Haunted

Narrowminded

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Lenore I’m sure D’s being in the hospital for the unknown brought back some memories. I’m so glad he has you waiting to hear how things are going. Sending good thoughts for his continued improvement.

hugs
 

Lkaibel

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So far so good. Hearing what he went through on the ER brought back big Brian memories. Oddly, that did not make me want to run but rather I wished I could go spend the night in a chair next to him the way I had for Brian. Crazy I know, but there you have it.
 

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Today I am wondering what in the universe allows the lives of my first romance and my last love to be consumed by this beast we call ALS.

Its pointless to wonder, much better to deal and to seek those treatments and ultimately cures. In the moment though I look at these beautiful, intelligent men, one going and the other gone and it’s just unbelievable that 150 years after the discovery of ALS there is little more to say than “I’m sorry”.

Deep breath, better thoughts coming but wow, just wow.
 

Lkaibel

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I‘m thinking about how oddly prophetic the title of this thread was, in more ways than one. If it’s possible to be well - haunted, this may be an instance.

In the interests of perhaps others growth and development in the post (or even pre!) loss of a PALS, I’ll share some thoughts I’ve had on my “journey”.

Three years ago today, I was working on 15 property budgets at work, my boss was a chronic irritation (who would later turn into a traumatic event onto himself), my mother was soon to be Dx’d with advanced dementia and was in long term care raising the roof, and Brian had just had an overnight catheter crisis that kept us up through most of the night awaiting hospice nurse care and dealing with the aftermath. Within months of that day previously, we’d had to put our favorite dog down, and my sister in law had passed unexpectedly.

While the universe has gifted me with a fairly broad set of shoulders, this was, shall we say excessive. It was cutting myself in the kitchen at work and being told I had blood running down my hand while I could not feel the pain. That’s disassociation, a sign you are in an overwhelming place indeed. My response to the onslaught was to shut off emotions to all possible degrees. I realize now I was also powering with anger, not at Brian or my animals or close friends but at (most) other things. I use to say then that my daily motto was “chin up, boots on” and that I felt like a saber tooth barbarian some days, with flesh in my fangs.

That mode, horrifying to therapists everywhere had it’s place, it got the job(s) done. Paychecks were earned and crappy boss or not the work did get done, my husband had every minute of me, in love and care that I could give and he had excellent care when I was working becauseI was an effective advocate for his needs, big time. I even managed to get my mother appropriately evaluated and diagnosed at a fancy clinic in greater Minnesota. The world applauded my “strength“ (but was generally unhelpful until I hacked up money for something, so thank the universe for having a little of that When it was most needed, a luxury many a family does not have).

Here is the trouble with that highly effective operational mode, though: It sticks around. To live in a survival- warrior mode, to kill your feelings is to live half a life - or less. It occurred to me that over two years after Brian’s passing, eight months after my mother’s death, in a far better job, I was still shut down, still fighting, still only comfortable with love and anger as emotions. I had regained some capacity for spots of joy, I could see the sun again, yet in so many ways I have only been half here.

Background, I am a somewhat imaginative, creative person at heart.Definitely a passionate one. I love art and music, I am very visual and love all things beautiful. That’s me outside of my business life. One foot in the material world, another in Stars.

Reconnecting with an artist and musician who was my first romance, after 38 years and leaving this world from the same thing that took Brian has had it’s sad moments (oh, the unknowable what if’s for one, this was no puppy love even if brief and experienced so young) has re-opened a part of my mind and soul I had closed down. I am writing again. A friend dropped a card off for me yesterday taking Brian’s old carpet shampooer from the shed and I bust into tears looking at it, but it was good, I am really here tears. I hear music again, really hear it. I am not fearing feelings, not shut down. I can see a future with Brian as a memory that is still a real and good life.

D. Will pass, very likely sometime in the next year. He may even disconnect from our correspondence before then for a variety of reasons I could imagine In a man looking at the end of his life. Regardless, I know I will absolutely mourn his passing, and I also know I will allow myself to mourn it. I’m alive again, and it’s amazing.
 

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Thank you, Lenore, thank you. You are indeed alive, and you are very special. Warmest regards, Kevin
 

Narrowminded

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Lenore I have felt the same way. While the ugliness we went through happened, I think the only way one can deal is to put life in a box for a future, yet to be determined date. That includes feeling and just about everything from life. We go through the motions, we get the caregiving and work duties done and colaspe into bed exhausted and get up and do it all again the next day. When the end comes, we find it difficult to re-open the box, partly I believe because we have forgotten we even packed it, probably misplaced it as well. When we can finally find it, by whatever means and allow it to open back up, we start to heal. For some, they find that box almost immediately, for others like us, it takes time. I am thrilled you have found yours and that it is open again. Doesn't mean we still won't have tough days, just means we are living and breathing again and moving forward.

Hugs my friend,
 

Lkaibel

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Hi Sue,

I think this speaks directly to that line from the song “ I can know what no one else can know, I can go where no one else can go”.You need to have been there to understand it.

I want to hit up the newly Dx’d forums and be helpful, but I can’t yet. This thing is a horror show, and it drags the caregivers as well as a the afflicted into a crazy, hellish place. I’m so happy to be getting myself back, and for various reasons I credit my interaction with D. For much of that - it would have taken me another year without him for sure, not to mention getting some “closure” on a critical moment in both of our lives. Now, my mission is to send this beautiful, intelligent, creative person who lacks the partner that my Brian had out with a little more care and love than he might have had otherwise. I truly hope he keeps in contact with me until the end, because it‘s a privilege to be there for him, if only virtually (Minneapolis/Seattle).

We did indeed go through those motions, got the work and the caregiving done and woke up and did it all again. I recall LOVING my bed because it was the only place I got any peace - then feeling so guilty for said peace because my Brian could no longer be in that bed. No Brian in my bed - such an issue that I finally last year replaced a perfectly good mattress and took up sleeping on what had been “his side” of the bed so I would no longer look at “his side” and see emptiness, just at my “old” side…

Yes unpacking those neglected boxes of what we once called a life is a challenge, but also freeing and beautiful. I can be whole again, the “whole“ is just a different shape than before.

Thanks so much, Sue.

Lenore
 

Lkaibel

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Things are good! Here, surprisingly is how/why:

* I cried thinking about getting up in the middle of the night in Brian’s last days to give him
Medication.

* I cried about him being immobile and feeling lousy and still concerned about my being unsettled at night, asking if I was okay.

Over two years out, I can finally cry those tears and then go forward with my day. I can let myself feel and not break (which I actually first spelled “brake”, which is also applicable!).

I sometimes hope current CALS don’t see this forum much. It would have bothered me to know there were still spontaneous tears this “far out” from the loss. All I can say is, don’t be afraid. It’s okay.

I’m all heart and spirit at the moment, and it feels good.
 

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Oh Lenore it is still such early days for you. At two years, the wounds are still very raw, but as you are noting, they are strong enough to cope with you letting yourself really go through some of the tears we held in so long. hugs to you
 

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Tillie, thank you. I was just thinking how a really, really nice thing is that D also acknowledges that for me, Brian is still a fresh wound and that really little time has passed. I realize now that only people who have suffered major loss (and most have not yet, honestly particularly people under 50 ish) truly understand that. Being understood is something I think we struggle with in huge loses and the trauma that is ALS.

I recall a friend that I cut ties with very soon after Brian passed on. She had moved to California years before, but visited annually. The last time however that we had really seen her was the Christmas after Brian’s Dx when she stayed a week with us, and frankly even then some of her comments were not appropriate. The remaining two years of his life, she stayed scarce, coming to town but not making it over. Announcing on my Facebook that she was not going to read my blog because she couldn’t do anything about “it” (as if anyone cared).

Brian of course did pass, and soon after I left my job. When I said that I was going to spend my summer enjoying some boat rides, happy hours, museums, she went into a toot about how it sounded like I was looking for “escape” and “distraction” and was a “doing my grief work” with a therapist, etc. YUP, a woman who had essentially walked on us as friends, who is herself single/never married, and has sure as all never seen ALS (or anything comparable) was telling me how to grieve And what I was doing “wrong”.

It took me two days but I finally went on a Text Message diatribe to her because she kept poking me about why I was not in touch. I also thought it was educational potentially for her - if such a mentally is educable.

I say all this not to bitch aimlessly about a former friend, but to show that we CALS and former CALS encounter this lack of understanding regularly. In life, people don’t realize just how difficult coping can be. In loss, you are suppose to progress through 5 stages with a therapist (well, in the U.S. anyway) and be all good to go in 12-18 months. Are you dating yet? OMG….

No, in the real world you allow yourself to have feelings again over two years after the loss, five years after your own private hell all started, just now remembering who you were before all of this happened. It IS I must say a beautiful, if not always easy reawakening. Recent move, I’m eating pretty much fruits, vegis and various mostly non meat proteins. I have this huge urge to return to all things natural, and peaceful. We loved each other. We mattered. We will and have returned to the dust from which we came. It’s perfect.
 

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Thank you for that Lenore. I think lack of understanding is one of the biggest hurdles we face. People lose spouses all the time, some tragically, some to an illness that takes a few years, but the horror we witnessed with ALS is something only someone who has also gone through it can understand. I'm not saying any other illness is not horrible to those going through it, but it definitely taught us a lot about grief. It taught us that those 5 stages could take the rest of our lives to complete. That is something no one teaches you. They try to tie it all up in a bow as you said in 12-18 months. I say you haven't even started until after that time frame.

I am thrilled that you are making it through to the other side. I'm sure there is a ways to go, but to see the light at the end of the tunnel is huge. It feels good to see some light. Keep on keeping on and don't let any former friends or otherwise ever make you feel less than, and don't even get angry - they're not worth what they cause.

hugs,
 

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Made the decision to visit D for his September birthday, so I will be in Seattle 3-4 days. Looking forward to it.
 

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Lenore you will be in my thoughts as you travel to Seattle to visit D. It may be harder than you think to actually see him. This is just a warning due to a reaction I had seeing a friends spouse.

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Lkaibel

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Sue, yes I expect I’ll have a moment about that part. Beautiful, beautiful man inside and out (a girl had to have confidence to be with a guy that dropped so many jaws!) and very active and my first love and his body cancelled by this.
D, however is still in there and I’ll be so glad to spend that time with him.
 

Lkaibel

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Last night I had an interesting perspective from my housemate. She said she thought D was being selfish bringing ALS back into my life after what I went through with Brian. To fill in a bit, the housemate was one of Brian’s caregivers while I worked (though she did not live in then). She further offered that she really thought in the end I’d suffer much from this and that I was perhaps using D as a “Brian substitute”.

I genuinely appreciate her honesty. I’d much rather that friends bring such concerns to me than stay silent. I can say honestly that no one on earth is a Brian substitute. I can further say that in no way would I expect D to reflect on any of this being “hard on me”. The loses he himself has suffered from ALS are I think nearly incomprehensible.

Then, we have the last bit, which is that love is love, it does not care much about circumstances. We are obviously no longer a romance, but what we had all those years ago was very real. Love in its current, transformed shape remains. There is no one else from my past I’d be going to Seattle for in hospice, ALS or not. I just did not have that sort of emotional investment in anyone else. Interesting that my two “real deals” -D and Brian came on the opposite ends of my life. Brian of course being the mature, developed relationship of many years.

My point is, I do value my friend’s respectful concerns and input. I think I’ve just sorted it out pretty well.
 
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