I’m Not Putting This on Caring Bridge Mr. J and I were down in the laundry room, transferring laundry from the washer to the dryer. I couldn’t help but notice my feet were damp. Turns out, the screen we keep on the hose into the wash sink, was completely covered in lint, and water spewed out at weird angles, including all over the floor. “Could you. . . “ I say. “Yes,” Mr. J says, and wanders up the stairs. Because I had oh so cleverly purchased some additional screens when I put the last one on. Pretty impressive, don’t you think? “They are at the top of the stairs,” I call. Meanwhile, I transfer laundry from the washer to the dryer. I start the dryer. I load the washer. “Hey, babe,” I call out just as Mr. J came back into view. He had a dog poop bag in his hand. As he was saying, “I forgot what I was looking for,” I was asking, “Did you forget what you were doing?” Oddly, (or not) it didn’t hurt nearly as much as it did the first time this sort of thing happened. Or the second time. Or the eleventh time. . .
This does not compare on the order of magnitude of what Mr. J. is experiencing, but when I was at the height of my long COVID cognitive dysfunction and my brain would use the wrong verb tense or could only come up with workaround descriptions for commonly used words (at age 45, mind you), people I told this to in their 60s-70s would say stupid shit like, “oh, that happens to me too.” It’s so incredibly misguided and dismissive. It’s really their way of saying, “you’re not so special, you know.” I would press harder with them. Turns out they were forgetting where they put their keys (normal), not forgetting the difference between past and present tense (not normal). Also, I had a brain lesion from COVID. Many did not want to believe a virus could cause such issues.
We’d all be much better off if people didn’t operate with such arrogant certitude so much of the time.
Good for you! Not only do you not need to post it on Caring Bridge, but you don’t need to tell anyone in the family. At all.
His condition will continue no matter how much they deny it, and he won’t miss what they are saying at all. So, now it is about you..and what brings you contentment and calm. Whatever it is, that’s what you do.
Maybe it IS time to put a new message on your answering machine, something like: if you’d like to bring over dinner, press 1 to hear a list of our favorites, press 2 to hear what household chores you could do for me this week, press 3 if you would like to schedule a day to stay with Mr. J. so that I can go be by myself for a little while, press 4 if you want to know what yard work we need done.
Press 5 if you’re calling to give advice, share a new healing modality you heard of, tell me that I just need to pray harder, or that God never gives us more than we can handle… and you will promptly be hung up on, and blocked from calling any further. If your phone won’t process any of these choices, you may drive buy and take a look at the list of specifics things by the front door. Please don’t knock unless it answers options 1 thru 4. Tah-Tah.
SO many hugs back to you. Guard your calm with ferocity. And when in doubt, send any of us a dm, and we’ll remind you of the health in maintaining your peace.
Unfortunately, so much of this will be familiar ground to you when you get to the "after" grieving process.
The denial. The denial. The DENIAL!
And I can relate to where you are now.
My wife arguing with her Dad who kept expecting her to get well for five years… Friends who finally gave up trying to be in touch, because there was no room for the "we can fix it mentality" etc. Fucking etc.
My favorite, on a clinical level - midst all of the dying that was already going on, and all the metastasis - when it came time for "whole brain radiation" we were advised that some patients had experienced difficulty with their Scrabble game after WBR - as if side effects were limited merely to vocabulary prowess.
My brilliant (!!!), funny, amazing and beautiful wife wrote incredible updates on her own cancer journey (which I should find a way to share here ). At one point she was working on what would've been her next update and was in process of writing it for many months - never to be completed. Now, with time on my hands that I wish I didn't have, I have looked back and unsurprisingly found that the date of the stoppage was immediately post WBR.
Along with that - so many other "discoveries" as I begin to remember, and continue unpacking all of the ways in which she was heartbreakingly losing her mind and her sense of self over those last 3 years. I think her oncology team simply just didn't expect her to live that long. And if they did, then it may be one of the cruelest things I've ever experienced. It was anyway.
I send you my sincerest, deepest respect and support ❤️🫂❤️
Some people can't understand a reality other than their own. Their world is so small, and anything outside of it doesn't make sense. If they can minimize it, they can solve it. Hang in there, friend. You're doing great.
" some of the family - loves to push back" I feel for you, I really do. I know this sentiment all too well. When my late husband was dying of pancreatic cancer, his bile duct got blocked twice. I had family saying "He can't be dying. His coloring is wonderful!" Yeah. The poor guy was orange. No Caring Bridge for me either. Hang tough. Praying for you and Mr. J.
I am going to be writing more about this topic - maybe as early as next week. I know people mean well, so I believe they just need to be taught what not to do. I'm sorry for your loss.
I hear you! The tortuous changes that we register are heart-stabbing. When others gaslight the truth, reality AND our experience, it's enraging. At the start, I used to let it slide or invest time explaining, hoping I'd have emotional support, grateful for their good intentions. The transition to setting boundaries and conserving our precious energy was relatively rapid!
Thanks for sharing. Heartache and reality of it all!
You hit it on the head, Victoria. When others gaslight our experiences, we feel unseen. Also misunderstood. I am confident people don't know how very hurtful this is.
This comes from a place of deep experience and reflection, Anne! I wasted too many hours trying to think of come-backs, explanations and one-liners...Hence, hard boundaries...with hopeful forgiveness, that they will become more enlightened/aware.
I can forgive people who don't know what they don't know...what I couldn't forgive were those who blatantly disregarded what we said, thinking they knew what was best and created heap-fulls of drama, stress and angst. (soapbox is well constructed on this point!).
I, too, spent too much time on comebacks, explanations, etc. Until one day my therapist said, "You know, you don't always have to be right." True words. It was very freeing.
Exactly right. You know what is best for your mental health. Protect yourself and do what brings you contentment.
This does not compare on the order of magnitude of what Mr. J. is experiencing, but when I was at the height of my long COVID cognitive dysfunction and my brain would use the wrong verb tense or could only come up with workaround descriptions for commonly used words (at age 45, mind you), people I told this to in their 60s-70s would say stupid shit like, “oh, that happens to me too.” It’s so incredibly misguided and dismissive. It’s really their way of saying, “you’re not so special, you know.” I would press harder with them. Turns out they were forgetting where they put their keys (normal), not forgetting the difference between past and present tense (not normal). Also, I had a brain lesion from COVID. Many did not want to believe a virus could cause such issues.
We’d all be much better off if people didn’t operate with such arrogant certitude so much of the time.
So true, Amy. So true. I am sorry for your challenges.
Good for you! Not only do you not need to post it on Caring Bridge, but you don’t need to tell anyone in the family. At all.
His condition will continue no matter how much they deny it, and he won’t miss what they are saying at all. So, now it is about you..and what brings you contentment and calm. Whatever it is, that’s what you do.
Maybe it IS time to put a new message on your answering machine, something like: if you’d like to bring over dinner, press 1 to hear a list of our favorites, press 2 to hear what household chores you could do for me this week, press 3 if you would like to schedule a day to stay with Mr. J. so that I can go be by myself for a little while, press 4 if you want to know what yard work we need done.
Press 5 if you’re calling to give advice, share a new healing modality you heard of, tell me that I just need to pray harder, or that God never gives us more than we can handle… and you will promptly be hung up on, and blocked from calling any further. If your phone won’t process any of these choices, you may drive buy and take a look at the list of specifics things by the front door. Please don’t knock unless it answers options 1 thru 4. Tah-Tah.
Ps…. I’m kinda sorta not joking…. ((Hugs))
I love this so hard!! This is awesome. Thank you.
SO many hugs back to you. Guard your calm with ferocity. And when in doubt, send any of us a dm, and we’ll remind you of the health in maintaining your peace.
Unfortunately, so much of this will be familiar ground to you when you get to the "after" grieving process.
The denial. The denial. The DENIAL!
And I can relate to where you are now.
My wife arguing with her Dad who kept expecting her to get well for five years… Friends who finally gave up trying to be in touch, because there was no room for the "we can fix it mentality" etc. Fucking etc.
My favorite, on a clinical level - midst all of the dying that was already going on, and all the metastasis - when it came time for "whole brain radiation" we were advised that some patients had experienced difficulty with their Scrabble game after WBR - as if side effects were limited merely to vocabulary prowess.
My brilliant (!!!), funny, amazing and beautiful wife wrote incredible updates on her own cancer journey (which I should find a way to share here ). At one point she was working on what would've been her next update and was in process of writing it for many months - never to be completed. Now, with time on my hands that I wish I didn't have, I have looked back and unsurprisingly found that the date of the stoppage was immediately post WBR.
Along with that - so many other "discoveries" as I begin to remember, and continue unpacking all of the ways in which she was heartbreakingly losing her mind and her sense of self over those last 3 years. I think her oncology team simply just didn't expect her to live that long. And if they did, then it may be one of the cruelest things I've ever experienced. It was anyway.
I send you my sincerest, deepest respect and support ❤️🫂❤️
John, I am so, so sorry for your loss. So many losses. Looking forward to your work.
Some people can't understand a reality other than their own. Their world is so small, and anything outside of it doesn't make sense. If they can minimize it, they can solve it. Hang in there, friend. You're doing great.
So true, Ilona. So true. Thank you for your words of support and friendship.
" some of the family - loves to push back" I feel for you, I really do. I know this sentiment all too well. When my late husband was dying of pancreatic cancer, his bile duct got blocked twice. I had family saying "He can't be dying. His coloring is wonderful!" Yeah. The poor guy was orange. No Caring Bridge for me either. Hang tough. Praying for you and Mr. J.
I am going to be writing more about this topic - maybe as early as next week. I know people mean well, so I believe they just need to be taught what not to do. I'm sorry for your loss.
I agree with you. And thank you.
I hear you! The tortuous changes that we register are heart-stabbing. When others gaslight the truth, reality AND our experience, it's enraging. At the start, I used to let it slide or invest time explaining, hoping I'd have emotional support, grateful for their good intentions. The transition to setting boundaries and conserving our precious energy was relatively rapid!
Thanks for sharing. Heartache and reality of it all!
You hit it on the head, Victoria. When others gaslight our experiences, we feel unseen. Also misunderstood. I am confident people don't know how very hurtful this is.
This comes from a place of deep experience and reflection, Anne! I wasted too many hours trying to think of come-backs, explanations and one-liners...Hence, hard boundaries...with hopeful forgiveness, that they will become more enlightened/aware.
I can forgive people who don't know what they don't know...what I couldn't forgive were those who blatantly disregarded what we said, thinking they knew what was best and created heap-fulls of drama, stress and angst. (soapbox is well constructed on this point!).
I, too, spent too much time on comebacks, explanations, etc. Until one day my therapist said, "You know, you don't always have to be right." True words. It was very freeing.
Letting go of the need to be right, ooofff that’s a big one - one of my own lessons😓
This whole experience has certainly accelerated my path to being as self actualized af!
😆it doesn’t half. Purpose in and amongst the pain.
Yes! PLUS you don't always have to explain!