Update: Visit to the ALS clinic

21 March 2023

Hello dear people,
(This is Marc writing.)

Yesterday was the long-anticipated visit to the University of Pittsburgh ALS Clinic. A crew of three accompanied Hanna to the visit. Here’s a summary of our impressions, what the doctor had to say, and what happens next.

This visit came in the midst of a particularly difficult couple of weeks. Hanna caught COVID two weeks ago, which brought her energy even lower than before and caused a loss of some of her hard-earned weight gain. The night before the ALS clinic visit, Hanna had what we eventually learned was a stomach bug: a low fever, and unable to eat without vomiting. In her words, “I’m feeling really, really, really shitty in this time. The weakest I’ve ever felt.”

So yes. Let’s get to the clinic already.

The clinic
This is a “multidisciplinary care and clinical research center” for ALS. We felt the “multidisciplinary” part throughout. Hanna has been benefitting from that even before today. The nutritionist she’s seeing, for example, is part of this clinic’s team.

We felt we were in seasoned, listening, caring professional hands. It wasn’t rushed, we had the doctor’s full attention, communication was great. They took the stance of partnership in wherever this all goes.

The doctor had studied Hanna’s previous tests and records. Yesterday he spent time talking with her, asking questions, and testing strength and reflex in different parts of her body. And then he said that he believes this ALS. “90%.”

That last 10% has to do with possible autoimmune disorders. So the clinic is scheduling tests to make sure they aren’t missing something. More about that in “next steps” below.

That test will happen in the next month, and meanwhile this clinic will work with Hanna as if she has ALS. Hanna’s young age and the quick progression of symptoms is not typical. They aren’t going to waste time.

The doctor discussed the cause of ALS, and the truth is that the cause is unknown. It is not one disease, but a family of diseases. Different people experience different rates of progression and different life spans.

Thinking of some of you, we asked about the COVID vaccine. The doctor said he hears that question often, but the reality is that they are not seeing the connection in their patients. A small number of cases are something called “Familial ALS,” with a genetic connection. Hanna’s family history has nothing that suggests this may be her story, but the doctor offered testing if she wants it.

This is hard. How do we live with hard?
This is bad news. There’s no getting around it. We have to act as though this is ALS. And if it is ALS, no one can predict its progress.

The ALS clinic works with a neuropsychologist, who offers insight and counseling to Hanna and her caregivers. This is one part of a larger team (this is why they say “multidisciplinary”). There are specialists in nutrition, counseling, physical therapy, and more. Together they will work to slow the progression of symptoms and support quality of life.

The doctor surprised us with his confidence that we will see a slowing of Hanna’s progression. As we listened together, feeling pressed by the prospects ahead, we were struck by the doctor’s confident statement: “ALS is not a death sentence.”

I know we will be repeating that statement in our minds through days to come.

Another thing I’ll say about “living with hard” is that we aren’t alone in this. Hanna is not alone. The people closest to her are not alone. You are not alone. It has been about twenty-four hours since we left the clinic carrying the news of “90%.” There has not been much “alone” since. A group debrief with crackers after the visit. People coming and going from Hanna’s apartment. A rally around the to-do list. And now among other things this update to you.

I wrote this to the group this morning: “Thank you for the sense of lift we create together, stronger than the pull of gravity.”

If you feel Hanna’s story and this update as a pull of gravity, I hope you’ll talk about it with someone. There’s lift to be found in the flow of caring conversation.

Maintaining weight, getting sleep
The daily work now is maintaining weight, getting sleep, and engaging with life. Relating, creating, giving and receiving.

Weight and sleep are more important than medication. The doctor gave us some suggestions, and things like the meal train and help lists are already helping. (Thank you!)

Next steps: a rhythm of life, inquiry, monitoring and care
Here’s what’s happening now: life goes on, with a few new tweaks.

– Hanna will have a test called MRI Tractography. It’s like a regular MRI, but color codes visuals to show markers of autoimmune disorder. It won’t give positive or negative confirmation of ALS. But it may reveal something suspicious. If it does, the clinic will chase the possibility that this is autoimmune-related.

– Hanna is feeling her lungs weakening. She sometimes experiences breathing difficulty, and this is related to the quality of her sleep. She’ll soon be seeing a pulmonologist to learn more and seek support.

– Hanna will have new medication. There are three FDA-approved ALS medications, all designed to slow progression and prolong life. There’s no reason not to take all three.

– This begins a rhythm of tests every three months, monitoring weight, breathing, mood, sleep, and experience, adjusting treatment and support along the way.

– We asked about clinical trials, and the doctor said he’d like to wait a month or so until we have a 100% diagnosis of ALS. At that point, he said, “All the important trials are happening here.”

– And there will be a few other visits with specialists who can provide their particular kind of insight and support.


Thank you, as always, for your continuing care and support. It’s so… substantial.

If you’re new to this story and site and wondering what might be helpful, there’s a newish page with information about that: How can I help?

Love and buoyancy to you.

Update: Hanna's week

6-13 March 2023

Dear friends,
Here are some moments from my week.

One. About to put on my pajama shirt, I look at the reflection of my back and thin arms in the mirror. I close my eyes and pray that next week I’ll walk out of the appointment at the ALS clinic knowing I have something treatable, knowing I have another three decades and good-enough health to look forward to. I open my eyes and watch small tremors move under my skin, making it ripple like river water. I feel tiny pop-rocks in my tongue. These are fasciculations which, when combined with other muscle-related symptoms, are indicative of a serious neurologic illness.

Two. I walk down the street when a neighbor pulls up next to me.

“Hey Hanna, how are you doing?” he asks. His concern is so genuine that I start to cry. One of those “I lift my hand to cover my mouth and try not to wail loudly” cries.

“Oh honey,” he says, “Come over here.” He beckons with his large workers’ hands.

I shake my head left to right.

“No, seriously,” he says, leaning out of his pickup, both arms extended towards me, oblivious to the hurried cars that drive around him.

“I have COVID,” I manage to say through the tears.

“Ah shucks,” he says, arms still outside his truck but now folded towards him. “I’ve been praying for you, you know. Marc told me you’re not alright.”

I keep crying.

“I’ve been praying. Is it working?”

I just stand there in my tears, a little too embarrassed to hold his gaze.

“Well, I’ll tell you what, I’m here for you sweetheart and I’ll keep praying for you.”

He turns his large torso towards the road and takes a hold of the steering wheel as he slides down Finland ave.

– – –

This must be monsoon season for me, as crying feels like my full-time job. It feels as though the spider web of my life is secured to losses. Every time it trembles—like when I fell yesterday, or couldn’t cut the chicken breast, or can’t open my paint, or had to try three times before I could swallow the wheat berry-sized pill. Or when my voice falls on her face a few feet in front of me—never reaching across the street. Every time I encounter an inability or a loss, I lift my head, following the thread to the end along what seems to me a terrible path of loss and then annihilation.

Returning to Pittsburgh was not the soft landing we anticipated. In Montana I started taking a medication which lowers my white blood cell count. Breathing can feel strained at times. Struggling for air on the flight from Great Falls to Denver, I took off my mask. At the time I wondered if I’d get COVID. And yes, I tested positive for COVID week Monday.

That night in my brain fog I forgot to put the chickens to bed, and the life of a new young hen was abruptly ended by raccoons. I cried when I heard that. Not only for our hen, but also for my diminishing capacity to be in life. I am crossing the threshold of someone who was once vibrantly healthy into disability.

Practically I also struggle to adjust to my low levels of energy, the bodily sensations of a motor neuron disease, the increased muscle weakness. I accomplish much less with my slower moving body and stressed mind. Because some of my muscles are dying, the rest need to work so much harder, increasing my metabolism. I need to eat a lot more so I don’t lose more muscle or organ tissue. With some of the atrophying muscles being in my mouth, it all adds to a really trying season.

I couldn’t have survived this week of Covid isolation and distress if it wasn’t for all of you. So many of you checked in on me, fed me, delivered meals and juice and encouragement, even loaned your dog to me! Some of you donated to the site or signed up for the meal train. I can’t tell you how much that means to me. Thank you.

Feeling so many things including gratitude,


An update, ways to help, images and a poem

10 March 2023

Hello dear people,
Marc here. We’ve had updates and writings in progress for days, and suddenly it’s Friday afternoon. Here is a quick summary, some things to read and look at, and a promise of more to come.

How is Hanna?

The time in Montana was wonderful: a nest of loving family, progress on illustrations, and ventures into an astonishing winter landscape. More about that below.

Through it all and through the week since returning to Pittsburgh, Hanna notices her energy is lower and her muscles are weaker. Some things take longer than they used to—putting on socks, clipping nails, opening bottles. That sounds difficult, right? Pretty scary. More on that below as well.

– Hanna’s EMG test, the one specifically aimed at determining whether this is Myasthenia Gravis, is rescheduled for the first week of April.

– The first visit to the ALS specialist is just a little over a week away.

On the site: first answers to the question, “How can I help?”

There’s information on the site about ways people can support Hanna’s needs through food and finance. See the new How Can I Help? page.

Coming soon: resources for all of us who find this sort of thing difficult and confusing, and suggestions and sign-ups for other practical ways to support Hanna.

Photos and a poem

The first thing is this gallery of photographs and short videos from our time in Montana. Have a look.

The moments in those images have been vividly present with me through the week. This morning my coffee time reading was the poet Jack Gilbert. His poem A brief for the defense is a defense of joy in the midst of a world of sorrows.

Now there’s three of us at the table: myself, The Monster (introduced in the 14 February update, if you’re new to these messages), and Jack Gilbert. I poured a second cup and scribbled the following, imagining it as a comment on the Montana photo gallery.

– – – – – – – – – –
What you cannot see, dear gazer,
is that the woman walking toward those buttes
and the fiery peach-colored storm
on that blue horizon
is facing the death of her dreams
and the death of her body—
not for sure but maybe
and maybe is pain aplenty.

What you do not know, beloved,
is that the woman dancing on the plain
had trouble setting up the camera;
it kept falling in the snow
because the wind pushed
with troublesome strength
despite her cheerful intentions.

She felt that moment,
that vast cradle of grass,
the wind being itself so strong,
the light from dreams
falling on sage and wheat
and her.

The wind didn’t mean to be cruel.
She was in its place,
and there in the chapel of distance
on that ancient prairie
what else can one do
but dance?

Jack GIlbert says
we must risk delight
even though we have seen the terrible
and know that worse is coming.
He says we must have the stubbornness
to accept our gladness
in the ruthless furnace of this world.
He says to make injustice
the only measure of our attention
is to praise the Devil.

I celebrate the stubborn gladness
in these photographs
and take it as my instruction.


Marc Rettig, March 2023, Pittsburgh

– – – – – – – – – –

Thank you for your care and attention, the love you hold whether or not you can find its expression. More from Hanna soon.


Notes on help, meds, and a postcard from -20

Hanna in middle distance, surrounded by sage brush, gazing across frozen fields and the Missouri river

22 February 2023

This is Marc, offering another update on Hanna’s health and life, and a couple of helpful links.

In this update…
– Medical update and next step
– Reflecting on “help,” and two resources: a sweet video and a helpful slogan
– Postcards from the wide winter prairie

Hello from Montana! I grew up here, and it’s still an important place in my life. Soon after Hanna and I met she made her first trip to the wide prairie, fell in love with place and people, and has been returning every couple of years. Now we’re having a winter visit to this Home on the Range.

Medical update and next steps

MRI results
In the continuing process to look under every diagnostic rock, Hanna recently had an MRI of her neck area to see if there might be something structural that’s causing her symptoms. That MRI came out clear, which is to say it did not suggest a cause. In the doctor’s language, “MRI showed mild spine arthritis which does not explain your arm weakness.”

This weakness is mostly in Hanna’s left hand and arm. Which is not her drawing hand. She says, “I can still illustrate!” More about that below.

New meds
Today Hanna received a prescription for Riluzole, a medication used to slow the progression of ALS. ALS has NOT been diagnosed, but this is intended to slow progression of her symptoms. But it’s going to take a few days to actually obtain the pills. Here in Fort Benton the pharmacist isn’t in today—he works at the liquor store on Wednesdays. Meanwhile this medication is unusual enough that they don’t keep it on hand. If they can order it, and if it isn’t too expensive, we’ll get it once it can make its way here through the snow and cold.

Next step: EMG, March 6
You may or may not recall that Hanna had an experimental period taking a medication that reduces symptoms for people with Myasthenia Gravis (MG), sometimes dramatically. She did experience partial improvement, which led her neurologist to prescribe another EMG on March 6. The first EMG (the day we first met the monster) was a general neuro-muscular examination. This one will be “a specific nerve conduction test for MG (repetitive nerve stimulation).”

ALS specialist, March 20
It would be glorious if this appointment turns out to be unnecessary, but it is on the calendar—a visit to the clinic of Pittsburgh’s highly-reputed ALS specialists.

And so we go.

Reflecting on “help,” and two resources

When someone we love gets seriously ill, most of us feel a bit discombobulated. We don’t have much practice. We WANT to help. We feel we SHOULD help. But what help would genuinely be helpfu? We WANT to express our care. We feel we SHOULD express our care. But does that make the person feel weird? Is it too much if everybody is doing that? Does talking about the illness center the illness rather than the person? But if I don’t talk about it, or if I trust their network and stay out of it, will I seem like a distant uncaring friend? That’s not me!

It’s confusing. Discombibblebating.

Here are a couple of things (thank you Lizzie and Etta!) you may find useful for de-discombibblebating.

Video: RSA Shorts animation of Brené Brown on empathy (<3 minutes)
If you’re not aware, Brené Brown is a researcher on matters of empathy, shame, and vulnerability, and quite an effective communicator. A rare combination! This short video gets to the nut of how we might source our response to people who are in a dark place.

Along these lines, here are two things I’ve heard Hanna say about things that DO NOT help.

– “Please don’t try to cheer me up. Just be in it with me.”

– “How I am shifts from moment to moment and I would prefer not to answer the question, ‘How are you?’ several times a day. If you want to reach out, just tell me that you think of me or send me something that brings you delight.”

Short essay: How not to say the wrong thing (LA Times)
This is the source of the catch phrase, “care in, dump out.” Which didn’t make much sense to me until I learned about the little diagram. Very useful!

This week or next we’ll add a “resources” section here, including a way for you all to share any resources you find helpful. AND we’ll provide a Hanna-specific tool for helpful help.

Postcards from -20F

We’re in Montana! We’re working on book illustrations!
Okay, officially it’s -1F. But the gusting North wind and 66% humidity makes -20 the “feels like” temperature. (That’s -29C, dear folks in SA.) And so we are getting a beautiful dose of wide-horizon winter.

Here is another view of Hanna communing with the sage while the wind kisses her cheeks.

Hanna walking through endless sage prairie covered with snow

Ten minutes of that, and it’s necessary to return to the warm pickup.

Aside from this beating-heart landscape and beloved people, the other reason for coming to Montana is to push a project to completion. Hanna is illustrating a children’s book called Boppa’s Bald Stories. Boppa is my brother’s “grandpa” name. A few years ago the grandkids made a game of asking, “Boppa, how did you get bald?” Every time he would answer with a different tall tale, from bears and sharks to lightning bolts and tiny lawn mowers. His wife collected the stories, they’re going into a book, and Hanna is the illustrator.

For example:

Two of Hanna's illustrations

Thank you all, as always, for your continued care; for Hanna, for those around her, and for one another. Each day is full of light and gratitude.

More soon.


Update: How's Hanna, and doctor stuff

14 February 2023

This is Marc writing, with an update on three subjects: “How is Hanna?” “What’s up with doctor stuff?” and “How can I help?”

How is Hanna?

If you’re subscribed to this site, you’re seeing Hanna’s writing. That speaks far better than I can on this question. I can say something about it from my perspective as her friend, in case that’s useful.

Hanna and I talked this morning over a shared breakfast sandwich, with sunlight streaming into the neighborhood coffee shop. During the conversation she remarked that we have now lived one month with the possibility of ALS.

Here’s an image that’s sticking with me: the day the doctor mentioned ALS was the day a monster showed up at our door. Here is this huge looming presence, that we didn’t invite and that won’t go away no matter how much we say we’d like it to leave. And it was so close, so threatening, so big and stinky that it was impossible to think about anything else. The monster filled all life.

This morning Hanna asked if I’d learned anything in the last month, and I said I’ve learned that we can live with a monster. It lives at Hanna’s house, but has a way of showing up in all of our houses at surprising times. I’ll catch its odor and for a time forget everything but the monster. I’ll be trying to do something, but the monster is in the way. Maybe it comes to your house too.

And life continues. Food still tastes great. The company of friends is still delightful. Jokes are still funny, stories still inspire, and the days still provide. Hanna still feels the urge to create, to give through her work and voice and care, and she does. So do the people around her. And the monster is here too. It’s silly to pretend it’s not. Not only silly, but a useless frame and bad mental health practice. However much I’d prefer otherwise, breakfast with the monster is much better than breakfast with those terrible twins Avoidance and Denial.

What’s up with doctor stuff?

An earlier update mentioned a two-week experiment with medicine that helps people who have Myasthenia Gravis (MG). Its effect on Hanna’s symptoms provides a clue for diagnosis. Hanna did notice improvements in several areas. Not complete, but noticeable. Seeing that, her neurologist has scheduled electromyography (EMG) test, specifically focused on MG. That test takes place in early March, and her appointment with the ALS specialist is March 20. On Thursday she gets an MRI to see if the weakness in her hands could originate from pinched nerves in the spinal cord.

Meanwhile Hanna has had good conversations with various sources of information, community and support. She’s adjusting her diet, and she’ll be visiting with a nutrition specialist. And she hopes to receive a prescription for a medication that can help manage her symptoms and delay their progress.

To sum up where we are, the ALS Association says that on average it takes nine to twelve months for someone to be diagnosed with ALS, from the time they first begin experiencing symptoms. That’s because there’s no specific indicator, so it’s a process of elimination and watchful monitoring.

There are still possibilities other than ALS. Each morning I face east and do the chicken dance to better ensure a treatable diagnosis. Perhaps you have a similar ritual.

How can I help?

A few friends have met with Hanna to bring some clarity and structure to this question. We’re aiming to provide a clear detailed answer about this sometime soon, along with a tool you can use to sign up for this, that, or the other thing. Soon!

Thank you

Thank you all for your care and notes, inquiries and offers. There’s a lot of love surrounding this monster.


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.


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.


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?