There have been two significant deaths to me recently. My grandfather died just before Christmas. And Judi Chamberlin (the first psych survivor I saw besides myself who challenged the leadership in that community by the likes of Szasz, Laing, Breggin, and other professionals who upheld many of the destructive power structures within psychiatry while claiming to be rid of them — she wrote a really good book called On Our Own) died this weekend.
And yet again I am coming up against my instinctive responses to death, that don’t seem to be all that standard. (Note that these are instinctive reactions and have been totally unchanging regardless of my religion or lack thereof. The second one especially is not a view or belief, it’s an involuntary reaction on the same level as most people’s assumption that their house looks the sane every day unless something specific changes it.)
For one thing, my memories of people who have died do not do that peculiar transformation I see in other people’s minds. That is, I remember the people the exact same way I remembered them in life. They don’t transform into saints, the bad memories don’t go away, I do not suddenly see them as all good and no bad. I know that this steps on a massive taboo. I did not know how massive until I saw people judging my entire character on the fact that when a particular person died a while back I did not suddenly cease to criticize the dead person’s actions (even though the dead person had called for dreadful things to happen to people like me, and even though the dead person continued after death to have the level of influence that would make those bad things more likely).
Whereas I find it incredibly disturbing that when people I know die, even people I mostly like, suddenly they are transformed in eulogies into people who never existed. Sometimes the eulogies even turned those people into the opposite of who they were in life — a total gossip will be described as never having an unkind word to say about anyone. This strikes me as frightening, disturbing, and disrespectful, but then my way seems to strike most people the same way. (Hint: If I were really the monster some people have made me into for viewing things this way, I would not care about how disturbing I find it to disrespect the dead by turning them into people they never were.)
So that was thing number one about my reaction to death that seems to be weird.
Thing number two is related but different. This is that not only does my memory not suddenly change the person into someone they weren’t, but that my memory does not change at all. The person is still there as far as I am concerned. I continue to use the present tense, not just by habit but because as far as I am concerned the person still exists even when I am fully aware of the fact of their death. I have heard of something superficially similar happening during denial but this is not denial. It happens whether I am grieving a good deal or grieving not at all. I simply don’t see the person as gone. I don’t see people who died thousands of years ago as gone either, I just see them as… temporally inaccessible or something. I grieve for our inability to inhabit the same time-area as each other anymore, but I don’t grieve for their nonexistence because they seem to exist, just somewhere (or rather somewhen) I can’t share with them now.
The first thing makes me into a terrible person in some people’s eyes. The second just seems to make me strange. But both of them are just how I am, I can’t imagine what it’s like to be otherwise. I mean I won’t go to a funeral and talk about how much I can’t stand the dead person, but I see nothing wrong with discussing their faults somewhere else (and I see a good deal wrong with actually changing descriptions of who the person is and what they have done just because they are dead — it’s one thing to refrain from talking about the bad points with people who are grieving, but actively claiming the opposite? Just… no, that erases the person more than death ever could).
And as for the second thing (which I find more interesting by far)… what is it about me that doesn’t respond the same way most people seem to when death occurs? I have talked to a lot of people and very few respond the way I do, or even understand my response. And I don’t understand theirs either. Why is it that most people process death so differently? Why does death seem to me almost as if it didn’t happen? Is there something about death I just don’t understand?
(And before anyone asks, I doubt that either one of these has to do with autism. Many of the differences between me and others on both counts are things I have observed both within and outside the autistic community. I have only met a few people who see both the way I do.)
Oh, and I am not printing comments that claim I am evil or something. It’s one thing to discuss different viewpoints about death in this situation. It’s a whole different ballgame to use my personal reactions to two recent deaths of a relative and a role model to castigate me for not mourning “properly”. Heed the difference, I will not tolerate the crossing of that line.
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Perhaps you are just more in touch with the reality that life really does continue after death. I think that a lot of people give lip-service to this belief, but don’t really believe it (I think that is true of a lot of spirituality).
As for the other part, I don’t think it’s wrong to continue to speak the truth about a person. It bothers me, too, when someone who said horrible things is made out to be a saint. We don’t characterize past tyrannical leaders as being amazing, wonderful people; what’s so different about the people we interact with now?
About eulogies: personally, I don’t think your reactions are unusual. There’s a language for talking about death (so in the UK any teenager who dies is described in news reports as ‘bright and bubbly’ whatever they were like), and people stick to that language whatever they’re feeling inside. The phrase my grandma uses is “You don’t speak ill of the dead”. I haven’t experienced many deaths of people close to me, but certainly my thoughts and feelings about them haven’t changed and I haven’t turned them into a perfect person in my memory.
So basically you’re not the only person feeling like that, you’re just the only person not ‘following the script’. It also confuses me that as soon as someone dies then telling blatant lies about them in public changes from being a bad thing to being a good thing!
“I grieve for our inability to inhabit the same time-area as each other anymore, but I don’t grieve for their nonexistence because they seem to exist, just somewhere (or rather somewhen) I can’t share with them now.”
I’d never though about losing someone in that way before - and if time’s just another dimension then they are just somewhere else - like that quote “The past is a foreign country, they do things differently there”
item #1: I don’t think that’s evil at all; the taboo against “speaking ill of the dead” is something I think of as more of an NT custom, something “political people” do. We might tiptoe a bit around saying negative things in front of people who *cared* about the dead person (lest they misunderstand), but criticizing the dead (especially in a constructive way) is definitely not a taboo among “my people” (for lack of a better phrase — not necessarily AS, just people who seem real to me), and we tend to see the automatic canonization of the dead (especially public figures who were highly questionable in life) as rather shallow and pointless.
(I could give some very intense personal examples, but maybe it’s not necessary.)
item #2: I can see things both ways, and I have found myself referring to dead people in the present tense.
It seems to make the most sense when talking about something they created — a writing, a drawing, photos of or by them — because in a way you’re talking about the aspects of that person which come through in that creation, and the creation is something which you can always re-experience and which continues to exist.
On the other hand, I am painfully aware that there is so far absolutely no known way of interacting with dead people as they were when alive. Does this make the person “different” to me, somehow? Well… only in the sense that there’s suddenly this huge load of sadness kind of dumped on top of my recollection of them… but they still mean as much to me as they did before. That can change over time, since I’m no longer interacting with them directly anymore, but the act of dying didn’t change who they are as people… if that makes any sense.
Maybe it would help if I put it this way: if any of my dead friends suddenly and unexpectedly came back to life, I would be overjoyed (to oversimplify the matter) but also prepared to deal with their imperfections just as before.
Since I’m an atheist, I truly do believe that once people are gone, that’s it, they’re gone forever. When your dead, your brain dies, and with that goes away the being of who you are. With that, comes total oblivion, and you are unable to think, or feel any amount of physical or mental sensation.
However, I respect your more theistic view on death. I understand and tolerate the fact that everyone is different.
It’s not really a view on death the way you mean it. It’s been there forever, and I have been everything from atheist to the opposite without it ever changing. It’s more involuntary than a belief is. Nothing I believe changes it. And it’s not incompatible with the whole body and mind stopping at a particular point in time without a soul coming after (not incompatible with souls either). But it’s very hard to describe what I do mean. It’s more an involuntary perception than a viewpoint, it’s like when I think of the person they are in the present tense even if they’re otherwise in the past. (Maybe it’s not my perception of death that’s weird but rather my perception of time.)
yeah i think people keep on thinking accurate and/or ugly things about the dead and just don’t say them. but i don’t know if maybe they say the happy memories so much that they forget the accurate things? maybe at least in some cases.
a famous dead person exception, at least in my case, is Michael Jackson. i believed the awful rumors about him, and so did a lot of people, and only after his death did i find out that he wasn’t actually a pedophile. i think that a lot of us just assumed that it was true and i think that we assumed it because he probably was gay, and even more so because of how strange he was, and … well, that’s just unforgivable, especially from people who are strange themselves, and who know very well that gay does not equal pedophile. so i feel like society kind of did him in, because he wouldn’t have been so messed up if people hadn’t believed that stuff. and so we need to change our memory of him to partly atone for that. if that makes any sense.
as for the time-continuum, well, (since God is outside of time, and He has the reality) i am sure that your way makes as much sense as, or perhaps more sense than, the usual way of looking at this. i don’t feel time that way myself, but i can’t see something *wrong* with it.
“…my memories of people who have died do not do that peculiar transformation I see in other people’s minds. That is, I remember the people the exact same way I remembered them in life. They don’t transform into saints, the bad memories don’t go away, I do not suddenly see them as all good and no bad.”
Thank you for sharing this. I haven’t known that many people who have died (I guess that makes me lucky), but I have had a similar response to a few of these deaths. (I won’t say “the same”, response–you and I are obviously different people and no two people think the *exact* same way–but I recognize in myself what I perceive from your words to be something similar.) At first, I thought it just made me weird or wrong or bad–I guess that’s a reaction developed from ‘normal’ society. Now, reading your words, I have realized that since I certainly don’t think you are weird or wrong or bad for having those thoughts, maybe I’m not weird or wrong or bad either.
Tailwags,
Littlewolf
Interesting post. I never quite understood the “don’t speak ill of the dead” admonition either. It implies that it’s okay to speak ill of those who are alive, and it conflates “speaking ill” with “speaking the truth”.
I suppose the reason for that is that dead people aren’t here to defend themselves and so it must be unfair, but living people cannot really defend themselves against gossip either.
The second reaction you describe doesn’t sound that odd to me either, the way I understood it is that if we had a time machine we could visit those who died and so strictly speaking they’re not really gone, they just exist in a different time.
I’m fairly sure people’s memories of the dead don’t change (and I know mine don’t). It’s just that after someone dies, the people who knew them will tend to pick different things about them to dwell on.
When my father was alive, I spent a lot of time and mental energy thinking about stuff he did that bugged me; after he was dead I thought a lot more about the things I liked and would miss about him, and about the ways that I had hoped things would get better between us and now never could. I haven’t forgotten the stuff that bugged me at all, it’s just… it’s all moot now, so there isn’t a lot of point to thinking about it.
I know that it the common etiquette to not speak ill of the dead. But I agree with you. It isn’t right to lionize them or demonize them. If you have something to say about a person, it shouldn’t matter if they are dead or alive, only if it is true and important in some way.
As for the dead just being inaccessible, that sounds right, too. Theoretically, isn’t it possible for some kinds of particles to move backwards in time? So they move to where what was, is. And they couldn’t do that if what was is not. Plus, like you say, people’s influence is not bound by their physical existence so generally, action continues after death in some way, even if the name is forgotten.
Your first point reminds me of an old George Carlin line. Someone asks him if he heard about Bill. Carlin says, ‘Oh, Bill, that a-hole.’ ‘Bill’s dead’ the other man says. Carlin replies ‘Well, he was a *well-meaning* a-hole’.
Maybe it’s guilt that drives us to put the dead on pedestals, as if we can somehow make up for our lack of appreciation for them when they were alive.
On your second point - I think your reaction (sensing the dead have gone somewhen) is a blessing. A feeling in this case may be more informative than a thought.
Mark
The one death I experienced so far, I reacted similarly.
I think it is important to remember the person the way they were without embellishment. I think that remembering the bad perhaps is part of the healing process too. Not holding on to it perhaps, but accepting and dealing with it.
Existence I guess has different definitions. But a person and the way they affected me stays regardless if we inhabit the same time space concurrently.
Thanks for sharing. Always enjoying the depth of your posts. :)
I think people might be misunderstanding. The particular thing I notice is not just focusing on the good, but creating good traits the person never had — an impatient person described as patient, and even worse distortions until the person being described is unrecognizable. (This has not happened with these two recent deaths, but happened a lot in other people I have known who died.)
Also, it’s possible to discuss negative traits or actions without gossiping. I sure hope that when Lovaas dies, criticisms of the harm he has done don’t stop, for instance. And yet the stuff I said when a comparable person (who had much influence and promoted making more institutions and putting severely disabled people there) died has been used to make me sound shockingly evil or something, so you never know.
Hi! these thoughts are really interesting. Regarding this:
“Why is it that most people process death so differently? Why does death seem to me almost as if it didn’t happen?”
I would like to comment about something you didn’t mention, the future. When someone dies, the pain I feel comes from the fact that now I know I will never interact with that person again, there will be never anything new said or done by that person, I will never be able to say something again to them. That’s very sad for me. With time, I can reach a state of mind where maybe I feel less sad, maybe it’s like what you feel, that they are just inaccessible, but I don’t feel that they are temporarily inaccessible, they are inaccessible for ever. That makes me so sad…
Anyway, maybe you will find my comment interesting, because you can compare what you feel with what I feel, that’s the only goal of this comment. I like comparing what I feel to what others feel, especially when the feelings are described as precisely as you do.
I’ve reread your entry and I think I “get it” now. This has nothing to do with God, but rather about making stuff up about people after they’re dead.
item #1: I don’t think that’s evil at all; the taboo against “speaking ill of the dead” is something I think of as more of an NT custom, something “political people” do. We might tiptoe a bit around saying negative things in front of people who *cared* about the dead person (lest they misunderstand), but criticizing the dead (especially in a constructive way) is definitely not a taboo among “my people” (for lack of a better phrase — not necessarily AS, just people who seem real to me), and we tend to see the automatic canonization of the dead (especially public figures who were highly questionable in life) as rather shallow and pointless.
(I could give some very intense personal examples, but maybe it’s not necessary.)
item #2: I can see things both ways, and I have found myself referring to dead people in the present tense.
It seems to make the most sense when talking about something they created — a writing, a drawing, photos of or by them — because in a way you’re talking about the aspects of that person which come through in that creation, and the creation is something which you can always re-experience and which continues to exist.
On the other hand, I am painfully aware that there is so far absolutely no known way of interacting with dead people as they were when alive. Does this make the person “different” to me, somehow? Well… only in the sense that there’s suddenly this huge load of sadness kind of dumped on top of my recollection of them… but they still mean as much to me as they did before. That can change over time, since I’m no longer interacting with them directly anymore, but the act of dying didn’t change who they are as people… if that makes any sense.
Maybe it would help if I put it this way: if any of my dead friends suddenly and unexpectedly came back to life, I would be overjoyed (to oversimplify the matter) but also prepared to deal with their imperfections just as before.
(Note: I tried posting this several days ago, but it hasn’t appeared… and other comments have. Hope this doesn’t end up as a double-post.)
I have the same reaction you describe as your #1. It has always disturbed me. I remember when my extremely racist grandfather died; at the funeral, everyone was gushing about what a good person he was. He was a good person in many ways, but he was terrible in others. All that mysteriously died when he died, and his good qualities got exalted into saintly ones.
My eldest daughter died two years ago (cancer), and I remember during counseling shortly before she died, I cried when I told the counselor that I wanted to remember her the way she really was, warts and all (and she had some serious personality/boundary/*pathy issues), and not gradually forget all that and turn her into some perfect little daughter-that-was. I guess I was thinking, that always seems to happen to everyone else, and I don’t want it to happen to me. Fortunately, it hasn’t. I loved her, and I miss her, but that does not seem to me incompatible with her bad qualities; and I don’t understand why other people think it is.
Have you ever read Orson Scott Card’s _Speaker for the Dead_? He tackles this very issue in a very satisfying way (it’s a science fiction/fantasy novel, not a how-to book or anything).
We really… don’t understand it either. We’ve run up against this before, too– not so much in explicitly being called evil and horrible for still acknowledging people’s faults and harmful deeds after they died, but we’ve held back our real opinions before because we were pretty sure others would be upset about the fact that those opinions hadn’t changed after someone died.
And yeah, it is incredibly disturbing for us to see the real person, the totality of their life, both good and bad, just… written out of the picture. I guess we’ve never really been in synch with the cultural attitudes around us, about how you’re expected to react when someone dies, on a number of levels. We used to worry about ourselves when we were younger, it’s in common memory, because we didn’t have what we thought were “appropriate” reactions to most deaths. Seeing other people’s reactions to death actually upset us much more than the death itself, sometimes. It wasn’t that we weren’t sad, it wasn’t that we didn’t miss the person or ever wish we had gotten to talk to them one last time or anything. I think that thing you describe, that feeling that you’ve just been temporally displaced from the person, might have had something to do with it; and also a feeling that death was a natural thing, part of a natural cycle.
In any case, though, I think our earliest memory of reflecting on this stuff was when we were 13 and at a relative’s funeral. And there was this prayer session where everyone talked exaggeratedly about all of the person’s wonderful qualities, and after each one, we were all supposed to pray for those same qualities in ourselves. And we remember just thinking how odd it was that no one else seemed to remember things like how the person could be really bad-tempered, how there was one family member they didn’t treat well at all, how they weren’t very patient with children towards the end of their life, etc. We didn’t hate them, not at all– we just wondered how it was that people seemed to forget or overlook it. I think we ended up concluding (at the time, not now) that they must really have been this perfect person and we were just overreacting to the times when they’d been angry at us and so on, and that to other people, those things all seemed completely reasonable.
Another weird thing that I don’t really understand about death is that some people seem to want to not just elevate the dead person into some saintly being they never were, but to present a much more happy-happy portrait of their life than was ever true. It’s like you’re not allowed to say honestly that someone struggled with a lot of unhappiness and bad circumstances; you have to “accentuate the positive” or something. I don’t know how widespread this is, but we definitely did encounter it when a relative (who had been abusive to us and to others, but also had their ambitions frustrated by sexism and ableism earlier in life, and was not really that happy for most of their life) died a few years ago. It doesn’t excuse their abusiveness, but hearing people talk about the person earlier in their life, even with the expected overly-positive distortions, made it pretty obvious that something had happened to make them give up their more nonconformist desires, and shove themselves into a “conventional” life they didn’t enjoy. But nobody seemed to want to put two and two together, they seemed to prefer the idea that the person really liked that “conventional” life.
Neither of those two things are weird, Amanda. In fact they make a lot of sense to me. We’re Orthodox Christian, and we believe that when someone finishes life on Earth, they aren’t really “dead”, one just cannot see them in an Earthly way.
The type of embellishment a person sometimes gets after death…….seems to me like others creating an alter personality for that deceased person…..a former known gossip as never speaking lies or unkind things about anyone………sounds like idealisation of that person. Now that said gossip is no longer around, people create their own “widgets” of what they want to believe about the person…..I think.
*Disclaimer* my mention of our faith was not meant in any way to disparage anyone of another faith or no faith or those in between.
I, too, am baffled by the things you mention.
I think I may have been a little traumatized by what happens when you don’t do mourning ‘properly’ and the demand to erase unpleasant memories, or at least never speak of them. It is confusing. And I agree, it is disrespectful, as it transforms a real (if dead) person into an imaginary person.
I’ve tried to post something twice now, and it has never appeared. Is it being held for unwanted content, is WordPress gagging because it was too long, or possibly something else? Suggestions welcome as to how I should proceed.
your article made me think about how we refer to dead artists/inventors/other important and famous people.
I often hear people say “Shakespeare is a genius”, yet almost nobody ever uses the present tense when talking about their deceased grandmother (e.g. “my grandmother was a great woman”).
I kind of believe that even people who are still alive exist partly in your head (how else could one lead imaginary conversations with them), so why should that change after they die.
Some people are afraid of reality, so they lie about it. Some people have gone through fear and have shed most lies.
We were three good friends. After saying goodbye to one of us, before her euthanasia, I said to the other one: “At least now we can just love her, undisturbed by her bitching…”
They stop existing in the now, but they just go on being a part of reality. All of that really happened and that fact does not stop.
Thank you for this post.
[...] Shift Journal, Autism and Aboriginal Society. Original essay (excerpted), from Ballastexistenz, There’s something about death I don’t understand. For further possible examples of Bateson and Lehman’s take on primary process—or, the world as [...]
I do not know if you have ever read any of the Ender’s Game series,by Orson Scott Card, but the first thing you said about death reminded me of one of the books. In his novel Speaker for the Dead, when someone dies they have the option of having a “Speaker for the Dead” this person comes to the funeral and instead of giving a normal eulogy “Oh they were so lovely, never mean, never had a bad day.” They tell flat out the good and the bad of the person who died. This causes interesting things to happen with the plot. Anyway, you just reminded me of that. Perhaps someday you will get a chance to read it, if you haven’t already.
I have read the series, if read means my eyes going over and recognizing each word. But I understood so few of the words or phrasings that I might as well have only heard a vague patchy recollection from someone else and only remembered that recollection in a vaguer and patchier way. Then the more I have learned of the author, the more repelled I have been from reading his work and being reminded of his hateful nature.
(Although I understand such hate is veiled in his works if it is there at all, I know that in addition to his homophobia –which I can deal with on some level for some reason — he reacts with near violent rage to anyone who suggests that life as a disabled person can ever be anything less than a terrible misery. And that kind of ableism being more a threat to my life — being more widespread and unquestioned — it’s hard to avoid thinking of it, and recoiling, when I think of the author. Even worse that he is moved to such violent rage by having a disabled son, which is so often used by so many as an excuse to be terrible to other disabled people who want to pursue the idea that our life is something other than wretched. Rarely have I been so moved to avoid an author’s fictional works to avoid being reminded of their hate, but the hate is so intense.)
Amanda, i also have had this sense of people ever since i can remember. When my paternal grandfather, who was very mean to me, died, i shed not one tear, and made no effort to even pretend that i was sad. People looked at my face and concluded that the face i was exhibiting was grief, when in fact i think i was scared my equally horrible grandmother would notice i wasn’t weeping. She assumed i was too overwhelmed to let my feelings out. She then engulfed me in a hug which left me just as distraught as if she had chastised me for not grieving. I just wanted to be left alone. I managed to keep my mouth shut throughout the whole horrifying funeral and subsequent family gathering, and avoid being grilled about how much i missed my grandfather, which i didn’t of course. I had told my father several days before, when he brought it up, that his father was unkind to me and i was glad he was dead. My father simply said, “I understand your feeling that way”. This was enormously compassionate of him. When he died a few years ago, i grieved that i wouldn’t see him again where we could actually talk to each other, or that i could hug him (as a child, my parents were the only people i could bear to have hug me, and later came to appreciate that. I hated being kissed by anyone, however, and they weren’t so compassionate about that!)After my father died, i also at times felt a good deal of anger toward him, because he had at times been pretty harsh toward me, and his decisions about inheritance had been based much on the fact that my brother had been “successful” and i had not. So, i had unfiltered conflicting emotions about him to process, where most others didn’t seem to see anything but the absolute angelic about him. He was an enormously giving person, but there were occasionally times that he seemed to echo his mother, in saying really horrible unkind things just out of the blue. He never knew about my Dx, though. I processed through all of that eventually. One thing another ASD friend of mine said to me a while back that might be relevant, is that our feelings don’t go through the kind of filtering that NTs’ feelings do. That makes a great deal of sense to me.
@First Lee, i think that besides being about making things up about people after they’re dead, if i read what Amanda’s saying rightly, she’s talking about being inside the temporal construct when you’re alive, and outside of it once you’re dead. My own take on that is that MATTER (a body) is what locks us into that, and that once we’re disconnected from that, the person is disconnected from linearity. Unfortunately, the deceased person is also pretty much locked out of relating to other people, as well. It has seemed to me, from what i’ve read, that you don’t have to believe in God to believe in temporal non-linearity, as there are many physicists who do so, at least do so without believing in God as popularly conceived.
I haven’t had anyone close to me die, but for years I had difficulty comprehending why people used the past tense for a deceased person, didn’t get it until maybe age 15, and still have trouble with that convention. While linguistically I do that similarly as you describe, my thought processes behind it seem dissimilar.
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