Haunted

[ARCG]

Lenore,

I so hear you and what you are feeling. It’s crazy to see people get upset about things with their partners that seem so petty compared to what we have been through. We took pleasure in watching the birds at our bird feeder or our silly dog jumping into my pals lap and resting his head on his hand, like he knew what was wrong. Simple things that mean everything. But I guess, that is why I miss him so much, we enjoyed the simple things, even when he was healthy, and never got caught up in sweating the small stuff.

 

[Narrowminded]

Lenore I’m quite late to reply, but I’ve purposely been staying off of here, in an attempt to put this behind me as much as possible. It will never be completely though I don’t think.

it’s interesting, we had a new couple move in up the street. Somewhere close in my age range. Anyway, every evening they go for a walk around the neighborhood holding hands. Every time I see them it chokes me up a bit. That should have been Brian and I. I so get the outing that was the trigger.

Sometimes I think moving is the answer, then I worry I will regret it, so nothing yet. Please know you are in my thoughts and prayers. I do still have times like you mentioned, full on crazy, so you are not alone.

Huge hugs,

 

[affected]

It took me years not to choke up and even feel anxious seeing couples out in public being affectionate or even just really comfortable together. Especially when I would see couples that are older. That feeling of ripped off would grab me.
I didn't even realise that this truly rarely happens now

 

[Jrzygrl]

I get jealous when I see older couples together too. That was taken from us.

I just got through a biggie this weekend. My first wedding without Jim. Luckily, I had a lot of "my people" at the wedding. Those that got us through some tough times. At one point, the DJ asked all the married couples to take the dance floor. My eyes must have given me away, because my son made a bee-line for me, giving me a huge hug and asking me if I was OK and if I wanted him to to dance with me. Love that kid! ❤

 

[affected]

@Jrzygrl I love your son for that too!

 

[lgelb]

That's so sweet of your son -- and so much part of Jim's legacy.

 

[Narrowminded]

Jrzygrl- how precious of your DS. Sounds like something mine would have done too. Definitely a legacy to Jim and you for raising him right.

I know I have one very tough one coming in the future and that is DD’s wedding someday. I tear up even just thinking about it. Who will walk her down the isle? No Daddy daughter dance. I’ve suggested to her to do a non traditional wedding, like on a beach or something to take the pressure off. She’s at the age where she is attending lots of weddings, in fact she will have 3 in the next 6 weeks and she struggles with that dance every time.

hugs

 

[Lkaibel]

I am completely overhauling two rooms in my house. One was Brian’s man cave, the other a small bedroom full of odds and ends. They are becoming a guest room and an office.

Unexpectedly, I ran across the two old phone books taped together, stacked that Brian once used for his workouts.

Brian’s workouts. The ones that made a man in his 60’s look, neck down like he was 35. The same workouts where his considerable strength and grace were on full display.

Brian had a meaningful relationship with his body. It was not just a tool or vessel for him the way it is for me. Those moldy taped up old phone books were a powerful reminder to me of what he had and lost. Particularly as I go into the last parts of repurposing “his” rooms.

That Brian of all people should lose his body even before his life seemed so insanely cruel to me.

I had my little cry, went out to dinner with a friend. I Snapped on the way to the restaurant, and bless her heart my friend thought I was just too hungry. Life moves forward, memories in tact and even as I still grieve.

 

[affected]

those little things can hit the hardest, especially when unexpected I'm so glad you were out with a friend that evening tho

 

[Lkaibel]

I spoke with a former CALS this weekend and felt so much better.
I met her volunteering fir the ALSA a year and a half ago, before Covid but this was the first time we talked specifics.
She had my story, only 15 years ago. She is 70 now but was 55 when her husband past. She’s a Doctor, but the rest of her story was so similar to mine. Husband 17 years older, and he was a former Olympian! He also lived three years past Dx, limb onset and was just as determined to not “linger like THAT”.
I felt so much better when she told me that 2.25 years was “nothing” in ALS widowhood, practically yesterday. She said “You were traumatized in addition to grieving, and maybe in another year or two you’ll start to feel a tiny bit like who you were.”
This from a woman who did remarry, though she thought she’d not do that. Five years past her husband’s death, she met someone and got married again. She volunteers for ALS because her “new” husband is a neurologist (funny, huh?) and encouraging about it, 100%.
She was actually impressed that I’d agreed to a lunch date with a man lol!
The words “ one of the worst things that can happen to a human being happened to you two” hardly seem uplifting at first glance, but they really reassured me that I’m not a morbid obsessed Person who needs to get over it. …
In other news, I’m advance planning a big trip to Vegas in March, complete with zip lining over Fremont street super hero style. Why? Because I fear heights, that’s why .

 

[affected]

I'm so glad her story could resonate with you Lenore.

 

[Narrowminded]

What a blessing to be told by someone who walked our/your shoes that where you are now is completely normal. I'm so glad you could have that convo.

Hugs

 

[Lkaibel]

As am I! It’s taken me time to appreciate these gifts but I do now!

 

[Lkaibel]

Crazy, weird, too odd to be mere coincidence thing:

Today is my birthday. Yesterday, the fifth anniversary of Brian’s Dx. I came home from work today and got an Instagram. First contact with post high school boyfriend in, no kidding 38 years.

Turns out he has ALS, is in hospice inpatient in Seattle, and heard about my husband. I expect through mutual old friends on Facebook. He’s an artist, just 58. Eleven years younger than Brian was when he past, he was Dx’d in 2015 and had symptoms eight years.

My belief system is that ALS has come near me too often to be incidental. Through a friend before Brian was diagnosed. Now again with a light and distant touch from a very long ago boyfriend. It’s striking, considering that 6000 people in the U.S are diagnosed annually next to 200,000 who are diagnosed with lymphoma annually. ALS is indeed rare. The odds I would have two partners in a lifetime, even decades apart who eventually got ALS very slim.

Now, I just need to sort out what I am meant to do with this.

 

[Jrzygrl]

Happy Belated Birthday, Lenore! Yesterday was my Jim's birthday too. He would have been 62.