Friends & ALS
As we know, Brian and I are early on in this thing called ALS. We appear to be blessed with slow progression. We are going to be in the seven month mark sense diagnosis on January 30. Here we are, Brian walking with just a cane, going to pool therapy and adaptive yoga, driving, doing stuff. A lot of people with ALS, particularly people his age are well on to or in a wheelchair at his point in a diagnosis.
Yet, no matter what course ALS takes I think it changes pretty much everything pretty quickly. I work 45 to 50 hour weeks while trying to ensure I am performing at something close to my best capacity and the rest of time, I spend with Brian. I want to be Brian both because we don't have all the time in the world and because I think being retired and dealing with this he spends enough time on his own. Yet, I still need a friend night out sometimes, too (as in just me and a female friend). I like when we go out together with friends too, or when they come here to our place. I love that we have been offered some random friend help too. Favorite things that have happened lately:
*My friend from high school, Jeani just asking me to come to movies with her. Just hanging out, grabbing some dinner was awesome. It's hard for me to initiate stuff because I am distracted and thinking of too much at once. I am glad she did.
*John, both for coming over as a total volunteer on three occasions to help shovel and for just hanging out with us one Saturday. So nice. Next year I get the snow removal service on board early in the season for sure, but this has been super helpful. I have steep stairs in the front and the shoveling piece is hard on my just in general when snow gets too thick and heavy.
Loving also friends who have contacted me just for brunch or whatever. I don't make the effort I once did to ask people out, and I suck at returning calls sometimes, and my whole brain just seems wired a little differently since this happened. I feel jerky sometimes, like I am ignoring people. I don't mean to for sure. I hope people understand. The wine and coffee are always here, and honestly please feel free to pop over and say hi anytime. One or both of us are highly likely to be around. Shoot a text if dinner randomly strikes your fancy. We love our friends to bits, and my little brain sometimes deals better now with spur of the moment than with plans.
I have had only one negative experience since this happened, and it was pretty negative. I am still sort of shocked by it. Suffice it to say that if any of us know anyone dealing with a terminal diagnosis, please let that person discuss it on THEIR terms and time, please do not share it with others like it's your news to tell, and please avoid reminding them of how awful it all is by stating the obvious "well, he's not going to get better". Really? That's your educational message of the day? Anyway, more than enough said. Wow. Just wow.
I hate to end on a negative note. The takeaway here is that we love our friends, and even though we have been more scarce we think of you.
Yet, no matter what course ALS takes I think it changes pretty much everything pretty quickly. I work 45 to 50 hour weeks while trying to ensure I am performing at something close to my best capacity and the rest of time, I spend with Brian. I want to be Brian both because we don't have all the time in the world and because I think being retired and dealing with this he spends enough time on his own. Yet, I still need a friend night out sometimes, too (as in just me and a female friend). I like when we go out together with friends too, or when they come here to our place. I love that we have been offered some random friend help too. Favorite things that have happened lately:
*My friend from high school, Jeani just asking me to come to movies with her. Just hanging out, grabbing some dinner was awesome. It's hard for me to initiate stuff because I am distracted and thinking of too much at once. I am glad she did.
*John, both for coming over as a total volunteer on three occasions to help shovel and for just hanging out with us one Saturday. So nice. Next year I get the snow removal service on board early in the season for sure, but this has been super helpful. I have steep stairs in the front and the shoveling piece is hard on my just in general when snow gets too thick and heavy.
Loving also friends who have contacted me just for brunch or whatever. I don't make the effort I once did to ask people out, and I suck at returning calls sometimes, and my whole brain just seems wired a little differently since this happened. I feel jerky sometimes, like I am ignoring people. I don't mean to for sure. I hope people understand. The wine and coffee are always here, and honestly please feel free to pop over and say hi anytime. One or both of us are highly likely to be around. Shoot a text if dinner randomly strikes your fancy. We love our friends to bits, and my little brain sometimes deals better now with spur of the moment than with plans.
I have had only one negative experience since this happened, and it was pretty negative. I am still sort of shocked by it. Suffice it to say that if any of us know anyone dealing with a terminal diagnosis, please let that person discuss it on THEIR terms and time, please do not share it with others like it's your news to tell, and please avoid reminding them of how awful it all is by stating the obvious "well, he's not going to get better". Really? That's your educational message of the day? Anyway, more than enough said. Wow. Just wow.
I hate to end on a negative note. The takeaway here is that we love our friends, and even though we have been more scarce we think of you.
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