Haunted

JimInVA

Senior member
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May 29, 2014
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957
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Lost a loved one
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VA
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Poquoson
For me, it has been a process of re-examining and determining who I am as a person. For such a long time, I was all about caring for my wife as first (and sometimes only) priority. That rediscovery was daunting and lonely at first, but I'm beginning to enjoy reconnecting with myself. Most importantly, I find that I really do like me. And that is a welcome step in the process.

Thanks for sharing your path. It gives strength to each of us on similar paths.

Jim
 

affected

Guru status reached
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Messages
13,485
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Lost a loved one
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05/2013
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OZ
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AU
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lala land
Hey Jim and Lenore - isn't it amazing how we move through grief, and then into a process of determining the new shape of our lives and who we are as a person in that.
I love how your story is unfolding Lenore 💚
and Jim knows how much I love his story every step too, kudos my friend
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,710
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Lost a loved one
Diagnosis
07/2007
Country
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PA
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Pittsburgh
Lenore I am thrilled this coorespondence is helping you in ways that most other things could not. I give you huge credit spending time talking with him. I still struggle when meeting other's with ALS.

Yup, we have been damaged and it plays a huge part in who we are now and how we look at the world and things that happen in and around us. I too have been telling people. Sometimes they feign understanding, other times they don't get it at all, but that is there problem, not mine or anyone here's.

Jim I'm happy to see you doing well too.

The insights seem to come in waves.

Keep trusting yourself.

Hugs
 

Lkaibel

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MN
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Minneapolis
Random thought, it really is a privilege to be with someone through their last years, months, days and to walk along on the journey. It’s a very special time to share and connect. I feel blessed to have done it, hard as it was.
 
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Lkaibel

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I should clarify since I can no longer edit, it is not of course a privilege to be a CALS in the sense that this wretched thing should not be happening to anyone, ever. It’s raw, hard, tough work. No one understands that better than I.

The sharing though of the final part of a life, in all of its memories, intimacy, insights -that to me is/was special. I have never been that close before to another human.
 

affected

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OZ
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lala land
I've always said if I had a choice would I do it again? Definitely. As hard as it was, it is the biggest privilege to share and I can only hope someone would do the same for me.
 

Lkaibel

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Encountering a teenage romance, with ALS and no CALS (sister in the area, people visit from out of state periodically) and in long term care is a very affecting experience following what I saw/did with Brian. Mind you, due to our unique history and due to his fabulous writing about his life and times I feel like he is giving me at least as much as I give him. He is even encouraging me to write-about whatever which I’ve wanted to do for some time now (he mentioned it, not me!).

I can say I’ll be touch with him as long as he wants to be in touch with me. Concerned friend says “So, you are going to lose someone else to this?!”. I say yes, but life is about cycles of loss, experience, pain, beauty. Life is on fire, we just bask in the flame.
 
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affected

Guru status reached
Joined
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Messages
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05/2013
Country
OZ
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AU
City
lala land
No one gets out of this world alive. Therefore, by their thinking, everyone you make any kind of friendship with may be lost.
I found writing the book about my experience as a CALS incredibly cathartic. It is a huge undertaking, but well worth it for me.
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,710
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Lost a loved one
Diagnosis
07/2007
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Pittsburgh
Lenore,

I am thrilled for you that you can help this very old very dear friend through a very rough time. I’m sure it may seem a bit different with him, looking in from the outside this time. Your knowledge and perspective can be huge to him. I wish you the very best with this.

hugs,
 

Lkaibel

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Sue, Tillie,

Honestly, I feel blessed. Thank you.

Lenore
 

Lkaibel

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06/2016
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I’ll admit my heart is a bit heavy this morning as D may have gone to the ER last night with a recurring infection. At least when things like that happened to my Brian, (weird all the ‘unrelated’ things happening to our PALS) he had me right be his side, every minute. A relative even nearby is somehow not I think the same.

Love comes in many forms, passion, friendship, and more and is I think always worthwhile. Don’t fear pain, I say fear apathy.

Love lasts longer than life.
 

Mary2

Active member
Joined
May 1, 2021
Messages
83
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
At least your D knows you are waiting to hear from him. I hope the MD's can get this infection under control!
 

Lkaibel

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Looks like D has pneumonia, in hospital with 104 fever. Hoping for a little more time for him to write and honestly for us to correspond. What will be will be, and no regrets on these three weeks of daily contact regardless.
 

Lkaibel

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Well, as it turns out not pneumonia but still a serious situation. Time and no doubt some choices will tell.
I’ve just really had this remarkable interaction with D, one so valuable to me and I believe to him.
 

Lkaibel

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1,457
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D is out of the hospital, the infection being much less than previously thought/ feared. I was so happy for him. We have more virtual conversations to have and he has more stories to write.

I feel so much for current CALS and other PALS dealing with these often mysterious complications of ALS.
 
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