Reply To: Do you ever feel “survivor’s guilt” about being a slow progressor?

[Douglas M Clough]

I do not feel survivor’s guilt top often. After 11+ years I have known people all across the age range and length of time living since Dx. I felt more survivor’s guilt when I know pALS and cALS die without reaching various “events” or desires. I have 10 grandkids. I know some who have died never having a relationship with someone else. Some don’t see their kids get married, graduate, become a teenager (yikes), go to Kindergarten, etc.

There have been times when I feel some guilt in all the life experiences I have done through other peoples efforts. Those things truly are gifts. But I realize that I am out there doing one or two things with various ALS organizations They were given or donated because of shared interests, thanks, publicity (a logo or talk at an event).

None of us know when we are going to die. We don’t even know if it will be from ALS. My heart hurts when I see someone I know pass before the see their kid attain or reach something. That goes away quickly when the family and friends thank me for whatever they say helped. My desire through all of this is to show that Iif I can do it, then it might encourage someone else to try something they might never have tried before.