The greatest gift we can give our PALS

[scaredwifetx]

Today was one of the good days and at the end of the day... I realized... the reason it was so grand. Steve was tickled, happy and talked to me like he used to before ALS came into our lives.

Why did he choose today when there was nothing special going on? It was because I was my pre-ALS self. I was all excited about making some silly shoes and costume for Halloween. He shared in my joy and funny humor. Funny humor has not been my friend for over a year now.

I sit alone as he sleeps and am very touched by today. I realize that what is so important to him... is to see me as the person he has loved for so long. He fell in love with me because I was able to find joy in our world and feared so very little. I was fiercely independent, loved the outdoors and lived my life with an amazement like a child on Christmas morning. I loved knowing that someone else found so much joy in my happiness.

It must be so hard for PALS to watch the changes in the CALS. The sorrow, anger, the fatigue, and frustration. They are dealing with their own losses and have to watch the change in us. I also know that Steve worries about me and how I will
take care of myself.

PALS don't want to look ahead and they want to enjoy the moment. CALS however take on a different role.... always planning ahead. I think the guilt of watching their loved ones worry, working so hard and the sadness... must be a very big burden for them to bare.

I know I can't go back to who I was before this nightmare started... but I can do better at finding some of my old self buried behind all the crap. I can do better at enjoying meaningless moments with him and leaving ALS locked in the closet where it belongs if just for a little while.

I think the greatest gift we can give our PALS is letting them know we are and will be ok. The first step is to hold on to what they loved so dearly about us... what ever that may be.

Thanks everyone for being here and letting me share.

 

[affected]

that's so beautiful Deb, thank you for making a difference!

 

[Nuts]

Deb, you are SO right. Beautifully said. It's hard to keep this in mind, but it's true. We often feel guilty about doing happy things, but that is what our PALS want, and it gives them pleasure to see it. Thank you for the reminder.
Becky

 

[KateEmerson]

Thank you Deb, you expressed that so well. And thank you for the reminder, when I joke with my husband Job like we use to it puts both of us in such a better place emotionally.

 

[FamilialALS?]

What a great bit of insight. And so well expressed. After mom was gone and I was going through old pictures I rediscovered parts of my mom that I had forgotten about. She used to be the jokester at work. She loved taking bus trips with her work friends to Los Angeles to watch filming of tv shows.

She used to love to go dancing. I wish I had uncovered those memories before she passed so I could share the smiles and laughs with her.