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Yes I think the test for me here, having had 8-9 direct reports these past 5.5 years there was would I have written a staff up for that under the circumstances. I would not have. We would have talked about it for sure and I may well have said “that can’t happen again” but disciplinary action? No.

I can’t get over the part about how I came back to work six weeks ago after Brian’s death and HR let him write me up for an argument.
 
Some people aren't good bosses for sure... My supervisor's manager made a comment about me working from home when I was taking care of Cliff that if I was working at Walmart, I wouldn't have a job... I work for a fortune 500 company idiot... I don't work for Walmart. I still wish that he would go to work for Walmart...

No compassion. Thank goodness my group doesn't report to him anymore. Every time I see his phony a** in the hall and smiles and asks how I am doing, I want to tell him a thing or too.
 
5 years after Chris's death and I still just can't run in that rat race anymore - we are definitely changed (and that doesn't mean it's a negative!)
 
It is interesting to think on a wide open world. I’m even thinking on traveling a bit. At the moment, it’s between Spain, Ireland, and Australia:)

I am amazed at the massive amount of a**hattery not only we CALS and PALS face, but many others dealing with terminal and life threatening situations and their aftermath.

I am SO not the only broken person out there who has had to deal at work, with “friends”, etc.

I think it may be this: we are the walking, breathing reminders that it could be you, it could be anyone. The folks who literally saw Brian Walk a pitched roof and 10 months later walk with a cane, saw us both lose everything he was or even just heard about it saw that it can be anyone.

I look back at old Facebook posts of mine, pre Brian Dx. Spooky but true that one was about and a friend who in 2014 who was a CALS before me. I made many posts about gratitude. If I’m just grateful enough, it’ll ward off the evil spirits, right? Right?

The reaction can also be to make distance, to reject it, even to find crazy ways to blame the victim. I felt when I came back to work that first day after the Dx a weird burst of hostile questioning from my boss about a matter I was in fact dealing with appropriately (and that was another boss!).

I felt it in people who said weird, inappropriate things. To this day I still feel it at times. We proved that gratitude, hard work, and Kale won’t keep you safe from those things which everyone fears. I think people were once more aware of that actually and more accepting of it. Now, avoiding GMO’s or sugar or sitting or whatever is suppose t keep us 100% in control of our destiny. Except wait that guy did that and look at him! How far can I distance myself from this? Set callous button on to “high”.....

It goes definitely for the grieving widow with some folks, a living reminder that you can be having a great marriage, a great life and <poof>.

One good thing (maybe two) events of this week made me do:

1. Admit I’m broken. I could not and cannot navigate this supervisor in my current state, and that’s actually been a problem from day 1 with him. Aside from that even, I needed to admit to myself I’m broken.

2. Leave this job. It’s been time for a long time for many reasons. This episode pushed the envelope. Waiting to get another job probably only would have pushed me into another lousy, even if well paid job.

Honestly, I would still not 100% trust my own choice to leave were in not for #1. I really cannot navigate this guy now, nor could I after a leave. A month or two would hamper my peers and bring me right back under him, in a place with the same issues.No.

Sometimes it really does happen as it should.
 
Except wait that guy did that and look at him! How far can I distance myself from this? Set callous button on to “high”.....
I think that is why everyone stayed away while Chris was ill, then flocked in after he died as though the 'old me' would now be able to just come back and it would have made THEM feel better.
 
You are right, Lenore. I think we do remind others that there is really very little that we control and that freaks them out. Even though we are 5 + years in which puts us in the small minority of pals who survive this long, I have folks who still subtly suggest if we just would see a holistic doctor, have someone wave a magic wand, or whatever, we could reduce the ‘inflammation’ they think is causing this, go figure. Like we haven’t examined everything from a million different angles over the years and make adjustments all the time.

Good luck, with your next step wherever that takes you. Wishing you peace.
 
Lenore it’s true, all of us who have lost someone to ALS are broken. The break started with DX, only then we didn’t totally recognize it. We went into CALS mode and didn’t look back long enough to see that we started to break. With their passing it allows us to see exactly how broken we are.

I am so thankful you were able to quit and your job and be able to survive for a few months so that you can regroup. Owning my own business has made that choice impossible for me, however it’s what I really, really want. If I could sell it today I would. In my case it’s hostile employees vs supervisors.

I’m so happy you can recognize what’s going on and deal with it appropriately.

Know you are in my thoughts and prayers as you move forward.

Hugs
 
I think that is why everyone stayed away while Chris was ill, then flocked in after he died as though the 'old me' would now be able to just come back and it would have made THEM feel better.

Oh, many times this and that’s why I am quoting in FuLL!

Yes, much flocking back after Brian’s death. You need a ton of forgiveness to keep most of your friends after this, and some I have just got the delete button on for sure.
 
Even though we are 5 + years in which puts us in the small minority of pals who survive this long, I have folks who still subtly suggest if we just would see a holistic doctor, have someone wave a magic wand, or whatever, we could reduce the ‘inflammation’ they think is causing this, go figure.

Do people even think about how ignorant they sound when they talk about things like mystery “inflammation”? Do they really think that 150 years of medical science would not have caught that if it were a real thing?

Of course, medical science is a vast conspiracy trying to kill us all (eye roll!).

It’s as if they were sitting around in 1575 talking about the “humors” causing disease. Next maybe we can all do some bloodletting and bang pans to ward off the evil spirits causing ALS....
 
My thoughts exactly, Lenore. Thanks for making me smile this morning!
 
In other news TWO of the three supervisors I had in my current role (except the current one I have had the issues with, of course who I did not ask) are up for giving me references.

Nice! The write up thing had really been heartbreaking for me. I felt like it negated my past 5.5 years of work somehow. I’m seeing now that my work, nor myself are the sum total of one guy’s opinion. I talked to HR and covered all the bases on “what if’s” for future, including if a company I went to was bought out by this one. I felt better.
 
Lenore I happy to hear you’ve gotten some positive feed back, both from supervisors and HR. That has to take a huge weight off of your shoulders.

Have an awesome day!
 
I think I figured something out. Coming out on the other side of this is practically like discovering a new identity.

I have photos taken of me on the very day of the evening Brian would show me his first symptom, the day he was diagnosed, and finally the day he passed. They are not pictures of the same person.

Before Brian was diagnosed, the woman in photo one, I was very happy with my husband, concerned about my mom but not overly so, and not happy at work but not wretched about it either.

I had a bit of middle aged, middle class let down “Is that all there is?” I knew I wanted something more. Wanting and striving had sort of defined my life. Yet, I consistently marveled at the live I had found. Brian, the love of my life. Brian, the man who had forgiven me (and no it was not adultery lol!). We had our animals, we had our love. We had trips up North in the summer and lots of friends.

I look back at my vague discontent then and think “spoiled! Stupid!”. I also wonder if I knew something deep down, smelled it? Who knows how we know things and when we do.

Anyway, fast forward the woman in photo #1, the one with the healthy husband passed on also in these last three years. She was replaced with current me, and I’m still learning who this new person is.
 
Who am I? That’s a question that has haunted me too on this strange journey. For PALS, we have our abilities and talents stripped away, one by one. For CALS, it’s a different identity crisis. Your post is profound.
Best wishes in discovering the new you.
 
While I haven't been through a loss to ALS in my family, my brother took his own life 26 years ago. So I get complex grief. I look at loss from the perspective of does your table change at Christmas. If everybody is still there, the loss is peripheral. Your co worker is aware of your loss, you on the other hand, took a direct hit. People think that you really shouldn't still be grieving 2 whole months later. They're over it, why aren't you back to who you were by now. Those of us who take a direct hit understand that you are horribly wounded and in what can be seen as an existential crisis. It takes a long time to recover from something so awful. As someone well acquainted with the black dog, I have often thought it is a shame we don't bleed. If we bled, people could see how sick we really are. It takes time and events to reorient yourself. You have made it this far, you will make it through this.
 
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