dragonflydi
Active member
- Joined
- Oct 19, 2010
- Messages
- 79
- Reason
- CALS
- Country
- US
- State
- NY
- City
- Fredonia
A month ago, my dear husband Tom passed after a 7 year fight with ALS at the age of 68. I haven't been on this site in a few months because things got very hard towards the end. He began to really weaken over the summer, developed aspiration pneumonia on September 10th, spoke for the last time on September 30th and died on October 8th. I never posted a lot here, but I read everything you all wrote and took such comfort in knowing that you were there. You helped me more than you will ever know and I learned so much from so many of you.
Tom was such a fighter and he was the most positive, cheerful person and well-loved person that I ever knew. In 7 years, he never complained, never asked "Why me?" He often said, "All things considered, I'm a pretty lucky guy." He kept this attitude even when he could no longer play in his beloved basketball league and when he lost his beautiful singing voice. Over 300 people came to his memorial service, some from as far away as Switzerland (I live in Western NY) which says a lot about the kind of person he was.
I consider myself a very lucky woman to have been married to this wonderful man for 32 years. We became grandparents in February and, although our son and his family live in NC, they spent some time up here in Tom's last months and he was able to hold our beautiful grandson on his lap last Easter and then again in July. Baby Parker brought much joy into our lives at an extremely difficult and challenging time.
Grieving is hard, but I think those of us who care for and have cared for someone with ALS have experienced extended grieving that started the minute we heard the diagnosis of our loved one. We all grieve in different ways and I have found solace in collecting quotes that strike me as I am reading or watching TV. Here are two of my favorites that I believe speak to everyone, but especially to us CALS:
1. "When you've been to hell and back, the odd trivial mess or two no longer has the power to
terrify." Spoken by a character in Susan Howatch's novel "The Wheel of Fortune".
2. "Ain't no shame in holding on to grief, so long as you make room for other things, too."
Spoken by Bubbles, a character in the TV show "The Wire".
Thank you all for being there for me when I needed to share my grief. I wish for better days for all of you and your PALS.
Diane
Tom was such a fighter and he was the most positive, cheerful person and well-loved person that I ever knew. In 7 years, he never complained, never asked "Why me?" He often said, "All things considered, I'm a pretty lucky guy." He kept this attitude even when he could no longer play in his beloved basketball league and when he lost his beautiful singing voice. Over 300 people came to his memorial service, some from as far away as Switzerland (I live in Western NY) which says a lot about the kind of person he was.
I consider myself a very lucky woman to have been married to this wonderful man for 32 years. We became grandparents in February and, although our son and his family live in NC, they spent some time up here in Tom's last months and he was able to hold our beautiful grandson on his lap last Easter and then again in July. Baby Parker brought much joy into our lives at an extremely difficult and challenging time.
Grieving is hard, but I think those of us who care for and have cared for someone with ALS have experienced extended grieving that started the minute we heard the diagnosis of our loved one. We all grieve in different ways and I have found solace in collecting quotes that strike me as I am reading or watching TV. Here are two of my favorites that I believe speak to everyone, but especially to us CALS:
1. "When you've been to hell and back, the odd trivial mess or two no longer has the power to
terrify." Spoken by a character in Susan Howatch's novel "The Wheel of Fortune".
2. "Ain't no shame in holding on to grief, so long as you make room for other things, too."
Spoken by Bubbles, a character in the TV show "The Wire".
Thank you all for being there for me when I needed to share my grief. I wish for better days for all of you and your PALS.
Diane
