Wish everybody would read this

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Thank you...

Jim
 
So true.......
 
I've heard all those things, especially the you are so strong, I don't always feel strong.

Janie
 
Thanks Big Mark!
 
im so with you on that.
 
Yes, I can relate! Now I know how to respond. Thanks.
 
Thank you, Mark. This is all ssssooooo true.
 
Three that I cant stand:

-"Don't give up keep fighting"
- "You don't know maybe they will find a cure"
- ""Who knows you could get hit by a car and die, nobody knows and everybody dies, or other people you know may die before you from a heart attack..."

I said it before, it seems we spend most of our time comforting others when we are the ones wasting away - on the fast track
 
It might be interesting to compare notes on what each of us hear the most. I get a lot of:
-stay strong and keep fighting!
-Don't give up hope.....I read (or heard) that they are real close to finding a cure, I will send (email) you the details. Like I haven't read up on it.
***The one that really pisses me off is "what is ALS", and they want me to describe the illness and it's progression. If I could talk it would be more tolerable.

Dam Humanoids Anyway!
 

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It's a very good read Mark. I just think with cancer or ALS shouldn't be as offended or mad when someone tells them to Stay strong and Keep fighting. It's our way of saying "We love you and what you to stay with us as long as possible." It might be a poor choice of words to say but we mean it with the best of intentions. People really do care. They just honestly don't know what to say at times.
 
UGH stay strong and keep fighting - I hated that one too!

I think it especially got to me because in his public face Chris would tell everyone that is what he was doing and they would think he was so strong and I'm sure some thought he was going to either beat it or go on for so long. He would even tell me I had to say this to people.

In reality he was assisting the disease at every turn to take him faster as his idea of fighting was to use energy up way faster than taking calories in (he was in starvation mode for more than 12 months), and to insist on taking risks and therefore having serious falls and injuries.

I believe accepting is the best way of 'fighting'. We have said this over and over - conserve energy to enjoy what you have and live each day to the best of what you have.

People don't understand this so I hate the fighting crap because we have to accept terminal and fight for quality, not think we will somehow beat the monster the way they mean. We beat the monster by making the most of what we have while we have it.

The other one I hated was people who would see me about once a month and would hopefully ask how Chris was doing. It's hard to describe in text because it was all about tone of voice. They were asking, hoping I would say - yeah we are doing pretty good now! I would have to explain that he had lost whatever list of functionality since the last time they asked and explain again that it is a terminal progressive disease, so things are worse this month. They would give that horrible look of pity and say yes I know but I thought I would ask .... I know they meant well, but actually it was rough having to list all he had lost yet again. (Chris was rapid progression and passed 11 months after diagnosis so the list each month was long). There were others who asked if I was ok, and how were we managing which was a very different question.

Lastly I hated the good old - I hope you are taking time for yourself and taking care of yourself ... Usually said by random people who were not offering to help in any way, and who would have no concept of how the hell I would do this. I learned to smile and nod as they didn't actually want to discuss, they were just filling embarrassed silences.

The other one I hated for me was - let me know if I can do anything, and give me a call!
CALS just don't have the energy to organise other people, let alone think up social occasions and call someone.

My favourites that people did say or do:
I had many people who would just send me random text messages frequently with a short line of thoughts for me or a smile. They always warmed my heart and I didn't even have to reply if I couldn't.

People who would call and ask - can I do this or that, actually offering something specific. When I broke me toe a girlfriend had been offering to do my shopping for many months and she then insisted on it and every week I would email her a shopping list and she would turn up with the stuff and the receipt. Then I would internet transfer the money to her.

Friends who would buy a coffee and cake and visit me to share with me. That way I didn't have to go out, they saw Chris and understood where he was at, and yet gave me a nice little break time.

Friends who organised working bees and turned up en masse and did so much stuff in a few hours straight to keep my property limping along.

Thanks for sharing Mark, that list was really good and it all made sense to me!
 
>I think it especially got to me because in his public face Chris would tell everyone that is what he was doing

i respond w/ 'as expected' and IIWII ("It Is What It Is!") ...
 
My FAVOURITE is 'you look fine'.
That one really upsets me because I'm not 'fine'...I don't think I will ever by fine again.
I tend to not tell many people how I'm really going...not sure if the general public can 'handle the truth!'.
Oh yeah...I speak fluently in movie quotes! Plus that's the only movie Tom whatisname has ever been any good in. Maybe with the exception of The Outsiders.

Thanks mark, not only is all that stuff not quite what I need/want to hear, but it reinforces that I need to 'do as I would be done by.' Because as Skipper says, sometimes it's really hard to find the right words.

Is anything easy these days?
God bless, Janelle x
 
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