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racontesse6 karma

I was 43 when I was diagnosed. It was devastating and I'm still adjusting to my significantly reduced lifespan and the continual deterioration of my body.

I'm grieving on two levels. First for my life and second, for the loss of function.

I overcome it by living day to day as much as possible and focusing on the things that are possible.

Continuing with my writing ensures I'm still engaged with life and producing something.

I've had a lot of support from my partner, my family and my friends.

It ain't over 'til it's over. So I'm gonna keep going 'til then.

racontesse4 karma

Depends on what you like of course but I'd recommend the books I've mentioned in my previous comment.

I'd also recommend Stella Gibbons' Westwood and Cold Comfort Farm. B.S. Johnson's Christie Malry's Own Double-Entry. W.G. Sebald's Austerlitz. And finally, one of the funniest books I've read Three Men in a Boat by Jerome K. Jerome.

That would cover most bases for most tastes.

racontesse3 karma

Oh my god there are just so many. William Makepeace Thackeray's Vanity Fair is the first book that comes to mind. I thought it would be a typical classic but was surprised that it actually turned out be funny with a rip-roaring story. Becky Sharp is an enduringly charming and devious protagonist.

Some honourable mentions: Shirley Jackson's We Have Always Lived in the Castle, Joan Lindsay's Picnic at Hanging Rock and all the short stories of Katherine Mansfield.

racontesse3 karma

It's a case of 'who you know' I'm afraid. I had a friend who was a publisher and she loved what I was writing and was happy to take a risk publishing my work.

racontesse3 karma

First of all, I'm deeply sorry. It's awful.

Being pragmatic and taking one day at a time is helpful but also allowing the feelings of sadness and anger to be expressed. People will wanna fix but they can't and just sitting with someone in their pain can be very helpful.

Make the most of your time while your function is good. You may not feel like it when you feel sad but if you can still swim, swim.

Showing how much you love someone is really important. I found that it helped to know that people cared and that my life meant something to them. So if you have something to say, say it sooner rather than later.

Offer practical help, even if its small. Taking away some of the burden is a tremendous help.

Are you in the UK? Because there is a load utilities that you should take advantage of as early as possible. Anything to make your life that little bit easier.