Healthy outlook > Mortality

It is something that I am at peace with, Im 54 and see that I have about 25 years left, so I will make the most of them. In the past 4 years I have seen both parents die in similar circumstances in hospital. I know two things, first I don't want to die in hospital, I want to die feeling I am in the world, even just sitting on a bence in the fresh air. Second I do not want to go into a care home, I will end it all before then. The last 4 years have been hell and after that  I would see it as a release, no more anxiety, no more fighting to have a normal life. 

I am not sure whether or not being Autistic makes a difference about attitudes to the "D-Word".  I do not profess to be "Autistic Expert".  All I can reflect upon is what would it take for me to talk with someone about this topic.  (By the way, I am not saying that I have "finished" mulling over the "D-Word" to the fullest extent ...but I think that I did have quite an early years head start in this arena).  That is what I shall try to describe.

What I can imagine is that Autistic folk might tend to be more direct, enquiring and inclined to be pragmatic on this topic, often at an earlier age than others.  This outlook might mean we do not come across as subscribing as strongly to the traditional taboos which surround the "D-word" subject matter.

If so, maybe, we are inclined to be those rarer people in society; the ones who are less likely to cross the road to avoid risking saying the "wrong" thing to somebody we are aware have been recently bereaved?

for instance, having lived in a couple of non-European countries; I found that I was at ease with the more direct approach shown by those communities towards the "D-word".  I respected those communites for being more likely to say what they needed people to know (low use of "D-word" euphemisms) to highlight the support they would welcome, to include and by fully supported by their wider community as a natural assumption.  (I am not so confident the non-Autistic members of my family experience that same "at ease").

Your post reminded me of a Victorian childrens' book which an older relative gave to me when I was ...maybe 7 years old? 

It addressed explaining the "D-Wrod" (Victorian, Christian perspective) to a child audience.  I wonder, as an adult, what prompted them - why they chose to give me the book at that age.  There was no fuss or introduction made as they handed the book.  It was not in the context of anyone I knew being ill at the time (nor anyone I knew having fully explored the "D-Word" around that time). 

I think it was merely a rare pragmatic adult, taking the trouble to notice how direct my own World, outlook and use of language was already naturally set.  Having reviewed the text of the book as adult; I think they had found and shared a highly appropriate match - the style of the story, the directness of the child main character's mode of language and manners etc.   

They knew my nuclear family were raising me in the Church of England tradition.  However, I do not recall (and I generally can rely on my recall, certainly of 3 or 4 years old onwards) my having raised related "D-Word" questions with my parents, other older relatives or teachers.

My feeling at the time (quite straightforwardly, not of strong emotion), as I read the book to myself while at their house, was that the relative giving me the book believed in children having important information (like the "D-Word" exposure, before it was a surprise encounter among people I loved.  That the natural order of things should be pondered upon (before a pet were to demonstrate the "D-Word".  That I should be able to derive comfort from an early age of having carefully explained to me what to expect in our family's / cultural / religious traditions if somebody I knew were to illuminate the complete process surrounding the "D-Word".

At the time I remember drawing comfort from the aspect of the little hardback's story showing that young or old, rich or poor ...all find the concept a bit of a puzzle, not an easy conept, and that a range of strong emotions were to be expected (and that each person might well react / behave uniquely on this subject).

I liked the story's grounding / relatability to the natural World.  Not so sure I quite grasped (at the time) the spiritual elements (it didn't scare me though - there was just enough information to give it a context within other things I already understood about Church).  But it was reassuring to be able to consider the recollection / understanding of that book's treatment of the themes of the "D-word" ...as the prospect of needing to think more about the subject as I real World experiences were to cross my path.

My summary, having read the story as a child, was that I felt good about the fact the older relative had respected me enough to find something suitable for me to digest on the "D-Word" (maybe not all children of similar age).  I knew they were (silently) signalling to me that if I were to have "tough subject" worries or questions - they were available to field those areas of life (if and when I might need to do so). 

Also, the style of the story made it clear to me that I did not need to concern myself about stepping around euphemisms - the older relative was prepared to talk to me straight about real things.

Certainly, for me,  (maybe particularly for Autistic me?) that was a really important thing to understand and about which to feel confident. 

By opening the (silent) conversation via a book with no fuss - I knew that I did not need to discuss anything there and then necessarily, and yet they had (by their actions) also ensured I knew the "I have a question" door was definetely left ajar - where I knew how to find it as necessary as a "safe space".  (By that example being set for me, I have tried my best to pay that forwards to other people at different points in their life, particularly if someone is young / young at heart).

I am not going to include a link here to story (because if you happened not to be in the right frame of mind and just jumped to the link on autopilot - without giving it too much prior consideration - that potentially would neither be kind nor fair - also there are different religious / cultural / mental health perspectives to consider).

However, the little Victorian story book is now available, for free, as a PDF online.  Therefore, if you are curious, and in the right space and place in yourself - I think you would be able to use the following information in an internet search and judge for yourself what was helpful in setting the "D-Word" scene for the young child (Autistic) me:

Little Dot by Mrs. O. F. Walton. [London]: The Religious Tract Society, [1873]

Yes I agree.  I think its fear of the unknown really dialed up to 11 isn't it.

I suppose I struggle with the concept of change in general.  I'd like really, for all the things to stop changing.  I'd like my parents to stop aging, my kids to stay as young and innocent and untroubled as they are.  And for my wife, and friends, and her family to stay well as they are, and not age.

I find anything which reminds me of changing and aging effects that sense of permanence which my mind seems to constantly strive for.  One of my absolute pet hates are those clickbait stories about famous film stars from the 80's / 90's etc "see how much Harrison Ford has aged!" etc - makes me feel very anxious.

Yes I agree.  I think its fear of the unknown really dialed up to 11 isn't it.

I suppose I struggle with the concept of change in general.  I'd like really, for all the things to stop changing.  I'd like my parents to stop aging, my kids to stay as young and innocent and untroubled as they are.  And for my wife, and friends, and her family to stay well as they are, and not age.

I find anything which reminds me of changing and aging effects that sense of permanence which my mind seems to constantly strive for.  One of my absolute pet hates are those clickbait stories about famous film stars from the 80's / 90's etc "see how much Harrison Ford has aged!" etc - makes me feel very anxious.

Sounds like we're in a very similar place.  I have two young girls, and my eldest autistic and with whom I do have a special bond and understanding, I worry for her especially and sometimes almost feel like I want to push her away to protect her.

I have an odd relationship with my parents, without wanting to sound heartless I'm not sure what I feel about that side of things - I find them hard to be around, they really affect my mood.  But then I feel guilty for not feeling a more "natural" feeling towards them here.  The idea upsets me I suppose, but I'd struggle to articulate why beyond the idea of them "not being here" upsetting me.

Thanks!

Interesting.  Now I've had kids (and my daughter herself is autistic) I feel like my goal is an age where she / our kids / my wife don't need me any more.  Hopefully I get to see them settle down and be happy.  The idea of anything happening before that time is definitely something I worry about.

I do suffer from mild depression yes, and anxiety.  Having treatment for both but I find it a frustrating process and that my therapist perhaps isn't the most effective, but then I become self critical / analytical and assume its me being "impossible" to help!

Yes I know what you mean, its a horrible thing to see the way some people go.

Sorry to hear about your sister, that must have been so tough for you and your family.

I know what you mean about parents also, I had a difficult relationship with them (my mum certainly, as she had an alcohol dependency).  I was always very fearful of anything relating to their health.

As I've had my own family and am a bit older now, I found I worry more about my wife / kids of course.  It makes me feel guilty at times that I neglect to think about my parents enough... I find spending time with them and seeing how old they are quite difficult I have to say.

Very interesting, thanks for sharing.

Here's an interesting book that might float your boat.

https://en.wikipedia.org/wiki/Destiny_of_Souls

I found all Micheal Newton's book ringing true for me.

One would have to include the other: the thing and the no - thing.

They could not exist without each other!

Indeed, there must be existence for there to be nonexistence and visa versa.

It really is turtles all the way down.  (wiki that to blow your mind).

to add to this.. I later, in the late 80s experienced the "Gateway" program from the Monroe Institute that deepened my experiences and led me to many more interesting experiences.

When I was 17 I read "The Divine Romance". In it Paramahansa Yogananda talks about going out of his body and being somewhere else and, what we call today, bi locating. I was living as a runaway in an attic with a bunch of draft dodgers (Vietnam war) at a Unitarian priests house.

I read there was a chant to clear the way for Perspicacity. I sat and chanted it . After awhile I started to feel the word and the action of the saying it become one and becoming something more: I observed it as apart from my self,  an observer.

Then I found I was across the room looking back at myself as I sat chanting. It was for a few moments I saw myself there. but it gave me the gift of knowing, beyond doubt, that the body was not the end of the conscious mind, it was a product of the conscious mind. 

After that I was not afraid of dying. To clarify. I don't welcome it but I am not bothered that it will, eventually happen.

It also cured a great deal of FOMO as it dawned on me that I could come back over and over as often as I like to a new baby body to gravitate towards whatever I felt drawn to, without worrying there would not be enough time. I realized life, in the form of sentience,  was eternal.

Just to add to that, I wonder if because we need predictability and routine that the uncertainty of the D word is too much for us to understand??

Just a thought 

I too worry about there being nothing once it happens. I worry that my boys will feel sad also. I worry that my youngest who is autistic won’t have his rock anymore. I’m not so bothered about the D word but it’s the uncertainty of not knowing if my children will deal with it in an ok way. 
Im terrified of when the day comes and takes my parents away also, I just don’t know if I would be able to cope with that. 

The D word is on my mind a lot. I lost my sister at a young age and it was horrible to see. She suffered and you could see it and ever since then I've thought about it a lot. The idea of my own D word doesn't bother me so much, I'll be at peace them so that's something that actually brings me a comfort. My parents though, the idea of losing them terrifies me and caused my mental health problems to start a few years ago. I struggle to process it.

I used to obsess over it. Not being dead, but the process of dying. I've watched family members die slowly of illnesses and it's literally torture. So I bought a lethal dose of a medication online and put it aside in case I develop anything terminal. I almost never worry about it now.

I remember going through a phase in my twenties when I was really worried I was going to die before 30 for some reason. It wasn’t death itself that worried me, it was dying before my time. As it happens I am 34 now. 

Do you suffer from depression? In my experience, these thoughts can go hand in hand with it.

Same. There are times I can’t wait to be dead.