20 Months Later

Lkaibel

Very helpful member
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Joined
May 9, 2016
Messages
1,374
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
In 12 days, it will be months since Brian passed. It feels like a long time ago and like yesterday all at once.

I may or may not have stopped in here about six weeks ago to tell the story of his ashes, I can’t recall. I finally got them back from the University of Minnesota anatomy bequest. Word up, if anyone is thinking about doing a whole body donation for research who has ALS, it’s a very worthy cause but it WILL take the full 18 months stated as maximum time to get those ashes back to your family. I was sure that would be the case as ALS research is fast a furious now (hurray!) and subject donations rare.

I went to Northern Minnesota, found a resort where we had frequented the restaurant on our many trips there, found a pier just outside the guest rooms and committed Brian’s ashes to Lake Superior. I also put the ashes from our beloved dog, Tori in the water as she had always loved our trips and the Lake. Some of Brian’s ashes wound up on the pier from wind. He would not have minded. I keep some for a container I have here at the house containing other personal items from him.

Life, well I have good days and harder ones. I will not say the second year is worse. It’s different. This year is complicated by the weirdness of Covid semi isolation ( I work about 60-80% from home). I have a housemate here now and her son, a good friend who helped care for Brian and had to get out of a crappy live in partner situation in Nevada. She keeps house for me and will not be leaving anytime soon.

I’m still in my house and have made inroads on making it truly mine. I recently bought a new bed and I now sleep on the side Brian once slept. It’s an enormous relief to me not to sleep in the bed where he is missing, and to no longer look across at the side where he once slept. It makes no sense but there you go.

I’ve got a great new job as of June, I’ve lost 55 pounds, I’ve got great friends, animals I love and my house comes together more all the time. My 84 year old, dementia ladened mother is very near the end, but that has been expected. Other than that, I have everything in the world but Brian. Our love was epic, the loss was enormous, and I still struggle at times with how to sustain in and move fully forward. I know it will never go away, do I’m just trying to live more comfortably with it because that’s the best we get, I know. I think it would help a lot if I could move around the world normally. I don’t know how current PALS and CALS stand it at all.

I’m in online therapy, it’s sort of interesting. Always gives me a place to chat about myself, and whatever. Halloween is done, Thanksgiving and Christmas loom but that’s okay. I’m putting up a tree for the first time since 2015 because the housemate is into it. I’ll cook thanksgiving for the three of us too because plans to be with my brother in Honolulu fell to the Covid situation. It’s to complex to go there now. Next year for sure, and I’ll stay 10 days minimum. It’ll be interesting, bringing holidays truly to this house again.

Funny thing is, much as I struggle at times it has occurred to me that I may have another relationship again, I will have fully one day a “new normal” life. This is another me being born slowly and sometimes painfully.
 

KevinM

Distinguished member
Joined
Mar 30, 2019
Messages
178
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Lenore, thanks so much for checking in and updating all of us. I’m so very pleased that you are carving out your new life, and I know Brian would be pleased. My wife and I have had numerous discussions about her life after I am gone, and I hope she fares as well as you.

Near the end of his life, my Dad prepared a booklet for me describing what to take care of upon his death (I am forever grateful to him for doing that), and in his personal words to me he ended it simply with “Son, life will go on.” The hole will never completely heal, but of course he was right.

Wolf Blitzer ends his news show each night poignantly describing the lives of several people who died from COVID, and he ends it with “May they Rest In Peace, and may their memories be a blessing.”

May Brian Rest In Peace, and may his memory always be a blessing, Lenore. All the best, Kevin
 

Bestfriends14

Senior member
Forum Supporter
Joined
May 7, 2017
Messages
981
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Thank you for coming back and sharing your path in life, Lenore. I am glad you are finding your footing, getting healthy, and seeing (and welcoming) new changes for you. Brian would be so happy that you are moving on and finding happiness.

Best of luck to you, Lenore. Please update us from time to time; I would love to hear how you are doing.

Joanna
 

lgelb

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Joined
Nov 5, 2009
Messages
8,921
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Lost a loved one
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00/0000
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WA
City
Seattle
It is never over...we do go on, often very differently than we might have thought. Glad you are in a good chapter, Lenore.

Best,
Laurie
 

Lkaibel

Very helpful member
Forum Supporter
Joined
May 9, 2016
Messages
1,374
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
Thanks everyone. With an abundance of faith that Covid will not sit forever on our heads, I booked to visit to Mexico for the Day of the Dead celebrations in 2021. It’s a National Geographic tour and I have wanted to go for decades.
 

jonico

Active member
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Joined
Feb 21, 2017
Messages
62
Reason
Lost a loved one
Diagnosis
12/2014
Country
US
State
NY
City
Central
Hi Lenore,

Just a quick note to tell you I loved your update. It's helpful to me to hear someone's story a couple years into the after...

Arranging for the full body donation for research was a fabulous gift from Brian! I didn't know about such a thing, and wish I had looked into it. All I knew was that my wife was designated an organ donor, and I figured at least that would just happen. I am quite sure nothing was even donated. Brian's contribution, and both of your thoughtfulness on that was very special. Thanks.

I also enjoyed you sharing your spreading of the ashes experience. I think the pier is a pretty cool place for some of them to hang out. Nicole wanted some of her ashes poured into the Ausable River near Whiteface Mountain in the Adirondack Mountains of New York, and some spread on top of Blue Hill Mountain in Maine...two special places for us.

Happy you sound to be doing quite well. All the best...Jon
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,631
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Lenore,

I‘m not sure how I missed this post. Yes, a solid 2 years will be here at the end of the month for my Brian. Some days I feel like I’m coping well, others not so much. And yes a second year during COVID really plays with your brain. I am so happy you have a house mate, as the loneliness can be overbearing at times.

I too am working on my home. Moving didn’t seem to be in the cards, so I’m trying to make this place more mine, abiet rather slowly.

so thankful you could share your goodbye at the late with Brian, a place you both loved.

Congrats on the weight loss, and the new job. I wish you much success in your planned endeavors.

We will be having Thanksmas here due to DD living 10 hrs away and having to work Christmas Eve. My house is nearly decorated. Hopefully next year you can go to Hawaii.

thanks for stopping by. Miss you my friend
 
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