In Between

Jeffrey painted this during the time I was saying goodbye to my mother who was dying from dementia. It was a long goodbye. And in the painting I’m looking at the empty chair. I also see the small dancing figures on the left. The dance of life continues even in the face of how this life is—that we're here and then we're not here, and the people who we love are here and then they're not here.


Hanna du Plessis

There is a difference between reaction and wise action. Reaction is the knee-jerk thing we default into, often out of habit, sometimes out of fear or our inability to sit with the discomfort. Right action comes from being reunited with ourselves and the world. It comes from taking time to slow down, to engage in the process of our own disintegration and transformation. Right action results as we integrate the wisdom of these blows into our selves.


Boppa's Bald Stories

"Boppa," asked EmmyJean yet again, "Tell us again how you got bald." And Boppa explained it again, differently and even more crazy than last time, and swore it was all true.


Singalong!

A singalong for Hanna's "May birthday"

After the gorgeous snowy serenade under Hanna’s balcony for her real birthday on the 17th of January, we decided the 17th of every month would be Hanna’s birthday.

Dear Mark Knobil captured some moments and shared them in a gallery. Thanks Mark!

View the photo gallery

Here’s the flyer with the original invitation


May 2024: Request for donations

6 May 2024

Hello dear folks,

This update is about money. So many of you have given, with so much generosity. We’ve been stewarding your gifts as best we can, and still have over 80% of your donations in reserve. But now Hanna’s needs have progressed in ways that require us to start spending. So we’re writing to let you know about the financial needs for Hanna’s care.

We are hiring paid caregivers
We aim to hire two people to cover 95 of the 168 hours in a week. Including fees and payroll tax, that comes to $9,700 per month. (Know someone who might be qualified and interested? Please send them our job description.)

We are arranging for a wheelchair-accessible van
Access to transportation is so important for Hanna. We’ve had intermittent access to a wheelchair-accessible van, which was so wonderfully helpful. We need one that she can use any time, and have found a place that offers three-month rentals. The cost for three months is $9500. We’ll start with that, then assess the value of extending another three.

How you can help
One-time donation: use either of the buttons below to make a donation of any size (we’ve learned from your past generosity how small amounts add up to great help)

Monthly donations are especially helpful, because knowing what’s coming helps us manage these monthly costs. Click “Monthly” at the top of the donation form to set a regular monthly amount.

For these two goals—consistent good care at the level Hanna requires, and reliable access to transportation—we are looking at $14,700 a month. For starters we’ve set a goal to raise three months funding at that level, or $45,000.

It’s not a crisis (yet)
Between the funds we started with and your donations over the last year, we can proceed with all of these plans right away. We don’t have to wait. The money we now request will allow us to keep going beyond what we’ve saved, hopefully without ever having a crisis that forces difficult and unwanted decisions.

We’ve set up a new fundraising campaign on GiveButter—chosen because it’s easy for you, easy for us, and we’ll spend little on transaction fees. Note the “one-time” and “monthly” options at the top of the donation form.

Quick donation shortcut

A quick pop-up form, if that’s all you need.

Big Picture

Hanna's Care on GiveButter

Great for seeing our progress and for sharing with others who might want to help.


A little more back story on care

Since December 1 of last year (when I started doing stats), 24 people have provided direct care to Hanna in her home. That doesn’t count many more who have helped organize, clean, feed, launder, entertain, manage, and more. These are people who have helped Hanna with her growing challenges of movement, rest, medication, pain management, nutrition, personal care, communication, travel,…. Every day and night, all day and night. One person has spent the equivalent of ten weeks “on the job.” Many have consistently shown up week after week. More still fill in gaps and come to assist as they are able, however they are able.

It’s an amazing effort. Hanna is SO GRATEFUL for this amazing community, as is everyone around her. What a community of caring, attending, doing whatever is needed through all these changing needs.

But the needs are exceeding our ability to care. Increasingly there are gaps in the schedule we must quickly fill. Hanna’s care is becoming more complicated and more medical. Many of us are doing respectable but amateur duty in physical therapy, medication, nutrition management, etc,. and because there are so many people helping it is difficult (impossible?) to have consistent knowledge and technique across everyone involved.

Hanna needs skilled, dedicated, loving care. Then we can all be there to support, help, and continue the flow of life with Hanna. That’s what this fundraising campaign is for.

Thank you all, as always, for your love and support. More updates soon on Hanna’s life, writing and publication, recent public events, and more.

Marc


Seeking a compassionate caregiver

March 2024

Hello,

Here in Pittsburgh we are looking for a compassionate caregiver with a gentle soul, to be part of Hanna’s fabric of care.

If the job description below sounds like you or someone you know that might be interested in climbing aboard this magnificent ship of care to accompany Hanna and the CareForce on this uncertain journey, please send an email to Erika Kestenberg at careforce@okaythen.net with the following information:

A brief written note, voice note or video clip sharing why this position appeals to you.
Your full contact information, including phone, email, and address.
The date you’re available to start.
A description of your past experiences working as a caregiver, or a resume if you have one you’d like us to see.
Whether you have criminal background and child abuse clearances or need to acquire them. (If there are flags on your criminal background that are not relevant for this position, feel free to still apply and let’s talk about them).

Thank you! Share this link as you see fit, and/or download a PDF of the job description with the button below and pass that along.


Seeking a Compassionate Caregiver for Hanna du Plessis
Our CareForce is looking for a compassionate caregiver with a gentle soul for our special friend Hanna. (You can learn a lot about Hanna’s life, her ALS, and her care by visiting okaythen.net/hanna.)

CareForce is the name we gave our mighty group of friends currently caring for Hanna 24/7. Hanna has been contending with bulbar onset ALS for the last 15 months. She is living in the Polish Hill community of Pittsburgh. As an ideal candidate, you should have a diverse and progressive mindset, excel in understanding non-verbal communication, be patient, and have a deep capacity for empathy. Experience with ALS care is a plus, but not required.

Key qualifications include the physical ability to support 130 pounds, emotional resilience, and excellent listening skills. The role demands strict hygiene practices, including wearing masks and minimizing illness exposure. We value trustworthiness, reliability, a joyful spirit and the ability to work well in a team. An appreciation for a tidy living space, comfort with caregiving tasks, and openness to feedback are important. We are seeking a candidate who is adaptable, self-aware, and willing to engage in an honest dialogue about fit and changing needs.

Monday-Friday, 8am-3pm, $25/hour
Hanna is transitioning from being supported only by her CareForce friends 24/7 to also having paid caregivers. It is exhausting for Hanna, and increasingly dangerous for her, to adjust to a constant rotation of different caregivers. As her needs increase, we need reliable, consistent, and skillful support to help her live well while dying. She is looking for someone who can provide consistent work 35 hours per week, primarily Mondays to Fridays between 8:00 am and 3:00 pm, starting immediately. Consistent support is also needed on weekends and some overnights as well. At present we can offer $25 per hour. We are seeking dedicated caregivers who can stay engaged with Hanna and her CareForce for a 6-12 month commitment, in cooperation with skilled nursing and hospice workers as needed.

Compassionate Caregiver Qualifications
Prior caregiving experience needed. Ability to support moving a 130 pound person from sitting to standing to sitting, with laying down and sitting up in bed, etc. A current driver’s license, clean driving record, and car insurance are preferred, but not required. The ability to maintain transportation to and from Hanna’s home in Polish Hill.

Sample Daily Activities
• Preparation of meals for oral ingestion and the use of a PEG feeding tube (which is easy to learn)
• Assistance with bathing, grooming, oral care, and toileting.
• Lifting and assisting Hanna in and out of bed, a chair and from the toilet.
• Morning and afternoon stretching Hanna’s body
• Assistance in using mobility support devices (chair lift, wheelchairs, walkers, etc…)
• Supporting Hanna’s ability to communicate through a myriad of tools (laptop, boogie board writing tablet, signs, iPad, etc…)
• Assistance with medical equipment (bi-pap ventilator, humidifier, cough assist, suction).
• Support with schedules for Zoom appointments and appointments in and outside the home.
• Administration of medicine for pain management
• Maintaining records of medication, food and drink intake, and other information about Hanna’s condition.
• Movement and outdoor activities
• Light household cleaning
• Assistance opening and reading mail aloud
• Infusing joy, fun, and humor into everyday life as much as possible.

How to Apply
If this sounds like you and you are interested in climbing aboard this magnificent ship of care
to accompany Hanna and the CareForce on this uncertain journey, please send an email to
Erika Kestenberg at careforce@okaythen.net with the following information:
• A brief written note, voice note or video clip sharing why this position appeals to you.
• Your full contact information, including phone, email, and address.
• Date you’re available to start.
• A description of your past experiences working as a caregiver or if you have a resume you’d like to include.
• If you have criminal background and child abuse clearances or need to acquire them.
• (If there are flags on your criminal background that are not relevant for this position, feel free to still apply and let’s talk about them).


February 2024: How's Hanna?

21 February 2024

Dear people,
It has been MONTHS since we gave you a what’s-going-on update. Some of Hanna’s writing appeared here in December, but before that the last update was back in October while Hanna was in South Africa.

This is Marc writing. I’ll do my best to give you the important facts, woven with words from Hanna. And I’ll mix a little unimportant but entertaining stuff, and well… update you.

Feeding tube: Pipe for Eating Good

If you read “A dying girl goes to grad school,” you have a sense of the ways in which Hanna’s physical condition is changing. The biggest change since then is this: on January 31, Hanna had surgery for a PEG feeding tube. There are different kinds of feeding tubes. Hers is a PEG, which stands for “Pipe for Eating Good.” No, that’s not right. It actually stands for three US$20 medical words, but the key part is that word “tube.” Hanna has new plumbing.

Before the tube, chewing and swallowing had become such a chore, it was tiring to consume enough oatmeal, yogurt and lasagna to achieve the goal for daily nutrition. “I’m tired, but I have to keep eating.” That energy tax is a dear thing to pay when the daily energy budget is low. It’s energy Hanna would rather use for connection and creative work.

The hope was that the tube would allow Hanna to eat for pleasure while getting sufficient nutrition through the tube. That’s sort of true, but Hanna’s reaction to an earlier draft of this paragraph went something like this: ”Too rosy. It’s a chore to adjust to formula, my bowels are loose, and I can get nauseous. So there’s still a double labor of food and formula.” One rose: Hanna no longer needs to pass full glasses of ass-flavored medicine across her taste buds.

On Christmas morning, five chicks hatched in Hanna's house. The first-born was naturally named "Little Baby Jesus," or LBJ for short. The gray chick at far left is Shnookie. Photo at right: Shnookie seven weeks later. Yeah, I know.

The two weeks after surgery were terribly difficult. Hanna says “devastating.” Here’s what she says….


Hanna, 7 February 2024

Dear ones, this is the week where I feel defeated by this illness. I feel like I am on a reality TV show, “Medical Marathons,” where the aim is to break the spirit of the patient before the body breaks. There is the post-surgery pain, nausea and healing, the steep learning of wound cleaning and feeding with a PEG, new medications, at least ten more medical professionals and two more companies to establish relationship and interact with (omg, please stop asking me questions!).

But then there is also the fact of ALS: while healthy folks return to the same level of functioning after surgery (or illness, or travel), we don’t. I am contending with significant and frustrating changes. While I could use my phone some before, my hands are too shriveled up to use my phone. while I could turn around in bed (I am a side sleeper), I can no longer turn on my side – for lack of strength and because my right shoulder is often in great pain that will not allow me to go back to sleep. While I could wipe my bottom before, I can no longer manage that either. Communication with my board, tablet and computer is becoming more and more difficult, as if I am moving in a sludge of snow. I am quick to cry and short tempered. I turn into a tantrum after 10pm. These losses compound—to not sleep well, to not stay connected, to not have time to be quiet, to not work at my craft….

And the people around me keep showing up, keep smiling, reading to me at 5am, administering scary pain-meds at midnight and then again at 4am, massaging my sore fingers, bringing me food, brushing my teeth, scraping my tongue. Figuring out systems to helps us learn, tirelessly teaching each other to feed me through a tiny tube, making videos with Honey Dew, a teddy bear body double, to socialize a good way to wipe my bottom. How unlucky and lucky we are—to love a dying being and nurture a growing community.


Sometimes people ask about finances

It’s difficult to describe the labyrinth of systems, policies, agencies and gatekeepers traversed by a few dear people close to Hanna. And and and the surprising well of gifts and grants, offerings and flows. I’ll mention a few of those blessings, then mention where we are with paid care—the real potential money sink.

Hanna has qualified for both Medicare and Medicaid (well, provisional emergency Medicaid; we are reapplying this month), and has policies under both programs. For those not living in the US, this means she is covered by insurance that is mostly designed for “old people” and “poor people.” Being covered by both means most of Hanna’s devices, medications, and doctors’ care is provided at little or no cost.

Thank you to the many who have given to Hanna’s fund through the links on this site. For the most part we have held this money in reserve for future costs of care. We’ve used some for need-it-now supplies or devices, and expenses in support of Hanna’s communication, writing and publication.

Hanna is also benefiting greatly from the many ALS-specific nonprofit organizations, as well as some State of Pennsylvania programs. There are so many kind people who give their time and expertise to people living with ALS. I’ll show you some of the results below. Shoutouts to Team Gleason (portable electric chair and communications tablet), Adam Rossi of adamsolarrides.com (electric trike), and Rahel’s sister Molly for the loan of a wheelchair-ready, ramp-extending, fully modified van.

The biggest costs are yet to come. It’s already the case that, some of Hanna’s needs exceed the capacity of our group of loving volunteers. We’ve started to pay for care from people who do that for a living, and this will surely increase. We’ll never stop being with Hanna every day, we’ll never stop showing up to care. But we’ll need more dedicated care providers as time goes on. That can become remarkably expensive.

So how is the financial situation? I’ll say it’s okay. And as I say that I have a serious look on my face as I gaze toward the horizon. It feels like something expensive is over there….

Molly loaned this wonderful wheelchair-ready van. Hanna tries on her new electric chair. Basically it's Optimus Prime.


Hanna, 15 February 2024

Happy valentine’s week. I LOVE YOU! And for the first time since infancy i can honestly sing along with Mariah Carey, “I can’t live without you.” Can’t eat, wipe my bottom, get up, go to bed, take my meds, feel the goodness of life without you. OMG, utter helplessness,de pendence and all this vulnerability ensconced in your love. What a glorious tragedy.

Sharing something I wrote at Carlow

His job, he tells me, is to see to it that i die of old age. And we both laugh knowing i won’t make it to 48. He hands me the clear plastic tube, three inches long with a blue bubble attached to one end and shows me how to put it where my tongue makes a k-sound, how I should press it against my palate for three seconds, then rest for five for ten reps every other day, as it might slow my tongue from turning into stone.

Then he asks me if I received the EMST, and i vaguely remember yet another masked woman at the ALS clinic handing me a bright green box and, on leaving the room telling me to use it–what is it?– and me diligently packing it in my suitcase to use when I travel and the damn green box following me, unopened, and still, this morning, it sits on my dining room table, reminding me that I am dying and not doing my best to keep living by forcing the air out of my lungs through the respiratory strengthening device: five reps, resting for 5 seconds between blows and one minute between reps, three times a week.

I push the box aside noticing my fingers curling in like a bunch of bananas and now I feel badly for not stretching them as the occupational therapist instructed, but with the table cleared, I do the stretch the physical therapist showed me–five reps of 20 second holds, seven days a week–so I don’t get a frozen shoulder, frozen, immobilized before its time, the time it takes for ALS to paralyze enough voluntary muscles for me to die, die before my time for a lack of trying.

Frozen or slushy shoulder

That shoulder i wrote about just got worse and worse. My primary doctor thinks it’s frozen. My occupational therapist says it’s not frozen yet. Slushy then? I think of my shoulder as the responsibility-absorbing limb in a collapsing body. “Legs you can’t walk, I’ll hold you up on the walker. Leftie, you’re so weak, I take over hand work. Mouth you’re mute, I’ll speak for you. Soul, you dream of writing. Let me help you—even while I am being paralyzed to the degree that i can no longer stretch or lift myself, even when my fingers are inflamed, even if it hurts so bad.”

Burnout. At the moment it hurts so much that i need pain meds in the day and twice at night, and even then I can’t always sleep.

I spent a good day gnawing at the bottom of the despair-barrel. But as I cried in defeat, my runny nose made spectacular snot bubbles, compelling us to laugh and so doing finding a ladder of levity out of the barrel.


The snot bubble from Marc’s point of view…

Hanna really was stuck down in that barrel. Tears and tears. We’d dry her eyes and blow her nose. (Hold the tissue to her nose, close one nostril, two or three blows, then the other, mop up.) All tidy, then it would begin again. Tears and tears, drips and drops, in cycles of sadness. I look at her. She looks at me. She sobs, and suddenly there’s a miracle: a huge glistening globe blooms from her right nostril, shining in the kitchen light with swirling blue and yellow reflections. It pauses, it’s glorious, then it pops. We look at each other. I say something like, “What a wonder!” and we both laugh and laugh. The second time this happens, the spell is broken. There is once again room for delight. Hanna is able to start dreaming again, of museum visits and crepes for supper.


Postscript: cheerful or sad?

Surely you notice the difference in tone between Hanna’s writing and mine (Marc). I’m speaking cheerfully. Hanna is reporting the first-person reality of living in a dying body.

Everyone who experiences this season is experiencing heartbreak. Myself included. We are each, alone and together, learning the art and practice of making a place for sorrow in the much larger home of our being. The pain in Hanna’s shoulder, the curve of her fingers, the weakness of her tongue and entire body will not be ignored. For her the loss is manifest in each moment. She has no choice but to inhabit it.

The rest of us have more choice about the source of our expression. We can speak from our sorrow. We can speak from our experience of life’s glad gifts. We must speak from both, and from the place where the two meet. Hanna still does, despite it all. And I, now writing to you, choose to speak from wonder.

Here’s how this showed up in a recent Zoom session with people from both the US and South Africa, gathered to talk about the practices of healthy relationship with loss.

Hanna: ALS is a bitch. I don’t feel I can keep up with grieving the losses I face. I felt ok up to the surgery and chronic shoulder pain. My reservoir of resilience is low and I’m apprenticing myself to want to live, even when I feel utterly demolished. I struggle to not feel resentful at life.

Hanna: I’m so quick to judge my past actions. I’m encouraged to stay with the feelings, to create a loving home for all of it, even the despair and fuming rage.

Alisa [paraphrased]: It just feels like we’ll keep taking care of Hanna forever. And Hanna, I crave to hear your anger! Trust us to help you practice trusting your anger. We’ll do this together.

Hanna: I feel like going into rage is useless, who is listening anyway? Nothing will change, I can see rage as a waste and will myself into acceptance.

Otto [Hanna’s brother]: Hanna, please tell me what brings you joy now.

Hanna: When you lie in the kelp at Sandbaai and you see the mountains and imagine the pajama sharks and twittering crayfish, there is a deep sense of wellbeing. And I can tap into that, I can see birds, smell coffee, see you, remember fynbos or Oom Bossie. I can hug and watch Netflix and be in the stream of care with all of you buoying me up. And I know the pain and hardship will pass and so will this beauty.

Hanna's writing desk; Pot pie is here!; A directory of links essential to coordinating our "Care Force"

Love and gratitude for you all. Sending squadrons of bright, blooming, buoyant nose bubbles to add wonder and laughs to whatever it is you’re feeling today.

Hanna and Marc


To Speak
Denise Levertov

 

To speak of sorrow
works upon it
moves it from its
crouched place barring
the way to and from the soul’s hall—
out in the light it
shows clear, whether
shrunken or known as
a giant wrath—
discrete
at least, where before
its great shadow joined
the walls and roof and seemed
to uphold the hall like a beam.


Birthday song: community magic

19 February 2024

We will post a most newsy update in the next day or two. But first we wanted to share the magic of this moment from Hanna’s birthday last month. On a clear, cold, snowy night with the moon looking down, a group of friends and neighbors gathered under Hanna’s balcony….


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."