Experiences of presence; Symptoms, spirits, or ordinary lives?

1. Experiences of presence; Symptoms, spirits, or ordinary lives? Jacqueline Hayes jacquelinehayes@fastmail.fm

2. Experiences of presence in bereavement • Voice • Vision • Touch/tactile (e.g. pressure) • Smell • Taste (?) • Feeling of presence

3. Common experiences • Estimates between 50% (Rees, 1971) and 80% (Wiener et al, 1996) • 90% of widows in Japan (Yamamoto et al, 1969)

4. Language and consequences • Language representing this: “hallucination” “symptom” “pathological grief” “illusion” “cognitive error” “awareness” “continuing bond” “continuing relationship” “continuing presence”

5. This study • Diverse bonds and varied rel/cultural backgrounds and type of death. Systematic investigation of meaning and consequences of experiences of presence • Methodology: Ethnomethodology, Conversation Analysis, Discursive Psychology, Joint Analysis • Narrative biographic interviews with 17 participants in the UK

6. This study • What happens? • Meaning? – where does the meaning come from (sources of meaning)? • How did people make sense of them using religious/spiritual ideas and other semiotic resources (e.g. Psychology)?

7. What consequences do the experiences have for the bereaved?

8. What the literature says... • Helps a person cope with grief. Better sleep and less lonely (Parkes, 1972, Conant,1996, Klass, 1999). • Can help to resolved ‘unfinished business’ in the relationship (Klass, 1996) • Sign of ‘pathological grief’? (Kersting, 2004; Baethge, 2002; Parkes 1965)

9. Functions(Hayes, 2011) • Soothing • Help with practical task • The feeling of absence • Continuing fraught relationships • Mixed/ambiguous

10. Soothing - Samuel Samuel spontaneously smelt and tasted the food his grandma cooked for him several times after her death. This would always be at a time he was particularly stressed. The smell and taste helped him to feel calmer. He told me how in the past, at times of need, his grandma would cook for him, they’d eat together, and she would help him to find a solution to his troubles. Smell/taste was a continuation of his grandma’s care in a time of need.

11. Sarah Sarah: but it was just, .hh::::::::::: I thought, "can I do this?" heh=heh JH: Yeah Sarah: Erm, anyhow, I thought, "well, I'm just gonna have to do it!" So I did it, and, but it was really, really really difficult. And towards the end I was only just holding it together. JH: mm:: Sarah: So I went back to my seat, and I was almost physically shaking with the effort of having to, to do this and remain (.) together while I was doing it. And, at that point, I felt, I had, almost like, a some sort of a not, a, a pressure on my shoulder, there, and I just thought well, ah, that's Benjamin and he's saying ((claps)) "Mum, you've done it," JH: mm::

12. Sarah Sarah: you know, and it was (.) so strong that I, I put my hand up to feel (.) his hand JH: aww:: Sarah: there, which was (.) incredibly powerful, and has never happened, never happened before JH: Yeah Sarah: And that really sort of, you know, said to me (.) that he's, he's with me and he was, he was there with me at that particular very difficult (.) moment JH: Yeah Sarah: and afterwards. JH: Yeah Sarah: Erm, and that was incredibly helpful and comforting

13. Practical - Isaac Isaac: yeah, I, I, ah, I- erm (2.0) she has, er, she had, in the sink, (1.0) what's it called now? I'm, the, the name's gone, er (2.0) you get rid of your rubbish (1.0) JH: waste [disposal, yeah, yeah] Isaac: [waste disposal, sorry, waste disposal] ((sips drink)) and erm((sips again)) I was always, forever fixing it for her, she’d put down something, a spoon or whatever, and it broke

14. Isaac (1.2) anyway, my sister said can you come across, and when you come can you fix the (0.2) waste disposal JH: mm=hmm Isaac: so I said OK, yeah. (2.0) and like, there's a button, at the back (0.8) which I know now (0.8) but I didn't remember it as of the time. And as clear (0.8) as (1.0) I'm speaking to you (2.0) JH: mm Isaac: It sung, "keep going Isaac, it's there“

15. Resolving unfinished business Aggie’s boyfriend died after a short illness, a year before the interview. She wasn’t expecting his death, but later found out that he knew he was dying. Prior to his death, her boyfriend had broken up with her and she hadn’t understood why. They were reconciled shortly before his death. Since then, Aggie hears her deceased boyfriend’s voice on a regular basis. Aggie visited a clairvoyant and believed that she was having contact with her boyfriend’s spirit.

16. Aggie Aggie: some of it is um (.) things (.) that I would easily hear him say JTB: mm Aggie: but things like “I’m sorry” an “now I understand why things happened” (.) he never said that hehheh JTB: hehheh Aggie: he never properly apologised for everything JTB: mm Aggie: so: (.) because the last part of the relationship (.) went quite badly, like he knew he was dying an he pushed me away JTB: mm

17. Aggie Aggie: an I just thought (.) that he just didn’t care anymore (.) an then just before he died he broke down and got real upset and said “I want to be with you” an then like “what did I do?” (.) because it had been like six months JTB: yeah Aggie: of: (.) a complete nightmare (.) an (.) he never said sorry for it (.) really (.) like not properly said sorry (.) an: like he- he’s- st- telling me he understands why everything I’ve done, why I did it (.) an he never understood nothing (.) three four years he never understood anything (.) so (.) mm (.) heh (.) so

18. Aggie: he got incredibly upset with the stuff that was happening to me an (.) an something came up an I had to be involved with the police an stuff and that made him incredibly set- upset an he ended up in hospital JTB: mm Aggie: so it was kinda- not like an asthma attack but it’s like (.) he can’t breathe an his er chest was tight an he needs attention like he really needs steroids or whatever JTB: yeah Aggie: so I put him in hospital for that so for a long time I felt “oh I’ve killed him” cos it was only (.) six weeks, two months after (.) like before he died when all that happened so (.) I kinda blamed myself for a lot of things but (.) I’m kinda letting go of a lot of that now

19. Aggie’s unfinished business • Conciliatory and healing • Resolving confusion about the meaning of their relationship • Concreteness of hearing the voice + spiritual meaning – power of this • Transformative • Guilt and self-forgiveness

20. A sense of presence, a feeling of absence Aggie: once (.) I like (.) really reallyreally thought he was there like could literally feel him JTB: mm Aggie: and could hear him and then I woke up and turned round an I jus:t (.) couldn’t stop crying an I was like “oh god” hehheh (.) so it was a bit (.) cos it feels like it’s actually JTB: mm it felt so real Aggie: yeah yeah (.) so: (.) mm

21. Continuing fraught relationships Linda heard the voice of her deceased husband. The voice insulted her – “you’re fat, you’re hair is a mess” – and criticised her parenting. Linda made sense of it by referring to their relationship before his death – they “weren’t the happiest of couples” – and to his personality before he died – “he was a very angry man”, “he used to have a terrible terrible temper”.

22. Julie Julie heard the voice of her deceased mother almost daily. The voice called her name, insulted her, and told her she should kill herself. Julie found this situation highly distressing. Julie made sense of this voice within the context of her relationship with her mother before her death. She had felt continually rejected, and unloved by her mother. She always felt that she favoured her brother and did not really want Julie. Julie understood her experiences spiritually, but although she was a catholic did not draw upon Catholic teachings to understand what was happening. The voice after her mother’s death seemed to crystallise in words an underlying dynamic to their relationship. The voice continued the rejection in their relationship, in an altered form.

23. Matt Matt: I was on an assault course for one of my army qualifying courses and I fell off a wall, a ten foot wall and subsequently I slipped some discs and was in quite a lot of pain. If I'd have left the assault course and not have completed it I would have failed the course which would have meant that I wouldn't be able to qualify. And I was lying on my back at the base of the wall in quite a lot of pain and he said,

24. Matt my father said to me "You're a loser don't even bother carrying on" and he was just telling me that I wasn't ever going to get to the army anyway, that I was doing it for all the wrong reasons. But then I realised I wasn't and so I got up and even though I had a slipped disc I finished the assault course.

25. Matt • Voice introduces doubt of Matt when he needs self-belief/determination • He had made sense of why he heard this critical voice – past dynamic • Felt threatened and jealous of Matt – tried to “impose his values” on him. • Had a way of dealing with his father in life – rebellion - which helped him deal with the voice and transform it from destructive to source of motivation.

26. Conclusions • Consequences depend on nature of relationship to the deceased, and how the bereaved respond to this dynamic. • Exps continued an aspect of the relationship & were entirely appropriate to the relationship • Helped with emotional/profound issues or accomplishing ‘everyday’ chores • Highlight the loss or continue most difficult parts of the relationship

27. Conclusions • Healing potential as well as destructive potential • Look at individual cases to understand the consequences – and changes in different circumstances • Therapeutically - can work on the meaning of this relationship to help the person transform the consequences of a difficult voice

28. Selected references • Hayes, J (2011). Experiences of Presence. PhD thesis. (book forthcoming) • Rees, D (1971). The hallucinations of widowhood. B. Medical J., 4, 37-41 • Klass, D. (1996). Continuing Bonds; New understandings of grief. Washington; Taylor & Francis