The goal posts move, again

Update post

“I’ve been told’ve been told that all these ties would surely bind
And hold me tight
Hold me tight
‘Cause I’m hanging at the end of my own line
And I hope that all these ties will surely bind

When, oh when, will I be changed?
When, oh when, will I be changed?
From this devil that I am
When, oh when, will I be changed?

Josh Ritter, When will I be changed?

It’s been a rough roller coaster folks. I was planning on one of my pondering post (I’ll still get to it) but first I want to give an update.

Written from someone more cable of clear communication at the moment (Paige):

John had been growing steadily worse since [last] Friday. He had a previously scheduled appointment with his neurosurgeon on Monday, which was supposed to be our final check with him, but John did not do well on the neurological exam, so he had an MRI Monday night. The MRI showed increased swelling that is crossing the center line again. 

The neurosurgeon and radiation oncologist agree that John is still suffering from radiation necrosis, which is causing the swelling. Though the surgery cleared out as much as could be taken out, apparently some had seeped into surrounding tissue. The hope is that returning John to the highest doses of steroids for 1-2 more months will help that tissue heal on its own, now that the surgery cleared most of it out. If that does not occur after a couple of months, then we will have to consider other options. The Radiation Oncologist says that he has seen this play out in other patients, and most see significant improvement within two months. 

One of the hardest parts is that I was sure I was walking into an appointment that was going to grant me freedoms, not take them away. It’s also a return to scheduled pill taking, which I thought I was over with for the most part– steroids every 8 hours, including the middle of the night. Previously, I just had to take a dose in the morning and that’s it– I want badly to get back to that. It helped with sleep and daily routine very much. I don’t like living by the clock again, always within reach of a jar of pills.

Writing and reading bring me a lot of relief so that’s nice. I also think LEGO building is really helping my brain. There’s a passage in The Art of Learning by chess phenom, Josh Watskin, when he talks about playing twelve players simultaneously. Which usually wasn’t challenging for him (similar to scenes in The Queen’s Gambit) but inevitability someone would cheat and move pieces when he left the room and upon returning, it was the most confusing experience ever. Nothing would make sense until he pieced together that the opponent had cheated and that would make reality right again. The same thing happens to me sometimes in daily life, when I’m trying to get my brain right. But no one is cheating, it’s just life and it’s just my brain trying to figure things out again— I don’t like it. I don’t like that I can’t take a walk by myself or pick up my son and put him on my shoulders or carry my daughter downstairs when she’s sleepy and doesn’t want to wake up for school yet. I still can’t drive, wash my hair or cut it. But every appointment seems to push these events further out and not closer. The messaging from the doctors seems to get more murky, not clear. It’s suffocating. I’m not dealing with cancer, so sometimes the reaction from various doctors and centers seems to be, “What’s the problem?”

The steroids make me hungry and emotional– everything makes me cry including detergent commercials (“they got the stain out!”)I’m eating all the time. I’m the most I’ve ever weighed (“puffy John”). Exercise is out of the question at the moment. Diet is difficult when you can’t scan the grocery isles and be very selective about nutritious food. (keep in mind I can’t drive.)
I’m extremely grateful for everyone who has donated cash for take out of money for activities that help my brain like LEGO or craft projects– thank you so much. It’s really helping.

To finish up here. I don’t usually get extremely religious or preachy but sometimes you hear something you simply must repeat. My apologies if you find the below offensive or a turn-off. It’s my blog so I get to post it. Please move on if it doesn’t strike a chord with you. But denouncing Nazis shouldn’t be a difficult thing to align yourself with. I am writing this blog from my grandfather’s desk who was a POW in WWII and fought with his life against Nazis for the freedoms we have today. To watch some of us idly standby and dispose of accountability in the defense of an empty authoritarian leader who offers no truth and nothing but false promises is more than just heartbreaking, it’s a bridge to despair.
The following passage is from my pastor’s sermon 2 weeks ago. I don’t think many have the guts to get up and say this to a room full of diverse and unknown opinions so that’s why I think it bears repeating on my blog. Take it or leave it but don’t stand along side Nazis please.

“These unclean spirits traffic in hate and bigotry, racism and xenophobia, and are fueling a global rise in authoritarianism—sometimes called the new fascism— as would-be strong-men-and-women around the globe prey on the fears and psychological vulnerabilities  of people who are all-too-ready to believe and follow  anyone willing to entice them with lies and empty promises. 
This global phenomenon is like the religious cults of yesterday, only more powerful and infectious due to the pervasive reach of social media.These forces of death at work in America, and among American Christians, as the insurrection at the Capitol provided clear evidence.
These forces of death  are at work against the goodness of life, but Jesus has come, in word and deed, to stand against the forces of death. Now you may prefer that your pastor avoid these things in his sermons. And frankly, it would be easier if I did. And it would be easier to avoid talking about these things, if it weren’t for our fellow Christians who were carrying “Jesus” flags,  alongside Confederate flags and flags promoting violent insurrection, as they stormed the halls of our democracy, or displaying a “Jesus Saves” sign  alongside a gallows built to threaten our elected officials.
My Christian friends,  insurrection in the name of White Christian Nationalism fueled by lies and false conspiracy theories, is not the work or the word of Jesus.  It is the work of false prophets. 
Whatever spirit is possessing the White Supremacist mob  is every bit as unclean as the spirit possessing the man in the synagogue at Capernaum.  
Given that this past Wednesday was Holocaust Remembrance Day,  there is another rule of thumb that I should mention  on discerning false prophets and unclean spirits:  that is,  the presence of Nazis in the crowd.“Be they “neo-Nazis, casual Nazis, master race Nazis,  or the latest-whatever-…-Nazis… if they are on [one] side of the demonstration?  [That is] the wrong side.
It is tough to argue moral equivalence when…standing next to a Nazi.  Look to [the] right.  Is there a guy wearing a 6MWE (6 million wasn’t enough) t-shirt?  [That’s] the wrong side.  Look to [the] left.  If that guy is wearing a Camp Auschwitz t-shirt? Wrong side. Are speakers being applauded for referring to things that Hitler got right?  Wrong side.”
The forces of death  are at work against the goodness of life… but Jesus has come, in word and deed, to stand against the forces of death. To the extent we stand in resistance to those forces, we stand with Jesus, and are following him. 
We have bronze plaques in our sanctuary bearing the names of Fourth Pres members who offered up their lives in the World Wars fighting against  these forces of death. May we find courage in remembering their sacrifice as we are called to stand against these forces of death— these same forces of death—today. God promised a prophet like Moses, saying  Anyone who does not heed the words that the prophet shall speak in my name,  I myself will hold accountable. Friends, the gospels proclaim that Jesus was and is that prophet.  And we all—all of us— will be held accountable to his words.
You know, these are difficult days. And it give me no pleasure to have to preach sermons like this. I long for the day when I don’t have to. But the gospel demands it.
The gospel calls on us to stand under the authority of the one who was willing, in both word and deed, to confront the powers that destroy life to call them what they are, and to speak a word that sets free  those who have been enslaved by the unclean spirits of the age. 
The gospel may call forth convulsions for those under the spell of the unclean, but they are convulsions  on the way to freedom. 
Friends, let us stand together  under the authority of the one who gives life to the world. Jesus Christ our Lord.
In him—in the Jesus we come to know by a careful reading of the gospels— the kingdom of God has come near; 
Let us all repent,  and believe the good news.