Gratitude 31/40

I resist the urge to check my email, check my phone, but I’m failing. In the last 24 hours I did two tests whose results should get me closer to a diagnosis, and very soon the results will land in my inbox. I don’t like this grasping feeling I have. And yet, here it is. I really, really, really want to know.

In a class Marc and I teach on social change, we underscore the importance of developing a capacity to dwell in uncertainty. When this health thing started to unravel, I lit a candle and placed next to it a ceramic bowl that my partner made. I wanted to enter this passage prayerfully. I placed things in the bowl that I might need along the journey, like the picture of a saint. And I surrendered things that might not serve me, like this grasping-way-of-needing-to-know-to-feel-okay.

But being intentional about accepting uncertainty is not enough for me. In this moment my body bristles with frustration only a test result will soothe. I want to, no, I need to know. When the email flashes in, I call my colleague Marc over and we open it. It’s not helpful. In short it says that this was the wrong CT scan to test for thymoma. And the blood test never shows up in my online portal.

In that moment I lose my composure. If I were a toddler, I’d head straight for the floor and fling my arms and legs around. I don’t. I stand and speak through my tears, “I just want the tests to tell me I have MG and then say, ‘take this medicine’ so that I can have my old life back.”

When things feel so out of control, many people seek certainty merchants—strong figures that offer a simple story and clear solution (thanks Sonia Blignaut). In this moment I too seek the comfort of certainty and it is a moment-to-moment practice to shift my attention toward what is still stable right here, right now.

I go for that second blood test, the one I hope would give me some certainty. On the way back I bump into a neighbor and we talk about the desire for certitude.

“Diagnoses are good,” she says. “I love them. It’s like feeling shitty thinking I’m bi-polar but then I realize it’s just PMS.”

We laugh. Ah, this thing of knowing and not-knowing, this thing of being human.

Gratitude 30/40

An old television playing 1950’s Christmas carols welcomes me to the CT scan waiting area. The door to the scan room is wide and the steel door jamb looks like it belonged to a bank safe. The yellow “Caution Radiation” sign has me feel a bit uneasy.

When the door swings open, a platinum blonde woman waves me in. She wears dark blue scrubs with penguins dressed in winter attire, skiing all over her body. On her headband are four oval-shaped light bulbs glowing red, blue, green and yellow. If her attire isn’t enough to disarm me, her language is. She says a sincere, “Welcome honey.”

I can tell I feel more relaxed (or is it relieved) than my previous CT scan because this time I notice that the tree in the sky-blue ceiling tiles is the same as my neighbor Ed’s tree. The picture was taken in early spring after the leaves unfurled and before the blossoms wilt.

This time I go feet first into the donut-shaped machine. Once the scan starts, the blonde woman’s voice reaches me through speakers. “Lie perfectly still and don’t swallow,” she says. And goodness knows, in that moment a tiny bird lays a warm hard-boiled egg at back of my throat, pressing onto my vocal cords. All I want to do is to swallow it away. So I wiggle my toes. I hold the urge in loving care. I think of kittens. But nothing works. In a quiet machine moment, I succumb and swallow.

When she helps me up after the scan, I say, “I’m sorry, but I swallowed.”

“You did good sweetheart,” she says. “Don’t worry about it.”

When the heavy door closes behind me, a grey-haired gentleman stands under the TV fiddling in with his faded hospital gown. Our eyes meet and he says, “These are so hard to close.”

“Would you be okay if I close this for you?” I ask. He nods and turns around. His back is bare and his skin, sprinkled with sunspots and freckles, feels strangely close. I take the cotton laces between my fingers and turn them into bows.

There is a tenderness we can experience in vulnerable moments and I feel lucky to be in its flow.

Gratitude 29/40

The day after the MRI I meet with a neurologist who suspects I have Myasthenia Gravis – a chronic autoimmune neuromuscular disorder. She subscribes a slew of tests to get us closer to a diagnosis: two blood tests, a swallow study, another CT scan and a breathing study.

It has been more than a week and I still do not have an appointment for the swallow and breathing study.

“Why?” asks a friend. “Just pick up the phone and make the appointment.”

I shake my head. “I wish it was that easy. The day after the neurologist visit felt like an old arthritic dog and did nothing. The day after that I did make those appointments. I made them for next year, because I’m trying to be wise with my money. But then, after making the appointments, I started to, or imagined that I were, experience the same tardiness of my mouth in my hands. I dropped a jar full of pickles, I had a hard time peeling an apple and typing felt forced. Then I panicked, thinking that my symptoms might be getting worse and that it’s irresponsible to wait. So I cancelled the appointments for 2023 and shifted them to 2022.

And then I called the estimation line to find out what my co-pay would be. Two hours later they called back; the two tests will cost as much as a new bike. And so I thought, “It’s only a week later and it’s really going to help me financially if I move it out.” So then I called to move it out to 2023, but the breathing office was closed. And the swallow study could only schedule me in the afternoon and I’m not sure I’m up to having nothing to eat or drink for fifteen hours.

And so here I am still—no appointments.

“I see. It’s not a task, it’s a spider reaching into many tender places,” Says the friend.

But today another friend did help me schedule the tests. I feel grateful for help with things that seem so simple, that I believe I should do by myself, but that I am not quite able to get done in this moment.

Gratitude 28/40

The MRI was much less scary than I thought. For one, I imagined it to be dark around me, but the inside of the MRI feels less like you’re in a coffin, more like you’re in a light box. I was also much calmer than I imagined I’d be. There is a lot to do while lying motionless.

During that time, a question came to me. “If I had a choice, would I choose to have some type of illness or be healthy?” Without missing a beat, I knew I would like to go back to being healthy in the way I was before.

Whatever I have, is most likely an auto-immune disorder. From what I understand this means that I have a genetic predisposition that has been activated by my lifestyle. I come from a mostly healthy family, and I’ve really tried to live a healthy life. I didn’t see this coming.

At first I found myself racing up and down the hallway of my past choices, trying to find a way in which I clearly messed up, a way in which I deserve this. Others have helped me find a reason too – believing the COVID vaccine is the cause and sending me COVID detox regimens. Or sharing with me that the Lord revealed to them that this is an attack of the devil.

There is a strange logic that seeks something to blame, as if fighting that is a better use of energy than sitting with the unsettling knowledge that my world, our world, is changed. I don’t want this change, I don’t want this thing I have no name for yet. And yet it has chosen me. And it has, most likely, chosen to be with me for the rest of my life.

With the limited choice that I have, I would like to choose this back. To say, “Welcome, this is weird, but maybe we can figure out a way to co-exist. Maybe we can partner up and aspire to thriving lives and vital worlds.”

. . . . . .

Image: An picture I took at one of the the art houses on Troy Hill. Please comment if you know more about the artist/artwork!

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.

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.

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.”