Mid-meds check-in

Table set for breakfast: coffee, yogurt and fruit, pills, medical instructions, and a candle

1 February 2023

Dear all,
It’s nice to know that you are on the other side of this note. Thank you for being here with me. It’s soothing to imagine your beautiful faces turned toward me.

I am doing well in this moment. Even though I’m nursing a cold with ginger tea, even though the possibility of dying keeps tugging at my pants, I feel fortified. For the last two weeks I was blessed with a pair of two-day getaways. First my girlfriends and I spent time perched over the Youghiogheny River. Then my partner and I hunkered down in a wood and stone cottage in a snowy forest. It is soothing to be in the forest and next to a river when my soul feels frayed. It is comforting to be in the company of beloveds when we feel afraid.

As you might know, I started the full doses of the Myasthenia Gravis meds last week Monday. I can report that I feel slightly better. The biggest improvement is in my mouth. My tongue feels less like steel, and I don’t get too fatigued by chewing. My hands feel better too. I’ve not dropped so many things! I imagine that I experience less fasciculations (involuntary muscle twitches), even though I feel them now as I write.) My ability to swallow liquids doesn’t seem to improve, but there is still a week left.

February 6 will be two weeks on the meds and I’ll correspond with my neurologist.
On February 16 I get an MRI to check if structural damage in my neck could be causing this.
March 20th I have an appointment with the ALS specialist in Pittsburgh.

The big thing that is not changing with time or meds is that my energy is zapped. I pant like I’ve run two miles when I’ve only mopped my bathroom floor. Last week I went back to work. The first day I went in for half a day and I was productively there! The second day I went in, I got there and needed to nap. Then I tried to work again but was too tired. I ended up working for just two hours. Some nights my sleep is a moth-eaten sweater. Others nights I sleep twelve hours. I am not keeping up with responding to your kind messages— sometimes I just feel too tired.

Having so much less energy and needing much more rest is a new set of realities to grapple with.

– First cognitively: I have such a drive to live and do and experience things while I have the gift of being able to!

– Then relationally: I can’t keep my promises as surely as I used to. I can’t be counted on for a 7pm grocery run, or to walk you to the bus at 6:40 in the morning.

– Then, practically. Here is my (starting) list of practical learning edges:

1. Generate income
I can’t work full days. I’m wondering about getting more consulting/coaching work that pays well by the hour. I’m wondering how our company “Fit” can be fine with me fading in this moment.

I really want to keep writing (I’m taking a creative writing course this Spring!) and doing things that bring me joy. I’m thinking about other artists who gather financial support from their community through a platform like Patreon. I wonder what might be possible here.

2. Build a web of care
It’ll be good for me to ask for help in a more organized way. I don’t know what that will look like, but I wish to do it in a way that strengthens the web of care in our community. I wish to do it in a way that helps us heal from isolation, from the curse of “do-it-all-yourself,” from the fear of being the one that needs help. I wish to learn about disability justice, about mutuality and sustainability in long-haul care work.

3. Receive help
Recently friends came over to help clean or cook. Their help was so helpful! I loved having them here! And yet I felt soooo tired when they left, because a) I want to visit and b) I don’t feel like I can say, “So glad you’re here, I’m out of spoons, please excuse me.” This too is a learning edge: feeling worthy of receiving help when I can’t reciprocate your kindness with my presence.

Okay. My ginger tea is cold. I’ve been writing for two hours. I think I need a nap! If any of what I wrote sparked ideas, hold onto them. I intend to reach out with more targeted requests in the near future.

Again, thank you for being here. It feels so good to have you close by.

Hanna


A beautifully decorated small cake on an ornate plate

Gratitude 35

A beautifully decorated small cake on an ornate plate

Gratitude for bringing the light

Dear one,
I posted this on Saturday, then moments later deleted it in fear that my honesty would be too much. You see, in this post I share some of my experience of possibly having a terminal illness. This is not everyday conversation. And I don’t know what you are contending with in in this moment. So please be in choice: decide if you want to read it, where you want to read it and when you want to read it. Take good care of your beautiful self.

35/40 Gratitude for bringing the light

There was no “happy” in my birthday this year. At least none that I could conjure. See, a couple of days before my birthday I received the news that I might have a terminal illness—ALS, a neuromuscular disease that, like a tarantula bite, paralyzes every muscle in your body.

My mind, a newbie at handling news like this, didn’t take it well. My mind didn’t say, “Okay, so there is that chance, but I choose to hang out in the ‘I don’t know yet’ and wait till we have a definite diagnosis.” Nope, instead the news grabbed me by both wrists, pulled me over its back and tossed me onto the floor. Then it kicked me down two flights of stairs and shoved me into a dark basement. A tiny yet endless basement where questions flutter like bats, asking “Where will you live when you are wheelchair bound?” “Is life worth living when you can’t bite into an apple, draw someone in for a hug and say, ‘I love you?’” “Want to die in Pittsburgh or Pretoria?”

The damp dark is not only filled with questions, but also sharp images that pierce my chest. “I want to crack the spine of O’s first book. I want to wake up in S’s remodeled bedroom. I want to be part of my niece’s wedding.” And this one on repeat, “I don’t want to die so soon. Please Lord, please let this cup pass me by, I have so much to live for.”

It felt like I was walking on quicksand covered with rice paper. And that basement, that basement waiting inches below. And anything—me seeing my fingers open a tube of toothpaste or touching a shirt my mom bought me—anything sent me down into that darkness. My birthday seemed pointless against the possibility of dying in two to five years, the average life expectancy after being diagnosed with ALS.

And also, I know that (who said this?) right now is called “the present,” because it is a gift. I yearn to be in it while I am here. Be in the joy of it. But the basement bars my access.

But you. You brought the song, singing to me while our eyes lock and we try not to cry. Leaving me a voice note song so beautiful we played it over and over again. You shuffled behind a locked door, then opened the sky as you drew me into a sparkling circle, as you sang and danced to Stevie Wonder’s “Happy Birthday.”

But you. You brought the light. You gave me a flickering golden glittery happy birthday sign and honey-colored candles. You lit the candles on the cake and watched me blow them out as I wished for enough time here. You built me a fire. And you showed up to the fire with bourbon, silliness and belly laughs despite the possible devastation.

But you. You celebrated me. You gave me gifts and made me cards showing that you see me, that you love me. You wrote me a poem and went around the table telling me why I matter. I can feel your care for me in your Amarula jelly, meerkat drawing, sunset painting, cardboard dice, family crafting book, face soap, gorgeous poem, gift of money.

But you. You fed me. Driving all that distance so we can eat at the Golden Pig. Ordering way too many dishes from Taste of India. Making your best homemade pizza. Getting me a gorgeous cake we savor for days.

But you. You brought the comfort. You came to my house to make hot chocolate and write a list of ways to get out of the basement. You came to my home to co-work, co-clean, pot plants or bake rusks so I could reach for your hand when I lose my footing. You held me in the many moments when I cried. You held me close at night when twitches flickered through my body and the basement felt so real. Your stillness there, your mercy, your love. Right there.

But you. You. With you even the darkest basement has light, even the saddest birthday shimmers.


Diagnosis still in process, and a challenging possibility

17 January 2023

Hello all,
This is Marc writing.

There has been some progress in the diagnostic process for Hanna, though we haven’t narrowed to a definite diagnosis. I’ll report on that in two steps—first the short summary, then news about a difficult new part of the story.

The short summary
Hanna had the EMG last Friday (see the 4 January update for a little about what that is), and a consult with a neuromuscular specialist about both the EMG and the results of a big battery of blood tests. The doctor said…

  • Hanna’s blood tests for Myasthenia Gravis are negative.
  • 90% of people who have Myasthenia Gravis (MG) show positive in the tests that Hanna took. There’s another 10% that present a false negative, so…
  • Hanna is going to take MG treatment pills, starting tomorrow and continuing through February 6. If she has MG, she will notice a dramatic improvement in her symptoms, probably returning to her full old self.
  • If she doesn’t have MG, she may still experience some improvement, but not to an “I’m my old self again” degree.
  • In that case, the doctor will proceed with next steps, including a repeat of the EMG in three months.

Now the difficult addition to the story.
All the stuff above about MG tests happened as I described. Then the doctor said, “I have a concern about what this might be. Would you like to hear it now, or wait three months until a repeat of the EMG confirms or disconfirms my concern?”

Hanna said, “I’d like to hear it now please.” And so we learned…

  • The doctor’s concern is that this could be ALS, which is difficult to diagnose—there are no specific indicators or tests. The doctor said that she found evidence of ALS during the EMG in two parts of Hanna’s body, but for it to count as a diagnosis it needs to be present in three.
  • In the continuing process of inquiry, the neurologist asked for an additional MRI test, “to rule out any structural etiology causing your arm weakness.” (Marc’s I’m-not-a-doctor interpretation: “Let’s make sure there’s no structural issue in your neck area that might be the cause of what we saw in the EMG.”)
  • So if the MG pills are not effective, the next step will include referral to her colleague and friend who is an ALS specialist. If it’s ALS, it is very early. Which is the good time to catch it. This doctor’s clinic participates in clinical trials, and it’s very likely that Hanna would qualify.

That’s tough news. ALS is a knee-weakening prospect. AND there is still uncertainty. And there are promising trials that could slow the condition’s progress, extend life and function, etc. If this is the battle one needs to fight, the medical resources in Pittsburgh make it a good place to be. There is community and support and love available connected with all of these possible outcomes. We’re all trying not to fall too far into The Worst Story, and hold the buoyant story of what’s possible and what’s present all around Hanna, around each of us.

Hugs to us all.


A black coffee spill on a wood counter

Gratitude 34

A black coffee spill on a wood counter

Gratitude for anger

Gratitude 34/40

[A note to the reader: angry women are often dismissed. “You’d look prettier if you smile,” is something I’ve heard many times. To feel and speak anger is often difficult for me, so in this post I’m writing in the third person.]

. . .

It starts when an unwanted ad appears. Just before she can mute it, the voice of a seemingly concerned man slips through. “That moment,” he says, “when you hear the news, and your life is changed forever….” Even though the sound is now off, the images have her full attention. She knows that moment. It happened to her a month ago.

The ad cuts to a concerned woman staring out of a beautiful bay window. Cut. Now we see the face of what looks like her husband sitting in the passenger seat of a car. He looks tired. His handsome son is behind the wheel. Cut. Pan out. We see their luxury home in a verdant garden, the gleaming SUV backing out of the driveway. Small print appears: something, something Myasthenia Gravis. Hanna sits up, this is one of the possible conditions she may have.

After the movie, her boyfriend can tell she wants to fight and suggests they talk the next day. In the morning she drives to the gym, hoping she can perspire this glowing ire out of herself. But when she comes home, the anger has congealed around her throat.

She feels vulnerable and sidelined. The ad, marketing the medicine she might need, clearly positions itself in the world of the wealthy. It’s not fair that only those with wealth can afford the care they need and maintain a lush life. A life where there is enough, so they don’t need to go into medical debt or give up needs like good quality produce, support for loved ones, or the security of retirement.

A second anger takes her back to childhood. It’s not fair that she was born into a world where there is a hierarchy of human value. Her white skin gave her far more access than kids of color her age, but her gender made her matter less. Both of those things are unfair. But today the salt under her skin is how that world groomed girls to be nice and mute—beautiful pushovers.

The third anger spans the decade of her marriage. A hierarchy of human value creates a societal agreement about how well (or poorly) we can treat each other. If she knew she was worthy of being treated well, she would have left him in the first months. If her community didn’t feel so powerless to interrupt harm, they would have intervened. It is not fair that women like her, the breadwinners, leave without a cent to seed a new life, leave only with a bag of scars.

The fourth anger smolders from all the stress and effort— the six visas— to stay in the US. All those flaming hoops she jumped through, all those stacks of paperwork and checks. All those nights not knowing. Will they send her back? The panic of being sent out of the country with twenty-four hour notice—an alien needing to prove worthy of being here.

The fifth anger burns with the difficulty of pursuing a career outside of the paths and support offered to mainstream careers. And that in a new country. Maybe she could have worked smarter, but the Lord knows she worked as hard as she could. It feels unfair that change work is often paid pittance and puts people in financially frail places. It feels unfair that care workers are often the first to burn out. Why do adjuncts get no benefits, receive no investment?

The sixth anger scorches the soft tissue of hope. Only last year she emerged from a sense of just surviving. Only last year did she take weekends off and sleep in. She started to dream again. She made a roadmap to retire at 75. She applied for artist grants, saved for a sabbatical at home, dreamt of supporting a larger network of folks. She sensed she could fly again and then, then this.

A friend has walked over and is holding her. “Life is not fair,” the friend says, and she knows it. Despite all this spilt milk, she is still profoundly privileged. She could have been the man with wind-weathered skin asking her for bread money this morning. This too is unfair.

It is not fair. Life is not fair. This is not fair. How much stress, how many injuries, how many years of not feeling safe can one sustain before one breaks? Maybe this is her body, her body breaking.

That night she attends a poetry reading. A poet* quotes Maya Angelou, “Let gratitude be the pillow on which you kneel.”

Today she kneels, forehead against the wall. She gives thanks that she can feel angry, for rage is part of grief. And grief, Ross Gay** says, grief metabolizes change.

. . .

* Naomi Shihab Nye
** Thanks Lizzie for the Ross Gay quote and your companionship


Closeup of colorful painting. A face appears among patches of color

Gratitude 33

Closeup of colorful painting. A face appears among patches of color

Gratitude for new "what if" questions

Gratitude 33/40

On the inside of my right arm are two tiny spots, as if a macaroni-sized snake bit me. The bites came from needles drawing blood. On either side my skin looks like sandpaper from bandages. This is the only physical sign I have that things might not be okay.

The rest of my symptoms hide from public view. If you know me, you can tell that I sound different, that I’ve lost my ability to make certain sounds like an Afrikaans RRRR or G. If you sing with me, you will hear I can no longer keep the tune. If I read bedtime stories with you, you can sense it strains me and that I stop reading much sooner than usual. If you work with me, you can tell that I have only a pinch of the energy I used to have. If you dine with me you will know that chewing can be difficult, that I choke more than before, that I’m sometimes too tired to talk, that I ask to be burped. If you walk with me, you can see that half a block can have me out of breath. If I didn’t tell you, you wouldn’t know that there are places in my mouth that my tongue can no longer reach, that I must help my left leg to get it into my jeans, that there are moments when my hands are too weak to open a zip-lock bag. And that at times, all of this scares me.

Today I went to get more bloodwork done. My muscular neurologist ordered ten different tests. When the kind person behind the counter tells me that the cost is $8,000 and my portion is $1,000, I fall speechless. Just yesterday I paid $650 in December bills. My friend with MS told me I should expect to pay the most in medical co-pays, but being told something doesn’t mean that you can handle it when it happens.

I walk out of the bloodwork place in a bit of a daze. Most likely because half of my blood stayed behind in glass tubes, but also—all of this. I am faced with two distinct new realities. My health is changing and to manage it is going to cost a lot of money. To be more accurate, based on my current estimated income and expected medical expenses, it’s going to cost over a quarter of my income. How much I will struggle physically is an unknown.

Yikes!

For two hours my mood drags like a wet gown on the floor of the world, picking up bits of belief that support a world view of scarcity. Soon I sit with too many sad questions. “What if I didn’t get ill? What if I never left my design job and money was abundant? What if I lose my ability to hold a pen and crosshatch?” I walk out to sit under a tree, hoping stillness will quench these questions. It doesn’t. But as I walk back, a word a friend sent me pops up: abundance. I love the idea of abundance and I decide to give it a try. I look at my life for evidence of abundance and new “what if” questions.

Here is my starting list:
First, last year I worked for a client who not only paid us exceedingly well, they were also understanding about issues related to health. What if there were more well-paying and compassionate gigs coming our way? What if I can make enough to cover costs, save and be super generous?

Second, several friends have helped me financially and many more practically. I support several people too. What if I can trust that the world will continue to care for me and I for it?

Third, I know folks with autoimmune diseases that live stellar lives. What if I will live a rich, full, beautiful life where I experience everything I can, give everything I got, love everyone I know into greater arcs of freedom?

These “what if” questions make me feel much better. And that in and of itself is medicine.

. . .
Image: Close up taken at MOMA this Fall. Is it a Klimt?


Closer to diagnosis

4 January 2023

Hello all,
Happy new year to you.

(This is Marc writing.)
Hanna visited a neuromuscular specialist today. A doctor named “Sun!” She was a kind listener, a good communicator, and took lots of time with Hanna. I sat in on the visit, which consisted of a lot of good questions, many taps in many places with a wee hammer, and a series of tests that felt like little games. “Lift your arms. Don’t let me push them down.” “Close your jaw. Don’t let me open it.”

Next steps: a round of blood tests that look for many different kinds of indicators, intended to support or eliminate possible diagnoses. And an EMG test—electromyography—which will happen next Friday (the thirteenth).

More soon: The doctor said (I’m paraphrasing from memory here), “With these blood tests and the EMG, I feel confident I will be able to make a diagnosis and discuss next steps for treatment.” So, not necessarily more certainty, but at least a near-term expectation for more certainty.

Warmth to you all. May the year bring buds, blossoms and fruit.


Gratitude 32

Gratitude despite dishevelment and poopedness

Gratitude 32/40

I am about to take a shower when I see the text on our chicken-chat: “I think one of our chickens has died and I need some help.” This is not how I imagined New Year’s Eve would begin.

We don’t know what she died of. Hendini was one of the younger ones. And one of the bullies. She was also a cunning escape artist. She would seek the chance to jump the fence and dash down the hillside while we ran after her, hunched over and worried about poison ivy.

Like Hendini, I too love to run. For most of my life I’ve been a stray chicken, often in my own company, often wanting more space in the company of others.

Over the recent frigid spell, the chickens stayed inside the coop for several days. Cooped up, I suppose. Maybe something went wrong then.

When I started to date my partner, I felt afraid of losing my freedom. This weekend was the first time in my life where I celebrated the holidays in the role of a “mom.” I loved being in this family, and I missed my days of entering the new year at a silent retreat. This is also the first time in my life where I can’t quite depend on my body.

When I woke up on the first of January I felt feral, like I too wanted to jump the fence. On the second of January I felt stranded by my lack of energy. On the third of January I felt worried about making a living with this life. Part of me feels disappointed with how disheveled I’m entering the new year. My energy is so low, my expectations scrambled, my house still partly unpacked.

And another part of me is rolling her eyes at me saying, “Girl, whatever! You too could be gone like Hendini—turning into a clay jug with feathers and stiff feet. No matter how disheveled you start the new year, you are here. Your lung sacks are functioning beautifully, exchanging Co2 for oxygen among other minor miracles. You be you. I love you in sickness and in health, productivity and poopedness”


Flamingo with wings spread wide

Gratitude 31

Flamingo with wings spread wide

Practice being in uncertainty

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.


Orange flowers hang from tree branches

Gratitude 30

Orange flowers hang from tree branches

Gratitude for tenderness

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.


A large alligator

Gratitude 29

A large alligator

Gratitude for care I cannot offer myself

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.