News Update

Hello,

This one goes out to those in the Pittsburgh area. Hanna will be the featured speaker this Friday for the Creative Mornings event. It’s, you know, Creative Mornings, so if you want to start your day with coffee, interesting folks, and Hanna, it all starts at 8:30am.

Here’s the place for to see the details and sign up for a free ticket.

See summa yinz there!

Marc

Hello dear folks,

This is Marc. I see it has been a month since we last sent an update. If too much time goes by and you’re wondering what’s going on, the safe assumption is that life is clucking along like so many chickens. We’re busy each day pecking at grubs. If something especially difficult or wonderful happens, we’ll let you know right away.

Here are the headlines….

A video
Through her work, teaching, learning and travels, Hanna has gotten to know quite a few people. There are many who do not yet know about her diagnosis, and rather than sending them an email she wanted a way to speak to them more personally. So we made a video. You can see it on the front page of this site.

(Shiny coins of gratitude to Mark Knobil for guiding, shooting, and bringing big heart to the project, and to Michelle King for encouragement to choose video over email.)

General health update: good days, a new medicine
Hanna’s health has continued to improve since those difficult weeks during and after Covid back in March. She has regained almost all of the weight she lost, and adjustments in medications and eating make for better days in general—more energy, better mood.

Hanna does notice continued progress in her symptoms. Speaking is becoming more difficult. Weakness in her hands continues, though she can still type, write, and draw. She’s noticing some weakness in her legs too. This is more noticeable when she wakes up at night. Not quite trusting her balance, she uses a walker to get her safely to the loo and back.

Hanna is about to try a new medicine, called Relyvrio, which was just approved by the FDA last Fall. Like other ALS drugs of this time, it’s not a cure but has been shown to slow the progression of symptoms, which extends quality of life. That said, it tastes worse than bear flop and the side effects can be pretty unpleasant. So chickens, please strut and squawk your best on behalf of a comfortable experience for Hanna.

Mom is coming!
Hanna’s mother Elsa is arriving in Pittsburgh tomorrow, and staying almost to the end of May. Elsa is a walking generator of loving care and good cheer, so this is a great gift. (Ask her about the time she hatched a baby chick in her bosom.)

A sweet surprise for Hanna as a writer
For years, Hanna has participated in Carlow University’s Madwomen in the Attic, which “values women’s work as writers, dreamers and architects of society.” The faculty of that program have given Hanna a great honor: sponsorship to participate in a writer’s residency at Trinity College Dublin this June. They really are providing wonderful support for Hanna as a writer. Someone will travel with her and help her be comfortable and cared for through the experience.

(After seeing photographs of the library there, I’m calling it “Hogwarts for writers.”)

Help (thank you!) and finance—a new way to contribute
Thanks so much to those who have used the GiveInKind site . Your meals and groceries make it easier for Hanna to maintain her critical high-calorie high-protein diet despite her limited budget and daily energy. Hanna says she’s aware she hasn’t sent a thank-you to each person who contributed, and intends to. If you’re reading this now, please know your help really helped!

A warm and deep thank-you to those who have sent gift cards through GiveInKind or used Hanna’s PayPal link to send her money directly. It has been a relief to have this financial cushion and permission to spend on things that make life more wonderful. Thank you, thank you!

There are now two ways to help financially.

1. Contribute to Hanna’s daily/near-term needs (or use this link if you simply feel most comfortable giving this way). There is a button on the “Ways to Help” page that takes you to Hanna’s personal PayPal link. It’s called “Send Hanna money.” For convenience I’ll put it here too.

2. Contribute to a fund for Hanna’s longer-term medical and life needs
We are starting to see some bigger expenses. For example, the co-pay for a portable ventilator and cough-assist is going to be $1,000 per month. In the Fall Hanna will be eligible for medical assistance which will cover most of that. Between now and then we want to keep her lungs strong and energy levels high, which means paying the bill.

Hanna’s employer, Fit Associates, is accepting donations and managing a fund for the bigger needs we can already see and those we can only anticipate. Fit’s role is really one of simplicity and convenience—all donations will go to Hanna in full, the books will be open, and funds will be distributed in response to Hanna’s ongoing needs. Each month we’ll update the overview statement beside the button on the “Ways to Help” page to reflect needs and progress.

To donate to the fund: bit.ly/hanna-fund 

May is ALS awareness month
May is ALS Awareness Month, and the home for that is the ALS Association. We’d love for you to know about this and participate if you can. Now that we have reason to benefit, we have been struck by the warmth, generosity, and quality of support that’s available through our local chapter of the ALS Association. We highly recommend it as worthy of your support.

Love and breadth of life to you,
Marc (and Hanna)

The wild edge of sorrow
I am reading a book by psychotherapist Francis Weller, whose whole career has had to do with grief. The book is called The wild edge of sorrow. I’ll leave you with a few quotes.

“There is some strange intimacy between grief and aliveness, some sacred exchange between what seems unbearable and what is most exquisitely alive.”

“Grief and love are sisters, woven together from the beginning. Their kinship reminds us that there is no love that does not contain loss and no loss that is not a reminder of the love we carry for what we once held close.”

“Our broken hearts have the potential to open us to a wider sense of identity, one capable of seeing through the partitions that have segregated self from world.”

“Those who undertake the full journey into their grief come back carrying medicine for the world.”

“Bringing grief and death out of the shadow is our spiritual responsibility, our sacred duty. By so doing, we may be able to feel our desire for life once again and remember who we are, where we belong, and what is sacred.”

“[Each emotion and experience] has vitality in it, and that is our work: to be alive and to be a good host to whoever arrives at the door of our house.”

“…the two primary sins of Western civilization: amnesia and anesthesia—we forget and we go numb.”

“We were not meant to live shallow lives…. …We are designed to encounter this life with amazement and wonder, not resignation and endurance. This is at the very heart of our grief and sorrow. The dream of full-throated living, woven into our very being, has often been forgotten and neglected, replaced by a societal fiction of productivity and material gain. …Every sorrow we carry extends from the absence of what we require to stay engaged in this ‘one wild and precious life.’ [Mary Oliver] And every sorrow is made more difficult to metabolize by that absence. Grief work offers us a trail leading back to the vitality that is our birthright. When we fully honor our many losses, our lives become more fully able to embody the wild joy that aches to leap from our hearts into the shimmering world.”

Francis Weller, The wild edge of sorrow

Hello dear people,

This is Marc writing. It has been a little over two weeks since the last update. Here’s the news.

Now less shitty!
Our previous update contained this sentence: ““I’m feeling really, really, really shitty in this time. The weakest I’ve ever felt.” This was the result of several combined factors, which continued and then then got better. There has been more time since Covid and the stomach bug. Hanna is making adjustments in medication and tweaking her approach to eating. All that helped. She is feeling MUCH better overall than two weeks ago.

A bounty of resources, care, and government forms
The ALS clinic connected us with their team, and that array of help is really kicking in. There are many kinds of federal and state assistance, the local chapter of the ALS Association is active and generous, and the many specialists connected with the clinic are wonderfully supportive. (As are YOU. Thank you for the continuing flow of care and generosity.)

The clinic’s social worker is hooking Hanna up with an amazing list of resources. But for most of them, especially the government ones, you don’t just knock on their door. No, you fill out fooooooorms. Happily the social worker also connected us to free legal services. Still there’s plenty to satisfy the hungriest appetite for typing in little boxes and divining the meaning of fine print. Bounty!

Pulmonologists are angels
This week Hanna had her first visit to the sleep and breathing center at UPMC. When we talked to them before the visit, they seemed excited to show us what they called their “toys.” Hanna had mentioned she struggles with having enough energy during the day. They said, “Let’s see what we can do about that.”

Hanna got to experience a ventilator, which is basically a more capable cousin of the CPAP machines used by people with sleep apnea. She tried different masks, was able to spend time on a bed trying different positions, and experienced different settings. She gave it two thumbs up and a big smile.

Here’s the thing: weakened chest muscles mean shallower breaths, and that’s especially true at night when we’re all at our weakest. Shallower breaths means lower blood oxygen, and all that contributes to a poorer harvest from a night’s sleep. Result: less daytime energy. This will improve that.

AND… and and and… this machine can be battery-powered, and it fits in a backpack, and there is an attachment that’s a tube you use like a pressurized air-cigar, which means Hanna can have better breathing while walking or riding a bike. That is a yahtzee.

There were other devices to try, including a kind of atmospheric Pushme-Pullyou that basically provides physical therapy for the lungs. There were fully-filled lungs and puffed-out cheeks, and there was much laughter there in the sleep lab. Hanna will receive these new tools as early as next week (pending insurance approval and co-pays). Those pulmonologists are jolly angels.

The punchline for me was when Hanna said this: “This is the first time I’ve felt hopeful since the diagnosis.”

Wait, where are we with the diagnosis?
When we last updated you the ALS specialist had said he believed “This is ALS, 90%.” Then he ordered an MRI scan that highlights evidence of autoimmune disease. That scan has happened, and we have the very technical version of the results. From that dense language we can glean that what the scan saw is “in support of” the ALS diagnosis. But we do not have the doctor’s interpretation of those results, and understand it may be several weeks before we do. Because doctor stuff.

I spoke with Hanna about this, and her perspective is that we essentially do have a diagnosis. Whatever the final report from the MRI, it’s not going to be some kind of saving surprise. In Hanna’s words, “There is no ticket out.”

That has been the mode and mood for Hanna and her circle of care. This is ALS. Life awaits. Let’s go.

Life’s many joys
Hanna went with friends to see The Parable of the Sower at Pittsburgh Playhouse.

There was a nighttime expedition to “Salamander Park” to listen to the spring peepers. They sounded like this: 

People come to visit, and clean, and take care, and just be. More angels. 

Erika (I think it was Erika) gave Hanna the gift of a jar of tadpoles, which sits on the stand beside her bed. They are very cute. They swim, they eat, and to my surprise they have lips like fashion models. 

Oh, and our students in the SVA Design for Social Innovation program in New York got together and made Hanna an amazing tapestry using sumi-e ink. Someone called it an “honor scroll.” Indeed. 

Yes, there is daily joy. 

Thank you
Thank you all, as always, for your good presence and care. It’s lovely to see this fabric of connections that has been weaving around Hanna. I guess that has always been true about life, but is more evident because of this challenge: we are a fabric. 

Marc

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.

Diagnosis
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.

Causes
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.

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,

Hanna

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.

Details
– 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.

Marc

Hello,
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.

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:

Hello,
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.

Marc

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

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.