Justine had a fever all night so I won’t be sending her to school this morning nor will I be visiting Vernon as planned. So in lieu of a current update, I’ll share a video from last week.
They’ve had a hard time keeping Vernon in his bed, which is frustrating for the staff, obviously. The nursing home cannot use restraints at all, not even bars on the side of his bed, so they place two mats on the floor between his and Joe’s beds. It’s difficult for the CNA’s to get him back into the bed from the floor, but at least he doesn’t weigh much (he has recently put on weight and now is closer to 110 lbs.) So here he is on the floor with his daughter. There may not be much of his old personality left in him, but there is still love for his family.
And she loves him. In the midst of her fevered dreams last night, she said: “I miss dad.”
In my last post, I spoke about how unlikely it is that Vernon as-we-once-knew-him will be coming back. But giving up on him is out of the question. He still has life in him. He’s still here. He can talk. He can hear. He can see. And he can paint. That’s pretty much all he is capable of, but those aren’t nothing, are they? In fact, for me, they would probably the last things I’d want to let go of too.
Sometimes I think about this quote by Brene Brown: “The only unique contribution that we will ever make in this world will be born of our creativity.” True or not, it makes a compelling case for making something fresh, something your own, staking a claim. It’s a way to move the balance from all the unfairness somehow. It gets something out of you into the world instead.
Vernon was put into a wheelchair after Justine and I took him out for a very short (and stressful) drive in the car the other day. He was in an impatient mood but he was up for painting a bit. I recognized the shape he made immediately. A wheelchair.
So I asked him to make another…
Then he just took off…
(my fault on choice of paint)
I started thinking that maybe painting (albeit frustrating for Vernon and sometimes those helping him) would be a way to discover the “New Vernon.” Obviously, he could always draw and paint, but perhaps he’ll be freer this round or develop a new style. Who knows? They will be small steps, regardless.
But he can see and he can paint. Therefore, he can still contribute while he is here.
If you’ve read my posts for the past two weeks, you’ll know I’ve been going through another phase of mourning. It’s not the first, and it’s unlikely to be the last, I’m afraid, but this one has been particularly hard…it feels deeper than the others. We’ve been reading and re-reading “The Voyage of the Dawn Treader” during dialysis. There is a part where a badly behaved boy turns into a dragon. He scratches off a layer of skin, feeling highly satisfied with himself, but it turns out to be a thin molted layer, and so he tries again and again, never fully able to get rid of his uncomfortable, thick dragon skin. Eventually, Aslan, the God-like lion, comes to his rescue and scratches much deeper with his powerful, sharp claw. It’s terribly painful, but at last the boy is able to emerge from that alien skin, a human once again, but forever changed and humbled by the experience. This is closer to what this stage of grief felt like than any other picture I can think of. Nothing as ghastly as dragon skin, but I have been aware this time, that I will emerge changed forever. That is the hardest part of all.
I’ve been grieving who he used to be…knowing that person is never coming back. Ive spent so much energy on trying to return him to the man we knew, remind his brain of itself, hoping some connection would be made and we’d see neurological progress. Or maybe personality progress is what I really wanted. I’ve looked back over videos of the past year and a half and see that in many ways, he has digressed. We got him back from the Ativan slide, but he hasn’t made enough improvements since the end of summer for me to believe that he will actually continue to improve. He’ll improve here and there, of course, but since there are no new options to help his rehabilitation or quality of life, I have finally been able to recognize this could be the best he ever is again. And this feels like a slowly downward spiral. I have no idea if this is true, but I’m having to accept that it might be.
I’ve cried a lot. I’ve thought too much. I’ve slept more. I haven’t enjoyed my time with him. It’s very surreal to grieve a person when they are sitting right in front of you. But he’s not the man I married. Today, for the first time, he told me that his brain was damaged. Maybe we are both starting to accept that the old Vernon isn’t really there.
His short term memory has been bad since he emerged from coma, but his long term memory seemed somewhat intact as he began to communicate again. Lately, it seems that even that is fading. His words are as confused as ever, but now he has less patience, and he becomes quickly and loudly frustrated when he’s not understood or attended to. It’s closer to the throes of dementia….with some alzheimer’s thrown in. He does have sweet and loving moments, but they only come out when he first sees his loved ones, after that, he loses patience very soon.
By Friday, I was at my wit’s end. I didn’t know what to do with all the sadness that wouldn’t leave. So I pulled out my oil paints and a canvas I’d been intending to start on for too long. I’d meant to do an updated version of this painting (adding a wheelchair), which was made into an album cover for the amazing Ian McGlynn (who has recorded a song for us, hoping to raise support. You can buy a copy here, if you haven’t already.)
Anyway, I started the painting, this time thinking about the Northern Lights as I added the sky. Earlier this week, I’d asked Vernon if he remembered seeing the Norwegian Northern Lights and if they’d been colorful. He told me he’d seen them but that they were blue and white. So I made them blue and white…thinking perhaps it could symbolize his version of heaven, something to look forward to. But when I tried to paint the tent, a shape closer to a spaceship evolved. Hmmm…that kind of made sense so I went with it. I kept the wheelchair, which I’d intended all along. In a rare urgency, I finished the 20×24 painting in three or four hours.
So there you have it. I’m calling it “Northern Lights.” I wonder where Vernon has gone. Perhaps he left the night of the accident and what I’m recognizing in him is a shadow of his old self, stuck in his body somehow. Maybe that’s what it has been all along. Now it feels like even that is fading. Perhaps he was abducted by aliens? I know HE has gone somewhere else. Just not sure where…or if we will ever see ‘the old him’ again. Its not a death, but it does feel like a small one. It’s a bit like falling of out love, just as intense as falling in. I don’t mean that in the way someone who has been deeply hurt might mean it. I am not moving into negative feelings toward him. It’s a different love I have for him, not as one to her equal. I’m committed to him, and I’ll continue to take care of him, but the Vernon we knew is not coming back.
I’ve posted this song before…a very special one to me: it was sung at our wedding. Open my new mind’s eye.
In a creative rut the past couple of days, I’ve returned to the task of sorting out the garage. Julia got me started last month, but there are boxes I have been putting off going through. Yesterday, I boxed up most of Vernon’s books to give away, separating the typography books (all 7 or 8 boxes full) from the others, mostly books about art, cycling, coding, and spirituality. Dave, his type colleague, offered to help organize a donation of all his antique type catalogs to a typographer’s library in New York.
Among other things, I found a spare helmet…
Some seeds. I’d nearly forgotten about the herb gardener he liked to play at.
More shoes. Maki’s already nabbed the yellows.
We’ve been hoarding these things in the garage and on our shelves for so long. They won’t be needed by Vernon anymore so I welcome the next round of letting things go. They are just things but they symbolize so many of the areas of the life he had when he was with us.
I also stumbled upon a box of letters from the mid 1990’s, those last years before the internet and email. I decided to keep most of them…perhaps one rainy day I’ll take the time to read them all again.
Relics of another lifetime. Remnants of who I once was…and wanted to be. Proof that I ever lived in these places.
As it is, I’ve forgotten a lot of the details. But just in case I wanted them, I also found a couple boxes of old journals.
I must have thought they were worth storing all those years. I thumbed through some of them and realized I didn’t WANT to read any more. All the working out of thoughts, all the worries, etc. I no longer related to them. Or maybe I didn’t want anyone else reading them one day…so I threw them all out without any extra hesitation. Goodbye.
However, when I couldn’t find the box of love letters that I’d collected from Vernon over the early years of our relationships. I began to panic. How could I have held on to letters from 20 years ago, but not something as important as those? I thought I’d looked everywhere (though there are a few boxes of clothes I’ve yet to attack.) When did I last see them? What if they hadn’t survived one of the four major house moves of the past three years?
My mom says not to worry, that they will show up. Another friend stated: “they are there.” I am adopting their confidence and not worrying about it anymore. If they are meant to, they’ll show up. Maybe right now, its just not the time to find them.
I wanted to catch up on some of my thoughts over the past week. Of course my parent’s anniversary events and the mini-family reunion brightened my spirits considerably, and today, I feel mostly back in the game, emotionally. But I believe it was an important week in my process with Vernon…another round of grieving (aka letting go) took place, and it was a doozy.
I explained what happened with Vernon’s kidney transplant evaluation last Tuesday. I had long held on to the prospect that our next round of activity would be pursuing a transplant for Vernon. It never struck me that it wouldn’t be a possibility. To have our hopes dashed so quickly came as a shock to my system. Yes, of course, we could pursue a transplant in another area, but the effort at this point seems out of the question, especially since he is so physically vulnerable and he cannot be transported long distances. It just felt like a big giant NO! Another door that I thought might be slightly ajar was shut. On Sunday, I spoke to my visiting uncle, an internist, who said…’there are never NO options.” I told him I’d remember that and maybe pick up the kidney idea again later on, if the signs point that way, but for now I’m going to just carry on as we are. I’m too tired to keep chasing a risky and energy-consuming idea at the moment. The sadness I felt wasn’t just because Vernon wouldn’t be getting a new kidney and that his heavy dialysis schedule would continue but that I knew I was going to have to detach from trying to ‘make him better.’ I’d run out of active hope.
It just so happened that the very next day, I was informed that Maki’s neighborhood carpool had disbanded. We’d been beyond lucky this whole school year that neighbors picked him up to and from the high school. But it turns out that it isn’t too much harder to get both kids up and ready earlier and this way, I get a little more time to chat with our strong, silent Maki. My mother tells me that the drive home was often the most important part of the day with her children, it’s when we actually shared what was going on in our worlds. It feels like good timing with him, I’m ready for it. It already makes me feel like I’m doing what parents are supposed to do.
The same week, Justine lost her first tooth. She has yet another wiggler already. When someone told her that the first teeth start coming out at six years old, she clung to the concept and has suddenly been acting a little older, more poised, on slightly (dare I say it) better behavior. The hair she has been growing out for ages is suddenly long enough for pigtails, which is very exciting. And to me, she just LOOKS like a big girl, a six-year old. It’s as if with her first tooth, the baby look is gone. She also learned to whistle, which she has been doing non-stop, one-note. Tonight she gave me a letter she had phonetically figured out—very few vowels, but the progress is clear. She is having a notable growth spurt on every level at once. I’m so glad not to miss it.
I still will spend my Thursdays and Sundays at Mesa Verde. I will still go up to dialysis every day that Vernon doesn’t have anyone else signed up to sit with him. But I felt an emotional shift last week. I am still his wife, but as sweet as Vernon can be, he is just a shell of the man I called my husband all those years we were at home together. I love him dearly, and I want the best for him, but its different now. I need to give the children my emotional focus maybe more than him now. They are alive and well and growing and changing. I don’t want to miss out on any more of their lives just because I’m chasing after a pipe dream for Vernon. He may get better, but if he does, it will be after a long time…and I can’t think of anything new to help him at the moment. Emotional energy is precious…and I want to make sure I have enough for the kids, who need me too.
PS After several days of aggressive and confused behavior from Vernon, I’ve called the doctor tonight to ask him to cut back on the Depakote perscription. We saw good signs after he was first put on it, but after an increase, he seems to have gotten worse. Could be something else entirely. I’m making notes here so I can remember later on…
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.
[bandcamp width=250 height=250 album=689425947 size=large bgcol=ffffff linkcol=0687f5 minimal=true]
