Brett update July 26: Waves
Jul. 27th, 2011 01:39 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
dweniusThis may be disjoint and long as I want to capture as much as possible for all of you. Some of the news below is stark.
My flights and drive were tiring but uneventful. In a bit of synchronicity not lost on me (but which I so far keep forgetting to mention to Brett), the hotel put me in room 303. Brett's parents had to go home this morning for a chemo appointment for his Father, who is suffering his own burdens with advanced lung cancer. So I missed connecting with them. From talking to others, they are still hoping for a miracle.
Today's visit was broken into two parts by a CT scan. The staff are still trying some diagnostics to chase down an internal infection. His primary caregiver staff is from Palliative Care. They are keeping Brett comfortable and free from pain, per his specific instructions. They place very, very low odds on the miracle Brett's parents are hoping for. Brett has his affairs in order and seems on the one hand to understand his condition; he seems prepared. He signed a DNR. But on the other hand he agreed to be intubated and until yesterday was on a ventilator. He is breathing on his own now but still has all the tubes. I am holding the contradiction in my heart and letting it flux. I have a selfish desire to push and fight and hope for another half lifetime of sharing time with Brett but I don't claim to understand his current thought process and I do not want to do anything to complicate his choices. I know I came to say goodbye. I will be happy to be wrong, and he can force me to watch a mashup of "300", "Piranha", and "The Cabinet of Dr. Caligari" with a Butthole Surfers soundtrack every night for a year.
Pre-CT scan I discussed briefly already but want to paint the colors. I shared the pencil and paper cards that Rose and Calvin made for him and showed a current picture (inkjet printout). He opened his eyes very wide when he realized I was there, which put a very large lump in my throat. He squeezed both my hands in his. He wanted me to read and indicated that Italo Calvino's _Mr. Palomar_ was indeed his first choice, as I had suspected when I packed it.
"Indicated" is about the level of communication Bret is easily capable of. He cannot speak. He can nod yes/no and give a thumbs up. Brian made a whiteboard with alpha stickers on the top and with some difficulty we can construct a sentence Ouija board style. Brett successfully asked to have his butt scratched by this method, which seems hopelessly mundane and hysterically Brett all at once. Brett also wants to try to write with the whiteboard marker; more on this in a moment.
The first chapter of _Mr. Palomar_ deals with Palomar's attempts to look at a wave. Not analyze, consider, or deconstruct; just look at a wave in all it's multifarious nuances, simply and fully SEEING it. In Calvino's hands this is a 6 page description of MP's thought process. Given Brett and my shared history and many late night bull sessions about Physics and other topics, this chapter was strangely apt. It danced with, near, and around several different levels of metaphor. What defines the boundary of a wave? or a person? or a memory? or a life? What other waves (insert metaphor) reflect, refract, influence, or perturb the original wave?
The second chapter is the bit where Palomar walks back and forth several times on the beach past a topless sunbather, trying to figure out the exact amount of focus vs. aversion that would accurately represent his philosophical opinions on taboo, politeness, and gender politics. The incongruity of reading this in a somber and otherwise silent ICU ward was comically droll in a way that I am pretty sure Brett appreciated.
During the Third chapter the staff started to unwire things to prepare him for movement to the CT scan so we got out of the nurses' way.
Post CT they only wanted two of us at a time in the room with him. Hannah went in first, then Brian, then I swapped in for Hannah. After some small talk, Brett seemed to go wide-eyed again with recognition. I was going to continue reading to him, and in that way that a bag filled with stuff sometimes doesn't unpack the same way you packed it, we took such a wide route to the book that we didn't read anymore. It went like this, kinda:
First I pulled out Nina's iPod speakers and my old iPod, that I loaded with Orb and other goodies. Next came the folder with the kids' cards and printout picture. He was very interested so I showed them again and then we hung them on the window within his field of view. During this process he was able to sign that he wanted them higher up, so he wouldn't have to move his eyes or neck to see them.
That's when the light bulb went on for me, that he was quite present/lucid compared to earlier in the day, so I took advantage of the timing, grabbed the iPad, and read every LJ comment, email, FB message, and FB comment to my/Cynthia/Gwen's repost of the LJ article that I cold find. He nodded when I suggested this. Thank you all so so much for your thoughts and well wishes. I told him point blank that after talking, Cynthia and I decided that everyone should know and have the opportunity to let him know how much he was loved. He nodded vigorously to this. Your comments brought nods, thumbs up, and an honest smile or two. I will read newer messages along with some comments left on his wall to him tomorrow.
Somewhere in here the doctor came in. He checked on Brett's many monitors, and spoke to him briefly (words of encouragement). Brett asked for the pen at this point, and tried to write something. After much difficult back and forth we figured out that he was feeling some pain and the nurses went to prepare and administer a dose of painkillers.
I then told him again how much I loved him, and how much I had been looking forward to sharing our new VT life with him when he was better. How I still hoped to. A nod. After some hand motions and suggestions from me about what he would like, we again bypassed the Calvino for a look at some of the pictures I brought on the iPad. At the beginning of the set was a picture of Calvin and Rose as the Kind and Queen of all Cosmos, then one of Rose in the VT backyard dancing around in a costume-box-random fairy costume.
Brett asked for the pen and whiteboard again at this point and started to scribble. Reading his scratches is very difficult as he can't get his hands where he can see the board, and he is very shaky both in his grip and fine motor control. But he was fairly clearly trying to write "Rose s B|_,.." and after a few wrong guesses we got nods on both "Rose is Big" and "Rose is Beautiful" (a bigger nod). I was starting to lose it at this point but I told him that Rose is my sweet little walking supernova of transparent emotion, and that she was teaching me to be present in what I'm feeling, to let even the powerful stuff flow through. Or as my pal T puts it, "Toughing it out just buries it and it lasts much much longer. Let yourself feel it fully and more of it will pass through without sticking." (also, apropos of nothing, Fuck society's expectations of my gender). So I also told him that Rose helped me to two very big crys yesterday, even though she admitted that she wasn't completely sure she remembered what Brett looked like. This got a smile from Brett and a big choke up from me.
Somewhere in here, the nurses came back with Brett's meds and hooked up the painkillers. We looked at a few more pictures of the house, kids, dogs, and it became clear that the meds were taking effect and he was getting very tired. It was approaching 7pm, when they toss the visitors out for an hour for a shift change (then open from 8-9 again, oddly). We tucked him in and left a live Orb set from 1992 playing quietly in the background while he slept. Not lost on me: that live set includes excerpts from the KLF's "Chill Out". Brett and I probably listened to Chill Out and Ultraworld -- the only Orb album released in the US in 1992-- dozens of times in 5 different states over the years.
Some more friends are driving the long drive from...CO? this evening to sit with Brett tomorrow. They may hold us to 2 at a time again but we will work it out.
My flights and drive were tiring but uneventful. In a bit of synchronicity not lost on me (but which I so far keep forgetting to mention to Brett), the hotel put me in room 303. Brett's parents had to go home this morning for a chemo appointment for his Father, who is suffering his own burdens with advanced lung cancer. So I missed connecting with them. From talking to others, they are still hoping for a miracle.
Today's visit was broken into two parts by a CT scan. The staff are still trying some diagnostics to chase down an internal infection. His primary caregiver staff is from Palliative Care. They are keeping Brett comfortable and free from pain, per his specific instructions. They place very, very low odds on the miracle Brett's parents are hoping for. Brett has his affairs in order and seems on the one hand to understand his condition; he seems prepared. He signed a DNR. But on the other hand he agreed to be intubated and until yesterday was on a ventilator. He is breathing on his own now but still has all the tubes. I am holding the contradiction in my heart and letting it flux. I have a selfish desire to push and fight and hope for another half lifetime of sharing time with Brett but I don't claim to understand his current thought process and I do not want to do anything to complicate his choices. I know I came to say goodbye. I will be happy to be wrong, and he can force me to watch a mashup of "300", "Piranha", and "The Cabinet of Dr. Caligari" with a Butthole Surfers soundtrack every night for a year.
Pre-CT scan I discussed briefly already but want to paint the colors. I shared the pencil and paper cards that Rose and Calvin made for him and showed a current picture (inkjet printout). He opened his eyes very wide when he realized I was there, which put a very large lump in my throat. He squeezed both my hands in his. He wanted me to read and indicated that Italo Calvino's _Mr. Palomar_ was indeed his first choice, as I had suspected when I packed it.
"Indicated" is about the level of communication Bret is easily capable of. He cannot speak. He can nod yes/no and give a thumbs up. Brian made a whiteboard with alpha stickers on the top and with some difficulty we can construct a sentence Ouija board style. Brett successfully asked to have his butt scratched by this method, which seems hopelessly mundane and hysterically Brett all at once. Brett also wants to try to write with the whiteboard marker; more on this in a moment.
The first chapter of _Mr. Palomar_ deals with Palomar's attempts to look at a wave. Not analyze, consider, or deconstruct; just look at a wave in all it's multifarious nuances, simply and fully SEEING it. In Calvino's hands this is a 6 page description of MP's thought process. Given Brett and my shared history and many late night bull sessions about Physics and other topics, this chapter was strangely apt. It danced with, near, and around several different levels of metaphor. What defines the boundary of a wave? or a person? or a memory? or a life? What other waves (insert metaphor) reflect, refract, influence, or perturb the original wave?
The second chapter is the bit where Palomar walks back and forth several times on the beach past a topless sunbather, trying to figure out the exact amount of focus vs. aversion that would accurately represent his philosophical opinions on taboo, politeness, and gender politics. The incongruity of reading this in a somber and otherwise silent ICU ward was comically droll in a way that I am pretty sure Brett appreciated.
During the Third chapter the staff started to unwire things to prepare him for movement to the CT scan so we got out of the nurses' way.
Post CT they only wanted two of us at a time in the room with him. Hannah went in first, then Brian, then I swapped in for Hannah. After some small talk, Brett seemed to go wide-eyed again with recognition. I was going to continue reading to him, and in that way that a bag filled with stuff sometimes doesn't unpack the same way you packed it, we took such a wide route to the book that we didn't read anymore. It went like this, kinda:
First I pulled out Nina's iPod speakers and my old iPod, that I loaded with Orb and other goodies. Next came the folder with the kids' cards and printout picture. He was very interested so I showed them again and then we hung them on the window within his field of view. During this process he was able to sign that he wanted them higher up, so he wouldn't have to move his eyes or neck to see them.
That's when the light bulb went on for me, that he was quite present/lucid compared to earlier in the day, so I took advantage of the timing, grabbed the iPad, and read every LJ comment, email, FB message, and FB comment to my/Cynthia/Gwen's repost of the LJ article that I cold find. He nodded when I suggested this. Thank you all so so much for your thoughts and well wishes. I told him point blank that after talking, Cynthia and I decided that everyone should know and have the opportunity to let him know how much he was loved. He nodded vigorously to this. Your comments brought nods, thumbs up, and an honest smile or two. I will read newer messages along with some comments left on his wall to him tomorrow.
Somewhere in here the doctor came in. He checked on Brett's many monitors, and spoke to him briefly (words of encouragement). Brett asked for the pen at this point, and tried to write something. After much difficult back and forth we figured out that he was feeling some pain and the nurses went to prepare and administer a dose of painkillers.
I then told him again how much I loved him, and how much I had been looking forward to sharing our new VT life with him when he was better. How I still hoped to. A nod. After some hand motions and suggestions from me about what he would like, we again bypassed the Calvino for a look at some of the pictures I brought on the iPad. At the beginning of the set was a picture of Calvin and Rose as the Kind and Queen of all Cosmos, then one of Rose in the VT backyard dancing around in a costume-box-random fairy costume.
Brett asked for the pen and whiteboard again at this point and started to scribble. Reading his scratches is very difficult as he can't get his hands where he can see the board, and he is very shaky both in his grip and fine motor control. But he was fairly clearly trying to write "Rose s B|_,.." and after a few wrong guesses we got nods on both "Rose is Big" and "Rose is Beautiful" (a bigger nod). I was starting to lose it at this point but I told him that Rose is my sweet little walking supernova of transparent emotion, and that she was teaching me to be present in what I'm feeling, to let even the powerful stuff flow through. Or as my pal T puts it, "Toughing it out just buries it and it lasts much much longer. Let yourself feel it fully and more of it will pass through without sticking." (also, apropos of nothing, Fuck society's expectations of my gender). So I also told him that Rose helped me to two very big crys yesterday, even though she admitted that she wasn't completely sure she remembered what Brett looked like. This got a smile from Brett and a big choke up from me.
Somewhere in here, the nurses came back with Brett's meds and hooked up the painkillers. We looked at a few more pictures of the house, kids, dogs, and it became clear that the meds were taking effect and he was getting very tired. It was approaching 7pm, when they toss the visitors out for an hour for a shift change (then open from 8-9 again, oddly). We tucked him in and left a live Orb set from 1992 playing quietly in the background while he slept. Not lost on me: that live set includes excerpts from the KLF's "Chill Out". Brett and I probably listened to Chill Out and Ultraworld -- the only Orb album released in the US in 1992-- dozens of times in 5 different states over the years.
Some more friends are driving the long drive from...CO? this evening to sit with Brett tomorrow. They may hold us to 2 at a time again but we will work it out.
