Tanja power

It has been a very long and challenging day for Tanja.

The highlight was probably going into town for an hour OT session–only her first outpatient session since the outpatient intake assessment, if those three words mean anything strung together like that.

Tanja really likes and enjoys the OT person. Her energy and attitude clearly lift Tanja and she came out of OT much lighter than she went in. It’s been 10 days since the assessment, so the therapist was able to see real change in Tanja’s movement, in range and in quality.

That is great for Tanja to hear because, obviously, she has trouble seeing that progress, as you might have trouble noticing your hair grow longer. But it’s happening. She is working hard at finding the balance between wanting to do more–which comes naturally to her–and needing to rest, which feels like failure no matter how often she reminds herself that rest is medicine.

A little impatience seems motivating. But it’s not like the injury responds to impatience. So that leads to frustration. Frustration is fatigue’s angry little brother–it throws a fit and fatigue comes running. And fatigue feels like failure. That is sort of the dynamic swirling in Tanja’s brain today, if I could guess.

From the outside, of course, she seems focused, she seems healthy, she is less tentative in her movements every day and her progress is really strong.

She’s not satisfied, of course.

She’s in there, like a captain alone on the bridge of her ship–one eye on the engine room, monitoring temperature, pressure, fuel levels, trying to find homeostasis, meanwhile charting a course, anticipating obstacles, trying to outrun the storm and see what this baby can do, without breaking down entirely.

As she was falling asleep tonight she said, “If you do write a blog tonight, just tell them I made it through a long hard day and I’m ready to do it again tomorrow.”

Much love to everyone tonight 🙂

Tonight we had a delightful and delicious dinner at the site of Tanja’s great fall just five weeks ago.

She evinced some anxiety about the return, but as this was also the site of literally countless childhood memories, as well as perhaps the crowning achievement of my adult life (we were married here by the authority of my brother-in-law who was, coincidentally, born on this day, in the foggy past)— in short, it was important and inevitable that she reclaim this spot, which, to my mind, she accomplished categorically by, with nary a prompt, reclining herself on the very spot where she’d landed on that now distant evening.

It is probably the one point on this journey I remember better than she. And I began to coach her on how she ought to lay. But it felt exceedingly morbid. This wasn’t a reenactment, not at all about where she’d been but about where she is now.

Look how high those hands are reaching!

Later in the evening she sat at her mother’s piano and played a few bars of something, first on the right hand, then on the left…I’m sorry, what’s that? Oh, I think it was by Bach, the German composer. Nice piece.

Now, to be transparent, tonight is also a night of strange sensations and phantom pains. There’s the sense that one is not the same as one’s body. There is frustration, which is just fear turned into something more active.

Five weeks ago, you were a baby. Now look at you! You are battling for more and more and more. And that is, to my mind, exactly right. Let other people breathe a sigh of relief and say “at least this” or “at least that.” I am right there with them, here in my body that works exactly as I expect it to, for better or worse.

But you! You need more. You need progress.

I came downstairs today just in time to hear a plaintive sound from behind the bathroom door.

“What’s going on?”

“I fell.”

“You fell! Are you alright?”

“It wasn’t much. I was already on the floor.”

“Why were you on the floor?”

“I was cleaning the toilet.”

There followed a strange moment of something like fury. Why am I, glorious, wonderful Jed Alger, of the Osterville Algers, doing all this stuff if you’re just going to die cleaning the toilet first time I turn my back?

Then I remembered something I read in an advice column. It was about a guy who didn’t cancel a family vacation when his wife was diagnosed with cancer and her chemo coincided with the trip. The columnist said that, mostly, “People do what they want to do,” and that tells you who they are.

Tanja, in my experience, does sweet things. Kind things. Loving things. And she also cleans the toilet so that when Wren’s friends arrive for D&D the bathroom will be on point, because that’s what 15 year-old boys are focused on.

And, you know what? If that’s what she needs, so be it. I have learned to trust her even when I don’t understand.

Happy Easter, all:)

https://youtu.be/F_FM4s14JDg

Last night Wren wanted us to watch Gattaca. He’d seen it in class, liked it and wanted to share it. That sort of thing always feels great, especially when the movie is good:)

It was made in 98, I think. Not so long ago. Just a generation or so. These actors who were so beautiful then are still beautiful today. Nothing has changed.

Except—spoiler alert—Jude Law’s character calls it because his legs don’t work. It’s foolish to let that define you. We’ve got people whose entire brains don’t work and they do fine.

So if, on a Saturday, you don’t crack any major milestones, that’s ok. Think about that baby learning to walk. She doesn’t count the days. She just keeps moving forward.

Tonight, as we neared bed, I asked Tanja, “what’s on your mind?”

“Nothing,” she replied.

“There is nothing on your mind?” I said skeptically.

“There is one thing on my mind, Jed,” she said patiently. “All the time. I just don’t want to say it constantly. “

Tomorrow is Easter, a good day for renewal!

Today, Tanja went to the track and walked a full three-mile set, just like the old days, though not at the bruising pace she used to achieve. But give her time.

Then she napped like a champ. Got up and got into the fridge—which attentive readers will recall has ceased to live up to its name and is now just a box where food rots.

That was epic. But did she stop there? No she did not! She tackled all the dishes that our broken dishwasher refused to handle.

It was Tanja versus the machines all afternoon, with Tanja emerging victorious over and over.

We celebrated with a delicious dinner delivered by a kind and talented friend. And then a movie.

It was, all told, a lovely day. What the kids call “chill,” or so I am told.

So chill, in fact, that I was just shutting off the light when Tanja said, “I think it’s great you’re taking a break from the blog.”

OMG. How could I forget?

Tanja and I were eating lunch at a now defunct restaurant in the Pearl. Early days. My nervousness may have transferred to the waiter because this young man filled Tanja’s wine glass to the brim, as if he were pouring a beer. Across the room, the maitre d’ lost control of his eyebrows, swooped in and handled the situation, telling us with a smile, “this is Mark’s first day” and then gently instructed Mark on the proper pour. He took the brimming glass behind the bar and decanted into two glasses which Mark brought out, sheepishly, adorably, letting us know the overflow was on the house. Somehow it made us feel very much at home in this odd little spot and it may also speak to why the place is no longer in business.

But that wasn’t what I wanted to tell you about that lunch.

We shared an appetizer of shrimp in garlic and oil, which, when it arrived, was just as simple as it sounded. I took a bite and found it absolutely delicious–perfectly cooked, beautifully seasoned in a way that I’d struggled to achieve in the home kitchen.

“I wish I could make shrimp well,” I lamented.

“That’s a sweet thought,” Tanja said, forking a prawn. “But the best vet in the world couldn’t make these shrimp well. It’s just too late.”

The point is, clearly, that living things are complicated things, with all these various systems working in concert to maintain this condition we call life. Most of the time, as these shrimp had no doubt done, we take it for granted. And thank god for that. Spend a few moments pondering the work your heart does–that it is doing right now–beat after beat after beat–and you quickly realize all this pondering is not helping at all and some processes, no matter how crucial, are best left to march to their own drummer.

And what about the less automatic stuff? For example, you merely think to move your hand and, lo, it moves. How does that work? What even is a thought? Where did that thought come from? Oh, we say it’s chemicals. Electricity. Nerves “speaking” to muscles. As if that explains it. It is crazy.

When we, at my job, were doing some branding for a cardiac center, the chief surgeon said, one day, out of nowhere, “You know how they say, ‘well, it’s not brain surgery’ where ‘brain surgery’ is the paradigm of complex, demanding work? But right now, with what we know about the brain, brain surgery isn’t, you know, rocket science. They don’t really know how to do much beyond cutting things out. It’s still relatively primitive.”

There may be some professional jealousy there, but the point is simple enough. There remain mysteries.

So, today Tanja had PT at 8 am, which is early for her these days. It was hard work but she said by the time she was done they were inventing new things for her to do just to make it challenging. She came home and napped. She woke up alone in the house for the first time in a month or more and she set to work. Did the laundry. Brought the bins back in from the curb. Cleaned and organize the bar area which had fallen into disarray as if the very bottles had taken up drinking. She made herself lunch. She finished catching up on the bills.

Kind of a normal day.

But her fingers are still cold which feels like death to her. And her toes have begun to feel cold.

“I think that’s a good sign,” I say. “The feeling is coming back and that’s what you’re noticing.”

“That’s possible,” she says. But she is unconvinced.

So am I. Nobody knows what is happening. Not really.

But we do know two things.

1. Tanja feels like a visitor in her own body and every day is full of strange and disconcerting sensations.
2. She is getting better every day in ways that feel small but which continue to surprise and delight the experts.

It’s all about patience and work, right now. Please stand by 🙂

To Earthward
--Robert Frost

Love at the lips was touch
As sweet as I could bear;
And once that seemed too much;
I lived on air

That crossed me from sweet things,
The flow of—was it musk
From hidden grapevine springs
Downhill at dusk?

I had the swirl and ache
From sprays of honeysuckle
That when they're gathered shake
Dew on the knuckle.

I craved strong sweets, but those
Seemed strong when I was young;
The petal of the rose
It was that stung.

Now no joy but lacks salt,
That is not dashed with pain
And weariness and fault;
I crave the stain

Of tears, the aftermark
Of almost too much love,
The sweet of bitter bark
And burning clove.

When stiff and sore and scarred
I take away my hand
From leaning on it hard
In grass and sand,

The hurt is not enough:
I long for weight and strength
To feel the earth as rough
To all my length. 

Today I happened to look out the upstairs window and I saw Tanja moving the bins out to the curb for trash day tomorrow. Then, moments later, I came downstairs and she was at the dining room table balancing the checkbook. It felt as if there were two of her working away at keeping the ship on course. In normal times, of course, it feels like there are three of her, sometimes, disturbingly, four, but this is a step in the right direction.

Tanja had a post-operative appointment with her general practitioner–well, with a general practitioner. Tanja’s doc, and mine, the indomitable Dr. Johnson, up and left to pursue other projects and we had not settled on a new doc before the accident, so Legacy just paired us with someone.

This someone turned out to be a man of maybe 50 years with an immediately appealing demeanor. He sat down opposite Tanja and kind of peered at her curiously and kindly.

“Do you know how many cord syndrome patients I have seen besides you,” he said.

“Not many?” Tanja guessed.

“One,” he replied. “When I was on my neuro rotation in, uhm, ’89. You’re doing quite a bit better than he was, I have to say. But my point is, I’m not going to add a lot of expertise.”

But they chatted a bit and talked about healing and fatigue and spirits and the potential of emotions that are pushed to off to come rushing back in. The whole conversation was so warm and human and Tanja had such a smile on her face.

So energy was high today and, not coincidentally, so were spirits. The whole family is feeling it–well, except for one normally stalwart member, who apparently grew tired of toiling 24/7 with never so much as a thank you. Yes, the refrigerator has gone on strike, joining the dishwasher on the disabled list. And, while one can was dishes by hand, I do not know that any amount of effort on my part is going to keep the milk cold. So this one hurts.

But the loss is just another opportunity to find gratitude in all we have. Like friends who bring us fresh and delicious food every evening. It is soooo appreciated.

Back in early March when Tanja was freshly installed in room 17 of the ICU, they would periodically shoo me out while they performed sterile procedures or other maneuvers they felt would not benefit from my assistance. Not knowing what to do with myself–those were foggy days–I’d find my way down to the cafe on 3 where I would get a cup of coffee from the giant urns they had there. I was a Yukon Gold man from day one–bold and strong.

On my first visit I got in line behind a man in blue scrubs, also buying a coffee. I was so full of appreciation for health care providers of all sorts that I was quite close to simply embracing him, but he had a kind of intense, tetchy energy that helped me keep my cool. He paid his $1.75 and was gone from my life.

I then approached the cashier who, it occurred to me, was also a part of this amazing, life-giving organization–I thought instantly of the custodian at NASA who, when asked by JFK what it was he did there, replied, “Well sir, I’m helping to put a man on the moon.”

This woman, with her big warm eyes and her white cardigan, was helping to put my wife back on her feet and back into our lives. So, sure, maybe my eyes were a little brimful as I extended my debit card toward her.

She smiled and, with a little movement of her head, waved me through.

“Really?” I said.

She gave me a little nod. It was no big deal.

But I’ll tell you, it lifted me up. Just a free coffee, but my heart soared.

At that time, Tanja was in the process of remaking room 17 into an oasis of positivity–I don’t know how she managed to do it but it felt absolutely right. And, it might seem strange, but I kind of needed the cafe as a place where I didn’t have to be positive, where I could be a little scared for just a minute. And every time I came down, that cashier saw me and my coffee and waved me through. It got to the point where I would just lift the cup and make eye contact. She’d laugh, I’d laugh. I felt so understood.

Then one night I came down and it was some dude. Skinny, old, weary looking. My lady was nowhere to be seen. So I walked up and hauled out the debit card.

“It’s on the house,” he said in a pleasant, lazy way.

“Really?”

“You’re over 60 aintcha?” he said, looking me up and down.

“Oh,” I said. “Yeah.”

“Well, reap the bounty.”

In other words, sometimes you take what you can get. Today was not a day of breakthroughs. No soaring highs. No crushing lows. Just rest and a gathering of resources.

Not to worry. Tomorrow, we reap the bounty.

Today Tanja walked 2 1/2 miles!

In the before times, she was in the habit of meeting her friend at the track and walking for a little exercise and camaraderie. So today they met again, in the spirit of renewal, and they set off with no stated goal. Ten laps later Tanja decided she’d done enough. They used to go for twelve laps, so this was an excellent first showing. Now, it is possible that, back in the day, Tanja would get to the track early so she could run a mile as a warm up. And she might bust out another run in the afternoon. But this blog is focused on progress and a 2.5 mile walk counts as great, tangible progress.

Tanja also made the bed today. I hasten to add that I have really been trying to make the bed on the regular because I know how much she prefers getting into a nicely made bed. And I have come to accept that my whole “why spend time neatening a thing that you are, by definition, just going to rumple again” attitude is simply laziness masquerading as logic and would, if taken as an operating principle, lead to the downfall of everything we hold dear in modern civilization. So, yes, I’ve been making the bed on the regular, as I said, but these days the bed gets so much use and at such varied times that it can be hard to keep up. So when I came up tonight and discovered it all pulled together, instead of feeling like I’d dropped the ball, I got a feeling, hard to describe, but sort of like, well, everything’s gonna be alright.

So we go to bed tonight as upbeat as we’ve been all week. I was going to share a poem that has been stuck in my head for a while, but all of a sudden I’m thinking about a song I first heard blasting out of a open dorm window on a warm fall day in ’79. At the time I understood it–erroneously, comically, predictably–to be a paean to the bachelor life. It took me another 40 years to realize that it is–exactly opposite–all about being strong together.

We are in the grind.

That’s not all bad. It’s just the way it is.

In so many endeavors, there is an exciting, high-energy period as you launch into whatever it is, much fanfare and folderol… but if you’ve set your sights on a worthy, distant goal, something you can’t quite see from where you are, that initial momentum cannot carry you far enough: you enter into a period where it all comes down to effort and belief. The image that arrives is of a boat at sea and in the boat there is a rower at the oars, back to the goal, pulling stroke after stroke with no proof that the effort is enough. But if you believe, you keep pulling.

And often you find that, in fact, the effort isn’t enough. The goal is further than you thought. Or it is, upon arrival, not what you imagined, not what you wanted, not what you needed.

So you invent a new story, set a new goal and keep on keeping on.

Our friend Autumn Calabrese has a saying for this situation. Of course she does. It is, “Tired of starting over? Stop giving up.”

That bit of motivation has come to mind every day as I watch Tanja. Because it doesn’t quite fit. She kinda can’t give up. Every day is an inescapable workout that leaves her exhausted over and over again. All the little things she wants and tries to do are ingeniously designed to test her and tire her. It’s all minutiae–she takes the compost out, then naps. She chats with a visitor, then naps. She does her PT and then naps.

The progress is not discernible over the course of a day or two days. And, absent just staying in bed, there is really no way to quit.

But one nice thing about rowing is that you can see where you’ve been. I think it feels good for Tanja to see how far she is from those early days. Today she went into my office and found the bag with the clothes she’d been wearing when the ambulance came. She tried to put the shirt on a hanger but it just wasn’t working somehow and she realized it had been cut up one side. Same with the pants. Suddenly, you’re back in the tumult of that night, a body on a gurney, strangers slicing the clothes off you– the urgency and the uncertainty.

We have come so far! And we’re not done yet.

I noticed this on the calendar in the kitchen:

It’s both Tanja, after and before, side by side. It would make one sort of sad if it weren’t for the fact that we know she’ll get up tomorrow and start rowing again. Meanwhile there’s this small comfort: I’ve always admired Tanja’s penmanship and wished that my writing could be like hers. For this brief moment in time, it is.

Turn it up!

Years ago Tanja discovered this workout guru, a kind of tiny firecracker of positive energy and anodyne motivational platitudes named Autumn Calabrese. Autumn packaged her fitness advice in a series called “21 Day Fix” and later, “9 Week Control Freak,” and, if you needed more “80 Day Obsession,” followed by a reprise of 21 Day Fix called “21 Day Fix/Real Time” and then the low-impact “Four Weeks for Every Body” and, of course, for the completist fan, “Country Heat,” which sought to get you fit while teaching you line dance moves.

Some people in the family thought that Tanja’s interest in these videos was cute but kinda laughable. But as Autumn says, “Not everyone is going to support your journey. And that’s ok, because you’re not doing it for them, you’re doing it for you.”

One of the stunning things about Autumn is her optimism. “Give me 21 days and I’ll give you the body you always wanted.” The videos are essentially Autumn and a cast of extras going through simple exercises that typically last 60 seconds each because as she says, “You can do anything for 60 seconds.”

Of course, you quickly find out that actually there are many things you can’t do for 60 seconds. And you notice that at the end of 21 days, not a single person in her workout group has transformed their body in any visible way. To be fair, most of them started with the body they likely always wanted, but even Kat, the token “out of shape” person who demonstrates the modifications, does not change one iota over the 21 days.

And, neither do you. Not visibly. But you will likely notice that the exercises that crushed you in week one– mountain climbers maybe, or surrenders, or burpees–are magically kinda doable at the end of 21 days. Not easy. Not pleasant. But doable for something closer to 60 seconds.

Autumn has a phrase for this. “It doesn’t get easier. You get stronger.”

Sometimes annoying platitudes are very, very true.

This morning, as we were plotting the day, I sensed flagging spirits in Tanja. On cross-examination she revealed that she felt like she’d worked really hard on Thursday and was somehow nothing but tired on Friday and now, on Saturday, didn’t honestly feel like she’d progressed.

She has been so incredibly upbeat all along–and I have really relied on her spirit to inform my own–that this was hard to hear. But rather than share my thoughts (dismal, negative) with her, I suddenly heard Autumn’s voice in my head.

“Say you did Autumn’s Total Body Cardio workout yesterday,” I offered, “would you wake up today and say, ‘Hold on, how come I’m not ripped?’”

“No,” she said. “I would not.”

I could tell from the tone of her voice that this argument was a winner. I pursued it further.

“When you do Autumn, you look for little improvements over long periods of time. Why would this process happen faster?”

“It wouldn’t,” she said. “Just a little better today that I was yesterday.”

“That’s right!” I said. “You know that wound on the back of your head hasn’t even healed yet. Why would your spine heal any quicker?”

“That’s a really good point,” she said.

“It is?”

“Yes. I wouldn’t get on the scale every day and look for progress. I would have confidence in what I’m doing, I would keep after it, and let the gains come. This is no different.”

All this to say, a daily report on Tanja’s progress is going to be light on gigantic milestones. A big part of success is going to come from just keeping on. That’s mindset. And mindset, in my experience, is fed by confidently, repeatedly saying things you don’t currently believe but hope will one day be true.

We got this!