ALS Activism for Former CALS

[affected]

I couldn't agree more Lenore, the darkest days were much the same to me.
People here became my family, and I will never forget what that meant to me in those dark days.
It's so important that everyone be able to share their story, storytelling is so impactful.
So sad if others try to distract from this by 'pointing out' and posturing.
Laws and even beliefs are so different in so many places, and this is indeed a global community here. So being able to each tell our own story, allows us each to have a significant and deep, beautiful impact on others in those dark places.
I have watched you bring so much to so many here, even though the reason for being here was for you to be supported.
Isn't it wonderful when the support just naturally flows both ways?
And lastly, I love it when what we went through, and what our PALS went through, can continue to help bring others through. To me, personally, that has helped me feel there was some sense to be made from what my Chris went through, and what I went through.

Our path was different, and yet what we went through is able to help others, just as your journey with Brian will continue to help others because you were able to tell the story and it is now always there to be read. Thank you again for doing this.

If you don't come back after this thread, I just wish you so much ability to find joy, beauty and peace in life. We are forever changed, but that doesn't have to always mean a negative.
Thanks for being so genuine here every single time, it has meant a lot to me, and many others

 

[lgelb]

Lenore, some of the issues you mention are why I also remind CALS they do not have to use hospice at all. As you know, many of us do not. That is a tradeoff of the benefits they provide vs. the control they assume, which relates to more than drugs. Everyone's tradeoff is different, and agencies are different, too.

A PCP or other specialty can write morphine for air hunger. What you do with it in terms of titration is then up to you. That is why/how I and many others I know of have given our PALS the passing they wanted in minutes or hours, depending on preferences, not days. I'm not commenting on what you did, just pointing out that there are other options, that I've helped with in states and countries much more conservative than yours.

My point regarding the laws was simply that they are another form of control, subject to constraints and procedures that are, again, not necessary, and therefore they are seldom used as end of life plans. I will stand by that. If you "break the law" in any respect once you have activated it, that is more visible than avoiding it entirely. I completely agree that self-directed and assisted death deserve more prominence and less stigma, so I'm happy that you shared your story.

--Laurie

 

[njk0407]

I completely disagree too. I will never stop fighting until a treatment or cure is found. My husband passed away on January 4, 2021 and I will continue to fight as long as I am on this earth!