Deeper
Lately, I have felt like I was swimming in mud. Everything is just a weird sort of strain. Mud, however is no excuse to stop swimming. You still need to get to the other side of the lake and enjoy the clear patches of water along the way to stay sane.
My mind, usually pretty straightforward is like a spring weed sometimes, with a white fluffy top that kids blow on. I work hard, sure but randomly it can float to things like "I like House of Cards, when do we we get to go on another watch binge?" or "I'm craving a Cosmo, do I make one myself tonight or try to sneak in a happy hour later this week?" (no worries, I have maybe 2-4 drinks a week, you can't drowned all this so why try). A friend leaves a message, I have the hardest time just calling or writing back and talking because, well, because energy, because I don't have much to say sometimes that's any more fun than a root canal so sometimes the House of Cards binge watch works better. I love that friends and family do that, love it and I hope they don't stop.
I think I have posted the basics before on where we are at - but I'll list them here for a more exact status update:
1. Brian does not walk now, but does pivot transfer chair-bed-transport chair-bathroom.
2. Brian eats with assistance.
3. Talking and breathing are normal and unassisted.
4. Brian chooses not to leave the house at this point, but maintains a keen interest in politics and even just talking and hanging out with me and sometimes even others.
5. We are enrolled in Hospice, but with ALS that comes sooner than other conditions. His life expectancy at this point with the current choices he is making is anywhere from 6-18 months.
Hospice did make this more real for sure, and it's giving us a lot more services than we had previously. Not walking makes things more real too.
I had a conversation with a coworker about where we are at currently and I felt bad because she teared up. I just told the story and hoped I did not look heartless. I have to be matter of fact to get across the lake. That usually works for me, it fails on occasion and I have to gather myself up to swim again. My list of high and low lights the past few weeks are:
1. Loved hanging out with Brian yelling about politics, his outrage lifted my spirits.
2. Love being together with our animals, always good.
3. Brian had to ask me to put his glasses on and we both sobbed, him first for only the second time since diagnosis. If I live to be 90, I can somehow see that moment haunting my dreams.
4. I went to a cool play and dinner with some friends while another friend kindly hung out with Brian and fed him dinner.
5. My 82 year old mother had a 2.5 hour back surgery, came through okay, and is now in a MUCH nicer transitional care.
6. We talked together about plans for his memorial gathering, etc. When that time comes, I will be holding a gathering in a restaurant private room. Beer, wine, appetizers and photos will be available. Everyone who wishes to can tell a story or talk to the group, OR just eat, drink, and talk together. I will then go up North to one of our spots and spread ashes in the woods (not the water).
A General in Vietnam who spent years in a POW camp enduring assorted horrors beyond my or likely your imagining said that he saw the optimists die and lose sanity first. He said the problem was they always thought they were going to be released by X date and when that did not happen, they were devastated. He said he did not believe in optimism, but in Enlightened Realism. Enlightened Realism involves taking the full reality of your situation into account and coping with the situation with a belief that you can cope with and overcome the negatives.
I am by no means comparing myself to a POW, but the logic of that is perfect and inspiring to me.
Meanwhile I appreciate our time together, I appreciate drives along pretty summer parkways on my journeys to hospitals (for mom) and attorney offices (for us). I appreciate good meals, our adorable animal family, the occasional night out with friends and the love that we know surrounds us. I'll be alright, and so will he. We all are in the end.
My mind, usually pretty straightforward is like a spring weed sometimes, with a white fluffy top that kids blow on. I work hard, sure but randomly it can float to things like "I like House of Cards, when do we we get to go on another watch binge?" or "I'm craving a Cosmo, do I make one myself tonight or try to sneak in a happy hour later this week?" (no worries, I have maybe 2-4 drinks a week, you can't drowned all this so why try). A friend leaves a message, I have the hardest time just calling or writing back and talking because, well, because energy, because I don't have much to say sometimes that's any more fun than a root canal so sometimes the House of Cards binge watch works better. I love that friends and family do that, love it and I hope they don't stop.
I think I have posted the basics before on where we are at - but I'll list them here for a more exact status update:
1. Brian does not walk now, but does pivot transfer chair-bed-transport chair-bathroom.
2. Brian eats with assistance.
3. Talking and breathing are normal and unassisted.
4. Brian chooses not to leave the house at this point, but maintains a keen interest in politics and even just talking and hanging out with me and sometimes even others.
5. We are enrolled in Hospice, but with ALS that comes sooner than other conditions. His life expectancy at this point with the current choices he is making is anywhere from 6-18 months.
Hospice did make this more real for sure, and it's giving us a lot more services than we had previously. Not walking makes things more real too.
I had a conversation with a coworker about where we are at currently and I felt bad because she teared up. I just told the story and hoped I did not look heartless. I have to be matter of fact to get across the lake. That usually works for me, it fails on occasion and I have to gather myself up to swim again. My list of high and low lights the past few weeks are:
1. Loved hanging out with Brian yelling about politics, his outrage lifted my spirits.
2. Love being together with our animals, always good.
3. Brian had to ask me to put his glasses on and we both sobbed, him first for only the second time since diagnosis. If I live to be 90, I can somehow see that moment haunting my dreams.
4. I went to a cool play and dinner with some friends while another friend kindly hung out with Brian and fed him dinner.
5. My 82 year old mother had a 2.5 hour back surgery, came through okay, and is now in a MUCH nicer transitional care.
6. We talked together about plans for his memorial gathering, etc. When that time comes, I will be holding a gathering in a restaurant private room. Beer, wine, appetizers and photos will be available. Everyone who wishes to can tell a story or talk to the group, OR just eat, drink, and talk together. I will then go up North to one of our spots and spread ashes in the woods (not the water).
A General in Vietnam who spent years in a POW camp enduring assorted horrors beyond my or likely your imagining said that he saw the optimists die and lose sanity first. He said the problem was they always thought they were going to be released by X date and when that did not happen, they were devastated. He said he did not believe in optimism, but in Enlightened Realism. Enlightened Realism involves taking the full reality of your situation into account and coping with the situation with a belief that you can cope with and overcome the negatives.
I am by no means comparing myself to a POW, but the logic of that is perfect and inspiring to me.
Meanwhile I appreciate our time together, I appreciate drives along pretty summer parkways on my journeys to hospitals (for mom) and attorney offices (for us). I appreciate good meals, our adorable animal family, the occasional night out with friends and the love that we know surrounds us. I'll be alright, and so will he. We all are in the end.
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