extend our deepest sympathy knowing full well that there are no words, no way to make anyone feel better. Although, making the decision to donate Jamie's organs was a wonderfule act of love and kindness. By doing this you truly show a deep understanding for our purpose here on this earth, to love and serve others. Our son, our oldest son, was a Tissue Donor and has helped over 30 people since his death in May of 1998.

If you, Barb and Brian would ever like to talk with me or my family please give us a call at 373-0225. With Deepest Sympathy, Tom & Family

-- Tom Ceseretti (tceserett@comdata.com), November 29, 1999.

I return to good websites like this. I recently discovered yours through "Bad Hair Days" and I owe Beth a big thanks.

I am so sorry to hear about your son. Even though he might have been affected by his autism, he was so lucky to have you.

-- Zoomer-"ALIVE AT FORTY-FIVE!-http://members.xoom.com/fortyfiver/aliveat45.htm (fortyfiver@yahoo.com), November 30, 1999.

Sometimes when I read from someone about a loss they go through, the loss seems sharper, because reading it from the person's writing, I experience it more from inside their heads. I mean, when I learned that JFK Jr. had died, I didn't feel anything for his family, and when the news media covered mourners, it seemed odd to me. We all experience loss, but we all interpret the experience differently.

Or, as Lou Reed said, "You love the life others throw away nightly. It's not fair, not fair at all."

We all know what loss is, but it's silly to think that any message I post can demonstrate that I know what the Schroeders are going through. That's not my place. But I still feel compelled to comment, because a message from a stranger can let you know where others have been, somehow giving some new insight into the eternal nature of Jamie's soul, perhaps setting my own soul free.

I found a chapter in an Oliver Sack's book about an American Hare Krishna, who developed a benign brain tumor that was allowed to grow unchecked. By the time his parents had found him, the size of the tumor had damaged his pituitary gland and some of his brain, including much of his frontal lobes. He had gained weight, lost his body hair, lost his vision, had no memory of any facts after 1970, nor the ability to retain new information, and, from the frontal lobe damage, had undergone a profound personality change. I mention it here, because superficially it seems like an inversion of the conventional understanding of autism. Nonetheless, many of the regular readers here may be able to relate to the story:

  And it was this--rather than his blindness, or his weakness, or his disorientation, or his amnesia--that so horrified his parents when they finally saw Greg in 1975. It was not just that he was damaged, but that he was changed beyond recognition, had been "dispossessed," in his father's words, by a sort of simulacrum, or changeling whose wisecracking and levity formed a shocking counterpoint to the fearful gravity of what had happend.
  This sort of wisecracking, indeed, is quite characteristic of such orbito-frontal syndromes--and is so striking that it has been given a name unto itself: witzelsucht, or "joking disease." Some restraint, some caution, some inhibition, is destroyed, and patients with such syndromes tend to react immediately and incontinently to everything around them and everything within them--virtually every object, every person every sensation, every word, every thought, every emotion, every nuance and tone.
  There is an overwhelming tendency, in such states, to word-play and puns. Once when I was in Greg's room another patient walked past. "That's Bernie," I said. "Bernie the Hernie," quipped Greg. Another day when I visited him, he was in the dining room, awaiting lunch. When the nurse announced, "Lunch is here," he immediately responded, "It's time for cheer"; when she said, "Shall I take the skin off your chicken?" he instantly responded, "Yeah, why don't you slip me some skin." "Oh, you want the skin?" she asked, puzzled. "Nah," he replied, "it's just a saying." He was, in a sense, preternaturally sensitive--but it was a sensitivity that was passive, without selectivity selectivity or focus. There is no differentiation in such a sensitivity--the grand, the trivial, the sublime, the ridiculous, are all mixed up and treated as equal. There may be a childlike spontaneity and transparency about such patients in there immediate and unpremeditated (and often playful) reactions. And yet there is something ultimately disquieting, and bizarre, because the reacting mind (which may still be highly intelligent and inventive) loses its coherence, its inwardness, its autonomy, its "self," and becomes the slave of every passing sensation. The French neurologist François Lhermitte speaks of an "environmental dependency syndrone" in such patients, a lack of psychological distance between them and their environment. So it was with Greg: he seized his environment, he was seized by it, he could not distinguish himself from it."
And   ...he not only had an excellent memory for songs of the sixties, but was able to learn new songs easily, despite his difficulty in retaining any "facts." It seemed as if wholly different kinds--mechanisms--of memory might be involved. Greg was also to pick up limericks and jingles with ease (and had indeed picked up hundreds of these from the radio and television that were always on in the ward). Soon after his admission, I tested him with the following limerick:

Hush-a-bye baby,
Hush quite a lot,
Bad babies get rabies
And have to be shot.

Greg immediately repeated this, without eror, laughed at it, asked me if I'd made it up, and compared it with "something gruesome, like Edgar Allan Poe." But two minutes later he could not recall it, until I reminded him of the underlying rhythm. With a few more repetitions, he learned it without cueing and thereafter recited it whenever he met me.

Sacks then comments on finding a deeper Greg than the medical tests allowed for:   Greg by this time had had several psychological and neuro-psychological evaluations, and these, besides commenting on his memory and attentional problems, had all spoken of him as being "shallow," "infantile," "insightless," "euphoric." It was easy to see why these words were used; Greg was like this much of the time. But was there a deeper Greg beneath his illness, beneath the shallowing effect of his frontal lobe loss and amnesia? Early in 1979, when I questioned him, he said he was miserable... at least in the corporeal part," and added, "It's not much of a life." At times, it was clear that he was not just frivolous and euphoric, but capable of deep, and indeed melancholic, reactions to his plight. The comatose Karen Ann Quinlan was then very much in the news, and each time her name and fate were mentioned, Greg became distressed and silent. He could never tell me, explicitly, why this interested him--but it had to be, I felt, because of some sort of identification of her tragedy with his own. Or was this just his incontinent sympathy, his falling almost helplessly, mimetically, into its mood? Then Sacks's feelings about Greg's condition were confirmed when Greg's father died:   In June of 1990, Greg's father, who had come every morning before work to see Greg and would joke and chat with him for an hour, suddenly died. I was away at the time (mourning [the loss of] my own father [at the time]), and hearing the news of Greg's bereavement on my return, I hastened to see him. He had been given the news, of course, when it happened. And yet I was not quite sure what to say--had he been able to absorb this new fact? "I guess you must be missing your father," I ventured.
  "What do you mean?" Greg answered. "He comes every day. I see him every day."
  "No," I said, "he's no longer coming.... He has not come for some time. He died last month."
  Greg flinched, turned ashen, became silent. I had the impression he was shocked, doubly shocked, at the sudden, appalling news of his father's death, and at the fact that he himself did not know, had not registered, did not remember. "I guess he must have been around fifty," he said.
  "No, Greg," I answered, "he was well up in his seventies."
  Greg grew pale again as I said this. I left the room briefly; I felt he needed to be alone with all this. But when I returned a few minutes later, Greg had no memory of the conversation we had had, of the news I had given him, no idea that his father had died.


  I made the following note on November 26, 1990: "Greg shows no conscious knowing that his father has died--when asked where his father is, he may say, 'Oh, he went down to the patio,' or 'He couldn't make it today,' or something else plausible. But he no longer wants to go home, on weekends, on Thanksgiving, as he so loved to--he must find something sad or repugnant in the fatherless house now, even though he cannot (consciously) remember or articulate this. Clearly he has established an association of sadness."
  Toward the end of the year Greg, normally a sound sleeper, started to sleep poorly, to get up in the middle of the night and wander gropinngly for hours around the room. "I've lost something, I'm looking for something," he would say when asked--but what he had lost, what he was looking for, he could never explain. One could not avoid the feeling that Greg was looking for his father, even though he could give no account of what he was doing and had no explicit knowledge of what he had lost. But, it seemed to me, there was perhaps now an implicit knowledge and perhaps, too, a symbolic (though not a conceptual) knowing.

I don't think we're all that different from Greg, or, for what little I know, Jamie. We wouldn't know what it's like to find youself groping on the floor in the dark, not entirely understanding what we're looking for, if our soul wasn't whole.

-- Mike (mleung@mikeleung.com), November 30, 1999.

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