A view of the campus at Trinity College Dublin

Traveling to Ireland

A view of the campus at Trinity College Dublin

Where is Hanna now? Trinity College Dublin.

Traveling to Ireland

This past Saturday, Hanna set out for two weeks of writer’s residency at Trinity College Dublin, sponsored by the writing program at Carlow University. That day also marked the end of long lovely days with her Mom, Elsa, who had been in Pittsburgh for almost a month. Here is Hanna’s travel report.

I like leaving for a trip, but this time I like it even more because I am leaving behind the many reminders of my illness and of a future I still grapple to embrace—the five boxes of medication I start when I return from my trip. The outside walker. The slanted stacks of papers from the medical maze. The unopened and unassembled shower chair for when standing showers becomes too difficult. The plastic arm to help the ventilator pipe fit onto a wheelchair.

But I’ve never before attempted international travel while terminally ill. After check-in and a last long lean into my mother’s arms, my body buckles into a wheelchair. Surely this is not my first time being wheeled around. I’ve been in strollers, on bike handlebars, in wheelbarrows. But today it is my adult independent self that is asked to sit and be moved by someone else. For a moment I want to brace—fasten a seatbelt or hold the handlebars. But Kim, the person at my back, pushes just slowly enough for me to trust the ride.

My beautiful body reads the different floor textures like braille. The coaster-sized porcelain tiles with their wide lines of grout reverberate like cobblestones. The expansion joints in the terrazzo floor are so delicate, I need to listen with my entirety to feel them. The aluminum plates that hide underfloor cables make for hiccups in the ride. And the rug feels soft, almost like sand slowing us down.

At the gate they need me to check my carry-on, but my ventilator is in it. “Take the ventilator out,” they say, “and then check the bag.”

“No,” I say, “the ventilator pipes are too fragile and will get damaged in my soft-shell bag.”

“Okay, okay. You can have it on the plane.”

Thank goodness I can still speak.

I didn’t book my tickets for this trip, the school booked them for me. They put me on the same flight as Donna, another Carlow student. We have a six-hour layover, and Donna had booked a lounge suite where we could pass the time. After we disembark in Philly, I see Donna only briefly. The airline had checked her bag through from Pittsburgh to Dublin. But they told me that they couldn’t book mine through in the same way. I would need to pick it up in Philly baggage claim during the layover, then recheck it to Dublin. With a wheelchair.

I tell Donna that I must get my bag before meeting her at the lounge. Then Breeze the airline assistant wheels me away.

We get my bag at the luggage claim and take it to the airline that brought me to Philly. “Oh no, sorry,” they say. “This ticket is two separate bookings. We can’t check your bag, you must go to Terminal A.”

Breeze whisks me away and suddenly we are at security. “Shouldn’t we go to Terminal A first?” I ask.

“We’re going there,” she replies. I’m confused. In my mind you check your bag before you go through security.

TSA screens my large bag, the one I’m planning to check. A blonde guy with blue gloves works his way through my belongings, and I feel angry as he unwraps my stuff, opens my candle and smells it. He takes out the protein powders to screen them. Sets aside my protein shakes and takes apart my blender.

“But I want to check the bag, not take it on the plane,” I say, confused.

“But you can’t take these through this security point.”

But I don’t want to go through security. I just want to check my darn bag and then go through security without it. Another lady jumps into our confusion and amplifies it with unsolicited advice. My eyes burn with frustration and simultaneously I feel ashamed that something so small can make this white lady cry.

“Are you okay?” asks Breeze.

“Yes, yes,” I say.

TSA man restates the facts. “Either you leave the shakes and blender here, or go back and check your bag.”

We turn around to go to Terminal A without going through security. “How do we get there?” I ask.

“We walk,” Breeze replies. Walking turns out to be a rotten task with me, two bags on my lap and Breeze—weighing no more than a suitcase herself—tries to push me in an old wheelchair while also dragging my 46-pound bag behind her.

“Wait Breeze,” I say. “I can walk. Let’s work this out.” I get up and push my carry-on bags perched on the wheelchair. Breeze brings the large bag. If I had studied Philly’s airport, I would have known that Terminal A is quite far from Terminal F and that a shuttle would have been a smarter plan. Maybe not for a fit self, but definitely for this self! I stop a couple of times to catch my breath.

When we arrive at Terminal A, hot and sweaty, I am well positioned for a temper tantrum. It’s nap time, I’ve not had lunch, I am thirsty and tired. If you have ALS, it is important that you rest, hydrate and eat regularly. I can’t wait to check this bag, slip through security to food, naps and water.

But bad news awaits. The airline that must check my bag to Dublin won’t open for two-and-a-half hours. The terminal is a single room, with no bathroom and nowhere to buy food. Since Breeze and I can think of no other practical option, she leaves the wheelchair with me and goes on with her day.

The first airline’s job to hand me over to the next airline is done. I take my place on the fake leather seat and watch my mind throw a temper tantrum.

If I was able-bodied I would have found a way out of there to food and water, at least. But I am not. Our world is not set up to take genuine care. The first airline, knowing of my condition, hearing my request to book my bag through to Dublin and my need for a wheelchair, did not think in terms of care. Even though checking a bag all the way through was possible—my travel companion with the exact same travel plan had done just that—Breeze (an employee of that airline) was not empowered to think strategically with me.

And so I landed in the seam, in the crack between two airlines who had done their duty, and who had no further responsibility toward me.

What is the impact of landing in this unsupported and unseen no-mans-land? The lack of water makes my mucus thick so I can gag on it. It worsens the fasciculations in my body, making it harder to sleep. And contributes to constipation and ass-figs (also known as hemorrhoids). My body hopefully meets its need for protein and calories by taking from my belly fat rather than muscles or organs. My tiredness will be passed onto my future self. (And it was. I was so exhausted upon arrival that I could hardly muster the energy to chew my sandwich.)

All of this is manageable. At least this time and for this person. But what about all the others who have slipped through the cracks?

Once I stood in front of a glass case in the national history museum of Mexico, looking at a figure carved out of rock. The description said that once very, very, very long ago, people who were born with Down’s Syndrome were considered gods. Imagine that! Imagine if tomorrow everyone on the margins woke with garland of flowers and prayers and incense around them. Imagine their joy as they stepped or rolled or stumbled into a world so tightly woven together in reverence for life that they never feared slipping through the cracks ever again?

Event: Hanna at Creative Mornings Pittsburgh, 26 May

Hanna will be speaking at Creative Mornings this Friday.


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!


A jumbled pile of dusty broken plates

How to get through the first 17 hours after learning you have ALS

A jumbled pile of dusty broken plates

Getting through the first seventeen hours
after learning you might have ALS:
a how-to guide

1. Take a notebook and pen—one that works—to the doctor’s appointment. When the doctor looks down and sighs as if she’s trying to shed the heaviness you both feel, be sure to have both pen and paper ready. Listen carefully as she says, “I suspect you have ALS.” In that moment your brain might not be working right. That is okay. Try to focus on her words and make the symbols for ALS as many times as needed. She will nod in agreement when her sounds and your scribbles align.

2. Walk out of the appointment and search for your phone. Text the friends who marked their calendars with “After doctor support.” Tell them to meet you at the bar.

3. Arrive. It’s okay to feel out of sync with all the people giggling around you. Let your friend choose a table. Excuse yourself and visit the restroom. Be mindful, if the bathrooms are gendered, to choose the one that matches yours. Sit down on the toilet seat and cry. If there is no one else or if you feel okay with someone hearing, cry loudly. Then pee. Wash your hands, wipe your face. Wink at yourself. Apply lipstick if that’ll make you feel stronger. Take a tissue to the table.

4. Join your friends at the table. Be sure to sit where you feel most held. A corner seat is good for that. Allow your friends to order you a drink and choose the appetizers. It’s okay if you forget to consider the happy hour menu.

5. Ask the questions. This is a good place to ask things. You are not alone now and your friend who holds the world of Google can be trusted to translate. Ask anything. “How long is the average time to live?” “Will I die of suffocation?”

6. Cry. It’s likely that you don’t often cry in public, but this is the time to break that taboo. Lower your face into the brown paper napkin. Let sorrow rise from inside you. Let it shake your shoulders and escape the narrow passage of your throat.

7. Ask for jokes. When you start to feel like you are sinking below the surface, ask your friends to tell you jokes. Laugh at all of them, even the dick joke. Search for a joke inside your own mind. It must be there. Allow your laughter to swing into crying and then back into laughter again. If you have never faced death like today, your emotions need a lot of space to roam.

8. Eat at least ten bites. Your belly will constrict with fear. But all these weeks of tests and waiting have already worn you thin. You need sustenance. Take two french fries between your fingers and dip one in the mayo, one in the ketchup as if they are legs with different colored socks. Chew. Taste the tang. If necessary, use water to help you swallow.

9. Hug your friends goodbye. Notice their bodies close to yours. Let your nose rest on her buzz cut and breathe in that comforting scent. Feel how thin he feels after his open-heart surgery. Cusp your hand over his soft, warm cheek. Don’t let go of his hand until you split off into your own apartment.

10. Sit down. It’s okay if you forget to take off your coat and hat, but do remove your gloves. While I want to advise you not to google ALS in this moment, it might be very difficult to refrain from doing so. Set your timer for fifteen minutes.

11. Answer the phone. When your partner calls, answer. Be honest when he asks you how you are. This is not the time to “be strong.” Allow him to come over, you may really need the company. And he might too.

12. Bathe. Do the thing that will bring you most comfort. If you’re able, I suggest taking a fragrant bath in candlelight. Lift his shirt from his body with your able hands. Untie his belt. Stay close to him as you both step into the water together and lower your bodies down. Roll the soap between your hands and watch it froth. Transfer the soapy foam onto a washrag and place it in the nape of his neck. Draw it down as you trace the shape and strength of body under your hands. Wash his whole body with this careful attention and let him reciprocate. Let him wash down the tears brought on by the thought of no longer being here to hold or be held by him.

13a. Try to sleep. Take some of the sleeping drops your friend who is going through chemo gave you. Lie awake. Reach for and turn to each other. Make love. Watch as your mind leaves this moment and goes to your death. The dying moments where you lie, alone and plumbed through with pipes on creaky white sheets, holding onto this moment. Don’t stay there. Turn around and swim through the viscous night. Swim right back into this moment, this moment where your lips are still working, where you can kiss him still.

13b Try to sleep. When you can’t, sit up and look at the cascading handrail of the city steps and the long power lines glistening in the tungsten street light. So thin, like spider webs.

13c. Try to sleep. Walk down to the kitchen and ask the stove to tell you the time. When you learn it’s 2 am, hunch down and look at the dying embers in the fireplace.

13d. Try to go to sleep again. This time visit the bathroom. Don’t be surprised if your period has started weeks too early. Bodies do this when they feel panicked.

13e. Try to sleep. And when you can’t, get up and make yourself a cup of hot water. If your belly aches, eat half a banana while you watch the cat curled up, now a contoured button on the corner of the rug.

13f. Try to sleep again. Feel the relief wash over you when the sky begins to shed its darkness, when you can tell you made it to the morning.

14. Turn to each other. Hold each other tightly as both of your bodies shake in sadness, as you wake into the day neither of you ever wanted.

15. Then roll out of that warmth towards the edge of the bed. Lift the covers. As you come to a seated position, swing your legs out of the bed. Feel your feet on the wooden floor. Lift your weight up onto your feet.

Congratulations. Not only have you survived these hours, you are also practicing the thing that will keep you going in the coming passage: standing up, physically or not, and beginning again.

Update: feeling better, Mom, medicine, and a new fund

9 May 2023

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.”)

An impressive and elegant high ceilinged library
The library at Trinity College Dublin, photo by Dilif

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.

Send Hanna money

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

A tray of brightly colored Easter eggs

Eat or be Eaten, and Easter

A tray of brightly colored Easter eggs

Eat or be Eaten, and Easter

I. Eat or be eaten

I first saw it on the after-visit summary from my January appointment with the neurologist. Weight: 117 pounds. This is the least I have weighed as an adult. In another context being underweight would be just fine with me. I grew up in a fat-phobic culture. I grew up believing I should look like Kate Moss. I wasted way too much life believing the lie that “to be thin is to be beautiful and to be beautiful means you belong.” But now, now my context is changing.

Weight loss is a sign of ALS. This can be because chewing and swallowing is difficult, and because as some muscles atrophy the rest of them need to work harder, so you burn more calories. If there are no extra calories to burn, your body will break down muscles and organs to keep going. People with a larger body mass live longer than skinny sticks like me. In mid-February I met with an ALS dietician who suggested I eat at least five high-calorie high-protein meals a day. The underlying message I walk away with is, “eat or you will be eaten by this disease.”

That threat is not unfamiliar to me. “Eat or be eaten” has the same timbre as “stay thin or risk rejection.” I know what to do next. First disconnect from what you need, want or feel, and secondly follow this new diet toward safety without question.

Now if you know me you know that I eat like a bird—nuts, seeds, sprouts and salads. I don’t do well on loads of fat and dairy, protein, and carbs. But in this moment of my life I am in a state of self-forgetfulness. I am disembodied. I am afraid to die and so I treat my body like a machine that must eat, must eat, must eat. In addition to this mandate, I started taking ALS meds that help protect my neurons from dying. The meds need to be taken exactly twelve hours apart on an empty stomach—two hours after your last meal, one hour before the next. This means that not only does my diet change, my timing changes too: 8:30am breakfast, 10:30 meds, 12:00pm lunch, 3pm snack, six o’clock dinner, 7:30 snack, 10:30 meds.

Slowly my appetite started to dwindle. Then I got COVID and my appetite disappeared. And then I got seriously ill from what seemed to be a stomach bug. My weight dipped down to 112 pounds. I have never felt so ill in my life. For a week I didn’t leave my house. I spent the whole week lying down. I was a piece of cardboard at the bottom of a lake, saturated and slowly disintegrating. I was a blanket of bones that assembled to attend virtual appointments and then collapsed into naps. I was soup that rose and fell on tides of nausea. I was a dysregulated body with an appetite that disappeared, then suddenly flared up into sharp hunger and a simultaneous urge to defecate.

Have you ever held a raw egg in your hands and felt that even if you clamp your hand tightly, some thin part of the white runs through your fingers? It felt like a thin part of me was seeping out.

This appetiteless nausea combined with regimented meals continued for five weeks. I thought, ”I cannot live like this.” On the fifth Monday of breathing these gray waters I stood hunched over my kitchen sink. I’d felt a disorienting nausea all afternoon. I was able to keep a mango and protein powder smoothie down, but I knew I’d not eaten enough. Before bed I opened a vanilla Ensure shake with trembling hands. “If I can hold this down,” I thought, “it’s at least another 350 calories.” But as soon as I put the cap back on the empty bottle, my own cap came off. I reached the sink just in time to watch the smoothie and the shake stutter out of my body.

“This,” I swore to myself as I gagged on the last bits of sticky mucus and vanilla-flavored vomit, “This is the last time that I will force my body to do what she doesn’t want to do.” Making a promise like that to my body is not new. Maybe eight years ago I wrote a letter to myself: “I raise a white flag. I am tired of being at war against my own appetites, I am tired of withholding sweetness and affection from myself.” As I wiped my hands clean I remembered and restated that promise. “No more war. No more me overpowering you with what I think you are supposed to do or be. I want to listen to you, I want to care so well for you, beautiful one.”

II. Easter

When I woke the next morning, Tuesday, I did two things. First I asked my partner to bring me celery, carrots and lettuce. I made myself a giant salad, which is not something I’d eaten in weeks. Then I contacted my doctor and told him I felt like shit and was too thin. He quickly replied, “Stop the medication. Nausea and loss of appetite is a side effect, and we need you to maintain weight more than anything.”

I stopped taking the meds. This meant I could quit eating on a timed schedule and could feel for when I wanted to eat. I started eating salad and allowed myself to eat fruits and yogurt (with protein powder!) for lunch. I went through jars of pickled beets like groundhogs through a vegetable garden. After two days, Spring returned. On Thursday I felt the seed of my appetite sprouting. On Friday my partner’s daughter Early noticed and said, “I am so glad you are hungry again.” And then she paused and said, “I hope that doesn’t sound mean!” We laughed.

On Easter Sunday I could eat and stayed vertical and engaged in a beautiful community gathering. On Monday I woke up feeling like a tree in bloom. I felt new. I felt resurrected. And I had put on three pounds. During my 11 o’clock care team check-in meeting I said, “I feel good! Since it is Easter Monday in South Africa, I declare today a national holiday in my home. Today I am going to do nothing but give thanks. Today I rest and bask in what is wonderful.”

As Easter Monday came to a close, I felt like a tree with wilted flowers. I felt saddened that my intentions and actions were so divergent. While I wanted a soft day of being replenished by gratitude, silence, and sunshine, I defaulted into a busy tasky day.

When I was so ill I didn’t have the energy to drive myself to do more, or to criticize myself for this or that. I was too tired to witness my mind reciting my to-do list over and over, like a nervous child trying to cope with the unsettling feeling of dying by being paralyzed from the inside out. No, I was a puddle of breathing guts in skin, surviving.

And now that I am being reconstituted, I find that all my old patterns have rejoined me. I tried to do better on Tuesday, but my day was packed with appointments and paperwork. After a weary day I joined craft night on Zoom, intending to draw. But I got stuck in the waiting room. Instead of texting my friend to let me in, I turned to the Internet and email, hoping to find more guidance on how to tell the kids I’m dying. An hour later I quit the Zoom waiting room. I was a moth caught in a web of dread. I called a friend. “Please,” I said, “I don’t feel well. Come get me.” We went for a walk and ended up sitting on his porch sharing a beer in silence. Then I walked to my partner’s house and said, “I can’t sleep alone tonight.”

This is the last chapter of my life. This is when I get to live my very best life. Now is the time to live the most beautiful, meaningful, adventurous, liberated, joyful, daring, honest, magical, creative, connected expression of my life. I get to live now, even as I am dying. I get to live now.

In my resurrection, I don’t ascend. I fall down instead. I pray, “Please, in this final chapter of my life, please lead me. I don’t know how to live well while dying. Please help me face my fears and everything unconscious that drives me away from the gift of this moment. Please help me see the way. Please help me find the support I need. Please help me see clearly what matters most and help me live into that. Thank you. I rest in you. I trust that you won’t let me die without doing, loving, experiencing what I am here to do, love and experience. Thank you for the life I still have. Thank you that you are here with me, always.”

Update: Resources and tools, angels and spring peepers

7 April 2023

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. 


For lagniappe, here’s an essay by the poet David Whyte on heartbreak. Whyte has a gift for revealing the generous layer under what we usually try to avoid or “get over.”

by David Whyte, from Consolations

Heartbreak is unpreventable; the natural outcome of caring for people and things over which we have no control, of holding in our affections those who inevitably move beyond our line of sight.

Heartbreak begins the moment we are asked to let go but cannot. In other words it colors and inhabits and magnifies each and every day; heartbreak is not a visitation, but a path that human beings follow through even the most average life. Heartbreak is an indication of our sincerity: in a love relationship, in a life’s work, in trying to learn a musical instrument, in the attempt to shape a better more generous self. Heartbreak is the beautifully helpless side of love and affection and is just as much an essence and emblem of care as the spiritual athlete’s quick but abstract ability to let go. Heartbreak has its own way of inhabiting time and its own beautiful and trying patience in coming and going.

Heartbreak is how we mature; yet we use the word heartbreak as if it only occurs when things have gone wrong: an unrequited love, a shattered dream, a child lost before their time. Heartbreak, we hope, is something we hope we can avoid; something to guard against, a chasm to be carefully looked for and then walked around; the hope is to find a way to place our feet where the elemental forces of life will keep us in the manner to which we want to be accustomed and which will keep us from the losses that all other human beings have experienced without exception since the beginning of conscious time. But heartbreak may be the very essence of being human, of being on the journey from here to there, and of coming to care deeply for what we find along the way.

Our hope to circumvent heartbreak in adulthood is beautifully and ironically child-like; heartbreak is as inescapable and inevitable as breathing, a part and a parcel of every path, asking for its due in every sincere course an individual takes, it may be that there may be not only no real life without the raw revelation of heartbreak, but no single path we can take within a life that will allow us to escape without having that imaginative organ we call the heart broken by what it holds and then has to let go.

In a sobering physical sense, every heart does eventually break, as the precipitating reason for death or because the rest of the body has given up before it and can no longer sustain its steady beat, but hearts also break in an imaginative and psychological sense: there is almost no path a human being can follow that does not lead to heartbreak. A marriage, a committed vow to another, even in the most settled, loving relationship, will always break our hearts at one time or another; a successful marriage has often had its heart broken many times just in order for the couple to stay together; parenthood, no matter the sincerity of our love for a child, will always break the mold of our motherly or fatherly hopes, a good work seriously taken will often take everything we have and still leave us wanting; and finally even the most self compassionate, self examination should, if we are sincere, lead eventually to existential disappointment.

Realizing its inescapable nature, we can see heartbreak not as the end of the road or the cessation of hope but as the close embrace of the essence of what we have wanted or are about to lose. It is the hidden DNA of our relationship with life, outlining outer forms even when we do not feel it by the intimate physical experience generated by its absence; it can also ground us truly in whatever grief we are experiencing, set us to planting a seed with what we have left or appreciate what we have built even as we stand in its ruins.

If heartbreak is inevitable and inescapable, it might be asking us to look for it and make friends with it, to see it as our constant and instructive companion, and perhaps, in the depth of its impact as well as in its hindsight, and even, its own reward. Heartbreak asks us not to look for an alternative path, because there is no alternative path. It is an introduction to what we love and have loved, an inescapable and often beautiful question, something and someone that has been with us all along, asking us to be ready for the ultimate letting go.

A painted collage of people's inner state and outward gestures

Caring? Feeling cared for?

A painted collage of people's inner state and outward gestures

Writing: "How cared for do you feel?"

Hanna is part of a writers group at Carlow University, called “Mad Women in the Attic.” She wrote this piece as an exercise in what’s called a “hermit crab essay”—repurposing one form of writing to house the ideas from another. In this case, Hanna uses the familiar form of a survey as the container for a more challenging kind of expression….

Section I: Multiple choice questionnaire: How cared for do you feel?

Thank you for taking time to fill out this questionnaire. We know that facing something like ALS can feel devastating in many ways. This disease not only necessitates costly medical treatment, it also requires the support of caregivers and equipment.  Your need for support will increase as you slowly lose your vital functions and ability to communicate and move freely. You’ll need help for things you’ve always been able to do on your own: reaching, touching, holding, walking, dancing, speaking, chewing, swallowing and, if you choose to go onto a respirator, breathing.

This questionnaire will help us understand how supported you currently feel. Please choose only one answer per question.

1. You are at the very beginning of this journey and many people feel shocked that you might have a terminal illness. Friends from all the chapters of your life are reaching out to you. Do you feel:

a) Held by a large network of care, and trust that it will always be there?

b) Afraid that you will disappear from the front page and into the margins of people’s lives, like the war, the melting glaciers, and in some circles, the exploitation of black and brown people—topics worth mentioning over a mimosa, but not worth getting involved in?

c) Afraid that this illness will deplete your core support group and strain relationships, leaving you more vulnerable?

2. Many of your friends repeat a similar sentiment. There are variations: “It’s so great that so many people support you.” “You are so strong, and I wish you continued strength to navigate all that is coming your way.” Do you wonder if:

a) They need you to be strong enough to handle this, because they either don’t want to or don’t have the capacity to get involved?

b) They need to imagine you are well supported so they feel absolved from showing up?

c) You might really have what you need for this journey?

3. When you sent your friend a letter telling him that you might have ALS, he didn’t respond. Do you:

a) Believe that you have moved from being an asset to being a liability and accept that you might not hear from him again?

b) Believe that he is processing and might choose to support you still?

c) Refrain from trying to make sense of his silence and trust that there is enough help?

4. Your friend writes, “May all the healing light be with you. Sending love!” And minutes later a card from family friends arrives saying, “You are in our thoughts and prayers.” Do you believe:

a) They genuinely care and will be there for you when you need them most?

b) They prefer sending ephemerals like light, love, thoughts, and prayers over offering their help?

c) You can’t know for certain?

5. When you tell a friend about your health struggles, and for the rest of the visit they continue the conversation as if your illness doesn’t exist, do you:

a) Think this might be too much for them to handle and excuse their behavior?

b) Accept that a core part of your experience needs to be rendered invisible in this friendship and question if this is what you need now?

c) Risk telling them how much not being seen in your totality hurts?

6. If a friend offers you an interest-free loan to cover your sudden medical expenses and loss of income, do you feel:

a) Excited that community care could replace dependance on financial institutions?

b) Genuinely grateful for his generosity and care?

c) Deflated because your ability to earn money is dramatically diminishing?

7. It has been six weeks since you said you will ask for help, and yet, you haven’t sent out the meal train or spreadsheet asking for help. What holds you back most is:

a) The belief that you are not doing it right–you could be more clear, you could ask less, there might be a better way to ask?

b) The fear that people won’t show up because you are peripheral, and they are too busy. Modern survival depends on individual income and status; your illness is in the way.

c) The fear that inviting more people in might add to feeling out of control and/or be more work than just doing it yourself?

8. Why are you so afraid of not receiving help when you need it?

a) You can still taste the disappointment when people who were supposed to care for you repeatedly failed to do so. You spent years becoming self-reliant. This illness makes you vulnerable to those same old injuries.

b) All of this feels enormous. Colossal. Out of your control. The cruelest thing ever. You don’t want it to crush you completely, you need the comfort and kindness of others.

c) You know that your brain has a negative bias. Could your fear be wired in survival biology and not rooted in reality?

9. Your fears of not being cared for in your disability are not unfounded. We live in a world where there is often insufficient support for those in need of care and their caregivers. Which example feels most relevant to your own experience of not being there for others? Was it when:

a) You didn’t sign up for your neighbor’s meal train when she went through chemo?

b) Your felt worn out and then disengaged from your friend experiencing bipolar disorder?

c) You only now notice the lack of disabled folks in your circle of care?

10. What keeps you from genuinely being there for others? Is it that you:

a) feel compelled to do more and be more so that you (hopefully, one day maybe?) feel like you belong and have enough? Is all this hustle a jealous lover?

b) experience empathic distress—you feel overwhelmed by all the needs you see?

c) don’t trust that healthy dependency exists? You have curated a manageable existence, defending against the mess of genuine human relationship.

11. When you confess your fear of becoming a “bag of bones that depletes my community,” and your friend holds you saying, “You are loved, caring for you is an honor.” Or when his mom calls and says, “This is not your fault. And we will be here every step of the way. You are not alone in this.” Did you cry because:

a) You imagined being loved even when your care is taxing, even when you have nothing to offer in return?

b) You were overcome by the possibility of not giving up on each other, even when it gets excruciatingly difficult?

c) For a moment the dream of the beloved community where no one is abandoned felt real inside your body?

Thank you for taking the time to respond. You can expect our recommendations within one to two weeks via postal mail.

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.