Tanja power

Today is a wonderful day to have behind us.

The highlights are two.

The refrigerator arrived and was installed without a hitch. We are still coming to grips with the magic of having these small cold compartments right there in our kitchen, one even colder than the other. It will change the way we store food.

Second, after some discussion and advanced mathematics the Collar Countdown Clock has been readjusted and now stands at 35. It’s unclear where the error was introduced in our earlier calculations. It’s possible we didn’t account for the gravitational pull of the moon or the birth of Augustus or something. Anyway, by fiat, the new number is the right number.

Other than that, today was a challenging day, rainy and chill outside, inside filled with growing concern around all the physical difficulties that seem to be waxing when one wants them to wane.

“I just look at the person I used to be and I see her getting farther and farther away,” Tanja said.

That was a pretty strong image.

“I guess,” she said, after a while. “I’m getting closer and closer to the person I will be, but I just don’t see her yet.”

Another good image!

Earlier I’d told Tanja about how the two women working at Speilman’s yesterday had been talking about salmon. One woman maintained that salmon was considered the tastiest animal by the rest of the animal kingdom.

“It is?” the other woman said, in the voice of someone ready to believe.

“Think about it. Every animal wants to eat salmon.”

She then named a number of animals that fit that description but stopped short of naming every animal.

“That must be so tough on the salmon,” the second woman said, “knowing all anyone else wants to do is eat them.”

This makes these women sound less than serious, perhaps, but they were just two people working in an almost empty bagel shop passing the time. I thought Tanja would relate to that.

“That is not what salmon are thinking,” Tanja said.

“Well, of course not,” I said, positing that, for one thing, they don’t have language, that we know of anyway, and probably think in a totally different way than we do.

“They’re thinking,” Tanja explained, “‘Why do I have to go up this river? Does anyone get how hard it is to go up? It’s totally the wrong way to be going, but I gotta do it, so here I go.”

Tanja is incredibly good at this sort of projection. For example, I know a tremendous amount about the inner lives of our cats and the sorts of things they are likely to say to each other when we’re not around, each in their own particular voice, reflecting their own particular weltanschauung.

And not just the cats; we have stuffed animals who possess complex and nuanced inner lives that need to be considered and respected.

It’s not nuts. It’s storytelling. It’s really powerful. And when she conjures a negative image–a healthy, vibrant version of herself receding into the distance–that can be quite powerful too.

I personally don’t see that person receding. I see Tanja in this body that is damaged but fundamentally strong and getting stronger. And this Tanja I see is, essentially, a positive person. Tonight just before bed, she made an announcement out of the blue, as it were.

“Tomorrow,” she said, “I am going to reconnect with my grit.”

“What?”

She was sleepy and I wasn’t sure if grit was like RIO or STEMS or DVT or FASTHUGS or any of the other acronyms one picks up on the journey.

“My grit,” she said. “Gotta git with my grit.”

Then she was asleep.

For the last couple days, Tanja’s been looking for this particular song that has been in her head. She found it today and shared it with me. So I’ll share it with you:

Another good, busy day.

Physical therapy at 8:00. Tanja was tired going in, lamenting the early morning appointments, but coming out she looked energized.

“My legs are rubber,” she said. “And I’m supposed to meet a friend for a walk.”

“Maybe skip it today. She’ll understand.”

“I’ll go,” Tanja said. “But maybe I’ll do a half mile.”

Needless to say, she came back from the walk having busted out 2.5 miles. I always end up feeling like Burgess Meredith. “Whaddaya doin’ Rock, ya’ gotta stick to the plan.”

“Jeez, I dunno, Mick. I get goin’ and I feel pretty good, ya’ know?”

She did put her feet up for a bit after that. Then she had what they call a “wound check” at 3:00, which is just a follow up from the ER visit with her primary care physician.

He looked at her foot and noticed that it changed color the moment it was elevated, going from a slightly disturbing red to a nice foot-colored shade.

“It’s definitely related to the central chord syndrome,” he said. “No infection and not related to dvt.”

“The ER doc said it might be my foot healing,” Tanja said.

He made a face that can only be described as politely noncommittal.

“I can’t really speak to that,” he said. “But, well.”

Tanja feels like every single one of her symptoms could be dealt with in isolation. The foot is no big deal. The shoulder pain is puzzling and constant but not severe. The eerie chill in her arms is disturbing but not painful per se. The collar is, how did she put it, constraining, strangulating, diminishing, humiliating but also totally temporary ( CC is at 37!). But all of them together form a powerful tag team that causes her focus to fly from crisis to crisis, never coming to grips with one before answering the call of the next. It is particularly dispiriting for her as she gets tired.

Then bedtime rolls around and she begins to kind of gather her forces for the morrow. She’s doing something she’s never had to do before, it isn’t easy, and no one can do it except her. One can tell her she’s doing great–and one really believes that–but what does one actually know about it?

This morning, when Tanja was at her PT, I went over to Speilman Bagels to pass the time and get a little work done. Speilman’s is the most bare bones shop imaginable: a concrete floor, a counter behind which two young women assemble the requested bagels, a radio playing the hits, coffee from a carafe that has a piece of masking tape on it that says “coffee,” and a half dozen tables with chairs pushed up into the windows in front.

I took my coffee and sat down at one of the tables with my laptop. Two tables down from me was the only other customer, a man of my age approximately, also on his laptop. He had the clip-on badge that marked him as a hospital visitor, taking refuge here for the coffee and wifi. He smiled at me and I nodded back at him.

Because the place was so empty, one of the women brought my bagel right to me rather than shouting at me to come get it, like they usually do. After that I was lost in a sensory bath of cream cheese and top-level marketing.

At some point, I became aware that the radio had been cranked up and they were now singing along, the two employees, with I-don’t-give-a-shit abandon. The song was big and dramatic, soaring up and down. It was kind of wonderful–moving, even– to hear them sing and I looked over at my counterpart to share this moment and, maybe, sort of say, “Ah, youth.”

He was looking out the window, tears streaming down his face. And as I watched him, a sob came up from inside him and he held his head in his hands for a second. Then he sat up and continued typing, making no attempt to wipe the tears from his face.

We look at people all day long, make assumptions based on what we see and form judgments from there. That’s normal. What else can you do? My dad was a veritable Sherlock Holmes at this.

“See that guy,” he’d say, thrusting his chin toward a table on the other side of the restaurant. “I think that’s a divorced dad, and he’s out with his daughter. Probably taking her up to school after spring break. Maybe Simmons. Or Emmerson. Probably Simmons. This restaurant is a stretch for him and she’s not loving it, but she’s going along.”

My sense is he was mostly right on.

But at the same time, you never really know someone else’s journey. Not that guy across from me at Spielman’s. Not even the person in bed next to you.

So cut ’em all the slack you have, I say:)

Anyway, yes, here’s the song–the lyrics version because the official video might distract from the visceral lift of the music. Enjoy:

There have been zero trips to the emergency room today. The foot situation has largely stabilized. Tanja went so far as to say this: “When that PA told me the swelling and warmth was just my nerves healing, I think she was full of crap.”

“What makes you say that?”

“I think she was just telling me what I want to hear.”

“She did first employ all sorts of science to rule out DVTs and infection. Then she suggested it was just your body healing.”

“She doesn’t know,” Tanja said.

It was super tempting to say “neither do you,” but conversations aren’t things you always have to win.

Then the dishwasher people threw her a curveball. They were supposed to take delivery of the machine tomorrow at which point they had, contractually, a week to set up an appointment with us. In total disregard of this written agreement, they texted this morning to say they already had the thing and could they come by and put it in. We were doing dishes in it by 8:30 am.

“That was incredible,” Tanja said. “they were like a surgical team.”

In fact, the team leader gave us a little debrief before he left.

“We’ve run a cycle to check the installation. There are no leaks,” he assured us. “But you need to use it as much as you can over the next 24 hours to make sure the unit is running properly. There’s nothing I see that suggests an issue, but the first 24 hours are crucial in terms of identifying any possible factory defect or other issue.”

“We dont have that many dishes,” I said.

“Just do what you can,” he told me.

Tanja had a second appointment with her acupuncturist, then took a short walk with a friend and came home around one with two needles lodged in her head.

“The acupuncturist has a theory about my foot, why its so hot. Wanna hear it?”

“Of course.”

“She thinks it’s my nerves healing.”

“Huh.”

“So, I guess I owe the PA an apology,” Tanja said. “I still think it’s wishful thinking, but maybe it’s not total crap.”

What’s wrong with wishful thinking, after all?

We went to the store, ran some errands, she even came out into the garden during a break in the weather and answered a few pressing questions about what is and isn’t a weed.

It was almost normal. But the garden was, in a way, too much. It makes her aware of all she can’t do. Yet.

At dinner she said, “Have I mentioned how much I hate this collar.”

“What is it about the collar you hate?” Wren asked.

“I hate how it feels.”

“How does it feel? Can you describe it?”

“Uncomfortable. Constricting. Strangulating. Humiliating.”

“Great description,” Wren said. “I get it.”

38 more days, if my count is correct.

The Collar Countdown has plunged to an all-time low of 39.

As mentioned previously, Tanja had questions for the Physical Therapist with whom she met this morning at 8:00. One of those questions, the first one actually, led to the PT walking Tanja across the street to the emergency room where, after a few tests and a few hours, it was determined that everything was actually fine and the swelling in her right foot was not a sign of thrombosis or infection but probably just a side effect of the healing process.

It was, on the one hand, just another example of the precarious position she finds herself in these days, where it seems like every system and reaction is suspect. On the other hand, there was a measure of encouragement: the medical professional who took control of the situation, noticed Tanja’s C-collar, asked to be brought up to speed on that whole situation and, having heard her history in full was visibly gobsmacked and flabbergasted by the walking, talking, gesticulating woman in front of her.

“You are doing amazingly well,” she said, “and my goal is to make sure you continue that way.”

So she ordered an ultrasound, though she suspected it would be clear. And she tested for infection, though she suspected there was none. And she was right in both cases. But she sent Tanja away with antibiotics just to make sure there were no demons lurking in the background.

So the big news tonight is that there is no bad news.

To be honest, my poetry crates are not deep, dominated by Frost, with a tiny bit of Larkin, Jarrell and Collins, plus one great poem by Wordsworth that is nearly memorized. But here’s a poem I’ve always loved, by Mr. Frost:

The Bearer Of Evil Tidings

The bearer of evil tidings,  
When he was halfway there,  
Remembered that evil tidings  
Were a dangerous thing to bear.  

So when he came to the parting  
Where one road led to the throne  
And one went off to the mountains  
And into the wild unknown,  

He took the one to the mountains.  
He ran through the Vale of Cashmere,  
He ran through the rhododendrons  
Till he came to the land of Pamir.  

And there in a precipice valley  
A girl of his age he met  
Took him home to her bower,  
Or he might be running yet.  

She taught him her tribe's religion:  
How ages and ages since  
A princess en route to China  
To marry a Persian prince  

Had been found with child; and her army  
Had come to a troubled halt.  
And though a god was the father  
And nobody else at fault,  

It had seemed discreet to remain there  
And neither go on nor back.  
So they stayed and declared a village  
There in the land of the Yak.  

And the child that came of the princess  
Established a royal line,  
And his mandates were given heed to  
Because he was born divine.  

And that was why there were people  
On one Himalayan shelf;  
And the bearer of evil tidings  
Decided to stay there himself.  

At least he had this in common  
With the race he chose to adopt:  
They had both of them had their reasons  
For stopping where they had stopped.  

As for evil tidings,  
Belshazzar's overthrow,  
Why hurry to tell Belshazzar  
What soon enough he would know?

“It was almost a normal Sunday,” said Tanja at close of day. That is high praise from someone who truly values a good ol’ normal Sunday.

We are feeling really fond of our friends and family, near and far. We have been so lifted up and cared for and it seems, over and over, that just as spirits flag or energy fails, there will be a text, or a letter, or a visit, or a meal that sets us up again. Thanks don’t really cover it. But thanks:)

We have an 8am PT appointment tomorrow and a list of questions for that unsuspecting therapist.

And I remembered why Tanja brought up Jill Bolte Taylor back in those first days. She said, out of nowhere, “We should write a book about my recovery, like that lady Jill Bolte Taylor did.“

“Okay.”

“What’d she call it? It had a funny name.”

“My Stroke of Insight.”

“That’s right. We can call ours ‘Some Nerve.’”

“Sounds like a plan.”

“With my ideas and your typing skills,” she said, “we’ll be unstoppable.”

That sort of talk from someone who couldn’t lift her hands from the bed seemed almost like hubris. But Tanja was fearless out of the gate. It’s only been recently that the bravado has faltered, as if she can finally consider all the things that might have been.

Tonight there erupted from the side yard this terrible yowling mixed with an unidentifiable keening noise that rose and quavered and made my heart stop. I happened to be in the chicken coop and burst out expecting to see a cat in the dripping jaws of a yellow eyed coyote. The yard was black but something shot off to my right and hit the back fence before passing into the neighbor’s yard.

Tanja was at the window.

“Did you hear that?” She said.

“I did.”

I searched around the yard, found nothing, came in and counted the cats. Two of three.

We kind of expect bad things to happen these days. It feels so possible for anything to go wrong. It’s not logical. But I bet we’ll feel that way for a while.

The cat, however, when he sauntered in after twenty long minutes, seemed to share none of our fatalism, and was embarrassed by our expressions of joy.

It’s 39 on the Collar Countdown.

Sorry bout the ads: https://youtu.be/sRhTeaa_B98

The asparagus has erupted, here and there, like mild acne.

Of course, nobody really grows asparagus at home. Not really. It’s more of an indicator, really. It indicates how hard it is to grow asparagus. It also points to the inevitability of spring—this is really happening! And it serves, with its bold aspirations, here and there across the three square yards it’s been allotted, as a kind of rebuke. The highest spear, the lowest spear, all the spears in between, couldn’t make a meal between them, try as they might.

So what are you doing with your life?

I can’t say, “here’s the thing Tanja did today that she couldn’t do yesterday.” The progress isn’t like that. C’mon. You know that!

But she did a lot today. Laundromat, Goodwill, Laundramat, Fred Meyer, laundramat, new Seasons, home. By noon!

I know, right?

She’s working so hard. Napping hard too. She’s doing great! it just takes time. She’s bringing the various systems online, one after another.

Today, for example, some subroutine that had been dormant for weeks kicked in and I learned how to tell the upside of the sheet from the Dow facing side.

These things make the future look bright.

I’ve never met a person who claimed to not like this song. I imagine you’ve never met the same kind of people:)

https://youtu.be/LazbKZi8nFQ

It’s Flashback Friday, a weekly event where Tanja feels the past sneaking up on her. She said it’s as if the events of the evening of March 3 were somehow able to send out tendrils that grasp at her and threaten to pull her back.

“It’s like it wants to get me,” she explained.

“Hasn’t it already gotten you?”

“It wants to do it again and I can’t let it.”

I sometimes think of that night and how desperate it was, and it helps me get back the gratitude I started to feel when she opened her eyes and continue to feel as she gets better and better.

And that’s a reminder of the difference between being concerned with it and being right fully in the center of it. It comes back on her like a nightmare. There’s no logic to it.

This is all part of the work she knew she’d have to do. But today she described how in a TV show, when someone goes through rehab, there’s the scene where they try and fail. And the PT says something really challenging. But the patient can’t or won’t respond. Too weak. Then there follows the scene where the patient tries again. And they just barely do it. Then the next time you see them, it’s all good.

“But really, you’re just in it all the time. And you don’t doubt yourself once. You do it over and over. Or I do. And you tell yourself the pep talk over and over.”

She walked 2.5 miles this morning. She made more Lego flowers. She opened the mail.

“But it’s so hard. And so tiring. I don’t think Lego should be hard.”

Personally, I’ve always found Lego to be a challenge, but I take her point. I’ve got this new thing I picked up somewhere—from Carolyn Hax, I suspect. When somebody is presenting an issue, you say, right off the bat, or as soon as you can without being odd, “Do you want to be heard, helped or hugged?”

It keeps you from wading in with unwanted advice or short circuiting a much needed venting.

So far, in my short experience, people are not looking for one’s spur of the moment problem solving, no matter how wonderfully apt it may be.

Usually they want to be heard. And then hugged. And that helps.

But you never know, so you have to ask:)

Anyway, today was a hug day.

In the afternoon, the clouds melted away and Tanja went out on the porch and lay in a pool of sun where she dozed like a cat. It was lovely to see.

And tonight, as a counterweight to flashback Friday, she instituted the Collar Countdown. I think the magic number—the answer to the ultimate problem—is 41. Not a giant number at all.

Here’s a song I heard on the radio today. The DJ said it was an incantation meant to conjure more sun. It’s worth a try.

https://youtu.be/2SFt7JHwJeg

Well, Tanja doesn’t need to wear the neck brace for another two weeks!

Today we met with Tanja’s surgeon. And he indicated that the brace was hers for another six weeks.

I thought Tanja took it well. Nary a ripple of emotion. Still the surgeon may have sensed something for he followed his announcement with a short speech.

“I look at yout x-rays and I can almost tell myself I see bone fusion but at six weeks you really can’t see it yet. That’s why I insist, I fact, that it stay on six more weeks.”

The use of “I insist, in fact,” was, I think, incredibly helpful to both Tanja and me. It wasn’t like being at Les Schwab with a flat, thinking you might cajole your way to a better outcome.

This was the mage telling us how the spell works.

He was a young man who came dressed for the wrong movie—cream colored cashmere turtleneck under a close-fitting houndstooth wool suit that simply dripped. It was as if he’d taken the confidence that comes from understanding the very fundamentals of the system that makes us who we are, possessing the knowledge and skill to repair broken humans who just want to be whole again, and then he spent that social currency on permission to wear this suit. In portland. Where there are like 300 people who will appreciate it.

But at 4 am on March 4th, this young guy cut open my wife’s throat and reached into the back of her neck and fixed her spine. To me, that’s a lot of homework done , a lot of parties skipped, a lot of promises kept and, if medicine is anything like the rest of business, a lot of shit shoveled and pride swallowed. So thank you.

He gave Tanja an A+. He told her her current progress was exemplary and her current trajectory was its own best indicator that continued progress could be anticipated. He talked philosophic with her about expectations and how, realistically, we know they are not limitless. That’s how we knew he was talking about expectations for her not him.

But…at 4 am in March 4th he took a blade and cut into my wife’s neck with the ambitious plan of pushing her windpipe to one side, sticking a titanium brace between two bones and, in time, restoring her ability to move her limbs, feed and dress herself, wave, hug and ultimately live a normal life.

“At some point” he said, “you may notice that some sensation just, you know, is what it is.”

So might we all.

As today has been a long day, why not end with a song that has nothing to do with anything?

https://youtu.be/_0s7qVLDiB4

Today was a good, big day for Tanja, kicking off with just over 2 miles at the track as a warm up to her trip downtown for OT.

The OT therapist is a favorite of Tanja’s because of her energy and her positivity. Today she began with some massage of Tanja’s beleaguered shoulders, then some tricep strengthening and other deviously challenging exercises which, though difficult, were all performed while lying down so that Tanja emerged at the hour’s end looking energized and wondering about lunch–always a good sign.

In the afternoon, she worked on her leggo flowers, which are coming along nicely and are great for her dexterity.

Then she did some handwriting in a little notebook she produced from her endless supply of little notebooks. I was unable to procure a photo of her penmanship but I did get a glimpse of it over her shoulder and it was surprisingly moving to see; her neat little rounded hand has returned.

But, as lovely as today has been, the thing we’re all really thinking about is the six-week follow-up visit tomorrow with the neuro team at OHSU. Tanja has lots of questions for them but the big one is, when can the collar come off? It would be hard to overstate how uncomfortable she finds that thing. And it is relentless–apart from a couple minutes every two days when we change out the pads and wash her neck, it is always there. She can’t look to the side. She can’t look down. She can’t really look up. Eating is a particular chore. Sleeping is made more difficult (though her deep fatigue easily overcomes the discomfort.) And it itches. And one is not fond of the look.

The hope is that they will take it off her tomorrow. The fear is that they will say two more weeks. I believe the latter will be met with tremendous disappointment.

Today we bought a new fridge. They had one they could deliver today. But the one we wanted was a solid week out. Another week of a cooler on the porch?

“I think,” Tanja said, “it’s worth the wait to get the extra capacity. It’s not that long in the big picture.”

“Totally agree,” I said.

“What?”

“What ‘what’? I agree.”

“You think it’s silly.”

“On the contrary,” I insisted. “I totally agree it’s smart to stick it out, despite the inconvenience, in order to get the outcome we really want.”

“Ok,” she said. “Fine. I’ll do it. But I won’t like it.”

Because of something Tanja said in the early days, combined with this odd epiphany I had a week ago when I was weaving through that odd corner of South East on my way to Woodcrafters, we’ve been thinking a bit about Jill Bolte Taylor, the neurobiologist whose stroke and recovery changed the way she thought about the brain, the body and the universe.

Her TED talk made the rounds, back in the day, and it was provocative enough that her book had to be read–it’s an amazing story of a terrible event and a marvelous, difficult, unlikely recovery. But one thing in particular stood out.

Dr. Taylor said that, as the hemorrhage took the leftern most part of her brain off line, the simple fact that we are all connected to everything became a reality she could experience in the moment.

It wasn’t that she discovered the connection. She seemed to be saying that she, as a scientist, like all her scientist buddies, simply accepted that connection as a fact. Like gravity. Subject to review, should other data arise, but settled for the time being. It was her sudden ability to experience the connection that was so, uhm, mind-blowing.

“Our right brain doesn’t see the artificial division of individual bodies that the left brain places on us. We’re actually all energy. Our bodies are just energy compacted into a dense form.

We are all this enormousness that gets squeezed inside these tiny little bodies and we think this little, tiny body is what we are. But it’s really just the tool we use to do stuff in this physical world.

The left parietal region of the brain, in what’s called the orientation association area, holds a holographic image of your body so that you know where you begin and where you end. When those cells went offline after the stroke, I no longer had that perspective. I felt as big as the universe! My body was attached to me, but I didn’t experience it as my essence. Instead, I was the collective whole, connected to everyone and everything—I was completely fluid.”

That’s cool. She went on to say:

“True science has to accept all that is. It can’t say, “Those mysterious things we don’t understand don’t exist.” That’s bad science, denying something instead of exploring it.”

So today, because I was quite busy making the future secure for recently retired tennis players, Tanja had to get herself downtown for her first acupuncture appointment. It was a total success in that Tanja was examined, her situation discussed in detail, she was made extremely comfortable and then many, many needles were applied to her body and she was left to repose in a warm room where she promptly fell asleep.

Who knows what dreams she had, what spirit was unleashed within her, by all that careful needling, all those tiny barbs and daggers?

She awoke refreshed and was sent home with just two needles left, doing their work, with instructions to remove them at bedtime. I was called into service for this job–there were written instructions that indicated that one should pull the needle in the direction it is pointing.

“Really in the opposite direction from where it’s pointing,” I said.

“Yes,” Tanja said, in a tone that suggested it was not as amusing to her as it was to others.

I have to say, the needle was in quite a bit further than I had expected. Approximately five times further, I would say. Nor did it come out painlessly.

“Ow,” said Tanja.

“I pulled in the proper direction, I swear.”

The second one was les surprising and less painful.

More sessions are to follow. Once a skeptic, I am encouraged by the attitude of Dr. Taylor, by the belief I share with her that there are things we don’t understand, and by the fact that insurance covers the visits–for all my lack of faith in that industry, they do seem to be expert at finding reasons to deny treatments, so their acceptance is practically scientific proof of efficacy.

Results will not be immediate, of course. That said, Tanja has gone to bed in brighter spirits than we have seen in days. Coincidence is not causality, but surely it’s right next door to it:)