who would have believed

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affected

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Today is seven years since my Chris was set free of the torture that was ALS with FTD.
I'm grateful my younger son happened to be travelling through and stayed here last night and we did nice things together.
I also ran into one of the ladies that worked in the cafe for Chris yesterday (haven't seen her in several years) and we stopped and talked about what an amazing man he was and how working with him had been the best experience in her working life (she just resigned from a job she held since his diagnosis as it was getting her so down).
We talked about how being with him was just one constant stream of talk and laughter, and it felt good to remember the man he was before this monster stole all he loved most.

I have been left with a Chris-shaped hole in my life, but I have been left a better person for having been loved by him, so I'll accept the hole.

The experience after we lose our PALS is beyond words, but there is beauty and joy in the world and time does heal. Takes a damn lot of that time stuff, but it does.
 

Jlynn

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Chris was so blessed to have such an amazing woman. I’ll be thinking of you as you navigate your day. Although time does help to heal you mentally I’m sure that Chris shaped hole in your heart is forever. Not necessarily in a bad way but there none the less. Think of the great and funny things he did and smile today. Big hugs to you Tillie.
 

Jrzygrl

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Sending big love to you today, Tillie!
 

vltsra

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What a lovely tribute to your Chris, Tillie. I'm so glad you can focus on the memories and the wonderful man he was. Sending my love.

V
 

JimInVA

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Thinking about you, today. Much love being directed your way, dear friend!

My very best...

Jim
 

JimInVA

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Thinking about you, today. Much love being directed your way, dear friend!

My very best...

Jim
 

Lkaibel

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Thinking of you today Tillie. With ALS and FTD you were both hit so very hard. I’m glad you had that love in your life and so sorry you lost him, but as we know love does not die.
 

affected

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thank you all - that Chris-shaped hole has become a part of me. It actually feels quite normal now, when once it was a bleeding, gaping wound, it is just part of me as is the awesome man he was.
 

affected

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I'm always conscious too that my Chris made many choices during his rapid progression that I felt were poor ones. But I have never regretted being his advocate and acknowledging his right to 'do it his way'.
Did he make things even more rapid? Possibly, even probably.
Would different choices have saved his life? No.
Would different choices have improved his quality of life? Moot point, playing 'what if' and 'if only' is the most dangerous game of lying to yourself there is.

For this reason I always talk about acceptance, and advocating for what our PALS want. I can only hope that if I end up with any big disease that my rights to make my own choices will be accepted as fully.

love to all here always, none of us get out of this world alive
 

Narrowminded

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Tillie I am so sorry I am late to this discussion. I am so thankful you had a day to remember the real Chris and not the man he was in the end as destroyed by the monster. I am sending hugs to you as well. He was a very lucky man to have your by his side advocating for him no matter what. Thank you for all you do.

Hugs,
 

affected

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No apology needed Sue, I have valued our friendship here for many years and know you get what I'm saying. The day itself went well, as we know it is the lead up that is usually the harder. So I had many things come up during the few weeks leading up, but I kind of embrace that as part of grief now. Hugs back, I think we are the only 2 here now sporting our begemmed crowns, but all the CALS are kings, queens or heroes.
 

ARCG

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Tillie, thinking of you and grateful for all the knowledge and support you share with others. I understand about the hole in your heart and am glad you can remember Chris for the man he was.
 

affected

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Thanks ARCG it's a real process to separate the disease from the person afterwards as it is part of the grieving I think. I love when I talk to people who remember only him as it gives that chance.
Oddly enough, of course, when he was going through ALS, these are all the people who vanished. It has been so easy for them to only think of him as he was.
But time does even break that hurt down - I no longer think of people in those terms, but in the early days it was difficult to see people who had been so definitely and deliberately absent. Chris also became reclusive quickly so it was easy for people to run.
Kind of that 'life is a circle' thing I guess. Now I'm glad they don't know all the things we know.
 
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