Before anything else, I must say a big THANK YOU to all those who sent words of encouragement this weekend. I haven’t been able to sit down and write back to everyone, but I want you to know I appreciate it so much. I feel good, lifted, and loved. Thank you from the bottom of my heart for joining me in the journey with your words and thoughts and prayers. So much love. I feel it, and it makes a difference.
We didn’t really make any big plans for the weekend, except to have a small celebratory gathering with Vernon at the Care Home tomorrow…and I only even thought of that idea a day or two ago. Last year, the kids and I went away, this year, we are sticking around. I’d like to think it has something to do with where we are mentally as a unit.
Last night, we painted. We hadn’t done that together for months, so it was high time anyway. Maki even seemed up for hanging around for it. Jen came to keep us company. I didn’t get a picture of her painting before she left, but here are ours:
An Ocean by Justine.
Think More by Maki
Untitled by Maki
For Mom by Justine
Practicing her signature. (Inspired by Maki, I’m sure.) She calls it: Justine Justine Justine.
This one’s just called Justine.
Still in my organization mode, I’ve been painting some storage boxes (justifying creativity before I’ve finished tidying.)
Based on tiles at my favorite cafe from our trip to Istanbul.
I think it was good to get some stuff out of our system. Makes space for something new….
“Art washes away from the soul the dust of everyday life.”—Pablo Picasso
“Rough winds do shake the darling buds of May”—William Shakespeare
The long month of May is rapidly moving toward the 23rd, the date that two years ago, our lives moved into a totally different sphere. It’s also Friday tomorrow…THE Friday. We used to count Fridays to know how long Vernon had been in the hospital.
I remember the night of the accident, when the neurosurgeon told my dad and me that if he held on through the first phases, he could be there as long as two months before starting recovery. He ended up in the hospital longer than that…and recovery is still haphazard, at best. But when I heard that, I thought: “NO WAY! Not this guy. There’s no way we can handle that length of time.” I get goosebumps thinking how different a human I was then, before we found we COULD tolerate a long time waiting for him to get better. But I also remember the other thing the doctor told me: “Let’s see if we can get him through the night first.” I don’t remember how many surgeries he had that night, but they weren’t done for ten hours.
“Ten hours?” I scoff at my old self. “What’s ten hours?” A lot to my pre-brain injury self, apparently. Because I remember how impossibly long that sounded at the time. Nothing is impossible.
Then, seven months later, the kids and I moved to the actual street where the accident occurred. It just happened that way…we didn’t mean to. Fridays were even more significant as we crossed Vernon’s ground zero on the way to school. I thought it was a poetic move, forcing us to face our trauma every day. I still feel that way. But after a while, the Fridays became muddled, and we couldn’t remember how many weeks it had been…we started counting months.
And now after this weekend, we can count in years. Like it is with growing babies, only the youngest are counted in weeks…then months, then halves and years. Eventually we just stop counting and move to half decades to celebrate any significance…then only the decades themselves. But I can’t look that far ahead yet. We are still in mere years…and lucky to get this far.
If we get to three years, I’ll no doubt look back at this as early days. But my psyche can’t ignore it. May has been a significant month all year. It’s like a big birthday you know is coming many months before. It just hangs there, looming, waiting for its turn to arrive, with all its good and its bad. It’s like April with taxes. I’m happy to say we have lots of good things packed into our Mays now, things to look forward to, happy moments are always strewn through our lives together—we make a point of making them or at least noticing them. BUT that doesn’t make it a non-stressful time.
The closer we get to the 23rd (or tomorrow, the Friday) I find myself increasingly stressed out, intensely feeling emotions and even physical movements, thinking too much, tightly bound like a little brussel sprout. This darling bud of May is a bitter root vegetable, not to everyone’s taste, not even my own. Here we are, in the prime of the year—days away from our date—and I find my body does have a clock. Or my soul or mind or pysche, whatever…it all seems to be connected to this time. These things can’t ignore the season, the passing of days. Concentric circling to this one weekend.
Feeling all this increasingly, I put out a post on Facebook this morning: “Really struggling to go toward this weekend. It’s been a long and significant month, May. Monday is the 23rd, which will mark two years since Vernon ‘left’ us. I am having a difficult time with moments of anxiety and loneliness, they are getting worse by the day. Can’t wait till the 24th, maybe I’ll feel less crazy.”
I didn’t write that to get response but rather to give the pressure words so I could let it go. And yet, I got the most wonderful response from friends. Prayer and self-care were the main messages back to me. I take those things to heart. And there must have been increased love and prayers coming my way because I certainly feel differently now than I did this morning—or even the weeks leading up to this. I feel peaceful and positive, and it didn’t take long to turn things around.
One gift we got today was that Chris Adams, Vernon’s good buddy, and Sarah, his business partner (and a family friend of ours), offered to drive up with me today. My appointment with my attorney had bottomed out again, making me feel abandoned by the legal system meant to protect us (not for the first time.) Chris offered to drive my car, which made the day immediately better: its a treat to be the passenger. Vernon had already exercised for the day so we were free to take him outside and just hang out for a bit. I couldn’t tell how much Vernon recognized his old friend from memory, but his eyes lit up. “Oh YEAH,” he said as he shook Chris’ hand. “I think I remember you. I know I LIKE you. You are cool.” I just love how Vernon’s soul is on the surface at times. He knows. He gets it. He recognizes what is real even if he doesn’t have the words or the context or the details to help him.
As soon as we pulled him up to an outside table and the other two had sat down around him, he started with: “Okay, guys…” as if to say, now we are here, what are we going to talk about?” I’d never seen him respond so mindfully and clearly. I told him it was nice to have company. “Well, sometimes,” he said. “It’s nice having THIS company.”
Look at him, looking like one of the cool kids. You’d never know something was wrong. I think today for him maybe it did feel like nothing was wrong for a bit…though he did admit to his friends that he never gets to eat (how terribly annoying.) When he’s had a good day, I’ve had a good day. I think we both needed that!
One more sleep till Friday! Four till the 23rd. We’re getting there—more gracefully than I ever thought we could.
Last night, a friend in the UK sent me a link to the new Louis Theroux documentary on BBC2. She’d seen it as it aired a couple hours earlier. I managed to find a version online that I could stream from the UK. But I also found a version to share here with you. It’s on youtube, so the link might be taken down if it gains popularity. Here is a good review and also a link to the Brain Injury Rehabilitation Trust (BIRT) in the UK, which features in the film.
I’ll watch pretty much anything that Louis Theroux puts out, if I have access to it or hear about it, that is. I’ve been a big fan ever since moving to the UK ten years ago. Vernon and I used to watch a lot of interesting television together…when something interesting was on, that is. It helped me understand British culture better, watching these kinds of shows with him…especially since Vernon was right there with me, explaining all the nuances I never would have understood otherwise, not really. Anyway, Louis Theroux used to make all these outrageous shows where he would interview cultural outliers with his gentle but straightforward style of questioning. He managed to have a disarming approach, slightly awkward, annoyingly smart. Both Vernon probably admired him for different reasons, but we both enjoyed watching him engage with the oddballs— people in society we never would have known anything personal about otherwise. Totally fascinating stuff.
Anyway, here is the film. I hope you can take the time to watch it. I think its really important work. Heartbreaking stuff, even for a toughie like me to watch….but so well-told and engaging.
https://www.youtube.com/watch?v=sgOVxcIjpiA
Now, obviously as I’ve said before, every brain injury is different, so those of us who struggle with it have to plod along alone. I know more about this than the doctors I speak to, but I don’t have a guide map either. It’s just machete-ing ahead indefinitely. And that’s what the people in this film are doing …I can relate with that. I was impressed (and slightly jealous) by the system set up by the BIRT and the Disabilities Trust. Vernon has so many other disabilities, I know, but just looking at the brain injury at the moment, there was a lot to relate with in the people interviewed. What impressed me most was Louis’ sensitivity in conversation. He sets a very good example of how to be around people with these kinds of disabilities. Just like the people in the film, Vernon responds best when he is treated eye-to eye, as an equal intellectual, who can communicate from the heart on the important things if not with an understanding of the details. He responds best when he is included. (I think we can all relate to that too.)
“Uniquely, among physical impairments, brain injury affects our deepest sense of who we are…In my time immersed in it, I’d met people caught between old and new selves, working to get their lives back, but with a changed sense of who they now were. The challenge they were engaged in was nothing less than to re-create themselves, with new limitations but also great possibility.”
We went to Mesa Verde earlier today to see Vernon. He had been given something for his pain so he was groggy in bed when we arrived, but the sight of Maki got him going, so we took him outside, where the Logies met us a little later.
“You’re my favorite,” Vernon announced to his son, despite his semi-stupor. “You know that, right?” Maki smiled and nodded. It’s always been true, not that he loves Justine or me any less than possible. They were just always close from early days, and I’m glad he still can feel and express that toward his son.
When the Logies did arrive, we were pleased as punch to see Hudson with them. He’s been out of the hospital for a month or so now, but he’d been in there for a full month or more with his collapsed lung. One thing that had helped him with his breathing therapy was the melodica, a little breath-powered keyboard, which they happened to bring along today.
Here is Vernon trying it out:
Here is Hudson, back to his old self. Welcome back, kiddo! We’re so glad you are well and enjoying the land of the living again!
I meant to add this picture to last night’s post. It’s a copy of CT scan results on Vernon’s head a week after the accident.
I recently rediscovered this paper, which is still around from June 2014 because I kept moving it to the top of various to-research piles. A nurse had underlined things that she thought would be most helpful to my understanding. I brought it to Vernon the other day, thinking we could google some of the big words together. We didn’t get far with that, but after I read it to him (butchering the Latin, I’m sure), Vernon put it all perfectly into one statement:
Something about ending last night with the reintroduced possibility of Ativan must have triggered a nagging thought in my head all day. I realized that though the mere mention of the drug causes me to react in a beady sweat, the doctor might have been responding to a complaint earlier in the week. It doesn’t mean there is a problem right now, even though I receive a phone call about it. There are a lot of delays within healthcare, all the little steps of paperwork and its changing hands. I’m so glad I didn’t agree to it, though I felt the pressure on the phone. (The nurse did not pressure me, in fact she assured me that I didn’t have to agree with the doctor, but I felt the pressure of the nurses who have to deal with him when he acts up.)
What was nagging at me was the deeper realization of a major truth that has been the problem all along, but never gets dealt with: Vernon is in a skilled nursing home, which is excellent with supporting his functional needs, but no one there, not even the doctor, is expected to know a thing about brain injury recovery. To their credit, even the neurosurgeons I’ve met don’t seem to know much about it. But this is NOT a recovery home. Or a rehab hospital. This is a skilled nursing facility, where basically, he is kept alive and semi-comfortable—and to be completely honest, the whole setup really in place to help the family more than the patient. I’m just a couple of medical pages and some signatures away from being a full-time, live-in caregiver.
You must understand: I’m not complaining. I think Mesa Verde is a very good care home, and I have no current desire to move him and take our chances elsewhere. But last night, when the nurse told me she’d ordered a psych evaluation for Vernon, I just rolled my eyes. I believe Vernon is in there (and in some ways, he’s showing his deeper self more than ever) but I think he’s being treated as a ‘typical’ long-term patient of such a place would be treated when certain issues come up. I think in this case, a ‘typical’ patient would be an elderly person with dementia and fall-risk (ie: the threat of physical breakdown.)
Vernon is a ‘fall risk’…it says so on his armband. We go to dialysis five times a week with him because of his risk of falling. He rests in a geri-chair lounger or (most of the time) in bed because he can’t be risked in a wheel chair When a patient in a nursing home falls, he has to be sent to the hospital to make sure that nothing is broken. A big to-do is made: the fire department shows up, papers are signed, family members are called, bills are sent out, and everyone becomes even more protective over the patient. This makes a lot of sense when someone is elderly, their bodies already broken down with time and likely to deteriorate more rapidly. Though I think the process has aged Vernon’s body, I don’t think a fall is going to kill him or really even set him back much. And yet this is where the big energy goes in a place like this.
My point is this: though this is our best option under our circumstances, is not where a young person with Vernon’s serious brain injury belongs. We are on what is known as medi-medi, in health billing circles. Normally, except for the corner of renal failure (kidney breakdown) this is reserved for Americans 65 years of age or older.
I don’t have any real reason for sharing all this except to get it off my chest. I have no idea how many people read this blog regularly, but I guess I’m ‘putting it out there’ that someone might have a suggestion of a specialist (that I could ask the doctor to recommend) or anything really? I just feel like there is a Square One reality that we keep ignoring. This may be the best that we can do. I’ve been told that it is. But what if there is more? There MUST be more. Connected people, can you help? Praying people, can you?
All that said, Sandra, Vernon’s regular RNA who has been working him out on Tuesdays and Wednesdays for fifteen minutes in the gym, already seems to be brightened by Vernon’s improvements. Remember yesterday’s straighter leg?
Though Vernon wasn’t at his best today, I’ve seen worse. Here are the highlights:
I brought Vernon a present: new shoes! If anyone deserves them, right? The other day, at dialysis, he pointed out the feet of a(n elderly) patient a few chairs down the row. “I’d like shoes like that!” he said. “I used to have some like that.” He was right. Whatever Vernon asks for (that I can possibly deliver) he’ll surely get.
He wasn’t in much the mood to paint. But he still hashed a couple out. That’s discipline.
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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