Closer to diagnosis

16 December 2022

Good morning dear people,
How are you all today as this year comes to a close?

I had a good meeting with the neurologist yesterday and they suspect I have Myasthenia Gravis, a chronic autoimmune neuromuscular disorder. I am helped by knowing there is a possible diagnoses. Next steps are a slew of tests, scans and muscle studies to confirm and gain more insight.

After the call with the neurologist, Marc said it sounds like a Harry Potter spell and immediately made this picture:

Which made me laugh. I need to laugh now, I feel exhausted by this week and when I think future, I feel many other things. I woke up wishing I didn’t have to move and fearful that I’ll over do it and hurt my back/get ill again. And then I saw all your names on the list and received your messages and now I feel more hopeful. Thank you — and for those of you that has a cold / flue / covid — sending so many healing energy to you!

x Hanna


A turtle in a pond

Gratitude 27

A turtle in a pond

Gratitude for what we don't have

Gratitude 27/40

My goodness but the health system here can be so speedy quick! The result of the MRI arrives in my inbox before I get home from the scan, thirty minutes away. I don’t look, because right now I distrust my meaning making capacities. But then I get a call from the doctor’s office– and the scan is normal. So I feel so relieved! And I feel intrigued.

I wrote this in the summer. It feels relevant today.

J. takes a minute before responding to me asking him how he’s doing. He puts the pruning scissor down, lean on his knee to straighten up, places both hands on his hips and arcs his back. The august air is thick with humidity.

Then J. says, “I guess I am okay.” The sound of “okay” has a long and weary tail, ending like a question.

A. responds in a similar tone. “I’ve had better days.”

“What about Hanna?” J. asks as I snip the cerise chard stem. I still cannot believe how pink it is.

“Well,” I say looking up, “for the first time in my life – at least that I now of – I am the host of 52 parasites.”

“What?”asks J. “How?”

“We went to lake Erie on Sunday and swam for hours. But we weren’t alone in the waters. There were sneaky parasites looking to make their home in ducks. But because we are hot bodied too, they mistook us and burrowed into our skins. So now I have all these hungry parasites hanging out under my skin, making me itch much so much that I wake up in the middle of the night longing to I scratch my body on the bedside like a cat. There is nothing I can do but wait for them to discover that we are incompatible and die.”

“Ha,” says A. “Are the parasites transferable once they are in your body?”

“No,” I reply.

“Mine is,” she says.

“Your what?” asks J. with a bit more animation in this voice.

“I too have a parasite.” A. brings her left leg forward and there, halfway between her ankle and knee is a ring almost as bright as the chard stems.

“I have ring worm.”

“Seriously? How did you get it?” J. asks.

“You get it through skin contact or by sitting in dirt. I think it’s through the dirt, because no one else I touch has it.”

“How long will it last?” I ask.

“A month or so,” she replies.

J. straightens up again, his right hand filled with four tomatoes. “Well,” he says, “I guess I’m doing really great then!”
We laugh.

In this moment, I am grateful for all the nasty things I do not have.


Health challenges, and a move

15 December 2022

Hello dearly beloved Pittsburgh people. I hope you are doing well today.

I’m in an interesting time with my health.

I’ve been having trouble speaking — making words and using my voice and having enough air for it. I’ve had multiple tests: CT scan, bloodwork and yesterday and MRI which all looks normal. This is a relief and a mystery. Today I’m meeting with a neurologist to see what next steps could be. This is new for me — and it has consumed a lot of my attention.

I don’t feel very together.

Oh my dear damn — at this moment I feel proud of myself if I remember to eat AND put the food away. Smile. So I am not inviting you into a very organized moment of my existence.

I’m moving this weekend.

Yes! I am moving up! I’m moving from my current four room apartment to the one above mine. So it’s an easy move up one flight of stairs. And yet… there are things to build and many things to move.

Could you please help me move?

*If* you have capacity and energy, please lend me a hand this week-end. I’ve made a spreadsheet where you can see the times I’ve marked up and the two types of requests — one to bring us food (or drinks) and another for your time. I’m practicing healthy dependance (thanks for that framing Michelle King!) which means that I trust you not to give if you can’t. And I will love you all the more if you come and if you don’t come. You know it!

Help me make it a moving party by arriving with joy and silliness if it’s accessible for you. Bring a hat, bring music, be with me in the joy of living and moving and all the muck that comes with it!

Love you people.

Note

This did indeed turn into a three-day moving party, involving more than a dozen people in different ways. Lovely, and thank you by the heaping heap-full to everyone.


Narrow path through fantastic rocks

Gratitude 26

Narrow path through fantastic rocks

Gratitude and aversion

Gratitude 26/40

Standing under the gym’s blow drier, my head bowed while my hands move over my skull, I imagine that somewhere in here something is happening to my brain, but I have no way of touching, seeing, solving it.

Today I get an MRI. The first one in my life! And I feel both a rush of gratitude and aversion.

Gratitude because… I live in this time when these smart machines exist. I don’t live in the sticks, but in a medical town where I could to get an appointment two days after I called. Unlike a lot of people and unlike my past self at different points, I have medical insurance and I have a robust enough safety net and network to know these costs won’t bankrupt me. I have access to a car and I don’t have to get up at four in the morning to line up at a gas station, hoping to get gas. I can get care — there isn’t a war or pandemic raging around me. Pittsburgh’s electricity supply is stable. I’m relatively healthy. I don’t suffer from other complications, I don’t have four kids dependent on me. So so so so so much gratitude and with it the wish for this to be accessible to everyone.

And then, aversion. I mean, if this was a choose-your-own-adventure, the other options need to be pretty dire for me to choose an MRI. Really. Imagine being pushed into a coffin-like scanner that whirls around you like a loud laundromat while you need to keep perfectly still. And then, after 20 minutes or so, they’ll pull you out, decant a liter of dye into you and do the whole thing again.

My friend smiles when I tell him about the MRI. “Ha!” he says, “You will have so much practice going to your happy place.”

Which is true. All those times waking up with mid-night anxiety has given me a lot of tools to hold my fear and aversion in tenderness, to breathe me into a less stressed state, to imagine things that bring me joy and be silly – how many fart jokes can I remember?

So, I’m starting my day with a warm coat woven from gratitude and a feeling of nausea and a knowing that I am damn lucky to be here now.


Rain falling in distance from storm clouds over the plain

Gratitude 25

Rain falling in distance from storm clouds over the plain

Gratitude for possibility

Gratitude 25/40

On Friday I cried in the doctor’s office. It was not a polite cry where you dab a tear drop from the corner of your eye. It was more raw, like my lungs were desperately gobbling up air and my vocal cords were too stress to open resulting in a series extended moans. I wasn’t in control, and I felt embarrassed by it and gave the Ear Nose and Throat specialist a thumbs up while wailing.

I’ve been having issues with my voice and speech for more than a month. I’ve gone for scans and tests, all the while hoping it’s not serious. But in moments before my wail, he told me this was neurological. And from the little desk research I’ve done (thanks Ti), it is not good news.

The ENT doctor with his curly grey hair and grey eyes looks at me with tenderness. His face mask is shaped like a duck bill which makes this moment more endearing.

“Do you have people that care about you in Pittsburgh?” He asks knowing I’m an immigrant.

“I do.” I say.

“Good! While I would like to be your care person, I can’t. But you will need your people now.”

Not only do I need my people, I also need those who can echo-locate me in this darkness. As I drive down the spiraling tar of the parking garage, I leave a voice note for a friend who has MS. MS is one of the many, many possible fists behind this punch.

Her response is soothing. “I know in my own experience how scary this can feel. I am sorry that you are here. You know, I can’t say that I feel hopeful for many things, but I do believe in possibility. I believe in the possibility that whatever comes can be worked with and I want to be there with you.”


Top of pine tree against blue sky

Gratitude 24

Top of pine tree against blue sky

...for all the hands that have helped me.

Gratitude 24/40

(written in November)

“I’m fine, mamma” I say as tears flow over my chin and collect on my woolen turtleneck.

My mom takes a breath on the other side of the phone, on the other side of the world. “Sometimes we need to be honest, Hanna. You are not fine. Ask a friend to drive you to the hospital.”

I would rather be receiving a call asking for help than making it. Stubbornness shoots through my bones, trying to keep me upright and able through the pain. My back has been in spasm for a week and, unrelatedly, my speech is starting to slur. The doctor suspects neurological damage and asked me to go for a scan.

I fear that my world will be changed by what I learn. I feel uncertain if I can make the co-payments. I bristle with the irritation of time spilt in fluorescent flavored waiting rooms. I feel the lull of avoidance, the turning away in hope that time heals.

It takes three friends and my mother to soften this willful independence. Soon my friend stops his car at the hospital, and I slowly swing my legs out. Soon I sign waivers and receive a wrist band identifying me as myself. Soon I cringe as I straighten my legs on the scanner bed. Soon I close my eyes as not to see the CT scanner hover over me. I think “I should pay attention and take this in.” But I don’t. I keep still, eyes shut, hands on my abdomen feeling my body breathe.

When I come out of the scan, I notice that some of the beige ceiling tiles are replaced by a backlit scene of a blue sky and green tree branches. Outside the Pittsburgh sky is a scoured pot bottom and the tree branches are bare. The nurse jokes that she wishes the weather outside was this good. I laugh with her.

That same day a patch of blue sky appears inside me as I receive the news that my scan is clear – whatever is causing my speech to slur didn’t show on the CT and it seems not be neurological damage. And the world view I cling to that requires me to be able-bodied and fiercely independent is softening as well. I’m learning to accept my changing health, my needing help. I feel a blue-sky full of gratitude for all the hands that have helped me in these two weeks of unrelenting pain and tests.


Tales of Kenji Miyazawa, Part 2

How about more stories?

Three more from Once and Forever: The Tales of Kenji Miyazawa, translated by John Bester.

To listen, click the “play” arrow at the bottom of the player below. The gray bars above the time code indicate different sections and stories. Click them to jump to any position in the audio. 

Contents

00:00 – Introduction
01:36 – The Red Blanket
18:43 – The Police Chief
28:47 – Gorsch the Cellist


There's a movie! Gauche the Cellist

You may know Studio Ghibli, the famous Japanese animation company founded by Hayao Miyazaki and Isao Takahata. A few years before founding the studio, Takahata made a one-hour version of Miyazawa’s tale—much loved in Japan, rarely seen in the US.

I found a place to stream it!

Ohmagosh. It’s gorgeous. It’s painterly. It cares about music and character and story.


Music credits

Opening theme

Suki Kasih, by In This World

Red Blanket theme

Dojo Tradition, by In This World

Police Chief theme

Shrine, by In This World

Gorsch the Cellist theme

The Merry Master of a Coach, From the Studio Ghibli film, Gauche the Cellist

Outro

Siwa Oasis, by In This World


Poems by Gregory Orr

Maybe I could read you some poems?

Here are selections from Concerning the book that is the body of the beloved, by Gregory Orr.

To listen, click the “play” arrow at the bottom of the players below. Hold the cursor to see a series of short gray bars, one for each poem. Click them to jump to any position in the audio.


Part one, selections from pages 16 to 43

13 minutes 21 seconds


Part Two, selections from pages 47 to 83

11 minutes 26 seconds


Part Three, selections from pages 94 to 130

9 minutes 18 seconds


Part Four, selections from pages 133 to 195

12 minutes 34 seconds


Music credits

Opening and ending theme

Photos of our lives, by Kit Keenlyside

Section 2 theme

102F, by Dario Benedetti

Section 3 theme

Tramp’s Dance, by Dario Benedetti

Section4 theme

Night Jam, by Federico Ferrandina


Tales of Kenji Miyazawa, Part 1

Maybe I could read you some stories?

Here are three from Once and Forever: The Tales of Kenji Miyazawa, translated by John Bester.

To listen, click the “play” arrow at the bottom of the player below. The gray bars above the time code indicate different sections and stories. Click them to jump to any position in the audio. 

Contents

00:00 – Introducing the tales of Kenji Miyazawa
01:43 – The first deer dance
19:59 – Wildcat and the acorns
39:34 – The bears of Nametoko


Music credits

Opening theme

Suki Kasih, by In This World

Wildcat’s theme

Siwa Oasis, by In This World

Bears theme

Music recorded at a performance of Noh theater