Hanna and Ti Wilhelm reading Hanna's work at Carlow

Gratitude to my donor

Hanna and Ti Wilhelm reading Hanna's work at Carlow
Hanna and Ti Wilhelm reading Hanna's work at Carlow

A letter from Hanna to the donor who made it possible for her to continue participating in the Carlow University MFA in Creative Writing. 

Dear Donor,
Thank you for what you have made possible for me. In November of last year I started to develop symptoms. Coming from a healthy family and having been well for most of my life, the five months between symptoms and diagnosis was a black night of swimming in an anxious sea. When I was diagnosed and given two years to live with the prospect of a slow and unstoppable demise, I fell into questioning whether life was worth living. But a disease like ALS does not permit long spells of despair, because there remains a ridiculous amount of work to do to make sure you have medical coverage, the equipment you need, accessible housing, etc. I felt like this darn thing consumed me.

The call from Tess (director of the Carlow University MFA in creative writing) and the possibility of the MFA opened a much needed avenue through which life returned to me. I had been wanting the structure and support of Carlow’s MFA program, but it wasn’t financially possible for me. Being white and educated already, I didn’t feel like I deserved a scholarship—there are people who need it more than me.

So I want to thank you for what you made possible for me. Whereas this terminal illness asks me to end my career I felt so passionate about, you gave me a new beginning. Whereas this curbs my mobility, you helped me get out and travel to Ireland! Whereas this shrinks my world of engagement with others, your generosity opened a community of writers to me. Whereas this confines me to a chair, through my writing I am going to wonderful and frightening places. Whereas this can take over my life, the monthly deadlines have given me permission to prioritize and claim my creative practice. Whereas this can make me feel like deer turd and like a good-for-nothing writer, the monthly mentor meetings and feedback are building my belief that my voice is worthy of being heard. Whereas this has taken my ability to speak from me, this program is giving me voice. Whereas this illness will ultimately take my life from me, my words will remain.

Yesterday I cried, not spoons or cups, but buckets of tears. A friend asked me what I was feeling, I wrote on my board, “How would you feel if you can no longer speak and you are losing your ability to lift your limbs, chew and swallow, breathe without support or travel home to be with your family?”

He paused and said, “I’d feel afraid.”

I wrote on my board, “I am terrified.”

He held my hand. We breathed together. Then he asked, “Can I tell you what helps me when I feel afraid?” I nodded yes.

“I remember that I am loved.”

Thank you for your love that is a lifeline in this dark time. I am beyond grateful to you for choosing to invest in me, and to Tess for seeing me and introducing me to you.

I respect the fact that you are anonymous. And also, if you ever want to meet in person, please know that I would love that.

Wishing you so much wellbeing.

Sincerely,
Hanna


A dying girl goes to grad school

The first two weeks of January 2024 (right now!), Hanna is attending a two-week intensive / residency as part of her MFA in Creative Nonfiction work at Carlow University. This means being on campus for part of each day, with students and faculty who aren’t familiar with her life with ALS. 

Before the semester began, Hanna wrote the following letter to her colleagues at Carlow.

Dear Carlow companions,
I’m so glad to join you for the January writing residency. I am writing because for the first time in my life, I am attending grad school in a disabled and dying body. Going on a writing retreat with a terminally ill person might be new for you too. So it’s bound to be awkward, but maybe I can share some things that will help us both get a feel for what it may be like.

I am not in control. On the ALS functional scale, I have lost 60% of my abilities. That’s a lot of body no longer functioning well! I’m like an old phone who might suddenly run out of battery life mid-workshop, please excuse me. My legs seem to miss running and will break out in a tremor at the weirdest times. Just welcome it.

I need full time care. A beloved friend, Laurie, is flying in from Montana to be my companion. She is cut from the same cloth as Rachel Watson and will fit right in. I’ll be leaning on her and if we need more support, we will definitely ask you.

Left: Off to the first day at Carlow in 2024, with Laurie and Marc. Right: navigating campus in the new folding electric wheelchair.

I look and act disabled. Which means that even though I feel like a songbird inside, I am disabled. I even have the parking sticker. In my able-bodied life I found it trying to relate to disabled folks and you might too. If you feel the urge to pity me or be overly nice and helpful, please go get a coffee and drink it slowly until you feel ready to try seeing me in my wholeness.

You will see little of me. This disease is a jealous bastard and has me breathing with a BiPap for twelve hours each day. It requires me to stretch daily so my limbs don’t turn into kettle-fried crisp. And eat, omg, I eat with a tongue that moves like a geriatric snail. So on a good day I will join you for three hours. I will not be able to generate much writing during the residency.

I am mute. I communicate by writing on a board, which Laurie will read. I miss talking! And I hate being talked at. I invite you to share silence with me. If I write on my board and invite you with a gesture to read, please read aloud to bring my voice into the room, so I know I have written legibly and you have understood. When we talk together, please ask me questions I can answer clearly with a yes or a no. If you ask two questions at once, I cannot respond and be understood. For example: Don’t ask “Would you like coffee or tea?” Please ask, “Would you like coffee?” Then wait for a reply, and if I say no, ask if I would like tea.

The paralysis is affecting my limbs and core. It is like the dial of gravity keeps turning up and my limbs seem to be stuck to surfaces. I heard yesterday that I am approved for a portable electric wheelchair which I don’t know how to drive yet! I hope to get it before the residency. You can also bet that I will be the slowest mover. Please excuse me if I roll in late!

My lung capacity keeps lessening. Any respiratory disease (a common cold, a flu, a mysterious sniffle) can land me in the hospital and I will not recover to this level of functioning again. This is a source of stress for me. I want to be in community, be loved and held and not get ill. My neurologist made it clear that I must mask at all times and invite others close to me to do so, and to up their hand washing game. Please be on the side of my safety. If we share a writing space and you are able, please mask up. If you or someone in your household has a respiratory infection, please keep your distance from me. It’s hard for me to ask, because I am a hugger-bear, but please be conscious of transferring cooties – don’t touch me without consent.

Because of this I will not join you for dinner, which is a sadness (I love hanging out, I love good food) and a relief (because I am gross).

I am gross. After your speech muscles go, your swallow functions follow. So be glad we are not sharing a meal! And even if we don’t dine together, my gross warning persists: I am no longer able to manage my saliva well and I can choke by swallowing my saliva (and disrupt your reading). With lungs that can’t cough so well, there will also be excessive throat clearing. I’m not trying to get your attention, I just have phlegm in the wrong place.

My emotions are right there, ready to surface. Don’t be alarmed if I cry. Don’t be scared if my laughter sounds like a donkey in labor or if I vocalize frustration in a moan. Part of dying is being vividly alive also. I feel stripped of my filters. Please just be in the moment with me. There is nothing to fix.

Despite all of this and no makeup, I am still a beautiful badass and I am excited to be with and learn from you as we keep writing, shifting, breaking, righting and remaking ourselves and this world.

With so much love,
Hanna

P.S.
I’m attaching a drawing—Laurie wrote a children’s book for which I made the illustrations.

A few of Hanna's illustrations for the book, "Boppa's Bald Stories."

Ireland, Beet Juice, Sea, Moon, Gratitude

In June 2023, Hanna attended a two-week writers’ residency at Trinity College Dublin. She wrote the following after her return. 

Oops! You all received notice about this post before it was fully cooked. The words are ready, but the photos aren’t. We’ll replace the duplicate and not-relevant-to-the-story photos in a bit. Meanwhile,… hello! (And a newsy “How’s Hanna?” update is coming soon.)


Beet juice and water

Our two-week writers’ residency at Trinity College Dublin ended with with a weekend in Sligo. After a full week of workshops, we headed to the west coast of Ireland by bus. Most folks packed a small suitcase with clothes and a backpack for books and computers. I too had my suitcase and backpack, plus my ventilator case, a bag with ventilator pipes and my humidifier and a fifth bag with my protein powder, smoothie ingredients and blender.

Thankfully Rachel came over to help me pack, as everything is more difficult with weakening hands and a careful-not-to-fall walk. She helped me carry my bags. For a moment I stood in front of the Graduates Memorial Building surrounded by my five bags, feeling the afternoon sun shining onto me and the solid granite steps. And then, like ants carrying cookie crumbs, my new friends whisked my bags to the bus stop.

The same kind hands repeated this when we arrived at Saint Angela’s College. Everyone settled in, then went into town for dinner. But after a morning of class and a four-hour bus ride I did not have the energy to go. So I stayed in. My room had a view of the lake. The sky and lake were dove gray, as was my mood. There is a particular aloneness in staying behind not because you want to, but because you can’t keep up. At least I had two treats—A beer Matthew gave me on the bus and some droë wors (dried meat sausage) we got when Brian discovered a South African store at our pee stop.

I opened the big window that looked out on Lake Lough Gill. The cool air smelled of moss and pine. I reclined on the couch. Then Edward, who works at St. Angela’s, walked past my window. I needed a wedge to keep a heavy internal door open. I got up to ask if he had any extra door stops. He said he would bring me one. But instead of walking off to get it, he stayed to tell me that he too writes, and how he loves Tolkien, and how the first and second world work. How he believes in ginger and turmeric, but not in mindfulness. How he minds his dreams. I listened while shifting my weight from one leg to the other. When he paused, I took the opening and said, “I don’t have much energy. Please excuse me, I am going to sit down.”

I didn’t sit for very long before there was a knock at my door. There stood Edward, with two door wedges in his right hand, one wood, one plastic. And in his left, a bottle of local beet juice.

“Here,” he said, handing me the juice, “This is good for your energy.” I inspected the bottle of crimson juice. He could tell that I was pleased by his gift and proceeded to tell me of other things that might help with low energy. I told him that my lack of energy is a result of a terminal illness. He didn’t quite know what to say, so he said everything that came to mind. I listened until the end of his story about bee stings that stimulate the lymphatic system that can cure many illnesses. Then I excused myself again.

The next day the beet juice went into my smoothie. But my body was not used to this quantity of root vegetable essence. During dinner on Saturday evening it felt like someone was stitching my stomach lining to my diaphragm. I couldn’t finish my dinner. Back at home, my travel companions heard about my discomfort and told me to wait outside their dorm. One came back with ginger tablets, the other with peppermint oil. The oil mixed with water soothed me to sleep. As I settled, the corners of my mouth turned upwards.

Ancient walls line roads and fields in Sligo
Hanna reads her work, assisted by ventilator and amplifier


First-hand lake, second-hand sea

On Sunday morning Rachel walked me down to the lake. It was warm enough to swim! Donna held up a towel to create a changing room for me. I was for this water like a desert was for rain. I couldn’t get in quickly enough. But the ragged rocks bit into my feet, soft from city shoes. I was afraid I’d fall. Sienna offered her flip flops. M. and C. took my hands and walked with me until I could lower myself into the bosom of the lake to be caressed by the silky water.

There are no words for how much I love to swim.

C. walked me all the way out of the lake and then returned to swim some more. I hurriedly dried myself, as I still needed to pack before we left. Again M. helped me carry my things to the bus.

The lady at reception said, “Please come back!” I replied, “I definitely will.” It was not quite a lie. My heart really wanted to. But my body, this body, is dying. Then Edward came up to shake my hand and said confidently, “I will see you again, Hanna.”

Part of our group was staying behind to go swim in the ocean—something I longed for just as much if not more than swimming in the lake. But I didn’t have the energy. I dragged myself to the back of the bus. I wanted to come back. I wanted to swim in the Atlantic and have dinner at B.’s place, then take the train back to Dublin. I wanted to, but I could not. B. came to hug me goodbye. A small storm of loss rumbled through me and spilled into public view. R. came and sat beside me, put her hand on my back, and offered me a tissue..

On Monday, back in the air-conditioned classroom of Trinity College, T. took a seat next to me. She is one of the people who stayed in Sligo to visit the ocean. When the reading ended she handed me a tiny see-through shopping bag. In the bag were three shells she picked up at the beach. I held one to my ear and I heard the song of the sea. My heart swelled and tingled like bubbles on a breaking wave.

That night I woke up in the wee hours unable to return to sleep. I reached for the large shell. It fit snugly in my hand. I rested my thumb in the smooth opening. My phone played the sound of the ocean and I imagined myself being carried.

In these two photos, Hanna and Elsa exhibit their good taste in fabric prints


Circles of care (one of them the moon)

On our second-to-last evening, we had a student reading at Books Upstairs. The shop greeted me with that good old bookshop smell. To my right was a table with all the classics bound in colorful fabric. My fingers itched for them, but I walked past and up the wooden stairs to a small salon style space with tall windows overlooking D’Olier Street.

Each student got to read for up to four minutes. I felt proud of the people around me. When it was my turn, I put on a tiny mic and ramped up the volume on my little speaker. I used my ventilator to help me take generous breaths after reading each paragraph. The audience had a printout so they could follow along. My friend M. bought me the Lady-Gaga-style mic and formatted the printout. Many friends contributed for me to afford the ventilator.

To be heard even as my words become mush and voice recedes is to be validated as a whole person.

After the reading we went to a pub. T. got up and offered me her seat. B. put half a pint of Guinness beside me. One of the mentors that I hadn’t met pulled her chair close to mine. She told me about a friend of hers who had passed away from ALS. We proceeded to have a lively conversation that helped me feel seen and heard, even though I was using mostly a pen and paper and occasionally my phone to communicate. When she got up, she wrote down her email address and said, “Please. Please email me. I am here for you in any way I can be.”

After the excitement of the evening wore off and the beer settled in, we realized that the kitchen had already closed. It was past my bedtime (I had been really good at getting to bed early!) but my hunger drove me into the street with the rest of the crew. The only place close and open was an American diner!

After a burger and fries we made our way back to Trinity, our fingers sticky with ketchup. It was after 11pm. I was grateful for B.’s arm that held me steady as we walked through the bustling street, over bumpy pebble stones and alongside a man clearly high on something. We arrived at Trinity where many of our group stood gathered under the hundred foot high stone constructed bell tower. Our program said that there would be a rose moon reading at midnight, but I had no hope of being awake then. I was barely awake as I stood there, so I headed for my bedroom.

It was, and is, difficult for me to discern how much I can do without overextending myself. Once in my room and ready for bed, I felt a longing for the gathering. So I zipped my coat over my pajamas, slipped the room key into my pocket, and went out to find them. The group of writers had formed a circle under the tower. Inside that was a smaller circle made of fresh cut roses, and in the center were candles.

I arrived at a special moment, I could tell. The circle opened and drew me in. Later I heard that moments before my arrival the group offered prayers and wishes for my health. Standing there, braided into the ring, I was given the candle and the opportunity to set an intention for the new moon. All I could think as I was being held so tenderly by this group was, “Thank you, thank you, thank you.”

In these two photos, Hanna and Elsa exhibit their good taste in fabric prints


The kindness of life in loss

After check-in for my flight home, the lady at the counter ordered a wheelchair. I waited in the designated area. The gentleman who came to get me arrived too soon. “May I have three minutes to say goodbye to my friend, please?” I asked. “Of course,” he replied. “Take your time.”

Amelia, a friend from highschool, picked me up after the residency and we had a fabulous four days on the west coast of Ireland. Both of us grew up in a world with no tolerance for tears. And now, here we were at Dublin airport about to say goodbye whilst both of us knew this might very well be the last time we saw each other. My tear tide was already rising.

“Well,” she said, “I think we can do what we were taught to do. We sweep the fact of your illness under the rug and pretend it doesn’t exist.”

“Let’s do that.” I replied. We leaned into a long hug.

I said, “Come visit in Pittsburgh.”

She said, “See you when you travel through London again.”

We disengaged from the hug and I sat down in the wheelchair. James the gentleman helper wheeled me off. I felt empty, as if a tide had pulled back leaving only a vacuum pulling at my throat. Waiting for the elevator doors to open, I saw Amelia out of the corner of my eye. She had followed us. She stood there, blue Café Nero coffee cup in hand, smiling. I smiled back.

Then the doors opened, and James pushed me into the small space. I looked back over my shoulder and Amelia appeared within view. She waved, I waved. As the stainless-steel doors slid closed, Amelia kept moving to hold my gaze until the door snipped our eye contact like scissors and the escalator started to ascend. The corners of my mouth curled down and tears began to roll. I held back a sob. When the doors opened again, I used my sleeve to wipe my eyes. I felt a warm hand on my shoulder followed by, “Are you okay, miss Johanna?” It was James’ voice.

But really it was the kindness of life, meeting me once again.


Video: Grappling with Acceptance

Hanna's voice: Grappling with acceptance


I do not come from the grieving type. We have stood at graves of beloveds who died of cancer, car crashes, murder. We didn’t grieve. We moved on. I google grief and see that it’s a process: denial, anger, bargaining, depression, acceptance. “F-that,” I say, slamming my laptop closed. “No time to be a sad sack.” Naively, I try to white-knuckle acceptance.


Hanna & Co. at Creative Mornings Pittsburgh

Every month, people in cities all over the world gather in person to talk about a common theme. These gatherings are what Creative Mornings is all about: free events that bring people together for meaningful conversation.

The theme for May 2023 was “Acceptance,” and Hanna was invited as the guest speaker for Creative Mornings Pittsburgh. Acceptance—a challenging theme for someone who has been diagnosed with ALS!

Hanna brings her usual frank honesty, joy of life, and invitation into the bigger story. She was assisted in this presentation by a group of friends: Tiffany “Ti” Wilhelm, Marc Rettig, Erika Johnson, Erika Kestenberg, Michelle King, and Seth Payne. The hosts of Creative Mornings Pittsburgh are Nathan Darity and Bridget Mullins.

It was quite a day. Watch the video below, and look below the video for a link to the text Hanna wrote in preparation for her talk.

CORRECTION: “Grief is praise”

Folks, at 4:23 in the video there is a mistake in the subtitles that we didn’t catch. And what Hanna really said is way more interesting than what you might get from the titles!

She doesn’t say, “Grief is spread.” She says, “”Grief is praise.” Then later, “I feel a lot of praise this morning, because….”

The idea that grief is praise comes from Martin Prechtel’s book, “The smell of rain on dust.” You can read a short piece from Prechtel on this idea here: Grief is Praise on the Daily Good site. 

"Grief expressed out loud, whether in or out of character, unchoreographed and honest, for someone we have lost, or a country or home we have lost, is in itself the greatest praise we could ever give them. Grief is praise, because it is the natural way love honors what it misses."


READ HANNA’S TEXT

Hanna wrote this piece in preparation for this event. It is not a transcript of the video, though it is nearly that for the parts which were read by Hanna’s friends at the event.

Download PDF of "Grappling with Acceptance"

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?


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.


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.”


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.