The Next Part of the Journey

Lkaibel

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I just never know when something I see will turn on the water works. Last night is was this:

I binged the final season of “Orange is The New Black”. Piper says to a friend “ I was in Federal prison. It was ten percent of my life, and it changed absolutely everything and now I have no idea who I am.”

So I burst into tears, paused the show and let myself luxuriate in some self pity and honest comfusion. Substitute “my husband got ALS and died” and you have how I feel every single day.

When Brian was alive, I use to actually think some days, “chin up, boots on”. I was my own drill sergeant. I actually had an internal monologue to myself that was a bit of a shout to get up, keep going, and never lose control.

Then he died. I got into a loud argument with my a-hole boss and we know how that all wound up (actually all for the best, but just saying). I’ve become somewhat erratic, randomized. I must motivate myself out of the house some days or to do the least bit unpleasant tasks.

I feel distracted, unfocused, not “miserable” by any means but out of sorts. I went from being a CALS and a full time employee to a widow on summer vacation, not even looking for another position in earnest until September 1. It’s great in so many ways, but I also went from 14 and 16 hour days to having to make myself clean cat boxes. I’m not depressed. I’m something else. I know not what.

Speaking of which, I’m getting myself much out of the house today, starting now, and I think it will be a very good thing. Enjoy the day everyone.
 

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I’m not depressed. I’m something else. I know not what.
Hon, you are GRIEVING is what you are.
Cut yourself all the slack possible - it is what it is.
The deeper you loved, the deeper and longer you will grieve.
Grief is like someone taking a thick permanent marker pen and just scribbling all over everything.
That crap about 'the stages of grief' doesn't even begin to cut it, it's not the least bit linear.
The changes in me are massive, and they aren't done with me yet either.
It doesn't just happen and get done with in just a few weeks or months either.
Let yourself feel good that you managed to clean the cat boxes instead of feeling you 'should' have done more.
There is life, and joy and beauty in the world, you will find it out there. Maybe not today, that's OK.
~Musings of Tillie~
 

Lkaibel

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I know you are right Tillie. An ache and a longing sits under everything I do and say.

We had a great, huge love. The kind I frequently marveled at long before ALS. Oh, make no mistake, Brian was not always easy and I’m sure not either. Life is never a fairy tale, but sometimes you get that enormous love.

As I said once before, I am Heathcliff and Heathcliff is gone. A love that taps your identity that way is a complicated blessing indeed.
 

Narrowminded

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Lenore I’m sending huge hugs. I know what you mean completely. Some days are beautiful and relaxing and you feel comfortable and then wham you feel like someone just kicked the legs out from under you and for no apparent reason.

Last weekend for me was spent in tears. That seemed cleansing and the week went well for the most part. I got things done around the house, I felt relaxed yesterday. This morning I woke feeling discombobulated again. I think Willow can sense that. She’s acting up this morning.

However, we both will walk through this together, along with others here finding their way. It won’t always be easy, and it won’t always be hard. And there is no way around, over or under, just through.

However we will do this. Some days we may need to be our own drill Sargent’s, and some days we will head to the sick bay. WE got this - together.

Hugs
 

Lkaibel

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Thank you Sue. Here’s hoping the coming week brings more good days.
 

Lkaibel

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So today’s tear jerker was it somehow came up in conversation with a friend when I had to tell Brian he no longer needed remote controls near his hands because he could no longer use them.

There he lay, on a bed on the floors he laid looking out the window at a garage he built and a plant forest he made over decades, unable to use his hands. At all. I wonder how long it takes not to be haunted by those bits.
 

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I wonder how long it takes not to be haunted by those bits.
The searing heat of it does fade, and the horror recall of many details fades too.
How long though is hard to say, but it isn't short when going through it, however it does fade.
You realise one day that you haven't had some kind of jolting memory or feeling for quite a while.
You realise another day that you can say something about your PALS with a smile and a fondness and barely even get that catch in the throat and threat of tears spilling.
In some ways I talk about Chris more now in the past year than I did earlier, because it's just natural to do so in whatever context, rather than it being painful bits of ALS.
Don't doubt however that things can still catch me unawares ...
 

Narrowminded

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Hugs Lenore.

I had a tear jerker yesterday myself. On my way to work, I was thinking of an employee we lost about a year ago. His daughter is or did get married this year. (Not sure of the exact date), and I was thinking how her dad won’t be there to walk her down the isle and how my DD won’t have that either. I’m tearing up just writing this. It was one of the very first things after his DX that made me cry for the future. I get it. The things that ALS took away....

I hope today is better for you.
 

Lkaibel

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Today I saw the sun! Really saw it!

To explain, I went to the store. Simple trip. The sun is shining, it’s one of those rare days in Minneapolis where it’s perfect. Low humidity, 75, bright sun.

I realized in the car that I could see the sun the way I saw it before Brian died. It was not dulled, filtered through some weird lens.

I’m glad to see the sun again, really see it.
 

Lkaibel

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I might add that this felt particularly fabulous because eleven days ago when I saw The Love show in Vegas I felt tears because I felt I was witnessing bona fide joy and I had not experienced it in so long, as in years. Today I felt that if I can SEE sunshine, Joy may just make a comeback!
 

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Lenore I am so very happy for you. Yes joy will come back in teeny tiny bits at first. That’s where I am. After I got my new sink in and was thinking that I had a bit of painting done, for a fleeting moment I felt joy. You will too. Exam you sun experience, see if there is a touch of joy in there. I think there was.

Hugs
 

Lkaibel

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My feeling is that mostly, things get better from here. There will still be bad days and times but I think now I can really begin to move forward. I can feel motivation and concentration and yes even joy returning to me.

There is life after this terrible thing.
 

Lkaibel

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Life is never perfect and of course I have things going on, but life just keeps feeling more like actual life. It’s great to have a little sense of normality, even if it’s a “new normal”.

I think the combination of that sunny day I could actually see and feel, and the CALS trip was great. I think that letting myself really just burst into tears these past few months as tears came up has been good too. Not working these past few months has been excellent too in giving me time for done recovery.

I was pleased with myself yesterday morning. I got right out of bed and dealt with my Virtuwell visit for my persistent eye sty and worked on/sent my resume for an
Interested recruiter. I went to lunch with a friend and then stopped off to pick up an item from a friend’s house. I acknowledged some enabling behavior I was doing in another friend’s drinking issues and stopped it. Honestly, my first significant thought on anyone else’s problems since Brian passed.

Grief is exhausting and leaves no bandwidth for other people’s issues. I’m sure it’s very different with children young or adult. Another reason for hats off to the parents of the world. For me,since Brian I’ve had no bandwidth for anything but sympathy from afar.

Come to think of it, a former CALS recently told me that his grown daughter has recently had to accept that she is on her own with some life issues because he is officially utterly drained from his wife’s passing 3 months ago after 10 years of caregiving. I get it!

Time to let the dog out, tackle breakfast and be grateful I am getting more energy to tackle life again. I am sure the backward pull will come, the bad days. I know they will. It’s just that now I am experiencing finally some truly good ones. So much of mid March through until late July was like an imitation of life for me. The cloud may not have lifted, but it’s moved justvenough to see the sun a little.
 

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Lenore I have loved reading your post this morning. Gives me good feelings all over. Just seeing you learning your new normal and moving about in the world having feelings of true joy. That’s huge.

Yes, when there are also kids involved (adult) it does complicate things a bit more, but not always in a bad way. Some days we can work through our grief together. Having said that though, there is nothing like some good alone time to work through our own issues.

I’m praying you find the right job at just the right moment. You deserve that joy and happiness.

Hugs
 
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