I realized this morning as I looked over at the bedside table that I’m currently reading two books that, for lack of a better word, bookend my perspective at the moment. For one, I’ve been reading Being Mortal by Atul Gawande, which addresses end of life care. It’s one of those books that comes along right when you are going through a season that matches a book like that. It feels like a revelation to read it, but at the same time, you realize what it is doing is affirming what you already knew was true in your heart. It’s a tough read, and it makes me look at my own mortality, which is both depressing and a relief. But it encourages me to keep looking for things that make Vernon happy and comfortable as long as he is here (which could be a lot longer…or not.) It also illustrates how too much medical assistance doesn’t actually increase one’s quality of life, but may hinder it instead.
The book I’m currently reading to Vernon at dialysis is one that was given to me shortly after Vernon’s accident, but I wasn’t capable of reading it till now. It’s called “The Brain that Changes Itself.” This book contains stories of remarkable scientific breakthrough in brain plasticity. Vernon finds it very interesting to listen to, but he doesn’t relate the stories to himself. That’s how it is with brain injury, I suppose. Every single neurological deviation is different in people so sometimes it’s hard to compare and relate. But the fact that Vernon can enjoy it causes me to finally read it myself. And it is mind-expanding to look at hopeful scientific horizons, even if they are treating differing ailments than his. The human brain may indeed be the final frontier!
So you see…this is where we are: bookended by learning to live with inevitable deterioration of the body and the surreal optimism of staying curious. It could go either way, but its unlikely either will happen in a moment. Either way, its a long slog. Preparing oneself for the haul means keeping all of this in mind. The trick is learning to keep my emotions in the middle of the swing set.
I think the spring weather is helping though. And the longer days. It feels like I have more time to get everything in. More energy anyway. I went to visit Vernon five times this week, but somehow I managed to get to my regular workouts, take the kids to and from school and lessons, and sort of keep my house clean. So…progress! Vernon has been more tolerant of his time at dialysis this week…I think the extra time on the mat and increased oil is helping.
Here are two more bookends, to sum up this season—Vernon resting and Justine holding a butterfly in the Kindergarten garden.
At the moment, I think Maki and I have the most in common: we are right in the middle of these two, and we are both having to reflect on the separation of past and future, hope and acceptance. It’s not a BAD place to be…and I often refer to it as escaping the Matrix. Perhaps hope and acceptance aren’t so different than I thought. Maybe we are capable of containing more reality than we used to. Anyway, it’s a trip.
(Taken by Justine)
On another note, I went to the care plan meeting at Mesa Verde yesterday. It has been a good six months or so and a lot of doors have been closed since then. Of course, its all in the asking. Sometimes it takes a long time before I realize I can rephrase the question and maybe get a different answer. I asked if Vernon would be allowed more exercise, not physical therapy, but something more simple like time on a stationary bike for twenty minutes with the help of an RNA. I believe this is within his residential rights, but I also know his schedule and mood swings can intimidate the staff and so these things have slipped over time. I think it might cause him to be more naturally tired and will also benefit everyone who cares for him. Maybe he won’t need to spend his time in bed climbing up and down from it and maybe he can be more comfortable for his dialysis sessions. It certainly couldn’t hurt. And I think he is ready for at least that little bit of time on a bike. After all, he’s been a cyclist most of his life.
One of Vernon’s old college friends from Norway saw that his Facebook page has been active from time to time and wrote him a nice letter on there. He had contacted me last year, though we’ve never met personally, and showed interest in coming to visit Vernon, when time and funds allowed. I was touched that there was another old friend of Vernon’s popping up to care. Apparently they had been good friends in their early twenties in Oslo (maybe art school in Bergen too?) and had re-established connection several years ago on Facebook.
I had the iPad with me yesterday and Vernon was up for a new conversation, so I read him the letter, which he thought was ‘too short.’ So I went back and read over their previous correspondence. (Sorry, Helge, I hope you don’t mind…) I was struck again how funny and amicable Vernon was when he wrote emails and notes. Made me miss that, but it also made me smile.
They talked a little about the days in Oslo together when they were so young.
Here is a bit from Vernon after we first moved to California:
The part about the American’s being mental cracks me up. Well, it was an election year: I think there was some culture shock there!
But when he talks about visiting his old streets of Oslo, he writes his friend exactly what he told me on that trip.
I remember him saying the same thing to me, though not with the word coma. What a way of phrasing things.
Anyway, after I read him the thread of letters, Vernon wanted to write his friend back. I don’t know if the correspondence made him remember things exactly or if the memories were suggested to him, but what he dictated to me seemed like he was trying to make sense of his situation. Always light and kind in his manner, he wrote this long note…the longest he has ‘written’ yet. He was inspired…even if he thought he was still in Norway himself—or England, I’m not sure (nor was he.)
I’m sharing this today, because its a reminder that Vernon can be reached and brought out of his mental cage. The past can merge with the present and overlap again, sometimes several times at once. But he wants to be connected…and on days like this, he tries his best.
Anyway, all our memories—and realities— are so subjective and mutable, who cares if Vernon always gets it all right at once? At least he is trying. Thanks, Helge, for reaching out directly to him.
Vernon made a point of adding an afterthought. He said it was important.
While bagging my groceries, the Trader Joe’s cashier revealed she’d been a young widow for four years and was often challenged with how to get the kids to all their activities. I told her that though I’m not a widow, my husband’s injuries have put us in a similar bind. “How are the kids recovering from the loss,” I asked.
Then she said: “You just have to filter your emotions in front of them.”
I wanted to write it down so I don’t forget. Those words stayed with me the whole drive home. I don’t know exactly what she meant, or where she was personally coming from, but the words seemed right and true. I’m thinking of them today as I start to share Justine’s point of view. The advice works both ways. They kids should be able to filter their emotions too.
I’m hoping that more frequent use of the mat will help Vernon get out some of his pent-up energy so he’ll be able to sit longer at dialysis. The problem is, Mesa Verde and the dialysis center, though both in Costa Mesa, are two separate trips. Maybe next year, when Justine has a longer school day like Maki, I’ll be able to do both in one go. But for now, this means she has to come with me on an extra Tuesday afternoon. Don’t feel too bad for her—she gets to go to fun swimming lessons and have play dates the other afternoons…but she doesn’t like “going too much.”
I know it helps me to write out the thoughts I’m confused over, so I suggested she could write her own post. I only dictated what she told me.
Justine’s Post
I love visiting Dad, but I feel like its too much for me. Dad has been in the nursing home for a long, long time, and I’ve visited him for a long, long time.
I feel like I go there too much and I don’t like to go to there too much. It’s not nice for me, even though I love to visit him.
What don’t you like:
It’s not fun just at a nursing home…there is nothing fun to do there. Because the parents and the grownups think its more fun than children…like me. I just wish it could be more fun at a nursing home for kids.
What do you like:
I like that its fun for children that get to visit their friends or family, because its fun to see them…even when you are children.
Basically, she likes seeing her dad but she hates going to the nursing home. And there you have it…out of the mouth of a babe. She also took some pictures of Vernon and me.
I got some of them too.
Also, it was a two-bird visit yesterday. I finally figured out that I could sign up Joe to know all the medical comings and goings. Now if Vernon goes to the hospital, Joe can know where he is or even when he’s returning, which will give him greater peace of mind.
Here is a painting Vernon made a month or so back. I couldn’t remember if I’d shared it before, but it fits the following poem pretty well, so it’s making an appearance here tonight. What a bird, what a character—drawn purely from subconscious, a brief suggestion, and the motion of his hand. It fascinates me so.
Though the past couple of days with Vernon have been pleasant, something I recently saw disturbed and stayed with me. My friend Nicole joined me from LA on Friday. She’s comfortable around Vernon as she’s visited many times. He was begging for water as usual, but we knew we couldn’t give it to him as his coughing/choking has become worse nor can he sit upright in the dialysis chair. We hesitantly asked for a small cup of water, but we weren’t sure how to administer it. I remembered there was an empty medicine dropper in his bag, so Nicole fed him water, drop by drop. It broke my heart to see him so desperately reaching his mouth for refreshment that never really came. A drop of water isn’t the same as a gulp.
Here’s my rough poem, trying to spit out what I saw and have been carrying with me ever since…
Trapped on his back,
he kicks the blanket off with birdlike legs,
knocked knees and brittle bones,
so thin and stiffly bent,
not meant for walking
running, hiking, biking,
or climbing up and down trees
(though those ghosts of the open road past come upon them
as they swing and twist, around and around.)
And the ground is so far below.
This nest isn’t soft.
A bed of needles and tubes
hard plastic loungers
that he tries to throw himself from
that he keeps sliding, falling out of,
hoping to reach the floor,
as his bird-legs claw out for a limb, scratching his way to some kind of escape.
He opens his mouth,
crying out for a drink.
Someone brings a dropper,
tipped in a dixie cup
a drop on an ocean of thirst.
Again, he looks like a frail little bird,
with beak wide open:
Feed me. Feed me. More. More.
A drop, it’s nothing. Not enough to swallow. And the ground is so far below.
Sundays are especially challenging. So I’m choosing to think of them as important, rather than hard. This is the day of the week that Vernon and the kids can see each other, and its one of the rare days he isn’t in dialysis, so we just hang out in the sunshine. We’ve been busy doing other things as the spring has opened up, and I hadn’t taken the kids with me for a few weeks. It’s only really hard because the kids don’t necessarily want to be there. They get bored easily and don’t want to stay long. They also have both become guarded (each in different ways) about their dad: they don’t want to see him at his worst and they don’t know what they will get. I totally expected this behavior and they rarely complain about going, but before we even arrive, Maki is making his escape plan: “When do you think we’ll be home today?”
But Sundays are important. This is when I can get Vernon out in the sun. The better he’s feeling, the longer he should stay up an out of bed…especially when it is so nice outside. Also, I’m intentionally trying to get him to lay on the PEMF mat more, hoping to alleviate some of his pent energy and physical agitation. So the kids are having to entertain themselves because when I’m looking after Vernon, I can’t look after any once else. It’s not ideal. But its important. And its important that they are a part of it, though they might not prefer it. Eventually/afterward, they’ll be glad they did…and Vernon is certainly glad to see them. I think it reminds him he still has his family, which is where his personal treasure lies. It also reminds the staff that Vernon is actually a young man, though he can seem like a senile geriatric the rest of the time.
Thankfully, he was in a good place when we arrived. He and Joe were up watching TV in the multipurpose room. I’m always happy to see him out of bed. It’s very rare.
Maki took Justine aside with a pack of UNO cards from the game cart. I admire and am grateful for his big-brothering. Vernon wanted to paint. He was on a roll, one after the other. He must have painted for an hour and a half straight, my choosing a different color for him every time he emptied the brush. For the most part, I didn’t know what he was painting or where he got his ideas, but he was in the flow. He didn’t want to stop. But what I noticed most was that over time, he became more relaxed. Of course he demanded water, even trying to drink the colored paint water at one point, but over time. The activity became the therapy, not just for his mind, but his body.
He started by drawing Justine. And then…
Though Maki was ready to leave when the painting was finished, he helped me out by playing music for Vernon while he lay on the mat. I was finally able to tend to give Justine some attention and clean up our mess. I hope through this, he is learning that playing music, even at his early level, is a powerful thing to give away. He can see how much it relaxes and uplifts his dad. He’s seen other musicians do the same thing in the past, but hasn’t felt up to par to bust out the guitar in front of them. We’ve had many friends that are musicians who have been too uncomfortable to play for Vernon. Though they’ve said they want to, they’ve never come. I can understand why: who wants to look at mortality and sickness that close up if you don’t have to? But Maki has an in. He doesn’t have a choice to but overcome his discomfort, and the guitar is a tool that can help him…as it also helps the listener. There is power in his hands…and he is learning to use it for good.
Vernon’s water obsession has returned. This isn’t brand new, its been building for awhile. I did call the doctor about it today though, so hopefully there will be some sort of solution, even if it’s short-term. When I offered him the usual piece of chocolate to cover up the taste of his medicinal oil, he still insisted he preferred water. Nothing brand new here, either. Since we were at Mesa Verde, instead of dialysis, I was able to fetch him a cup of ice chips, something they seem to approve of. If I’ve not mentioned it yet, his speech therapy was discontinued about two weeks ago as he wasn’t able to be revived fully in time for pre-dialysis sessions, nor was he retaining enough of the activity memory to make the sessions worthwhile. (His therapy benefits/hours are limited, so it seemed best not to squander them—in the words of the therapist.)
He has now decided that he must not be given water because he is ‘in prison.’ This is slightly more dramatic than the ‘school for naughties’ that just the other day he was convinced he’d been put in. He does try to make sense of things, and surely at times this is what he feels like. But he still shows his survival smarts. He took the cup of ice chips and stirred it with the green watercolor stick he’d been given to make artwork until the ice had slightly melted. He was making water! Who care’s if its green, right?
Of course he choked badly even on that little drop. Days like these, he’s so agitated and angry that he can’t be guided, and giving him a little ice is just as dangerous as a full cup of water. It’s heartbreaking, but that little freedom, that little rebellion, seems to provide more comfort to him than my visiting presence does.
Vernon did agree to do a little artwork, regardless. I’d brought him a new medium, watercolor sticks (a glorified colored pencil.) He took to them pretty well, once he got himself in the mood. Here is a peek (complete with coughing and other background banter.)
The following was even more interesting as Vernon started with a fish in it’s environment and then added ‘our home.’ My therapist will have a lot to say on this one, I’m sure. (She’s suggested I ask Vernon to draw a house…so now I’m extra fascinated.) It looks more like a shark to me, but what do I know what was going through his head. That’s art for you!
Today’s post doesn’t feel very fresh, this is all so much what we’ve seen before. I suppose that is the nature of this kind of condition…it goes on and on in ever decreasing/increasing cycles. That’s why I like involving artwork. At least the output will be new.
He made one new (to me) statement that I thought was worth sharing. When it was time to leave, and I had to put Vernon back to bed (if only temporarily) I told him he could just take a little rest, he said: “It’s not resting. It’s being left alone. And that’s against the law.”
Well, its not illegal. But I get his point.
Hopefully the doctor and nurses will help him get on top of his thirst. Like with everything, its little steps. Little shuffling steps.
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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