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5:14pm June 14, 2014
I got to video Skype with my parents today, and got this picture of my dad while he was resting after a barium swallow.  He’s really tired by doing ordinary things, which has me worried because that means he’s heading towards negative spoons.  Which is always a bad sign. But being able to tell him I loved him meant everything in the world to me.  I was afraid we’d only be able to talk by phone.  And we’re going to be Skyping more often too, this was just the first time.  I just hope my mom figures out how to find the Instant Message window – every time we do video chat there’s this frantic part at the beginning where she can’t see anything I’m saying and she’s looking around for the Instant Message window and can’t find it, and it never gets much easier for her.  And since I can’t teleport over and click the right buttons, it’s a struggle every time. I feel so much better that I’ve been able to talk to him even once. Like it’s this huge huge weight that’s been lifted. I couldn’t even find things to say, all I wanted to do was love him and be loved by him, and think about love, and that’s all well and good but it exhausts the topics of conversation pretty quickly.  But just being able to interact is part of that love. They think he has lung cancer, or something outside his lung.  They’re still looking for the original mass.  And they’re going to look in his intestines, too.  He’s going off for all these scans and tests and he’s already so exhausted this is going to be completely draining on a level he’s never experienced in his life. I just sent him an email about how I handle negative spoons.  Which is to forget everything, stop thinking, stop trying to do things, and lean on love as hard as you possibly can, just exist and be aware of love.  That’s the only thing that’s ever made anything any better for me when I was almost dying and so out of spoons that it felt like moving my heart was too much work.  And in the end, love is the only thing that works for anything, and it’s the only thing that will make any of this better, ever.  I’m talking about the love that can be found deep down in the center of everything, no matter where you look, if you know what you’re looking at.  That’s what you have to lean on at times like this. He told me there was no chance of closing himself off to love during this time, and that’s what has me more relieved than anything else could make me right now.  Because that means he’s going to be okay, even though he’s dying and it’s horrible. 

I got to video Skype with my parents today, and got this picture of my dad while he was resting after a barium swallow.  He’s really tired by doing ordinary things, which has me worried because that means he’s heading towards negative spoons.  Which is always a bad sign.

But being able to tell him I loved him meant everything in the world to me.  I was afraid we’d only be able to talk by phone.  And we’re going to be Skyping more often too, this was just the first time.  I just hope my mom figures out how to find the Instant Message window – every time we do video chat there’s this frantic part at the beginning where she can’t see anything I’m saying and she’s looking around for the Instant Message window and can’t find it, and it never gets much easier for her.  And since I can’t teleport over and click the right buttons, it’s a struggle every time.

I feel so much better that I’ve been able to talk to him even once.

Like it’s this huge huge weight that’s been lifted.

I couldn’t even find things to say, all I wanted to do was love him and be loved by him, and think about love, and that’s all well and good but it exhausts the topics of conversation pretty quickly.  But just being able to interact is part of that love.

They think he has lung cancer, or something outside his lung.  They’re still looking for the original mass.  And they’re going to look in his intestines, too.  He’s going off for all these scans and tests and he’s already so exhausted this is going to be completely draining on a level he’s never experienced in his life.

I just sent him an email about how I handle negative spoons.  Which is to forget everything, stop thinking, stop trying to do things, and lean on love as hard as you possibly can, just exist and be aware of love.  That’s the only thing that’s ever made anything any better for me when I was almost dying and so out of spoons that it felt like moving my heart was too much work.  And in the end, love is the only thing that works for anything, and it’s the only thing that will make any of this better, ever.  I’m talking about the love that can be found deep down in the center of everything, no matter where you look, if you know what you’re looking at.  That’s what you have to lean on at times like this.

He told me there was no chance of closing himself off to love during this time, and that’s what has me more relieved than anything else could make me right now.  Because that means he’s going to be okay, even though he’s dying and it’s horrible. 

Notes:
  1. fullyarticulatedgoldskeleton said: *offers so many hugs*
  2. withasmoothroundstone posted this