I don’t know how quickly the new drugs are meant to work or if they will do the trick for Vernon’s mood swings, but yesterday, he already seemed more relaxed (though his eyes and conversation were alert.) He wasn’t twisting as much as usual, for one thing, and he didn’t dip into anger while I was with him at dialysis.
It happened to be a cold, grey morning for May, and maybe that’s where he got the idea that he was still in England. He kept talking about going to America…and would I come with him?
“I’ll take you to America with me. If we do it, it will go excellently. It will go very well. It will go according to plan. I just don’t feel very well right now so maybe we should put it off for a few days.”
When I asked him why he wanted to leave England, he said: “Because it’s cold and the people here have been horrible to me.” (I assume he means the medical staff…although this could be a
This is severe traumatic brain injury, almost two years in, not much changed in this area for a long time. He has a hard time getting original thoughts, but his mind tries to make sense of things when he gets an idea.
Really, the only thing he cares about is his family. I have been able to sway his dark attitude at times by asking him who he loves. It’s always the kids and me. Always.
I showed him a photo of Justine and a video of her newfound hula-hooping skills. “She really does make my heart melt,” he said, staring. “When she grows up, she’ll have so much to tell me: her friends, her fancies.”
I showed him a picture of Maki. Interestingly, Vernon does always remember that he plays the guitar now. “I’m so proud of him, you know. He’s so good on that guitar. I don’t see him very much. How can we change that? I want to make more time for him.” Then he added: “He is special because he has a guitar.”
So he gets his thoughts mixed up still. Big deal. The truth of his heart still comes out loud and clear: he loves his family and he wants to be a good father. Vernon has ALWAYS wanted to be a good father, at least since becoming one over 14 years ago. I wasn’t there for the early years, but it was clear as soon as I met him that Maki was his number one. So I shouldn’t be surprised that even after his injuries, the main thing he still wants to be is a father—a good one, if possible.
I encourage you to take a moment to prioritize your thoughts, if you can. If you could do only one thing well, play one important role, what would it be? We have so much buzz around us, so many responsibilities and so many options that the path can get buried. But if you were at a point where only one thing mattered, what would it be? That’s probably what you should be investing in most. Note to self here…I’ll be thinking about this too. If Vernon can get to the core of his heart with all his disability and extremely dire circumstances, even away from home, I should think the rest of us can too. Take heart and run with it!
Photo taken June, 2013
“The heart of a father is the masterpiece of nature.”
―Abbé Prévost
Tuesday night, I got a call from Mesa Verde, informing me that the doctor had prescribed nuedexta to treat Vernon’s recent mood swings. He hasn’t just been lashing out at me, it seems. There has to be some real problems going on for the doctor to prescribe something without my asking for it. Other complaints must have reached him. So they are trying this new medication out and decreasing the depakote, which no longer seems to be working (if it ever did.)
I also got a call on Monday from the case manager, letting me know that Vernon would be getting a half hour of restorative exercise with an RNA three times a week on Tuesday, Thursday, and Sunday at 1:30pm. I didn’t want to miss the first day, partly because I wanted to see what they had in mind for him, but partly because I wanted to make sure it happened! So I made after-school arrangements for the kids and cancelled an appointment, only to get there and find out he’d already been taken to the gym in the morning before dialysis. I insisted he go in again while I was there, having made such an effort to be there at the planned time. Thankfully, they obliged.
Rudolfo, his RNA, is a saint. He is always patient, never making me feel like I’ve inconvenienced him in any way. He’s the one I’d seek out when I needed help transferring Vernon into the minivan. He talks to Vernon in a kind a even manner, even with Vernon shouting out like a child offended by pain. They both told me that the morning session hadn’t gone well. Vernon said it was painful. Rudolfo said it was short.
That’s why I wanted to be there. I knew if I could talk him down a little, it might go easier. If I couldn’t talk him down, I could at least cheerlead. It seemed to help, as Vernon got through the whole session this afternoon. There were 15 minutes of bending and stretching his left arm—well, trying to. “It’s locked! It doesn’t work!” Vernon pointed out. Then he was put on a two-piece “bicycle” in the gym, where he could rotate his arms and legs at the same time. Vernon was quick to announce that this wasn’t a real bike at all, but we told him that this was a starting place. If he ever wanted to get on a real bike again, he’d have to put up with this contraption for awhile. He didn’t seem convinced, but he managed to go the whole 15 minutes. He quickly gave up on using his right arm, but Rudy said he did much better in the afternoon than the morning.
I cannot regularly go to each of these sessions but I intend to be there for the first week, anyway. I don’t want them giving up on him too soon. It’s hard, when he’s so obstinate and difficult, but with coaxing and constant attention, I think we will see results. If nothing else, he should be more naturally tired by the end of the day. My hope is that in time, he will get used to the routine and look forward to these sessions. He’s not allowed to sleep or excuse himself some other way, as far as I’m concerned— it’s already taken too much of my effort and time just to get this. I want to make sure it gets kept up!
Over a week ago, a dead grey whale washed ashore at Trestles, one of the main surf beaches in town. The problem was how to get rid of a creature with a literal dead weight of 60,000 pounds. The tide wasn’t strong or high enough to move it back into the ocean, and of course, the baking sun wasn’t helping the decomposition…at least for the passing public, who seemed as amazed by the stench as the spectacle.
I thought about this problem every day. I don’t know why this caught my imagination so, but I guess I’ve been living with my own problem that seems as strange and large as that whale. I kept checking articles, asking around: what are they going to do about the poor thing? At one point, I read that it was 90% liquid under it’s skin and blubber, so though they had decided to cut it up and remove it to a separate waste facility (the sand too rocky to properly bury it, and the whale too toxic to throw it out to sea—or perhaps they did not want to invite more sharks than already might be interested.)
90% liquid. Gross. But that thought grabbed my mind more than anything else.
When I’m not feeling so tough, distracted by projects and busy-ness—and sometimes when I am— I feel like that. Held together with bones and skin, in all its fluctuating thickness, there are rows of days that if I hear the wrong/right song, remember the right/wrong memory, get into guilt over how much time I’m spending with Vernon/Maki/Justine/myself, driven too many miles back and forth without enough breath between, I might slosh into liquid too…and would that be the end of me? Perhaps there’s a reason, they call it “blubbering.”
.
There are many other things to write about. Expect more posts soon, but for now…I had to get this off my chest. I haven’t felt inspired to write, but I have felt the need to. So this is discipline and a way of creating space in my liquid brain.
“It is not down on any map; true places never are.”
― Herman Melville, Moby Dick
In some ways, Vernon was the best I’d seen him in a couple of weeks. He seemed more keen to chat, his eyes more even and his voice clearer. My friend Sandy had sat with him yesterday and reported that they’d had a very bight and pleasant time together…for one hour. Then, for some reason, his personality flipped into anger at his discomfort, and the technicians had to take him off the machine twenty minutes early. At the moment, it seems, there is a dark side to his shows of improved clarity. He can become angry and mean on a dime. Still, I suppose I’d rather that with the moments of sweet connection than the Doldrums, when he shows little personality at all.
But he was clear when I went to see him today. He’d been out in the ER much of the night, having his g-tube replaced of course. Joe said Vernon was feisty and annoyed after he returned, which got them arguing with each other so loudly that the night nurses eventually had to close their door so the rest of the hall could keep sleeping. This morning, though, Joe had convinced a new nurse who didn’t know better to let him take Vernon outside in the sun for awhile. He’d been trying to keep him up long enough so that he’d get tired naturally and sleep better tonight. When I got there at 1:30, he’d had enough and was already back in bed. I took the opportunity to get the PEMF mat underneath him for a half hour.
He told me he remembered Sandy’s being there the day before, that he remembered Joe raising his voice, and that the nurses at the hospitals had helped him. Those sounded like highlights from a whole day— not a bad memory span for Vernon. I told him about some legal issues that are bothering me, and asked for his opinion. He always makes a sort of sense if he tries to answer from the heart. All the while, he rubbed my upper arm and shoulder with his good left hand. For the first time, it felt like a touch from the old vernon, something once so normal for him. It was remarkably comforting.
But when I accidentally touched his foot later, he lashed out at me, swearing at me for the pain I caused him. It was off and on like that, much like Sandy’s day yesterday. Nothing new here really, but that when his brightness shines brighter, his bad moods can be meaner, and it can change so quickly—the pendulum swings wider. It seems that this is mostly triggered when he either feels out of control about something, has to wait to long to have a need met, or if he feels that someone is looking down on him, patronizing him. It doesn’t take much for him to read someone’s tone of voice. I’m learning to be more careful of when and how I laugh, for example.
The Logies came today—at least some of them. I hadn’t seen them for awhile, as they’d been caught up in their own hospital journey with their son, Hudson. They have recently, however, gone to visit Mesa Verde on their own a couple of times—they said they missed him. What wonderful friends he has! It was great to bask in their gifts of music as well as the May Day sunshine. Another couple, Ethel and Jim, wheeled up nearby to enjoy the goodness too. I’d never seen them before, but was told that Ethel had a stroke about a month ago and has been here since she was released from the hospital. I knew she didn’t feel like her old self, but she seemed to be doing great. It’s encouraging to see people there that won’t stay forever. They’ve been married 30 years and have no children. I told them I thought it was a pretty good nursing home because the patients move around and interact. “It has spirit,” Ethel said.
The Logies are messengers of Love. Can’t help but smile to this song. And Vernon couldn’t help singing…
“Homeward bound, I was I was homeward bound.” Vernon sings out the desire of his heart. Even though it shows in extremes at the moment, I am so thankful that he can express himself. I think he means this one…
Lucky for me, one of my oldest, dearest friends is in town to celebrate her parent’s 50th anniversary this weekend. I’ve known Helen since second grade. We got a couple of nice beach walks in this week, and it turns out our youngest children hit it off like gangbusters. Lucky for Vernon, she and her husband Ben, both visiting from Chicago, and her sister Catherine (also a dear friend) who is visiting from Nashville, dropped by the care home to spend a little time in the sun with him this morning.
A cousin of Ben’s, who is a designer that uses Vernon’s font, sent this note along, which Helen read outloud to Vernon:
“People in my office are very familiar with his fonts. Nunito is a personal favorite. I admire how his typography takes established type traditions and splashes fun all over them. There’s something unexpected about the terminals of Rokkitt, the dramatic taper of the stroke on Trocchi and the restrained mirth in Nobile. It’s not hard to see through his design decisions what must be his own joyful and spontaneous personality. There is a lot of life there. ”
Vernon said that was very nice…and true. He happened to be wearing his font t-shirt as well. You can get yours here!
After they left, I got Vernon on the PEMF mat, which does seem to be helping with his agitation if I get him on it frequently enough. That may change if we can get him the RNA exercise times I’ve been asking for. But I think right now, the aim of both is to get him to be more naturally relaxed. Nothing has happened with his gym time yet, but I was assured today that Vernon was scheduled to have half-hour sessions of exercise (arms and legs) two three times a week, starting next week. I’m hoping he can withstand the bike (it’s what I’ve asked for) so I’ll be there for his first afternoon sessions somehow.
Since this turns out to be something that he has the basic right to, I wonder how many other things I should be finding out about. Now that we are buckling down to the reality of long-term care (he is considered a ‘long term’ patient there) there may be more things we can find that will help his quality of life that I had overlooked or been talked down from before. I’m not going to go furrowing through the handbooks tonight, but its something to keep in mind.
A staff member today, who obviously felt threatened by the way I asked about something (perhaps I came on too strong?) suggested that I shouldn’t be listening to Joe for advice about how things were handled. I told her this: “Joe is a patient. He should be more in the know than anyone else. Of course I will listen to his advice. Vernon is a patient too…and there is no way he can ask for what he needs on his own. I am not just a family member here, asking for my life to be easier. All this stuff I ask for does not make my life easier in any way…every single thing I ask for makes it harder, at least for a little while. I am standing here because my husband cannot. When you look at me here, imagine it is him. He can’t speak for himself, so I am here to speak for him.”
The crazy thing is…I said a similar thing, in shorter form, last week, when a dialysis technician, who I felt patronized him without acknowledging that I was right there to help. In that case, I was invisible. Maybe I’m getting a little touchy. Who wants to be invisible? I think I can speak for Vernon when I say neither of us do.
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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