Vernon and Joe were all smiles when we entered the room today. They were sat together watching Sunday football, each cheering the opposite team. And they were wearing the same shirt! It happens when you spend a lot of time together, you know. Thank you, Jen, for making the shirts featuring Vernon’s fonts. Want to join in the fashion club with them? Purchase your own t-shirt here.
Justine brought in her baby photo album to walk her dad down memory lane.
Vernon was relaxed and in a good mood. He even allowed us to join him on the bed for a cuddle. This is a rare treat indeed.
But it was when we went outside that the magic really happened. Julia had brought some of my watercolors, brushes and some paper. She set Vernon up and then assisted him through his paintings by filling and cleaning his brushes for him.
These were made, based on what he saw in front of him…the gate, the parking lot, and beyond.
Here is a little more fly-on-the wall footage. Full of ups and downs as always, but with excellent results.
“Painting is a blind man’s profession. He paints not what he sees, but what he feels, what he tells himself about what he has seen.” —Pablo Picasso
“Here I came to the very edge
where nothing at all needs saying,
everything is absorbed through weather and the sea,
and the moon swam back,
its rays all silvered,
and time and again the darkness would be broken
by the crash of a wave,
and every day on the balcony of the sea,
wings open, fire is born,
and everything is blue again like morning. ”
—Pablo Neruda
Our friend Captain Don of Dana Wharf Whale Watching heard I had a visiting friend in town so he offered us Whale Watching tickets whenever we found time to use them. Turns out Maki was off school today as well—celebrating the end of final’s week (his first.) So Julia, Maki, and I bundled up for our two-hour tour off Dana Point. The boat was near empty, with maybe 15 passengers on deck. It felt like the Pacific Northwest out there, or at least Northern California, with the afternoon’s choppy seas and thick sky. In California, our seasons are defined by changes in the light, and the last few days have been notably grey blue in tone. I am never dressed right when things get cold and being at the hull of a speeding boat only made me feel more alive…as if I was somewhere else entirely for two hours.
That’s actually what I love most about going out on a boat…not the view of the shore but the view of the OPEN…to see no land borders at all. It feels transcendent.
I looked up the definition of Bliss in the dictionary and found this: to reach a state of perfect happiness, typically so as to be oblivious of everything else. What a gift. These guys seem to know the secret. Maybe it’s all their time on the sea.
We saw a couple of grey whales though they were laying pretty low, munching mud mid-migration.
It was mostly the vastness of the sea that I enjoyed, the untethering from the land and all its responsibilities, obstacles, and routines. Those negative ions didn’t hurt one bit, either.
It was ours. Ours alone.The whole sea, as far as my brain and eyes were concerned. All the life was happening just below us…complex and mysterious. We could just wait for the rare occurence of a splash and a whale. But it was pleasant…even the waiting was a gift.
Later in the afternoon, I received a call from a nurse at Fountain Valley Hospital that Vernon had been taken to the ER due to low blood pressure. The ambulance workers once again decided that he was a worthy worry. It is even possible that this is due to is an increase in his oils. (That’s a road map we haven’t written yet.) I got the phone call hours later, during a Trader Joe’s shop. I couldn’t panic because he was already on his way home by the time I got the news. A nurse who had helped us there before took it on herself to call me. There had been nothing to worry about. And I didn’t even know it.
“I travel not to go anywhere, but to go. I travel for travel’s sake. The great affair is to move.” —Robert Louis Stevenson
Although bringing Vernon home for Thanksgiving was an exciting milestone of sorts, it wore me out. In some ways, I am only now coming back into the energy I had up to then. It was a shocker to realize how needy he actually is when he enters ‘my world’…it was more shocking to realize how unable I am to take care of him. I used the word ‘shocked,’ but it wasn’t just that, because I didn’t NOT expect that. It was a deep reality check.
But I’m trying to think in solutions as much as I can. That’s my new thing: solutions over problems. (So I try to remind myself.) I knew I couldn’t face a massive wheelchair van again. It’s an expensive rental, but there are lots of intimidating (and time-consuming) safety belts which I found quite stressful. I also knew that Vernon got overstimulated quickly by the speedy movement of the world through the window. He had seemed quite overwhelmed and anxious early on in our 45 minute drive home Thanksgiving morning and had to take a long rest on the guest-bed to recalibrate for company. It seems that if we can get him a little more used to being a sitting passenger in a car, perhaps longer trips will be easier in the future.
On Sunday, I brought the minivan (yes, the one I haven’t got around to selling) to Mesa Verde and asked a staff member to assess if Vernon could be easily transferred into the back seat from a wheelchair. You’ll remember my friend Andrea, who’s mother Luiga had stroke last August? Though her mom is still slowly rehabbing in a nursing home, Andrea has been taking her on outings in her car. I believe she can transfer her from car to a wheelchair now, but at first she used to just take her driving, if nothing else but to get her out of that boring home and stimulate her senses a little. I’ve been watching them on their journey and finally today, we tried something like this ourselves. I realized when I signed the leave book, it was only the second time I had taken him out on something nice and fun in the whole year he’s been there, though he travels out on ambulance almost every single day.
We didn’t know what to expect. Perhaps it would just be a drive around a block, but the staff all seemed happy to see us try. I was nervous, but I knew this time, I could just pull over anytime he needed me to stop driving. We had no real destination in mind, and one of the kindergarten moms was willing to pick Justine up so we didn’t need to rush back. We figured out which side of of his body a seatbelt would stretch most comfortably. Julia, who sat with Vernon in the back seat, propped him up comfortably with pillows.
It was a beautiful warm and hazy day. I drove as slowly as I could toward the coast (mostly because I didn’t know where else to go.) We kept adjusting the windows for his comfort, but it seemed like a good idea to get him as much fresh air as possible. His eyes were closed much of the time, but I knew they were open sometimes because he directed my driving from the backseat. Whenever I asked him what he wanted, he just said: “Whatever you want to do. You are in charge.” I told him he was the perfect husband.
We ended up just a mile or two away in the relaxed, beach-y strip of Balboa Island. In January, it drives like a ghost town, so I was able to amble the van along till we found an empty parking space by the sand. He seemed happy just to watch from his comfy spot in the backseat.
The whole trip was about an hour, if that. He was ready to return to bed at the end of it, and I could tell when he was winding down. But he never panicked, he never got sick, he sat upright the whole time. It was very pleasant. I don’t know if he will remember the day and what we did, but I know now he will have an idea of what to expect if I say we are going on an outing next week…or the next. Progress.
Here’s a video just to give an idea from Vernon’s point of view.
Julia had a few ideas for Vernon up her sleeve when she came out to visit. Inspired by Josef Albers‘ Kombinationschift alphabet, which uses 10 basic shapes based on the circle and rectangle to create a system of lettering, Julia cut out the series of small shapes from cardboard and brought them to Vernon to see what he might be able to do with them.
He made a tractor.
Maki got involved at this point and helped his dad form simple letters.
Who knows, maybe Vernon will be making fonts again one day. It’s not a bad way to start.
Vernon always seems most stimulated by conversation with new people, and Julia was a treat, bringing in her interest in art and design. Vernon sat forward often, engaged in the conversation, sharing his new idea of studying ‘environmental art,’ where he might glue sticks and leaves to cardboard.
He was in good form, even making a few jokes that Julia, being English, immediately laughed at. Some of them were a little naughty, so I won’t quote him here, but he was pretty funny!
His mind still seems to be showing improvement. He is swallowing well, though he isn’t as interested in water anymore…he must be getting properly hydrated at last. However I am very concerned about his left arm. It still looks terribly swollen though not as tight as before. The doctor has been notified again and hopefully he will arrange another meeting with his vascular surgeon, who performed the surgery two weeks ago. I keep thinking, if this had happened to my arm, as a normal person out here in the world, I never would have allowed it to look like this so long without demanding medical attention. The staff tells me that its partly because he rolls around so much and can’t keep it elevated. It may be nothing, but its very frustrating as it just looks so bad. Thankfully, he isn’t showing signs of new discomfort or infection.
It’s a holiday today. I’m thankful Julia is able to stay with the kids so I can get up to see him this morning. Hoping he’s in the mood for more jokes!
Update: It’s evening now, and he was pretty good today. We have made appointment for next Tuesday with his surgeon.
My friend Julia has come all the way from the UK to visit for two weeks. She and her family lived down the road from us in England, practically neighbors, so we spend a lot of time at their house and became very good friends. It’s been wonderful to see her again after all these years, but its especially meaningful right now as she is the only person besides his family whom I’ve seen from that time in our lives. Julia knew Vernon and myself as a couple for six years. Its good to reminisce about that long part of our lives that seems so distant now. The time that Vernon has been in care here is nearly equal to the amount of time that we lived together in California, so even those memories are becoming more distant, so it is very good to reminisce and honor those first six years of our lives together in England. With Julia here, that doesn’t feel quite as long ago.
Anyway, its only been a little over one full day that she’s been here and we are having a great time (which includes another family night honoring Alan Rickman, one of our favorite actors by watching Galaxy Quest and making paintings inspired by his likeness.)
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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