wishmobbing
Senior member
- Joined
- Dec 5, 2017
- Messages
- 872
- Reason
- Lost a loved one
- Diagnosis
- 07/2017
- Country
- DE
- State
- BW
- City
- Stuttgart
Dear forum friends,
after a mostly good year, a couple of harder months and a final night with lots of music and holding hands my PALS peacefully fell asleep and never woke up again.
In the 13 month after diagnosis he lost a lot, his work (never missed), his ability to move (accepted with stoicism), his voice (though not his ability to communicate), eating real food (the one thing he missed dearly and irreplaceably), his breathing (which caught up with him without complications or hospital stays) and ultimately all of his friends and family because he couldn't take us with him. We had a week of heartwretching goodbyes while he got ready to let go. He still had so much to lose...
There's great comfort in knowing what he never lost, his sense of humor, being at home with me laughing or rolling his eyes at my antics, memories of great trips, watching good movies and series, having almost more friends drop by than he could handle and first and foremost: MUSIC. For what had to happen everything pretty much fell into place.
In a weird way he seemed better equipped than others to deal with the beast and from day one it was all about quality of, not fighting for a long life. He was the Yang to my Ying, we have opposite personalities and I seemed better equipped than others to deal with the beast from my side, conjuring energy and good cheer. His time had come, we'd talked about everything and were ready. Even one more month might have ground us both to bits.
I shared my path with this beautiful soul for 17 years, the last year was very intense and not the worst for it. He never saved a penny for later, he always did what he wanted to do NOW, he worked as little as manageable and when asked about his regrets in life he thought for some time and the only thing he came up with was not having eaten enough burgers.
I myself am doing quite good and am surrounded by the wonderful friends I inherited together with his record collection full of fun memories and great tunes. I enjoy being outside, being free (as I have neither a job nor the urge to get one soon), listening to old radio shows my boyfriend made years ago. What a gift to hear his healthy voice again after I actually forgot how he sounded!
I looked for and found a dream apartment that will be my new home starting November. There's enough time left to find new homes for many of my boyfriend's belongings (I grabbed some of his band shirts for myself, great he was a size S, too). And there's time for seeing friends and talking about what happened and what will be in the future. So far it's been good apart for a hard spell the night and an emotional hangover the day after his funeral. I'm afraid of feeling the void as soon as a new job, a new routine will manifest. I fully expect to drop into a hole at some time and am determined to just go with the flow.
I'm sorry I vanished from the forum some time before the last phase began. I read and learned so much here, this site was my constant companion for months. By the time I imagined I would have needed you all to talk me through it I could already imagine what advise you'd give me and I never felt lost or alone. Thank you for all the support and being the amazing PALS and CALS you are. Know that I will always carry you and your stories in my heart, sending you strength, understanding and comraderie. I surprisingly am very hesitant to be here again. Of all the losses, I most enjoyed losing the monothematic monster of ALS. I feel guilty to leave you all to the struggle but I really need to be back in the world and be there for all the others that lost him, too.
His new home is under a big beech tree with a visitor bench in a remote spot of our favorite cemetery. It's a beautiful area reached by a historic cable car that still feels like a forest and around the time of our anniversary huge rhododendron bushes will bloom a glorious pink.
He poured his remaining energy into a speech for his own funeral and together with songs he picked out that made a beautiful ceremony with many dear people showing up at his grave and later at our home to finish off his bar, look at photos and listen to his records.
I will end with the same words he ended his speech with:
Be nice to each other and don't work so hard!
Wish
after a mostly good year, a couple of harder months and a final night with lots of music and holding hands my PALS peacefully fell asleep and never woke up again.
In the 13 month after diagnosis he lost a lot, his work (never missed), his ability to move (accepted with stoicism), his voice (though not his ability to communicate), eating real food (the one thing he missed dearly and irreplaceably), his breathing (which caught up with him without complications or hospital stays) and ultimately all of his friends and family because he couldn't take us with him. We had a week of heartwretching goodbyes while he got ready to let go. He still had so much to lose...
There's great comfort in knowing what he never lost, his sense of humor, being at home with me laughing or rolling his eyes at my antics, memories of great trips, watching good movies and series, having almost more friends drop by than he could handle and first and foremost: MUSIC. For what had to happen everything pretty much fell into place.
In a weird way he seemed better equipped than others to deal with the beast and from day one it was all about quality of, not fighting for a long life. He was the Yang to my Ying, we have opposite personalities and I seemed better equipped than others to deal with the beast from my side, conjuring energy and good cheer. His time had come, we'd talked about everything and were ready. Even one more month might have ground us both to bits.
I shared my path with this beautiful soul for 17 years, the last year was very intense and not the worst for it. He never saved a penny for later, he always did what he wanted to do NOW, he worked as little as manageable and when asked about his regrets in life he thought for some time and the only thing he came up with was not having eaten enough burgers.
I myself am doing quite good and am surrounded by the wonderful friends I inherited together with his record collection full of fun memories and great tunes. I enjoy being outside, being free (as I have neither a job nor the urge to get one soon), listening to old radio shows my boyfriend made years ago. What a gift to hear his healthy voice again after I actually forgot how he sounded!
I looked for and found a dream apartment that will be my new home starting November. There's enough time left to find new homes for many of my boyfriend's belongings (I grabbed some of his band shirts for myself, great he was a size S, too
). And there's time for seeing friends and talking about what happened and what will be in the future. So far it's been good apart for a hard spell the night and an emotional hangover the day after his funeral. I'm afraid of feeling the void as soon as a new job, a new routine will manifest. I fully expect to drop into a hole at some time and am determined to just go with the flow. I'm sorry I vanished from the forum some time before the last phase began. I read and learned so much here, this site was my constant companion for months. By the time I imagined I would have needed you all to talk me through it I could already imagine what advise you'd give me and I never felt lost or alone. Thank you for all the support and being the amazing PALS and CALS you are. Know that I will always carry you and your stories in my heart, sending you strength, understanding and comraderie. I surprisingly am very hesitant to be here again. Of all the losses, I most enjoyed losing the monothematic monster of ALS. I feel guilty to leave you all to the struggle but I really need to be back in the world and be there for all the others that lost him, too.
His new home is under a big beech tree with a visitor bench in a remote spot of our favorite cemetery. It's a beautiful area reached by a historic cable car that still feels like a forest and around the time of our anniversary huge rhododendron bushes will bloom a glorious pink.
He poured his remaining energy into a speech for his own funeral and together with songs he picked out that made a beautiful ceremony with many dear people showing up at his grave and later at our home to finish off his bar, look at photos and listen to his records.
I will end with the same words he ended his speech with:
Be nice to each other and don't work so hard!
Wish
