One concept/tip that came up in the workshop I attended on Saturday was that we should always be listening for stories. They are happening around us all the time, and we can use what they offer, either now or later. We were also encouraged to write five minutes stream of conscious poems. So I tried doing both of those things today while I sat with Vernon. Usually I try to entertain him, and its getting tiring. But when I realized I could be listening and taking notes instead of interacting with him the whole time, I heard some interesting things. Here are the notes, complete with title.
“Tourniquet”
There’s a new kid on the Monday block
couldn’t be more than nineteen.
It must be his skateboard that I saw in the hall.
His skin looks so smooth, its strange to see skin like that here.
It’s like I’ve never seen a young man before.
I shake my head back from staring.
He reclines only two chairs down
between the old woman who only speaks Filipino
and the one who only screams at random
(not that anyone ever comes.)
A nurse stands between him and the machine.
She tightens a blue rubber tourniquet on his arm,
then searches for the vein. It must be taking awhile.
He looks as if he wants to throw up.
“Don’t look at it,” says the social worker
(who likes to play ‘Like-able Superwoman)
as she pulls up a chair and grabs his hand.
“Look at me.”
The boy throws his sweatshirt over his face.
I’ve turned my back as I don’t want anyone to notice
my disrespecting gape:
He’s so young.
Is this his first time?
I think it might be.
The nurse is still connecting her needle to the vein.
I can’t hear him say a word,
but his panic shoots out through this side of the room
like an atomic wave.
I feel it enter my shoulders and push against my chest.
I have so much in my head and heart tonight, at the close of a full weekend, that I won’t even try to process it all here. It would be better to go to bed and let my dreams work things out. But because I rarely remember my dreams—and increasingly, the details of my daily life—I have to write things down, at least as a note.
BIG BREATH….
Thursday, I went to a small concert by my go-to music-man of the past couple of years, Jose Gonzalez. To make the story short, a dear friend of mine found out I wanted to go, got us on the guest list (because she knew the drummer) and drove some distance to attend along with me. After a magical show, I got to meet this humble introvert whose music was the soundtrack to the writing of a good number of these Sansoxygen entries, but I had nothing to say except: “thank you for the music.” That was more significant than he knew, but there was nothing else to say.
On Friday, Justine and I drove up to our recent but beloved friends, the Logies’ home. True to the family it protects, the house has a magnificent character of it’s own. Here is a little video someone made there once upon a time. But the house shouldn’t get too much credit. It is the family that fascinates us so. Justine was in heaven, as she was introduced to the fairy world by the kids who live there. Here she is trying to find them:
And here she is with Susan and a pair of Emerald Glasses, discovering the Wizard of Oz, pop-up style:
On Saturday, Susan and I went to a One-Day Woman Writer’s Retreat on the beautiful campus of Mount St. Mary’s College in Los Angeles. My mind is still spinning from the variety of information it received. I met a couple of fascinating writers that I hope to keep in touch with. Interesting ideas are everywhere and most of the time, they are tucked inside people. Its always a privilege to get a peek in.
Speaking of peek-ins, on our way home, Susan brought me by the 6th Annual Skid Row Artist Festival, just a few city blocks away. We weren’t there long enough to enjoy most of the days creative neighborhood interaction, but I mention in here because I knew I felt at home there in a way that I don’t often feel. Strange how hospitals and homeless neighborhoods can make me feel that way. They are so over-real/unreal, I guess. It’s an intoxicating combination.
Today, we saw Vernon on our way home, and as I was still brimming with creative love and new experiences from the weekend. I had been expecting a let-down when I saw Vernon, so much so that I wasn’t sure how to feel when I saw he was having a very present day. He was even sitting outside with Joe and one of the staff under a patio umbrella when we drove up. I found my heart unable to rejoice in the improvement because I know how temporary these things can be. It’s so strange to find space for grief and rejoicing at the same time, but it seems that is the task at hand.
Maybe I’ll work it out in my dreams tonight. If I do, I hope I remember.
Maki, too, had an a most excellent weekend adventure. He went boulder climbing and camping with his friends. I let him take my old digital Pentax, which apparently never left his neck. I expect I’ll be allowed to share some of those here soon. He came home happy. Justine now understands fairies. Vernon was chatty. I’m overwhelmed. I’d say it was a good weekend.
A very wise therapist made a comment about my last post on Bereavement. She explains ‘letting go’ so well, I want to keep it in this collection of pages. I also want to share it with others.
‘Letting go is not an action it’s a mind-set. It’s not like holding on to a rope and then dropping it. It’s more like releasing an inner tension. It’s holding on to concept of how things should be as opposed to how they are. It’s thinking you can control everything in this moment. In fact its not living in the moment, it’s living in the future. The future of either “what if’s” or “if onlys.”
At its core, letting go is having faith. Having faith that you don’t have to pull and push and cajole and scream for the universe to hear you.
It’s trust. It’s trusting that if you do the right thing, think the right thoughts, do your work well, take care of others, give back, care, always care, caring is essential, things will work out OK.
They will work out the way they are supposed to. Which is not always the way we want. But that is part of letting go.’
I keep returning to this idea over the past couple of days. I do feel that I have a little more slack in my rope again, so maybe that is what I have done. I’ve “let go”…just enough to get me through the next wave of days and whatever else comes inside them. Anyway, thanks Karen…your words did me good.
Vernon seemed okay the day after his surgery. The dialysis technicians were pleased to have a new port to work with, but his words were garbled and all he could speak about was water.
We did finish Peter Pan though. Toward the last page, I read this bit: (the second paragraph)
“Wendy was pained too to find that the past year was but as yesterday to Peter: it had seemed such a long year of waiting to her. But he was exactly as fascinating as ever…”
Vernon cannot remember the day before, let alone last year. I suppose I should find comfort in this, for his sake, though it has seemed such a long year of waiting…
Today when I visited, he was much better. He was talkative and happy, though he made sense less than half the time. He seemed comfortable and alert and it appeared to me that the swelling had gone down in his face and arm. I think that issue may have been managed by the surgery as well: I’ll keep looking for changes.
I also brought him a special gift. His friend Erik had put together a poster for him, covered with what he thought might be some of his favorite music. And he was right on most of them.
I have recently taken down most of the pictures on Vernon’s wall, as they had curled with tape and time. I realized he may not want to look at a mis-mash of old family photos every day. Maybe he wants the room to be decorated according to his own taste or interests. He is definitely more of a minimalist than I.
This is going to be perfect for his “teenage” room. He does seem to be stuck in those teen years half the time, so the timing couldn’t be better. Also there is a great reminder on the back.
When all else fails, we will turn the poster around. Words to live by. Words to remember.
Sometimes I check in on the 5 or 7 Stages of Grief, just to see where I might fit that day. It’s not official grief, since Vernon is still with us, but there is obviously a major sense of loss that hits me in different ways at different times. I guess I’d define today’s check-in as somewhere between Depression and Acceptance, with a twist of Anger lurking below the surface. Its interesting that Fatigue isn’t listed, but then isn’t an active state, is it?
One of Maki’s vocabulary words for his English class is “Bereavement.” The definition:
I like that word. Maybe that’s what I’m experiencing. I’ll throw it on the list.
This afternoon, Vernon was taken to a hospital we had yet to visit, Hoag Irvine. This worked well for me, actually, as it is somewhat closer to home than the hospital he went to yesterday.
There were initially intentions to have the surgery done in time to go to an afternoon session of Dialysis, which seemed awfully optimistic. And by the time everything was done, it was too late for that—I expect they will add a session or extra hours later in the week.
In the end he had his chest catheter replaced. It has been about a year since the last one was put in, so it was high time. What had occurred was the buildup of a Fibrin Sheath, which clogged the port. This is (in part) a complication of his inability to tolerate the blood-thinner Heparin. All went well…he should be good to go for Dialysis in the morning. And he got a nice deep nap in. I hadn’t heard him snoring so peacefully in ages.
But this is where I return to the Sages of Grief or Bereavement or whatever I should call this.
Ever since I got the call yesterday about his emergency surgery, I’d been experiencing some new feelings. It’s hard to admit it out loud, and this too may pass, but I recognized the feeling right away. Until now, I’ve been able to move into each inconvenient crisis with hopeful energy. This time, as I mentioned in last night’s post, I feel totally spent. I felt as if a corner had been turned, a downward corner.
It’s the little things that put one over the edge, I guess. This was not a major procedure, compared to other things, but it was necessary if he is to survive. And yet, it all is beginning to feel so futile, like its just more spinning of the medical wheels and stress to my life. I am exhausted today. I am stretched as far as I can go. But then…maybe I’m not…as it seems there is always more stretch left in me. I think of my Pilates classes, where I am able to stretch my hands to the floor at the beginning of the hour, but by the end, I can get them down even further. Flexibility comes with the warming and use of the muscles. You can always go a little further, apparently.
But I FEEL spent (it doesn’t mean I actually AM.) I admitted today that if he doesn’t start showing improvement and we have to spend so much time, energy, and money in life support, I honestly do not look forward to the next few years, or however long we have left with him. It’s starting to feel like more effort than its worth. I know if I weren’t so stretched, I might not feel this way…but with time, I have used up so many of my personal resources (friends to help, to ask for help,babysitters, school pick-ups) I just wonder if its all worth it. His quality of life is so small, he can’t even have a drink of water or feel comfortable lying down. And there is so little I can do to change anything for him.
I don’t know if this is a loss of hope or if it just a normal part of running out of steam. I imagine all carers get to this point. But today, I realized I’m at the beginning of letting him go (which is bound to happen at some point in the future, I just don’t know when.)
“Perhaps this is what the stories meant when they called somebody heartsick. Your heart and your stomach and your whole insides felt empty and hollow and aching.”
I got a call this afternoon from the Dialysis center. Vernon’s chest catheter had been acting up for a couple of weeks, enough to close some of his sessions early. It had been getting clogged—at least, that was the description I was given. After that, I don’t know how to elaborate. So today, after another faulty session, they called me, saying he would need to have it fixed before he is able to be dialyzed again. He was eventually sent to the ER at Hogue Hospital, yet again.
I had to wait till Maki came home from school so I could leave Justine with him. My parents would normally be my go-to’s, but they have left town for the next few weeks. It’s fine though, we are Hospital Pros, and if the hours come together right, we can handle it together.
Speaking of being a Hospital Pro, though…I used to feel slightly giddy about going to Hogue. Its such a nice hospital, and Vernon always gets top-tier care when he is there. But this time, I felt annoyed and tired. “Are you KIDDING ME?” My insides cried. “Again? To clear out some arteries that only keep him doing Dialysis, which he hates, and takes constant work on my part just get sitters for. Is any of this really HELPING? Or is it just keeping him alive?”
That came across much more negatively than I actually felt it. It’s not that bad, but it does feel like a lot of work for very little result most of the time. I feel sometimes like a person trying to generate electricity via bicycle.
So anyway, once I was able to leave the house, I managed to get there quite some time ahead of Vernon. It was very crowded in the ER, “even for a Monday,” I was told. It made for some good people watching though, and I played the game I always play in hospitals and airports: “What is THAT person’s story?” Here is an example:
Actually, that guy was there to help his mom, who was sitting in a wheelchair nearby. She had been waiting for two hours to have her name called. All I heard from her was that her mouth was dry because she was on so much medication but she was unable to drink anything because the doctors needed to run tests. Apparently thirst isn’t just for Vernon these days.
One thing nice about ambulance travel is that, at least at hospitals, you get in through the back door. I had been waiting for Vernon to get rolled through the front doors, but by the time I asked again, he was already inside in a cozy ER bed of his own.
To make the story shorter, after explaining the issue as best I understood it, the doctor eventually told us Vernon would not be admitted tonight, but should return tomorrow for the Radiology Dept to do their magic on his tubes. The Radiology Dept does not work after hours.
So I left him, asleep. At least he had fallen asleep. A phone call with Joe told me that he has been sleeping since I left him yesterday (except for the dialysis session earlier today.) So something is off. I hope that once they fix this clogged artery issue, Vernon’s face and left side of body will stop swelling so much. That’s an area the doctor has been looking into without any clues so far.
Tomorrow is another (long) day.
Some musical fun from the Radio (logy) Dept. See what I did there? Heheheh…
A special cover of Vernon's fav song 'Waterloo Sunset' by friend and singer/song-writer Ian McGlynn. All proceeds support Vernon's recovery! Donate what you can and download a beautiful song in return.
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