The Collins Dictionary defines the word pluviophile as “a lover of rain; someone who finds joy and peace of mind during rainy days.” It’s a word I can identify with, even though it seems to be a new, made-up kind of word, since I can’t find it listed in any other online dictionary. It was probably made up by fellow rain lovers (or those who love them), but it’s a great word and I don’t mind using it one bit.
It seems El Nino has sent its storms to us at last. I know it’s a huge mess and inconvenience for those who don’t like the rain (or whose property is damaged) but most Californians I know are happy with the novelty, at least. We’ve been in drought it seems forever, so a couple of real storms in a row are pretty exciting. The rain is nicer if you can avoid driving on the freeway, though.
I took yesterday off from seeing Vernon. I avoided the roads. I listened to the rain, I drank hot tea, I made soup, I worked on an art project, I even watched a program. When the kids came home, we went record shopping to spend Maki’s Christmas gift certificate.
I could feel myself being refreshed even as I spent the day indoors. I had no where I needed to be, except for school pickups and drop-offs and a sneak-away to the gym in the evening. Even though we just got out of the holidays, it had felt like a long time since there wasn’t anything I HAD to do.
Maki, still thawing out from a day of being waterlogged at school. He’d gone off yesterday in what we thought was his dad’s waterproof jacket. Lately, whenever Maki needs a new item of clothing, we try to find it in his dad’s stash. A lot of stuff is starting to fit him at this age, he’s even been wearing his dad’s shoes.
Its so nice being together with nothing to do. Funny how the rain lets you feel that way.
I got a call from Lois Bechtle last night, offering to sit with Vernon today. Maki was under the weather after yesterday—literally. So I took another day off from Vernon. And today it rained even harder.
I got a coffee with Sandy, and we ran some small errands. We went to the art supply and a used book store…can you think of a better way to spend a rainy morning? Nor can I!
She found some Pablo Neruda books, and I found the next of the Chronicles of Narnia to read to Vernon (and Justine.)
I worked some more on my latest endeavor, a linocut that I’ve committed to. A little nervous how it will end up, but its very therapeutic as it slows me down and keeps me in one place for more than five minutes. I’ve been on a printmaking jag for a month or so now. It feels good to do something out of my comfort zone. Thanks for the inspiration, mom. I keep thinking I’d like to try my hand at woodcuts too, something I’ve never done.
It just happened that as I was straightening a bookshelf today, I noticed this book of Vernon’s: Letter Carving in Wood by Chris Pine. It struck me that maybe carving is something Vernon could start doing. He’d have to sit at a table (which is something he is only allowed to do with me when I’m at Mesa Verde, which is only twice a week, because of his dialysis schedule.) I happened to pick up a soft rubber block at the art supply this morning that I will bring up tomorrow with my cutting tools. It’s worth a try. After witnessing him unwrap a chocolate coin the other day, I could see a focused ability to use his fingers emerging. It struck me that if he has a reason or a real desire to complete something or at least manipulate something, he puts his focus toward it, despite his disability. I have tried lots of things and then I drop the ball because of his lack of interest or frustration, but then sometimes I forget to have them try them again at a later date. So tomorrow I’ll bring this up. We’ll see if he’s ready for it.
I’m not sure if its going to rain tomorrow. I wouldn’t mind. I’m happy to go out in it. I miss Vernon and I’m curious to see if he’ll be up for this idea. Two days of torrents have washed the blues and fatigue away. I’m ready.
Vernon went in to Fountain Valley Regional Hospital today for surgery on his arm. Some months ago, you may remember, a dialysis fistula was embedded in his left arm. It didn’t heal properly, so he needed to have one of the veins transposed (in this case, lifted closer to the surface so that it can be accessed with a needle.) Though Vernon’s chest catheter was just replaced on Saturday, the arm fistula is considered a safer long-term access for dialysis. I’d put off this surgery a couple months ago as it was slated the same week of two other surgeries he had just undergone at another hospital. Oddly, the story seemed to repeat itself this week, but another appointment wasn’t available till March. (Emergency surgery is SO much more efficient than the planned-in-advance ones.)
It was a very long day. I got to the hospital a little before 1:30, where I expected to meet up with Vernon, who was supposed to be brought over by ambulance from the dialysis center. But it was a longer day for Vernon, who had been picked up at 10am to start his adventures. Somehow there was a miscommunication and Vernon ended up in the ER. It wasn’t a good start, not being able to locate him for an hour and knowing he’d been dropped off. But eventually we found him and got him transferred to the pre-op area by 3:30, an hour before his surgery was to begin. It wasn’t conducive to good feelings. I know we have been spoiled at other hospitals, but I was disappointed by how chaotic the whole thing felt and at the lack of communication between wards. Part of the problem is that today’s was a surgery organized through a separate group of physicians via the dialysis center.The care home is very good about communicating with me but whenever plans are made or changed through the dialysis center, someone ALWAYS drops the memo. It has absolutely never gone 100% smoothly. But to have Vernon lost in a hospital for over an hour with no one claiming responsibility for him took the cake. On top of that, he wasn’t allowed to have any medicine or drink today, which made him extra anxious.
When I found him, I could tell that he was fearful, not knowing where he was…and also listening to strangers around him who had been wondering allowed what he was doing there didn’t help much. It was pretty awful. “Don’t leave me,” he kept saying. But there was a gift waiting for us, when they were finally able to get in.
Susan, John, and Belle Logie had brought their company and music. We were able to get everyone in the curtained cubicle of the pre-op, in fact, it was so late in the day, there was soon more room for us to spread out in. I told the nurse that Vernon was very uncomfortable and he relaxes to music, so hopefully soft singing and guitar would be allowed in the ward.
This calmed Vernon down considerably. And the nurse said he enjoyed it too. Apparently this sort of thing doesn’t happen there…at least not in his experience so far. While we were all relaxing to John and Belle’s music, I found this article on my phone, which makes the case that “listening to music before, during, or after a surgical procedure is beneficial to patients and can significantly reduce pain and anxiety, and decrease the need for pain medication, according to the most comprehensive review of the evidence so far, involving almost 7000 patients.” And it’s non-invasive, to boot! The article goes on to say that “listening to music at any time seems effective although there is a trend for better outcomes if patients listened to music before surgery rather than during or after.” If this is so, the Logies didn’t know how powerful their visit today would be! We continue to be amazed by their friendship.
In the end, he didn’t go in for surgery till 5:30. Another gift, my friend Melissa, showed up on her journey from San Diego to North LA that she just happened to be taking today. We waited a few hours together. The surgery went on three times longer than I expected and though I had intended to wait till he was done, I needed to get back to the kids. If I didn’t have them, I might still be there now. But I got a call from the nurse, telling me that Vernon woke up from anesthesia and would be transferred back to Mesa Verde soon. I have already asked that dialysis is cancelled for Vernon tomorrow. (We’ll make it up on Thursday if we have to.) The man deserves a morning off after this long, strange day, let alone the long strange weekend.
January 4th is a wrap. Two surgeries down so far this year. Now we can look to better things ahead. Hallelujah!
Though I asked if Vernon could have dialysis at the hospital yesterday, the doctor told me it wasn’t necessary and that he’d be discharged shortly after I left in the early evening. But around 11:30pm, I got a call from someone at Hoag, asking for my consent to give Vernon dialysis there. I’m not sure why he stayed in the end, perhaps they felt they wanted to test the new port to ensure there were no new problems. This morning, I was told he’d be discharged for sure and at the latest would be home “after lunch’ (whatever that means.) The Logies had arranged to come around then, but there was still a lot of waiting before Vernon arrived.
The kids had their game…one that Maki brought. I was so thankful he had someone to play it with him as I’m a terrible with complicated games and not a fun partner.
Joe was worried about Vernon as he hadn’t been told anything until I arrived this afternoon. The staff hadn’t expected him to be out so long either. So we waited in the crisp outdoors, entertaining ourselves, until the ambulance drove up. When Vernon emerged, he was greeted by an enthusiastic homecoming party. “Welcome Back, Buddy!”
He may have been tired but he was anxious to get back outside once he knew he had friends waiting for him. I got him dressed and transferred (by myself!) He sat up at the table, alert and involved. Here he is chatting with his good friend Chris.
Joe and their CNA, Judy, has tears in their eyes as they watched him sitting up and drinking water. They said they had missed him, but I could tell they were mostly pleased to see him returning with such stamina and brightness. When he drank from his water cup, he even remembered to hold his chin down to the left without anyone prompting him—tilting to the left is something we only started working on a week or two ago, and that, sporadically.
Here is a little video of Vernon opening a chocolate coin. He’s figured a few things out. Most would agree that getting to chocolate is a worthy endeavor.
Tomorrow, after his morning dialysis session, I’ll meet Vernon at a different hospital for a different surgery that should take place at 4:45. Your prayers are always appreciated. Today made me feel better about tomorrow.
What is it about the new year that makes us think we have control over our lives…to intention them better as if we have an extra likely chance to change our lives if we start thinking about our goals in January? When our feet his the floor on January 1st, maybe our lives will feel different—at least with boosted potential.
For me, the week after Christmas felt like a door between the past year and the future-as-I-hope-it, a pleasant kind of limbo between two lives. Vernon had no pressing needs, no more than usual. He seemed stable enough to take the focus off him for a bit so I was more available for the kids. We took down the tree and boxed the decorations. We got out of town for a few nights to visit friends. We relaxed and had fun. I made vague resolutions about my health and time spent more wisely.
Though New Year’s Day was graciously uneventful, that evening, I got a call from Mesa Verde, informing me that Vernon had pulled out his dialysis catheter and would be sent to Hoag Hospital’s emergency room. In the end, he was admitted and underwent replacement surgery today. “Well Vernon, what a way to start the year running!” I thought. Maybe he, like I, resolved to be done with the horrible dialysis one way or another. He is just less patient, understandably. This is NOT the surgery that is still slated for Monday afternoon. He’ll have two surgeries before the week is done. 2016 looks a lot like 2015 from here.
But as Vernon recovered in the room this afternoon, looked after by nurses and patient sitters (to keep him from falling and tugging at his lines) in that same hospital we’ve been in so many times now (this time on a new floor!) I realized how much better he seemed today than all the other times. Even with a bleeding wound that needed several re-dressings, he seemed calm and mostly-present. He had some rapid mood swings but he seemed as much himself as ever. And he was markedly polite.
I happened to have an anthology of poems with me, not sure why I picked up that book on my way out of the house. At one point of discomfort, Vernon shushed me up so I turned to read for a bit, and I came across this poem: “The Present” by Michael Donaghy.
“For the present there is just one moon,
though every level pond gives back another.
But the bright disc shining in the black lagoon,
perceived by astrophysicist and lover,
is milliseconds old. And even that light’s
seven minutes older than its source.
And the stars we think we see on moonless nights
are long extinguished. And, of course,
this very moment, as you read this line,
is literally gone before you know it.
Forget the here-and-now. We have no time
but this device of wantonness and wit.
Make me this present then: your hand in mine,
and we’ll live out our lives in it.”
For me it was a poignant concept to visit on this second day of the year. Life doesn’t stop. Moments keep passing. We can look ahead (or back) all we want but life keeps coming at us like the wind. Its not happening in the future or the past. It’s happening now. It’s what we are given.
Happy New Year, everybody. Can you believe its the last day of 2015? I think I’ve aged about ten years since last January…maybe tomorrow I will wake up and my youth will be restored!
I hope that for all of you too. Even if it isn’t exactly possible to reverse the aging of the body, there is much youth to be found in the heart! I hope that even tomorrow, you feel more ready and able to attack your obstacles and overlook those things that aren’t actually important. I wish you all a year of creativity, health, friendship, love. I hope that are strengthened spiritually as well as physically and mentally. I hope for greater emotional awareness and compassion. I hope you thrive in your life. I hope you are inspired. I hope your sense of purpose becomes even more bright and clear.
We are in this world at this time, right now, going through . There must be a reason…I hope we all become closer to realizing it.
I’m looking forward to the new year, feeling energized in the midst of this lovely break. Vernon will have surgery on Monday to lift a vein in his arm closer to the surface. My big goal for this year is to get him a new kidney and also move him closer to home (God willing, with Joe as well.) But looking back, we have so much to be thankful for. Vernon, even with his setbacks, has come a long way. We continue to be humbled with the outpouring of support and love from both those we’ve known and those we’ve just met. We love being connected with people, thank you for enriching our lives so much just by being a part. Happy New Year. See you in 2016!
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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