The kids and I were on our way to visit Vernon after church this morning when Mesa Verde called with the news that he was on his way to the hospital again, this time due to his complaints of severe pain around his G-tube. “What do you think, kids?” I asked. “What do you want to do? Should we still go visit him for Easter?” Maki shook his head no. He didn’t want to get stuck there all day at the hospital. So we made a u-turn and they were dropped off at my parents’ house, where my mom would make them a nice lunch and hide my stash of plastic eggs in the garden.
Apparently he’d been complaining about the pain for a few days, but today it had got so bad, the nurses couldn’t get near enough to feed him food, water, or his multiple meds. It seemed a small thing to go to the emergency room for, when many people there are suffering so much more, but I suppose this tube is part of his life support, so it can’t be taken lightly.
Though he was out of sorts when I first arrived, he was in a good mood, actively squirming around his bed and the mattresses on his floor. (Joe tells me he has crawled as far as the hallway sometimes.) Considering he doesn’t receive physical therapy in any way, I can’t help but applaud his exercising efforts. At least he is moving.
Anyway, at Hoag he was eventually able to receive a strong pain killer and have his tube flushed out. The waiting wasn’t so bad either, because he was so conversational and connected. I took a lot of videos, and I’ll share some of them here.
Concerning the accident (which he lately we have been able to discuss without with out his getting angry) Vernon seemed to have some memory. This is new.
We had lots of conversations about his family, the first band he remembered liking (the JAM), which friends had visited him (he was very curious over this one and wanted a list of names), he even apologized for being in a coma for so long. I don’t know how coherent he is about everything, he still goes in and out, but he made pretty consistent sense today. I’m glad I recorded some of it, or I might have have forgotten too. Here is my favorite:
And here is a special message from Vernon to you!
Beyond chocolate,my friends, may you experience new awakening in your own hearts this season. Happy Easter!
“The reasonable man adapts himself to the world: the unreasonable one persists in trying to adapt the world to himself. Therefore all progress depends on the unreasonable man.”
―George Bernard Shaw, Man and Superman
Some time ago, I’d found Christopher Reeve’s biography, “Nothing Is Impossible,” on the shelves of the care home. I’d started reading it, but didn’t get far before it disappeared into the book pile of good-intentions by my bedside. I never know what will keep his interest, so I often take a couple books at a time with me to dialysis, just in case. This one came in the bag today.
I started reading cautiously, worried that he might react negatively to someone writing so frankly about his disabilities. The book was published 7 years after Reeve’s catastrophic accident, and he’d used the time to work through the battlefield of his mind and come out with a strong attitude about life in general. Vernon loves to be read to—on good days. But this was no Narnian landscape of vibrant fantasy, this was someone talking about life in a wheelchair—someone who had a family he loved, friends he admired, passion and purpose, but he couldn’t move his body on his own. He was also someone who admitted depression and grief were part of the journey. He spoke of his post-accident life as his “new life.”
Here is an excerpt:
“The emotional extremes of adjusting to a catastrophic illness of disability range from suicidal despair to recovering an appetite for life. Somewhere in between ins a gray area of numbness. You don’t feel really depressed but you don’t get excited about anything either. One day blends into another as the same rituals of care are repeated over and over again. You think about calling a friend but decide not to because there’s not much to say. Often you have to be persuaded to go outdoors by a nurse or a family member who reminds you that you’ve even sitting in your office without moving for more than six hours.”
I looked up at Vernon. Too much? What do you think? He almost smiled: “This is amazing. Keep reading.” Of course he says that whenever we read something he likes, but I was surprised he liked this so much. He even asked if he could have a go at reading himself. I think we both got a buzz over the idea for a minute, but his reading eyes are no good so he handed it back. (But I promised him I’d look for some books on cd so he can get stories read to him in his room.)
Since he liked the book so much, I asked if he’d pose with it.
“Don’t you want to take one of me reading?” he asked.
Here is another part he seemed to respond to (perhaps it was my imagination):
“And then, in an instant, the moment my head hit the hard ground…everything changed. Or so I believed. As I lay in bed in the ICU, I concluded that I could no longer be a real father to my three children. I assumed that my new life as a quadriplegic would not only mark the end of the life we had known, but cause enormous psychological and emotional damage to them as well. How could I relate to them if we couldn’t do things together? How would we adjust to the loss of spontaneity? What kind of a father would I be if I literally couldn’t reach out to them, if I was always going back to the hospital, if a nurse had to be on duty 24/7?”
He continues: “Now I gave them my full attention, and I soon learned to listen more than talk. That began a process of discovering that, in bringing up children and relating to others, sometimes being is more important that doing. I was also to learn that even if you can’t move, you can have a powerful effect with what you say.”
I think Vernon and both were encouraged by the words of this book today.
Vernon wasn’t in a great mood yesterday. He didn’t want to get out of bed, then he decided I wasn’t his wife, but possibly his mum. A special Easter lunch was being cooked for the residents and staff on the outside grill. The smoky aroma of carne asada filled the air. So in the spirit of damage control, I made sure Vernon avoided the area completely. I knew it would make him hungry—it was making ME hungry, and I’d just had breakfast! Once we got him up, I tucked his geri-chair up against a table in the multi-purpose room.
He was in one of his easily frustrated moods, but he was willing to start painting. I think he gets so bored sometimes that even if he’s in a bad mood, the knows the project or company at hand is still better than nothing. He didn’t talk much but went straight to the paint. What colors do you want, Vernon? “Black. Black and red.”
This time, I didn’t see him painting anything I could recognize, but I enjoyed watching him. Even since he painted last week, his strokes are more confident. And this time, he was full on-abstract, even geometric in his approach. I recognized his lines from earlier work, though I doubt he was never quite this free with a paintbrush. I particularly loved this one, which could fit in with Vernon’s section of our art collection.
Following is a photo I took this morning of his most recent painting (that I knew of.) He didn’t paint a lot, but he often mentioned wanting to get back into it, particularly after moving to California and spending time around my parents’ studio. This is one of a series of three, possibly still unfinished, that Maki has salvaged from the garage and hung up in his bedroom.
After another post about Vernon’s painting, Synnove, Vernon’s first wife (they had met at art uni) sent these thoughts by email:
“Its so nice to see you out with the wheelchair and to see Vernon painting. The last painting was wonderful. Did he paint the light blue background himself? Vernon was always very keen on making a one colour background on all his paintings. I can see his lines in the painting. I wonder if he is just as good a painter as before and even better.”
“Vernon was always very “unfree” when he painted. Artists often make themselves a lot of rules they are not allowed to break, and Vernon was just like that, but he would keep challenging his own rules, struggling with them. I always thought he made it harder than it needed to be, and I am hoping that he now perhaps can enjoy painting and let his talent rule (not a bunch of rules), because I know he really did love painting (He just made it such a struggle.)”
That is interesting because there does seem to be so much freedom in his painting at the moment, and yet, he still seems to have a deeply rooted sense of preference and style. I don’t have much of his old painting work to compare, but I am happy to see what I think of as flashes of his genius coming through.
“Somebody should tell us, right at the start of our lives, that we are dying. Then we might live life to the limit, every minute of every day. Do it! I say. Whatever you want to do, do it now! There are only so many tomorrows.”
― Michael Landon
I don’t know if I’ve ever actually “lived a day like it was my last,” as the poets-and-advertisers-that-be might encourage us to.I don’t even know what that would feel like. But I do know what it feels like with Vernon. I don’t spend every single day with him, and when I do, it’s only two or three hours at a time. But lately, I’ve started approaching my time with him differently. I try to be careful not to treat it like the chore it felt like when he was most consistently difficult. He can still be difficult, but its never the WHOLE time. As I park my car on the mornings I see him, I tell myself: “You get one more day with your husband. This is a gift! This is borrowed time—be grateful. Enjoy what you can and help him enjoy it too.”
Sometimes he is sleepy, sometimes he is angry and impatient, swearing loudly and being mean (he says he’s figured out that’s “the best way to get rid of people” when he’s annoyed), and sometimes he is lovely and receptive and inexplicably wise. I never know what I’ll get, so its hard to make plans. But at least I can make them. He doesn’t even have that capability.
Thinking this way, like it might be his last—that this day is another chance to connect somehow, a chance we might not get again—has been boosting my attitude, which tends to change in all sorts of ways depending on the mood Vernon is in when he’s with me. Above all, he’s unpredictable.
Here is a little span of thoughts on the matter, that I jotted down before I went to see him this morning:
If this were the last day of your life (and I knew it)
How would I spend it with you?
What would you ask?
Any unfinished business?
What secret story would you tell?
Which friend would you call?
If this day was all you had left,
and all I had left of you…
Would I treat you any different?
I’ve long forgiven your dishes rising at the side of the sink
I know you’ve forgiven mine.
In fact, I’ve forgotten what fighting even felt like.
Will one of us look back and say:
That was our last March?
Our last spring?
That last year?
I sat next to you yesterday, wondering the same things.
I’ve previously mentioned that Justine joined a local theatre group this month. She’s just one of the little ones involved, so I didn’t know how much time it would all take when we first started. But in this troupe, every actor is considered equal so I took her to a lot of rehearsals. Last week was the week the play went on so it was particularly busy. But she loved every minute she was there…even if there were some exhausted collapses after hours. To quote Justine: “I fit in PERFECTLY with those people.”
Sigh. And my heart expands a little, making room for her (and me) to enjoy it.
She’s only five, though she identifies as twenty-three ( I just asked her.) I guess she thinks this group of make-believers see her as she wants to be seen. This was an opportunity that came up, but it has been fun and strange to be on the other side of it: drop offs and pick ups, painting backdrops, taking photos, baking cookies. I never thought I’d be a stage mom…but I was last week. It just seems she’s too young to drop her for such long periods, though I can use the babysitting help. I haven’t been able to commit to the hours necessary for a Kindergarten Room Mom, so this seemed the next best.
I grew up doing theatre myself. I remember the magic. I remember the wild head space for play and meeting others in theirs. I remember the lights in my eyes. But after too many years ( I was a performance major in college and then chased the off-Broadway life in New York through my twenties) I turned my back. It became something else, something false and destructive. Long story—basically I found I’d lost the passion and decided never to look at it again.
So it’s been unexpectedly fun to watch Justine become immediately enamored with the theatre, at least this experience in particular. She got to play a duckling and a tadpole in HONK!, a telling of The Ugly Duckling.
The cast worked very hard and performed well. I was impressed how the older actors looked after the younger ones in everything from coaching to costuming. The director encouraged her cast to “figure it out.” I could see the life skills engaging in front of my eyes: listening, speaking, collaborating, accepting, working with others who seem totally different from yourself, resourcefulness, language, movement, emotional intelligence, humanity, creativity, empathy, and making friendships…all under the umbrella of magic-making.
“The brain is wider than the sky.” Emily Dickinson
Late Friday night, I was informed that Vernon had been sent to the ER again because he’d pulled his G-Tube out. It was no big deal, they fixed him up and sent him home. I didn’t need to be there. But I’m paying attention: the last couple of times he’s gone to the ER, there has been a depression link, so I am hoping that what is now being prescribed is helping rather than hindering. The doctor has slightly bumped up the dose for now, but he also mentioned that some antidepressants can increase anxiety so we might be seeing some of that.
I’m finding if I can coax him into a tender place, if we focus on big abstract things like love and romance or his dedication to his family, he is more likely to connect intellectually. I’ve had some marvelous conversations with him lately. Sometimes I’ve managed to write down on my phone’s memo-app what he says, but if I miss it the first time, he doesn’t like to repeat himself. When I can connect with him on this level, I recognize more of the Vernon I used to know: a philosopher of sorts, very sharp and intuitive in his ability to read people. He’s even given me some advice lately that I’ve decided to respect. That’s it: I recognize the part of him I miss most.
It does come in waves, but it’s remarkable to be access him in these conversations. Each conversation is totally different, mind you—some are still very short and random. I’m also learning that in finding this honest and connected space with him, I must leave room to transition him back out of it so he doesn’t become volatile when I have to leave. Twice this week, I’ve been late for school pick-up because he became violently upset when I stood to go. This mostly seems to happen if we’ve connected from the heart. I must be more mindful of the time. It’s like he’s been warmed up in a nice bath, the put out alone in the wind. It’s heartbreaking for both of us.
Vernon is bringing up ‘home’ again. He wants to be with us on the couch, he says. He wants to be with his family. The other day, he told me he had a dream of when we were first were together, that I had left him and he was desperately hoping it wouldn’t end. Later, he kept asking what will he do when I send him back to England alone. Who will take care of him? I assured him I wasn’t leaving him, but I was thankful to know exactly what he is experiencing. I think its loneliness and the fear of separation. Incidentally, separation anxiety was something Vernon had struggled with in his life.
So I wonder how much of that is a new thing or an old thing? But it seems positive that he is expressing his psychological thought. Just as his family are learning to stay in the strange frenetic space between grief and joy, disappointment and hope, he may be learning it too. It’s a sign to me that his still in there. It’s amazing what stays a part of a person when other things leave.
But mostly I see love. That is always there. It’s been remarkable to think about it. Vernon has been teaching me remember it in myself and look for it in others. It’s what every human being has in common: every single person has loved ones. Every single person loves and is loved. It doesn’t leave our bodies until we’re gone. We should spend more time accessing that while we are here.
(PS…That doesn’t make it easy. But it makes it better.)
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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