h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

(if I'm not infringing on your personal space, Jack)

Of Course there will be pain and sadness after you've gone - that's part and parcel of being a loved human being. *I* don't know you personally, but I bit my lip a bit when I read your first entry and -in a moment of selfishness thought - "Damn! That's someone else I may never get to know as well as I'd have liked."

BUT... you'll leave behind you an enormous, rich tapestry of good memories, laughter, love, affection, all that stuff, too, don't ever forget that.

That huge great gift of your "self" that you've shared with all those who are important to *you* will somehow compensate for the pain of their personal loss, eventually. All those who love you will feel happy and proud they've known you, because they have loved you, and you've touched their lives.

I'm not known for my tact and I cannot imagine how you may feel from day to day - but I hope I've said something of use. It's so easy for me to say "Don't feel guilty that you may cause pain when you die" I've no right to deny how you feel.

What I can say hand on heart is "Be proud of yourself that you've given so much joy and pleasure to so many people"

Hear hear!

Death stuff is incredibly difficult to talk about, i am one of the worst, i lost my dad when i was 3, grandad at about 8, mum at 11, then went to live with grandma who died a year later. No brothers or sisters, aunts, uncles etc, so have been pretty much alone most of my life as far as family is concerned. So friends & partners have become very essential, also pets. I totally cracked up when my last dog died.

It's good that you say you are not afraid of death itself Jack, 'cos most of us are. Fear of the unknown, fear of being in pain, fear of being alone when it happens.

But it can happen any time to anyone, i personally would rather have a reasonable idea when & how it's likely to happen & make arrangements as far as possible for afterwards to try & make things a little easier for those left behind. And hopefully the hospital care means they will adjust medication compassionately so that you aren't in any pain & simply drift away. But while you are still with us, i'm sure i am not the only one hoping you get as much out of life as possible, including the friendship of people who may never meet you in RL, but know a part of you through here & appreciate you.

zdt

>>This Viking isn't doing you many favours by coming out with stuff like that, really, is he?<<


People say these selfish things because it's so hard to concive that at some point you are going to have to let go, and it's going to be a lot sooner that you thought it was going to be.

I'm quite sure that I've said a few selfish things, when I've been in worry wart and upset mode. I haven't meant to and probably if I'd thought things out with a clear head then I wouldn't have said them. But when you are under emotional stress such as this, it's not easy to think with a clear head

I'm not sure that made sense

It makes perfect sense, what you said, Cal

But it still seems to me it doesn't do anyone any favours by immediately bemoaning how *I* feel when they tell me something obviously distressing to them - if you see what I mean!

In an ideal world, it'd be a deep breathe and "Gosh... that's heavy mate - how do *you* feel about it?"

But like you say, when one is stressed, etc (I like that phrase wart and worry mode, btw), it's perfectly natural to immediately say the first thing that comes into one's head. I should know, I a lot, quite unintentionally.

Just as well, really. If we all thought carefully and detatchedly about what we said before we said it, the world would be a lot more silent and a lot less interesting

But possibly a little less stressful, too?

sorry Evadne I didn't mean when I was first told

I think I was quite composed then, if was afterwards that I was upset


and probably afterwards that I said a couple of things that I maybe shouldn't have done.

What I mean is I didn't start saying selfish things until it had time to sink in, if you know what I mean

you've lost me a bit, here Cal!

I thought you meant exactly what you've just said anyway: - that people *do* tend to say possibly thoughtless things when confronted with upsetting news - because it's human nature, it's normal, it's something we all do - and 90% of the time, *totally* unintentionally!

I reckon if we all lived text book and behaved rationally, detatched and ever aware of how we *might* possibly appear to others - and every one of us has a slightly different perception of everyone else...

Well...

We'd either lose our own uniqueness and all end up like clones of each other (a grim thought)

or

be too scared to even attempt communication incase any or all of our interactions *might* upset others! (even grimmer!)

It wouldn't be a life then - it'd be a very grey existence.

Don't apologise to me love! (I assume that was "sorry" to me personally, rather than just a general sort of "sorry"? Though for the life of me I don't understand why you feel you'd need to... if you see what I mean) If I ever felt hurt or slighted by anyone, I'd be sure to mention it - and hopefully come to a happy conclusion for all parties.

Nip over to my PS if you like because I'm a tad confused, I must admit!

Don't let the loveless ones sell you a world wrapped in grey

RF

Can you whistle any better than you sing RF?

What song's it anyway? I seem to have missed out everthing since about1984 and never quite caught up

It's XTC's "Wrapped In Grey" - a great lyric, IMHO.

Here: http://chalkhills.org/reelbyreal/s_Wrapped.html

Also, the only song I know that has lemurs in it

RF

Oh, she says dismissively.

Be Bop.

Lemurs?

Really?



I take it back. There's not just lemurs, there's poetry in that too.

Nice one

I like it. XTC wrote a lot of good lyrics. Someone has even written a couple of guide entries about them!

A3100285
A3327068

RF

This is slightly off topic and I could ask with another thread...

How many of the folks here could hope to possibly be helped or prevented from having their disability if stem cells could be applied or some genetic fixing could be done before birth?

I do not neccesarily want to start a new topic but if people are surprised how many have problems they may be as surprised how many people *might benefit in the furture if the science progress as guessed in those two areas.

*holds up banner* Fight disease not each other!

A slight correction to something Teri attributed to me saying.

I never mind talking about problems. I did it before I was less mobile and continue. I never mind a person with problem if they are trying to find a solution. The key is finding a solution , I do not listen to endless whining without reason or intentions when something can be done. I do not complain about being easily found and I do not BS so those not really wanting to hear what I think soon wander off!
Not that I am always right but I am availble to lend an ear or a different perpective if asked.

When I was stil invisibly ill people would say well you look great or fine to me. Some meant it as a challenge some just ment what they said. I always said thank-you , I'll take that as a compliment. The ones that meant it that way smiled. The ones that were challenging my pain and reality were baffled.

What I minded during the *invisibly ill years was people assuming and also asking me to do things that took time since: "I was'nt doing anything"(= looking Ok but not not working). These things involved waiting in line for tickets, shopping and other energetic activities. Very disturbing to me the sort of stamina I would have used at working if I could!I loved working so it was insulting Giving up working was traumatic.

On the flip side of that
A very good business did evolve that kept me going for quite a while when I was more mobile and invisibly ill. I talk about it at the Nation. It involved waiting for deliveries and services at peoples homes and house-pet sitting. It got me out of my home shared with 4 others and into new locations for a week to several months at a timeI had previuosly been used to travel and loved pets so it was perfect for me at the time.

I've just discovered this!

Arthritic for 15 years now. Been into the pit of dispare about the bones and into it again with reproductive problems.

How do I cope...

Pain killers and the damping down disease modifiers...drink too much...put that all aside and get on with life with a beautiful 6 year old adopted child.

As Simon Drew (http://www.simondrew.co.uk/) put it on a card I saw once...

Optimist - There is always someone worse off than yourself.
Pesimist - There is always someone else better off than yourself.
Cynic - There is always someone else...
German - Always there is someone off better than...


Non Carborundum Illegitimi

turvy

Welcome turvy!

Abbi - re the genetic thing... for me, my initial gut and emotional response is I'm dead against it, The thought of genetic tinkering makes me heave. But as I say, that's purely an emotive response on my part.

In all other animals species, it is the fittest that survive - I think nature in her own cruel, inimitable way weeds out the runts, humans included. And that would include me, too. In another culture, in another time, I wouldn't have survived my first five years. If I had have survived being virtually blind then the throat infections would have carried me off by the time I was 15.

If by some miricle I survived them, I certainly would have been carried away when I gave birth the first time, at the age of 30 - had I survived the appendicectomy at age 21, that is!

It's not that I don't appreciate the miricles of modern medicine - on a personal level, of course I do. I wouldn't be here, for starters.

On a *general* level - and this is a broard, sweeping statement, which acknowledges the human desire for uniqueness and survival, but in this case, does not include that desire - then no. I'll stick by my guns and say let nature take her course, and let a veil be drawn over stem cell research until at least a time comes when we've got the hang of how to control or cure the current ailments we have in the world. If that were done, then the problem of passing on an inheritable illness would be unnecessary.

You're right - it's a very emotive subject, and I'm not sure if this thread is the best place to discuss it; after all, we all of us here have an understandably biased desire to have a better quality of life.

We're sensitive plants, and possibly what we discuss intellectually may well be taken personally - hurtful enough to accept when you're firing on all four cylenders; devasting when read if you're having a vulnerable day. At the best of times, it is difficult to remain detatched. I know, that I simply couldn't cope with such an intense subject on a thread that is offering an opportunity to share coping skills.


F19585?thread=1374495 may possibly be a better bet?

>>
When I was stil invisibly ill people would say well you look great or fine to me. Some meant it as a challenge some just ment what they said. I always said thank-you , I'll take that as a compliment. The ones that meant it that way smiled. The ones that were challenging my pain and reality were baffled.
<<

Abbi, I'm still pondering that after reading it earlier. I get that alot from people and my most usual reaction (whether I show it or not) is that I feel minimised - as in 'are you sure you really meant to tell me that you're unwell because you look so good' . I've not usually seen it as an intentional challenge as such because people saying it are generally people I'd expect kindness from. But it does come across as ignorant. It hadn't occured to me that people might mean it as a compliment. I'm still trying to decide if I'm cynically deluded or you're naive

This post has been removed.

As far as Kea saying-
"It hadn't occured to me that people might mean it as a compliment. I'm still trying to decide if I'm cynically deluded or you're naive"

For me I'm Both at times!
I did feel mimimized at times, which is my point.
That was/is my coping skill.
Take it as a compliment (it actually is in some cases)

It was better than spending time wondering what did they mean????
It's a waste of time worrying about what most people think.
So Yes ,it can also be an uneccesary and unguarded comment from an ignorant speaker.

**********
More Coping;
Same as the question how are you?
It can be an irritating unfeeling hypnotized greeting rather than a genuine question.

I answer Bad day -good day- OK * IF they are really asking.
I love saying this is a good day when it is
Mostly I consider "how I am " emotionally and mentally rather than physically because the physical is craptastic.
My mood on the other hand varies


**********
Sorry but a Small footnote on dna/genes,then I will hush about it Ev Cake
This IS about coping in some families.
I certainly do not advocate throwing the baby out with the bathwater.

I think the cell or dna material will come from our own bodies eventually. I mean to lessen suffering of those here and those to come not eliminating those to come.

The disease in the younger generations has come on more quickly and damaging. Nobody has made it past 56 in my generation so it is not a reasonable hope for me. It's about the younger ones, being able to delay or diminish the damage in our family in the future.
Thanks

Craptastic I'd forgotten that word.


>>
Take it as a compliment (it actually is in some cases)
<<

Yeah, that's the one I'm still trying to get my head around, wondering if I've just missed that people were actually being kind all this time


I find the 'how are you' thing difficult too. Mostly people don't really want to know, but sometimes they actually do and I've had to learn to stop and watch for cues that they are interested.

I have difficulty saying I'm ok because people seem to assume that means I'm totally alright

Just alot of ignorance generally really.


I have a few key people who get the whole thing which is a huge relief. I have other people in my life including family who've never had a proper conversation with me about my disability It just seems to hard for some people to deal with. Plus the fact that I don't look disabled at all makes it hard, but people can always ask, they just often don't.

Take each day as it comes at you.