by Allison Moore | Apr 27, 2016 | Day by Day |
I’m so thankful to be a part of a wonderful church that looks after my family. I truly can’t imagine what these last two years would have looked like if the people of that community hadn’t shown such generosity and care, practically as well as spiritually. This weekend, Heritage is hosting another creative event to bring women together but also to benefit the family. We had so much fun at the last one, I know it’s going to be a lovely morning, connecting and creating—my two favorite things!
Tonight, I’m getting into the zone for this weekend’s event by knocking out some handmade cards. I’ve been thinking about how sometimes the best way to get past a creative block is to do something for someone else (instead of ourselves.) in a purely giving spirit. I think it goes for all sorts of ‘blocks’ in our lives. Anyway, I’m making some cards for some friends. Then I don’t get caught up in my head whether I’m doing ‘art’ or not…it’s just a gift, nothing to overthink, just a joy. And then, the flow can begin. Funny how that happens.
by Allison Moore | Apr 26, 2016 | Day by Day |
Last week, we started reading one of my favorite books, The Princess Bride. I skip over the italicized ‘author’s notes’ to keep the story flowing. He really likes it. Why wouldn’t he? It’s SUCH a great story and it moves quickly (better for reading out-loud.) So that helped us through dialysis this morning. He was pretty distant but stayed relatively still (unlike how he was with his sitter yesterday.)
I wonder what he thinks, where he is in his mind? I asked him a series of questions, hoping to gauge his bearings, but all that came out of them was that the only thing that he wanted, that made him happy were Maki, Justine, and myself. It almost seems like those are the figures he holds in his mind (even when he gets the names wrong) and as long as he has them anchored in there, he doesn’t seem to care if everything else is blown off in a fog.
There was a also a short meeting with our attorney (Vernon’s attorney, really…but I handle it for him, obviously.) He still hasn’t read or sent our letters off, which at first disappointed me, but now it seems that the legal stuff won’t be wrapped up for awhile, so maybe its just as well. Though my emotions rise up over it, I have to trust legal counsel and believe that things are done according to their proper time. He also advised me not to share much about the legal stuff until later, so I’ll leave this light update here and carry on as quietly as about that as I have all along. But my head is full of new jargon and legalese that makes perfect sense when I’m in the conversation, but makes me slightly anxious to think about later.
by Allison Moore | Apr 23, 2016 | Day by Day |
Look what we found today! Davita Dialysis made an informative activity book for its patients (at least the Spanish-speaking ones) using one of Vernon’s popular fonts: Amatic.
Ok, these fonts show up everywhere, I know, but in a book for dialysis patients that would fall into Vernon’s hands while his own blood is being dialyzed…well, that’s pretty meta.
Here are just some of the pages:
“The only way to have a friend is to be one.” —Ralph Waldo Emerson
“Why do two colors, put one next to the other, sing? Can one really explain this? No. —Pablo Picasso”
I’ll spare you the photos of sudoku, word searches, and kidney-friendly recipes.
Wild. If the designer only knew.
by Allison Moore | Apr 22, 2016 | Day by Day |
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.
by Allison Moore | Apr 21, 2016 | Day by Day |
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.
