Irony...

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SpeedyMarie

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Joined
May 24, 2019
Messages
20
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
City
Houston
Talking with my friend an older man R. His partner my friend Mark an artist whom passed last year. Both survived the AIDS epidemic in the 80s. My friend has AIDS, Hep C etc. When he lost Mark my first thought was him. So I adopted him, we all need people to care. We were chatting today he’s had more loss than I could imagine. I introduced him to Steven Levine’s site ( grief work) he took my diagnosis hard. I’m not dead yet hope to have more time to boot.

So chatting with him about my daughter wedding. He asked me if was hard because of the ALS. I told him no I’ve been working on that it’s just a part of me I have been accepting this is a joyful thing my symptoms are okay at this time. I want to celebrate my daughter’s time. He had a hard time with that but you have ALS, yes I’m dying but we all are I just know it’s closer. He told me that he would have died 27 years ago from AIDS if he thought like me lol
 

KimT

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Extremely helpful member
Joined
Nov 18, 2014
Messages
3,530
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I think it is very important that we stay as positive as possible. For me, that meant reading books by long-term ALS survivors, finding new friends, treating myself to pampering things like facials, mani/pedi for as long as possible, and relying on my spirituality. It also helped me to really connect with other PALS and CALS but not identify myself with the disease. I recently joined another forum that had nothing to do with ALS and it was uplifting for me.

It's different for everyone. I'm really not afraid of death. I am more afraid of the dying process and being in chronic discomfort. I lost a close friend and next-door neighbor to AIDS. It was very hard to watch but my mother had the strength to help him emotionally.

We all need someone to lean on and, sometimes, that person or persons change.
 

SpeedyMarie

Member
Joined
May 24, 2019
Messages
20
Reason
PALS
Diagnosis
08/2019
Country
US
State
TX
City
Houston
I whole heartily agree. Enjoying life it is a gift and connecting with people and your spirituality is so important. I pray a lot myself. Keep on keeping on :)
 
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