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At just past a year, I’ve had ups and downs. Right now I seem ok, but who knows what tomorrow will bring. It does seem very surreal. Many times feeling like rip van winkle. With the number of years we dealt, I missed my 40’s and more than half of my 50’s. So no, I def don’t feel my age. I feel the age when this started.
 
I feel often times that we were fortunate for a relatively short course. As awful as losing him is, I don’t know what would have been left of me if I had been a CALS for 8 or 10 or 15 years.

There is the truth of flying around the country after he passed like a bird out of a cage, and one of my favorite things being able to pick up and go for dinner, drinks with friends, or just a walk at will. Heck it can be hard to do that married. As a CALS, it’s impossible.

I feel guilty to say it, and I miss HIM like crazy, but those evenings and weekends at home negotiating my own shower and meal times and days at work managing paid caregivers remotely, I can’t miss that.

Today is nine months exactly since Brian passed. It no longer feels “new”. The loud silence, as CALS PD Craig described it, is in my house still for sure, but it’s slowly being filled by the sounds of life.

I’m taking the livingroom apart this weekend. The tapestries Brian’s grandmother weaved and the dream catchers his sister made are leaving my walls and going to his niece.

I’m giving the enormous super special featured recliner we bought Brian to a friend. The chair is where he went when he could no longer walk, and there he stayed until he went to his hospital bed. I thought I’d keep it because it’s an amazing chair. Truth is, I sit in it every few weeks and I hate looking at that empty chair. Poof, off it goes to be used properly.

The NEXT next part of the journey is the life that belongs to the living.

.
 
Lastly, I made a decision on the ashes when I finally do get them back from the University of Minnesota. It will be some time between March and September, 2020.

I am simply going up North to some Lake Superior shoreline and releasing the ashes for Brian, his mother, and our dog Tori. I’ll go on my own and have a two night stay somewhere there, but may only stay one night. I will not go to any of the beautiful homes we use to rent, except maybe the condo units that are right in the downtown of Grand Marais.

The big homes hold too many memories. It had first been an idea to take the ashes to the one of those homes and release them
From the shoreline there and do it with some friends. I’m not up to another full tilt memorial.

I’m really glad Brian did the body donation to the University. I think that particularly for PALS it’s a great plan because it’s such a good and important way to participate in research at no expense to your actual lifetime. Most newly diagnosed people want to participate in studies and bless them for the sacrifices. This is a way to do it risk free.

A time comes to move forward with the love and memories intact, and I feel myself moving ever more into that time. This very weekend is when the substantial changes to my house begin. My house, not his. Not Goodbye sweetie but a long Goodnight.
 
Lenore I am so happy for you that it seems you’ve found your feet and legs for now. So exciting for you. I think you have some very good plans moving forward. I wish you well in all of them.
 
You have Gone through so much for so long Sue but I think you are getting there. You know how to keep going. 🥰
 
Thank you Lenore. You are very kind.
 
I just bought a boatload of new living room furniture. I am very fortunate to be able to transform my living room from the the space Brian passed in to one that will look like all me.

Christmas week of course sort of sucks, but again lucky to be starting a new job tomorrow . Gotta love heavy distraction.

I see 2020 as truly the fresh start, the year I step into my new life. I don’t have anything I would not trade to have Brian back. That loss is inconsolable, the wound mortal in that I can never be the person I was before ALS and losing Brian happened. To paraphrase Heathcliff, the world remains one long memorandum that he was once in it and is no more. In addition my mother ( essentially) , my dogs, my nephew, two in laws, and by my choosing my job of 5.5 years all gone nice that fateful day of diagnosis, 6/30/16.

So, it’s not only a new me I’m dealing with but a new world. Well, here we are together, and forward we will go.
 
Agree!! The next year is about my time, who I am now, forever shaped by my PALS, but time to carry on now? I wish all a very peaceful Holiday season, whatever that means for you and yours. Thankful for all of you, we are not alone, sorry we met this way. Best to all !! katie
 
I’m looking forward to this year being a fresh start as well
 
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