The Next Part of the Journey

Narrowminded

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Lenore what you are feeling is totally normal. I feel the same as well. It’s something you can’t quite put your finger on, much less explain to others. I think going to hell and back does that to you.

I too have much less tolerance for petty crap, but try to stay positive and put effort forth to become a better version of the new me.

Hugs
 

Lkaibel

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First birthday without Brian. I went on a boat ride and had margaritas and tacos with a friend and binge watched “Victoria”. It helped, it was a decent day. I plan stuff for the “special” days. You gotta to not sink.

Last night I saw “The Hours”, a film from 2003 with Meryl Streep. There was a scene where a man with AIDS looks at Meryl Streep and says “I love you, I think we’ve been about as happy as two people can be” before leaning back out of an open window, tumbling to his death. I cried really hard, but heck I think that helped too.

My trip to Vegas this month may be the end of me. I’m seeing two shows, touring Red Rock Canyon (where we got married) in a stretch limo, celebrating one friend’s birthday, meeting up with a friend who just moved there, and a CALS widow I know is also in this trip. It’s all happening over just three days!

It’s good I’m not working now, I will need a rest after all that :)
 

affected

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oh you go girl - I'm such a believer in "do what ya gotta do" and you've figured out lots of gotta's! 🥰
 

Narrowminded

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Enjoy your time as best you can and heal.

I’m sure that cry was very therapeutic. We need those.

Have an awesome 4th
 

Lkaibel

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I went to a place last night to meet a friend that Brian and I frequented when he was first diagnosed, that first summer. We were there 3.5 hours and had a great time. Then, there it was. On the short drive home I burst into tears and started yelling “Why?!” To myself. I thought I was still driving okay. I must not have been, because a cop stopped me. I pulled over, took a deep breath...

The officer started talking but I looked up and since it was still light out (8:30 is still light in Minneapolis this time of year) he got a good look at me. Immediately the officer said “ What’s wrong ma’am?”. I told him my husband passed from ALS on March 13th, I’d just been somewhere we use to go a lot, and I just lost it a little. Without hesitation, he asked if I lived far and said he’d follow me home, or his partner could drive my car whichever. I said following me was fine. He said he was not going to run a breathalyzer or walk me, but if I was drinking a little too much beforehand to please be careful and not do it again.

I assured him I’d had one drink and much food and thanked him for believing me about the alcohol and the ALS. He said “ALS is not something people make up”. I asked him if I was driving terrible. He said no, just a little too much rocking in the lane, they watch for that. When we got back to my place, he rolled the window down and said “I am so sorry. You take care of yourself now.”. He made me wonder if he had some firsthand with this beast.

Overall, I was super impressed with the kindness, particularly in my very “ urban” neighborhood. Lessons learned were 1. We are never doing as well as we think we are as close out as I still am. 2. If you lose it in the car, pull over!

Today I’m cooking. I have not cooked in literally years. It’s a beautiful stew I first made when I was 26 out of a Julia Child cookbook. Feels like life back in the house. It’s a good day to recover from a moment where the reality of a certain Bronte quote hit me “The entire world is a collection of memoranda that he did exist, and that I have lost him.”, to paraphrase on gender.
 
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affected

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“The entire world is a memorandum that he was in it, and I have lost him.”
wow, that sums it up the best I've ever heard!

I'm so impressed with that cop who did the right thing and looked after you. What would slapping a fine have done, even if he had technically found a reason? Getting you home safely and showing compassion will have done things that will ripple through the rest of your life ☺ 💜:love:
 

Narrowminded

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Lenore I love that quote.

It does sound like that cop has some first hand knowledge of ALS, when saying that is not something you make up. If he does, he may have been crying with you on the ride to your home. So thankful for the wonderful compassion you received. Esp in this world today here isn’t he states.

Happy to hear you did some cooking. It does make one feel good, now if I could just remember that. :)

Hugs
 

Jrzygrl

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I am so glad you ended up with such a compassionate escort home. There are good people in this world. ❤

Cooking a nice meal is therapeutic for me too.

Love the quote!
 

Lkaibel

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I am somehow both humbled and appalled when I go to other boards on this site. Seeing people newly diagnosed is heartbreaking on the one hand, but reminds me also of the great things in our first months and year and even beyond with ALS. Going to the in Memory and seeing that a 31 year old person has passed - no words. Brian was 68.

The first year we took our boat trip, went up North a couple times, went to these super fun happy hours on the regular (this with a man who had always acted as if spending money in restaurants and bars was a mortal sin!).

You’d think about a year in, when his progression sped up the party would be entirely over but nope, not just yet!

I never had as much fun watching a football game as I did with Brian when he was in the hospital after his appendix issues (which were later determined to be ALS med protocol related, another story!). I was so relieved that he was as okay as he could be, and coming home with me after that frightening episode and the the days of essentially explaining ALS to Doctors and Nurses. That was before I learned to call our specialist and ask him to explain it lol!

I remember too my huge relief at having him back after his crazy opioid induced bowel issues. I actually enjoyed the time I spent at the hospital with him and people were so very kind. When he came home from that, about 7 months before he passed it was indeed the beginning of the true end. The staff came in daily, except weekends when it all me all alone. The work of care and working was a heavy life indeed, but again still good times. I still loved holding hands, sharing a wine, taking. He could always talk. SO happy for that!

Really, it was only that last odd six weeks or so that were pretty purely dreadful. I’ll admit much about that time was like crawling through fire on broken glass. I have NO idea, in retrospect why I worked for five of those six weeks.

It’s pretty amazing though to go through all that and only have six weeks at the end that just felt pretty entirely hellish. Goes to show even in the worst situations we can be so blessed.
 

Lkaibel

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Normally would not post a second time today in this thread, but a milestone happened: I started letting go of Brian’s things in the house, beyond the phone and the medical that let go of before.

I sold some of his tools and ladders. Those projects were a big part of him, but it’s time.
 

affected

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There is no right time, or no time frame for anything - when you feel the time is right for anything in this whole ordeal, it's time!
Someone will really appreciate those items, makes no sense for them to sit in a garage once you know it's time
 

Narrowminded

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Lenore I can see the healing and love in your heart as you relate the years and how they felt looking back. Letting go is both cleansing and hard. At least it was for me.

I may have a whole new session as I attack the garage, but I will be thinking of you and what you have done to move forward.

Hugs my friend!
 

Lkaibel

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God alert: if it upsets or violates board policy please pass up/move/remove:

Not to delve too much into the topic, but something that is really helping me is this: The weight of what happened to Brian is much to heavy for me, so I give the burden of that up to God.

Raised more or less Catholic and not being a Churchgoer now, I recall when Brian was alive I was inspired by Christian who’s wife was dying of stage IV Cervical Cancer that he “laid his burden at the cross”.

Brian was agnostic (until a few weeks before he passed anyway) and I’ve lived my adult life as a regular heathen, pretty much. This just made me feel much better.
 
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