I find it interesting that whenever I stop to ‘work through’ some personal stuff and do it as honestly as I can, the next day will most likely be better. I saw some great breakthroughs today with Vernon (and Joe too) but they would just as likely have happened if I hadn’t taken on my anxiety yesterday. It still might have been a good day, but I wouldn’t have been as free to enjoy it as I did. My heart can only hold so much energy, and with the release of the most current negative thoughts and emotions (even temporarily) I had more room in my heart to experience that joy more fully. And oh, I did!
I’d asked for the doctor’s permission to take Vernon out again today, but I drove up alone, so I wasn’t sure if they’d let me take him out without another person to help me. When I got to his room, he was working with Lisa, the Speech Therapist. Apparently she had assessed him yesterday and had asked to meet with him three times a week (half hour session each.) We’d worked with Lisa last year, but due to Vernon’s condition, she didn’t get far. Then we had all those disappointing months without the benefit. And now, I guess he’s back in the therapy game, a little at a time.
Joe was in the room too, encouraging Vernon and keeping him calm. Lisa had given him a list of word and sound exercises that he could guide Vernon through on their ‘free time.’ She seemed grateful to have Joe there (aren’t we all?), and she was obviously happy that Vernon was responding so well. He’d tasted vanilla pudding (didn’t like it) and had done some singing exercises that they repeated for me here:
He didn’t want to stop! I think he was hungry to work. Now…for Physical Therapy to get on board with him!
After this, I decided to try to take him out for a drive on my own. Once we got him transferred into the passenger seat of the van, I turned on some tunes, rolled the windows down, and slowly started down the street. I expected to maybe go around the block once or twice and then return, but once we headed west, we kept going until we reached Pacific Coast Highway. We sang out loud to the music (well, I did) and enjoyed simply cruising up the coast. We drove the few miles up to Huntington beach, during which time he said he was comfortable. When he’d had enough, he asked me to return to the care home. In the end, we we drove about 10 miles over 45 minutes (must have been the little one-way streets of Balboa that caught me up.) He was definitely more relaxed this time than the last two outings. We talked about the idea of his eventually tolerating more time in the car and that perhaps eventually I could drive him home. He liked that idea.
Joe greeted us on our return and chatted with us for the long while it took to get someone to transfer Vernon back to a wheel chair. Joe had good news of his own: while we’d been gone, he had stood up in the gym by pulling himself up with his upper body. Everyone was shocked how tall he actually was! As far as I know, this is the first time he’s stood up in years. I didn’t even think it was something they would bother to try. So he was quite pleased with himself, as he should be.
This is the song that comes to mind when I think of my date with Vernon earlier. It was a beautiful day…our first time alone together, free of any facility since this ordeal began.
“Man is not worried by real problems so much as by his imagined anxieties about real problems”
―Epictetus
The other day, I opened an envelope from Covered California, informing me that it was time to reinstate our family’s Medi Cal benefits. There was no accompanying forms, so I panicked (just a little bit), assuming I’d missed the date (like last year.) Of course I lashed myself with negative talk, those old tapes garbled with time but still audible from the depths. “Really? Again? You are so unorganized. Always will be.”
I knew from last year that it was easier to find a live human to help me out, so I went to the social security offices yesterday with my letter. Fortunately the case is open till the end of the month but the agent there asked me for a bunch of forms I hadn’t seen for awhile. Anxiety started up again: “I’m not sure where they are! Will I find them in time? I am so unorganized. Always will be.”
She also told me I’d have to show my tax return for last year before the end of the month. Now if there is anything that has thrown a non-linear thinker like me into a cold sweat consistently each spring, its the knowledge that I have to do my tax forms. I get all tight and twisted over complicated paperwork that feels like its set up to trick me into writing the wrong amount. I get nervous that I haven’t worked out my business spending appropriately. For any number of reasons…this just makes me nervous. And its never like I have any money to really show for it, but that can makes me feel ashamed sometimes as well!
Isn’t it funny how I can manage life in and out of hospitals and nursing homes, in near-death experiences, while spinning domestic plates, and yet some weird part of my brain that holds on to shame and anxiety in this area can stop me in my tracks?
Thankfully Vernon’s dialysis was covered again today, so I was able to take the morning off. I made a big cafetière of coffee and started a (growing) list of to-dos—and to-finds. Of course I ran circles around myself, checking off the less stressful things first: phoning down W-2s, printing of packing labels I’d been putting off. I made an appointment with the my accountant, who can’t see me till next month…but its’ worth noting that this is the first time I’ve made a tax filing appointment as early as March in my life, let alone making it in February.
It was time to search for the documents I’d been asked to show. The mocking came again and stopped me. “Why can’t you start searching for them like a regular person. Come on, it’s the main thing on the list today—what’s with the procrastination?”
I actually stood in the middle of my living room and prayed: “God, ok, I know I have a lot of doubts right now. But at this moment, the biggest one is in myself. I really need help in these little things because to me they are very big things. This is an under-developed weak spot…it’s been there for a long time. But you’ve got me this far. Can you get me a bit further?”
I shuffled through my filing boxes, happy to find SOME of what I was looking for, but not everything. I took a break before the thoughts got me down. Julia called. I told her about my anxiety. She mentioned a few places she had helped me put things. I’d forgotten about two of them. I checked and found everything right where I’d left them, safe as can be.
And so…anxiety attack thwarted and I’m back in the game, though not without slight emotional fatigue. Turns out I am organized. Who knew? (And when I’m not, I have friends to help me!) I’m ahead on my taxes and I’m on top of all my documents. This time, I think I’ve actually changed for the better! I’d call that as close to a miracle as anything I’ve seen for awhile.
When we visited Mesa Verde yesterday, Joe was glaringly absent. This was strange as he had been talking with Vernon for weeks about watching the Super Bowl together. Just before we tucked Vernon back into his room to watch the show alone, we got the news that Joe was in the hospital and had been since Thursday afternoon.
He had been diagnosed with kidney stones and on top of that, a UTI. I know from our experience last year how nasty those infections can be if they get out of hand. They are nasty enough already. I was very concerned, so I drove up this morning to see him at Hoag, expecting much worse than I encountered.
He was plugged up to IVs and he had lost some weight, but he told me this was the best he’d felt in days. He had been terribly ill but the doctors would hopefully be sending him back today with a course of antibiotics for the next couple of weeks. I hung out with him for about an hour and he was charming as ever. He told me was bored with no one to chat with most of the time, and that he missed Mesa Verde and Vernon, “his best friend.”
I was so relieved to see him talking about going back. Sometimes I forget how physically vulnerable Joe is, even though he seems larger than life. He means so much to us…to my family and especially to Vernon. He needs to stay strong. We need him. But more than that, we love him.
How much do we define ourselves by our memories? In order to be yourself, must you remember who you are?
I enjoyed spending the last couple of weeks with an old friend I hadn’t seen in years. I felt like we were able to remind each other who we once were (at least through the other’s eyes) and that helped affirm who we have become. What is different, what stayed the same, what dream or challenge had we forgotten? With all the changing we are always doing in our lives, in and out of season, why do we stay attached to some memories and others just vanish? And over time, we can feel so disconnected to our past selves… why is that?
A few weeks ago, when I broke the news to Vernon that David Bowie had died, he hadn’t acted surprised at all, as he’d remembered seeing it on TV that morning. But when I reminded him of the fact the other day, he practically burst out in tears, as if it was the first time he’d heard. He wanted to listen to his favorite Bowie songs, to which we sang along, right there in the middle of the dialysis room. I was impressed how much he remembered, but when the saxophone started up at one part, Vernon stopped short and made a face: “Not that blasted saxophone.” As long as I’ve known him, Vernon has said he didn’t like saxophones. His reaction in this song was clearly a sign that his personal taste is very deeply embedded in his memory. Isn’t it funny what returns to us (and what doesn’t?) And when we see something we remember about him coming through, we say “THERE he is!” or sometimes, “He’s still in there.”
Maki just rediscovered our family “Christmas Video” that Vernon made many years ago. This was before Justine was born. I think Maki was still spending most of his time in Norway. But he does make some very cute appearances. It’s strange to look back at those moving images now and think: “Yeah, that was our life then. That’s a vision of who we were, what we looked like younger, where we lived our lives together.” Seems like an eternity ago. The three of us have changed so much as individuals since then, hardly defined at all by the memories we had in those times. But if we didn’t have the video to watch, we would have forgotten some of those things completely by now…or would eventually. Maki seemed surprised at the memories—I couldn’t tell if they were brighter or more faded in his mind than mine. I think seeing his younger dad and where we used to live and frolic reminded him again of the love that had always been between them.
Both kids are proud that their ability to remember is sharper than mine, or so they say. But mine is longer. Justine says she doesn’t remember life in England anymore. And often she says she doesn’t remember her dad ever living with us (though she does at times become very sad over the fact he is still “in the hospital.”) So I tell her stories about how he loved her and show her photographs. She’s at an age where she likes to hear and tell stories about herself when she was a baby. I can see the stories I’ve told her defining ‘her memory’ of herself. She remembers the stories and her sense of identity grows.
I feel I’m doing the same thing with Vernon. He knows I’m his wife but he doesn’t remember our marriage. I think he knows it was there but it must be a blur. He barely remembers the day before…though he is getting a little better, it seems. So we keep telling him things that have happened…hoping that even if they don’t trigger his own memories, he can develop a clone-memory just because its been repeated to him enough times. And as long as its true, he can own it as part of his SELF.
But all this makes me feel less connected to my own old memories. They seem to belong to someone else sometimes. I feel so different in my relationships to each of my close family members than I did even a few years ago. I am so much a different person. I hug Justine and wonder…how did her legs get so long, how could she have ever fit in my womb? She talks back like a teenager sometimes…did she ever really just babble sweetly? I look at Maki and think… “He’s so handsome and confidant and able to hold interesting conversations with adults now…was he really ever that small shy child I struggled at first to step-parent?” I look in the mirror and start to recognize more of my mother’s face than the young one I had in old photographs.
But is memory enough to define us? We are who we are now, regardless of how much we remember, aren’t we? Or maybe as long as someone else remembers who we were once, we are even more complete…if only in their eyes.
I was sent some old photos by surprise this week. We had been visiting Oslo for the weekend in 2012 and had a wonderful dinner with some old friends of Vernon’s (now mine.) I hadn’t even known these existed, and they brought back…memories.
“You have to begin to lose your memory, if only bits and pieces, to realize that memory is what makes our lives. Life without memory is no life at all.” Luis Buñuel
The news of the swallow test hit me harder than I’d hoped. Though I’d tried not to get my expectations up too much, it had been a few weeks since I felt any real disappointment in Vernon’s journey. I hadn’t become too used to disappointment, or perhaps I wouldn’t have held up such hope for yesterday. It just seemed that all those months or waiting and trying things on our own should have come to a bit more fruition than applesauce.
One thought I often have when trying to get re-grounded in Hope is “maybe one day this will make sense and I will be more grateful than I can imagine now.” It looks rather small and foolish when I look at the words spelled out for me like that. But it’s not “a reason” or “a great purpose” that I see in this dramatic change in our joint-trajectory. At first, I found that helpful. But now…in a world where nothing seems like “reason enough” and we keep hitting our wheels against walls, sometimes I have to both micro- and macro-manage our dreams. Or rather one gives way to the other on any given day.
For example: yesterday, I was disappointed in Vernon’s swallow study. Although I did allow myself room to grovel in that space most of the day, I worked through some of my major fears by discussing them with a good friend or two. And today, I was able to focus on the fact that we were able to take Vernon on on a walk in a wheel chair for the first time. I think about how Vernon has never done this before: Breakthrough, right? It is a surreal experience to walk in deep disappointment and good progress at the same time. Emotionally, I can become suspended, as if all my cells are speaking to one another but no one can agree on common ground and nobody settles.
Vernon’s reality is this: good, bad, high, low, sad, glad, fearful, hopeful at any given moment. I try to experience the emotion appropriate to each change as best I can, but my reactions to things keep changing too. What used to frighten me to death no longer does. But also…I don’t thrill in hope like I once felt compelled to. Its a special thing to feel it honestly. The highs aren’t as high but the lows aren’t as low. And nobody can tell me if this is a good thing or not. It just is, I guess. What frightens me is that I see the future full of so much energy being exerted to help Vernon but so little recovery to match it. It is more than slightly depressing.
BUT THEN. BUT THEN. The inhale and the exhale. I have to grab at something…and the truth is, if yesterday’s results had been more pleasing, I would probably be beside myself with glee to be walking Vernon out in his chair today. Because it was a new thing. A good new thing. And we passed the test I’d set. Strange how important it has become to keep raising the bar where I can.
We walked to the library center at the end of the street. Joe came with us. Our friend Jen did too. I think next time I can probably handle the walk with just Joe on my own. But Vernon couldn’t tolerate it long and asked to go back, not without first losing his patience a few times. When I asked him why he was jerking his head so emphatically, which he has been doing lately on our outings (I think it may be overstimulation and something like vertigo, perhaps) he said it was to clear his head….and other time, “to get ahead.” He said his brain and thoughts don’t always feel connected. I think this is positive because he is beginning to speak clearly about his own experience. This is where I feel he can start helping himself, or at least we can begin to help him better. The staff has also noticed that though he has wild mood swings, it is easier to bring him back to calm and peaceful place more quickly than before. So progress there!
The spiffy birthday socks Vanessa sent from the UK. Love them.
Once we got back, we settled vernon on the PEMF mat for a half hour and still had enough time to take him outside for painting. Though he was agitated on our walk, I’d say this is the calmest he had been of the past few times he’d painted. I don’t know what he was thinking about when he made this, but this is what came out:
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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