The Next Part of the Journey

Nuts

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Lenore, If I came here more often these days, I'd probably write much the same things that you write. Wow.

My son is a police officer in Virginia, and he has also been kind to someone who mentioned ALS. He didn't tell his story--it's not necessary. As he says, mention those three letters and you can instantly tell if someone has been affected by it up close and personal.

I'm so glad that you are making progress. Only you know when it's right for you to let things go.

I, too, have trouble seeing all the new members and knowing what they face. I want to help, and sometimes I can, but frankly I'm running away from responsibility and ALS these days. Well, much of the time.

Stay strong, and don't wear yourself out too much on those other trips you mentioned!!!!

Becky
 

Lkaibel

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I know exactly what you mean about responsibility and ALS and running! I swear after all that happened, I am still tired.
 

lgelb

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Becky, please thank your son on behalf of whoever benefited from his kindness. Knowing is one thing; doing is another.
 

Narrowminded

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Lenore - I too have to “lift things up”. I did that a lot while going through the whole journey.

If you’ve been over to the CALS check in or newer threads, you will also find me mostly absent. For now it’s hard to revisit all of that, occasionally I comment, but I too am running. Still trying to find a new normal etc.

Hugs
 

Lkaibel

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Incidentally Becky, my nephew is a police officer In Honolulu :)
 

Lkaibel

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I’m in Vegas, leaving tomorrow and I’ve been having a great time. I saw the Cirque show with Beatles music, Love. At the opening of the show I could not figure out why I was tearing up. It was not exactly because Brian was not there. He likely would not have been in life, he was not a theatre kind of guy. Then it hit me: the unrestrained joy in the music and the dance. Contentment and pleasure I have known these past three years, but Joy? No, I can’t get there yet.

I know one day, that part of me will open up again, and I will be able to feel actual joy. It was just weird seeing it in lights on stage. That said it was a great show. Our tour of Red Rock Canyon was awesome, the restaurants and happy hours are all great, and I am also seeing friends from Florida, MN, and one right here in Vegas!

This morning, room service breakfast then some pool time, walking around to this and that and tonight dinner and a magic show. It’s nice to feel some real life energy again.
 

Narrowminded

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Lenore what a wonderful report from Vegas. I am so thrilled you are finding yourself and pleasure in what you are doing. That is huge.

Have a wonderful last day.
 

Lkaibel

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I think that this may be the only ALS site I stay on. The tidbits popping up in my Facebook feed are depressing me. I want to move on. I can’t seem to entirely,

I don’t mean I want to move on from Brian. I know I can only move forward. I want to move on from ALS. It’s weird, I feel it still lives with me. It’s still in my house, my car, my mind, my soul. That monster made itself known right here in the living room I am sitting in and I can’t shake the beast.

I recall the CALS I knew who had developed a sudden interest in target practice at her farm after a lifetime of ignoring the family gun collection and no interest in hunting. About the time she became an accomplished shot, she realized she was trying to shoot the beast.

Brian passed, and I thought that monster would get out of my house. Nope, it lingers.

In Hospice work, I watched people leave this world, mostly from cancer. I worked in the tail end of that time, the 80’s when most cancers equaled death sentence at least in the popular imagination. Typically, some treatment had been tried but the degree of disability you see in ALS was very rare. You got a definite feeling of people being consumed by cancer. I wonder now, did those patients and families feel they were being assaulted by a monster?

The first time I ever heard what I came myself to feel articulated was in one of the two cases of ALS I saw. The CALS telling me he had watched his beautiful, 50 year old former swimsuit model die by inches as “this monster attacked her body”. They were wealthy people, and he lamented that money did nothing for ALS but pay the bills as the inevitable happened. Now I know the monster no doubt followed him to their Honolulu vacation place after she passed. Some things money really can’t buy.

Anyway, I realize there is nothing for this feeling of “ambient ALS” but time. I could leave this group tomorrow but it would still live in my head and I’d lose an outlet of communication too. I’m only thinking of dropping the FB groups so the random notes stay out of my feed and I can control more what I’m seeing/thinking about.

Off to tasks and chores today. Yesterday I mostly recovered from my excellent Vegas trip.
 

Narrowminded

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I understand everything you just wrote. I have that same feeling, that it lingers. I think that was what was propelling me to move. Like if I didn’t see the same house, the same rooms etc. But I have the distinct feeling it would follow me anywhere.

For now I will change up the things that need changed here and maybe it will be enough to “feel” different.

I also agree about this being the only place I really remain in regards to ALS. I just want it out of my face.

Hugs to you
 

KevinM

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I think that this may be the only ALS site I stay on. The tidbits popping up in my Facebook feed are depressing me. I want to move on. I can’t seem to entirely,

I don’t mean I want to move on from Brian. I know I can only move forward. I want to move on from ALS. It’s weird, I feel it still lives with me. It’s still in my house, my car, my mind, my soul. That monster made itself known right here in the living room I am sitting in and I can’t shake the beast.

I recall the CALS I knew who had developed a sudden interest in target practice at her farm after a lifetime of ignoring the family gun collection and no interest in hunting. About the time she became an accomplished shot, she realized she was trying to shoot the beast.

Brian passed, and I thought that monster would get out of my house. Nope, it lingers.

In Hospice work, I watched people leave this world, mostly from cancer. I worked in the tail end of that time, the 80’s when most cancers equaled death sentence at least in the popular imagination. Typically, some treatment had been tried but the degree of disability you see in ALS was very rare. You got a definite feeling of people being consumed by cancer. I wonder now, did those patients and families feel they were being assaulted by a monster?

The first time I ever heard what I came myself to feel articulated was in one of the two cases of ALS I saw. The CALS telling me he had watched his beautiful, 50 year old former swimsuit model die by inches as “this monster attacked her body”. They were wealthy people, and he lamented that money did nothing for ALS but pay the bills as the inevitable happened. Now I know the monster no doubt followed him to their Honolulu vacation place after she passed. Some things money really can’t buy.

Anyway, I realize there is nothing for this feeling of “ambient ALS” but time. I could leave this group tomorrow but it would still live in my head and I’d lose an outlet of communication too. I’m only thinking of dropping the FB groups so the random notes stay out of my feed and I can control more what I’m seeing/thinking about.

Off to tasks and chores today. Yesterday I mostly recovered from my excellent Vegas trip.
Lenore, please continue posting. I said it before, but you are one of the most eloquent, open, rawest (in a brilliant though emotionally wrenching way that truly gifted writers have) posters I’ve had the pleasure and sorrow to read here. We need your presence. Kevin
 

Lkaibel

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Kevin and Sue, thank you and I’ll be posting here I think for some time to come. I do it for me of course, and to support others (I hope!) and to maybe show others what this path can look like.

When I can handle it, I like for example to pop into the newly diagnosed section and just let people know their story is not over. That’s what I hung onto in those days and weeks after Brian was diagnosed. I’m so thankful for that year we had after he was diagnosed, even more than a year. Thankful even for those times toward the end where he would say when I was running around the house like a headless chicken “just come sit with me and let’s enjoy each other”.

Can you frackin’ believe the stories of those spouses who leave when their PALS is diagnosed? I know things happen. I knew a woman years ago who finally left her abusive husband when he got MS. I admit I didn’t blame her or much feel bad for him.

Yet I think WOW there had better be a story behind abandoning a PALS. I talk to a man online who has had ALS for 6 years and is an an ALS assistive living. He’s lucky he had the cash. His now X wife filed for divorce right after he was diagnosed and tried to get a substantial divorce settlement. She failed- judge said he’d need his money for care. They had 30 years and three kids who mostly won’t speak to mom now. What a mess.

Maybe I’m still living with a beast, but Im glad I know I did the right things. I hope I did.
 

KarenNWendyn

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You definitely did all the right things, Lenore. You and Brian were up against a monster.
I have benefited so much from your posts.
 

ReginaS

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I have benefited too and thank you for writing all your posts.
 

soonerwife

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I know how you feel Lenore. I have moved to a new home but ALS will always be part of my life because it took my soulmate. I wish I could forget and go back to remembering everything before ALS. I have had a few dreams about Cliff and he is sick in everyone of them... I am hoping one day that ALS won't be as vivid as it is now but who knows. It seems to be the nightmare that won't go away. Hugs!
 

MarieLaure

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Lenore, although I am lucky enough not to have personal experience of losing a spouse to als ( and that holds me back from answering), I follow your journey with empathy. I can’t imagine life without my father but thanks to you and those who tell their story I know there is a way, however blindfolded we may feel trough it.
You guys help everyone feel that all feelings are legitimate and that’s great help.
Thanks and love
 
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