News Update

Hello dear friends,
Here is an update that mixes words from me and Hanna. The biggest topics this month have been her back pains and her time in South Africa. To avoid confusion, I’ll put my own words in italics, and Hanna’s in regular type.

Oh, and this—people have commented on past updates saying they want pictures of the pet tadpoles and preying mantis. I aim to please. See the gallery at the end of this update.

Hanna hurt her back

In early July, Hanna had her first ambulance ride of her life. Earlier that day she and Seth went canoeing. There was a moment when she leaned back, expecting support, and there was none. Pow. Hours later the pain was still great, and it was ambulance time.

Hanna’s back problems started two decades ago. She says,

I would have occasional episodes of pain that would a couple of days. They were bad enough to land me in bed—it was too painful to move. But they would eventually wash over and away, and I would be back to an active life.

The condition worsened during the pandemic, leading me to specialists and x-rays. I was diagnosed with degenerative disk disease, and the only way to combat this condition is to strengthen my core. So I began to swim again, and do daily exercises. But ALS weakens your muscles, and Bulbar-onset ALS starts that weakening in your core.

After the canoe trip, her back would go into a spasm when she moved. Here’s how Hanna describes those hours after the canoe incident.

My spasms changed from occasional short episodes to endurance contests lasting… god knows how long. Seth says an hour. I was gripped in pain, howling, panting, shaking uncontrollably in my whole body. Snot and tears everywhere. Like a scared animal, Seth says. They finally started to settle when Seth brought my breathing machine. The shaking lasted all the way to the emergency room, where the wonderful staff provided care and a shot of valium.

The cosmic wires got crossed! I was asking for a whole-body orgasm, but with my poor speech they heard “whole-body spasm.” Thanks ALS 🙂

She jokes, but the weeks after were difficult. Try to sit up: back spasm. Someone tells a funny joke: back spasm. Sneeze: back spasm. And so on. This led to the core group of folks around Hanna to organize full-time care. We set up a schedule, and made sure that someone was there all the time.

Two falls

Every time I visit the ALS clinic, they ask this question: “Have you fallen yet?” They ask because your first real fall signifies the beginning of a different chapter. The end of mobile freedom. Your future is now splattered with grab bars, handrails, sharp furniture edges wrapped in foam, walkers, wheelchairs.

Less than a week after the trip to the ER, Hanna had her first fall. She fell in her bedroom, and landed on her back. Mercifully nothing broke. But it did re-injure her back, making it impossible to sit up and finish a meal without a spasm yanking her off the chair.

The back pain continued and sometimes spiked. Over time the episodes became less frequent and less severe. And now she is feeling better.

The second fall was in South Africa, where she has been with family since the last days of July. She fell down some stairs, arrived at the landing at the bottom of those stairs, then continued down the next flight. !! Again, we feel so grateful that the damage was marginal: a sore and swollen ankle, some scratches and bruises. Lizzie lent her a cane that she uses on and off and Elsa borrowed a walker for her to use.

Eish! (as they say in South Africa)

Hanna in South Africa

I haven’t said a peep lately. In part because I was knackered. In part because I am having a hard time typing. My left hand is becoming a rake. And in part because I am able to do less and less with the time I have. Seth is helping me dress and perform tasks like opening a tube of toothpaste.

I want to say a few things.

IT IS WONDERFUL TO BE HOME
The familiarity of the things I grew up with meets me like a receiver meets a telephone (That’s a line from Seth’s daughter Early.) The familiar brands I see in the pantry, like Black Cat peanut butter. The taste of Boerekos (“farmer’s food”)—pannekoek, sosaties en pap. The scent of spring in a jasmine flower or a braai at the boeremark (In South Africa they don’t barbecue, they braai). The shape of familiar trees like a kapok boom. The sound of my family laughing around the dark wooden dinner table.

IT IS A JOY TO BRIDGE MY WORLDS
It has been such a delight to have my worlds meet and enjoy each other. Rachel (my niece) is 11—a year older than Early and a year younger than Otto. Together they are a wild fire and a whirlwind of excitement and laughter. My SA family have been exceedingly wonderful hosts. My mom brought us breakfast in bed, my dad braaied a beautiful Sunday lunch and now we’re at my sister’s. She ordered pizza and made one of my favorite desserts—a peppermint crisp tart.

IT REMAINS A CHALLENGE TO BE ILL
This afternoon I sat in a block of sun light. I couldn’t see the shadow move, but twenty minutes later the patch of light had crept over my legs and fallen onto the floor beside the bed. ALS is like that. My body has changed so much in the last seven months. Being back home but not being as able as I was before illuminates the change. The most difficult thing is to speak and not be understood. The second is the diminishing capacity to walk, run or climb with confidence. And tied to that, the use my hands.

The saddest moment of our trip was being at the sea. The water was rough, the waves were high. In my usual form I would run into the wildness and play in the waves like a seal. But i couldn’t. The best I could do was stand in the water, holding onto Seth so I didn’t lose my balance and fall in.

I am reminded everyday of good principles to live by, like “one day and one symptom at a time,” and “grieve what is lost and then focus on what is possible.” I remind myself that I even though I have a sense of this illness’ progression, I have no idea what awaits, including wonderful things.

CONTINUED GRATITUDE!
In the moments after I tumbled down the stairs, I felt so much support and care. I remembered Mr. Rogers’ saying, “Look for the helpers.” But my cynicism slid in said, “Ja, they are here now. But they’ll be off playing mini-golf tomorrow and you’ll be all alone.” Not long after I opened my email and saw your air miles rolling in. And I thought, “You are wrong, cynicism.”

Ya’ll’s love and support is life-giving. Thank you to everyone who helps logistically, who makes me food, who offered me their Delta miles! Thank you for financial support (my ventilator’s humidifier broke, I need adaptive undies, my home needs equipment, I need a hand brace and a retainer to help with swallowing, etc. etc. And thanks to you I am able to meet my needs.

I want to write you all love notes, but my energy doesn’t match my intention. Please take this as a personal note of thanks!

I promised you tadpoles and mantises…

Hello,

This is a short-term request for a very specific kind of support. Here’s the situation in nice businesslike bullet points, just like the ones they use in presidential briefings….

• Hanna is in South Africa with family, friends, and all the creatures and memories of her home.

• She is experiencing sporadic and quite difficult back pains. These started two decades ago, continued off and on, worsened during the pandemic. As ALS weakens her core, the back issues are becoming more persistent.

• A dear friend worked conversational magic to score Hanna a lie-flat bed in the first-class cabin to South Africa. That’s the ONLY way to make a seventeen-hour flight possible for her.

• Now we are working on making the same arrangement for Hanna’s return flight, without spending the $8,000+ required for a first-class seat. We’ve had the brainstorm of using air miles. The price in miles? 495,000.

Well, we thought we’d try.

If you have accumulated air miles on Delta or one of its partner airlines, and would be willing to donate some of them toward this possibility for Hanna, please contact Marc Rettig before the morning of Thursday, August 17.

Thank you, fellow sailors on these seas.

Marc

Hello all,
This is Marc, with a short update. Some are wanting to know how things went with Hanna’s trip to South Africa, and some have asked about the event we announced in the previous update. Here’s a wee bit about those two things.

Successful landing in South Africa

Hanna, Seth and the kids have safely arrived in South Africa, They are now in the wide strong arms of family and friends there.

Thanks to the efforts of the “TLC team,” especially Erika aka “Goldie,” Hanna had a first class seat for the 17-hour flight from Atlanta to Johannesburg. Given the way her back troubles have been flaming up, this was really the gift that made the whole trip possible.

Report on “Design for the Inevitable” workshop

As we mentioned last time, Hanna and I held a conversation hosted by the Pittsburgh chapter of the Interaction Design Association. Our friends Raelynn and Ashley, partners in the design firm Dezudio, wrote a really great summary of the event.

Read Raelynn and Ashley’s report here.

Debriefing after the event, Hanna and I shared a few ways this evening felt important.

– It felt sooo good to be hosting these profound conversations together. This has been our work for more than a decade, and it still feels right.

– This exploration of how our collective creative work might embrace the “shadow” aspects of human experience is hugely important for our times. We’d like to engage more with these questions. And we will.

Thanks to Jack Moffett and the rest of IxDA Pittsburgh, and warm gratitude to Ashley and Raelynn for writing such a great summary.

More soon; ways to help

We’ll send a more detailed update soon. I know I’ve not said anything this time about symptoms (some progression), morale (usually high), or needs (thanks to soooo many). And there are announcements coming about publication of Hanna’s writing and work. (Preview: see the new main page of okaythen.net.)

Since Hanna is in South Africa, the Pittsburgh food train is turned off until her return. Meanwhile we continue to collect and save against future expenses. You can find links for that here: okaythen.net/hanna/hanna-help.

Thank you all. Here’s wishing you good flow and an open heart in your dance with what life is bringing you.

Marc

“Establishing a relationship with grief, developing practices that keep us steady in times of distress, and staying present in our adult selves are among the central tasks in our apprenticeship with sorrow. This is the hard work of maturation. In the traditional language of apprenticeship, this would be called achieving mastery. In the language of soul, this is the work of becoming an elder. An elder is able to touch grief deftly and is able to craft sorrow into something nourishing for the community. Teacher and grief specialist Stephen Jenkinson says, ‘Hold your sorrow to a degree of eloquence, whereby everyone around you will be fed by your efforts to do so.’ Becoming skillful at digesting our grief makes us a source of reassurance and stability for the wider community.”

Francis Weller, Wild Edge of Sorrow

Hello sweet people,
This is Marc, with an update on many aspects of Hanna’s life, progress, and needs. I’m working from an outline that Hanna provided—these are my words but it’s her story. The headlines:

– Ireland was great! There is so much to be grateful for.
– ALS is always moving
– July: lots of doctor visits, and some needs
– What’s next: South Africa!

Ireland was the best thing ever!

If you’ve followed the updates you know that Hanna was in Ireland on scholarship from Carlow University. She had two great weeks of writing instruction, coaching, and community. Each morning she had a session with a mentor. Then most days lunch, naps, writing and energy maintenance filled the rest of the time. There were a few adventures and explorations in Dublin, and a few days after the workshops to travel to Sligo. What was there? Roads and fields lined with stone, goats, horse carts, green landscape, and the sea. 

Hanna says it felt like a vacation from ALS. She’s home now, reconnected with the logistics of living with a healthcare system that requires hours of labor and attention in order to receive its benefits. Also she’s reconnected with the wide strong arms of caring friends and loved ones.

Hanna’s lists…

Feeling such gratitude for everything that did not happen in Ireland

– No COVID: Coming home and putting the unneeded COVID meds back in the medicine cabinet. The exposure of long flights feels risky, and COVID would be a huge setback. All good!
– No falls: There was no need to use gauze and tape as she didn’t fall! (She had a few near misses, but the bruises on her right arm tell the story of a good catch.)
– No pain: Her back didn’t hurt until she came back, so put those pain meds away.
– No diarrhea, no loss of appetite or weight

Feeling so incredibly grateful for all your contributions!

– Everyone who helped getting ready for the trip.
– Everyone who contributed financially.
– People who took care of SO many details (power converter, smoothie maker, sufficient supply of medicine, communicating needs to airlines, researching and acquiring communication aids, getting pants that fit! To name only a few)
– Help with so many expenses (international phone plan, medical travel insurance, cost of being there…)

ALS is always moving: this is a time of transition

Hanna’s mom was here with her for a month, and soon after came the trip to Ireland. Now that season has ended, and as she cares for herself Hanna is finding that her body’s regression is more clear.

– Her hands are getting more clumsy. She dropped her glasses, broke a very special bowl, burned herself.
– Her core is weakening. Standing is becoming more difficult, which makes cooking and cleaning more difficult.
– Standing up from a seated position is becoming more challenging. Getting down on the floor and getting back up from the floor is becoming really difficult.
– Weight: Hanna gained weight in Ireland . Was it the baked beans and eggs at “The Buttery” or the fish and chips or the half-pints of Guinness? When she returned home, Hanna started losing weight. One response: we are adding more “Give in Kind” slots for food delivery in the rest of July.

Looking forward into the Autumn, Hanna might need to transition to more full-time care, as dressing and basic hygiene are also becoming difficult. Her space also needs adjustments to be more disabled-friendly. There are services out there for this kind of help. We are learning how to tap them and making our way through the process of qualifying and registering. And we are scoping out possibilities for a more accessible place for Hanna to live.

July holds many doctor’s appointments

– Pulmanologist to check in on how she and her lungs are doing
– The ALS clinic for a meeting with the whole team there
– A preliminary visit with a surgeon to discuss the feeding tube operation
– A check up with her primary care physician
– Another swallow study as her choking is increasing quite a bit
– Hopefully a consultation with a doctor about her back pain

Help in July–open slots for meals

Might you sign up for food delivery?
We’ve added more slots, which you can see if you scroll down on the Give In Kind page. It’s easy to sign up, and you can either bring food to Hanna’s house, arrange for a delivery, or send a gift card. (Do read the “Special Notes” above the calendar before you decide on the food.)

What’s next?

Hanna will be in South Africa through August and September. Seth and the kids will join her for a few weeks in the beginning, and Marc will join her in September.

In preparation, we’re working to get the right insurance in place, acquire and configure a tablet that can help her communicate in both English and Afrikaans, and generally do all we can to smooth her travel and support a joyful experience.

“How are YOU?”

A friend sent me a note last week that simply read, “How are you?” That was the whole note. I get that question pretty often. A concerned tone: “How are YOU?”

One
I walked to Hanna’s place to pick up some papers. When I arrived I found another dear friend getting out of her car to visit. As we were about to go into Hanna’s house, another car pulled up. A third friend! We went up the stairs together, and so started a kind of party. Catching up on news, eating snacks from five different countries. The door opened—it’s a fourth friend! Mixing gin and tonics. Hanna’s boyfriend Seth arrived. Conversation swirls, people clearly love each other. We discuss what games might create a level playing field for everyone, regardless of speech ability and hand strength. What if everyone has to use a speech app? A load of laundry gets done, the kitchen is swept, the tadpoles and pet mantis are fed.

We are woven into a fabric, able to hold grief and joy at the same time.

Two
I have email from a relative. We enjoy and love one another, but don’t communicate very often. She says, “I understand that life is not happy for you with the worry of Hanna and I dread to think how she feels.” In composing a response, it’s not only that I want to assure her that “life is not happy” is the wrong picture. It’s that I would like to offer her the possibility of a relationship with loss and death other than worry, unhappiness, and dread.

It is possible to accept that there are torpedoes, but refuse to sink.

I wish that woven fabric and sturdy buoyancy for her. And for you. Tight fabric, few torpedoes, and buoyant life to you.

Marc

Hello dear people.

This is Marc writing. It has been about a month since the last “How’s Hanna?” update. SO much has happened. Hanna’s mom was here much of that time, and other family has visited. There were outings—to a cabin in the woods, to “The Ruins,” to tables and porches and gardens and ponds all around. And seemingly bottomless engagement with systems and infrastructures of care.

I’ve talked with a few of you recently, and heard some common questions. Maybe those questions are a good guide for this update.

How is Hanna?
The surface, physical answer is “pretty great for someone with a terminal diagnosis.” She notices some progression of her symptoms—speech difficulty, strength, breath, energy. At the same time the routines of sleep and energy, diet and weight are paying off. She has gained ten pounds since her low point in March. Her days have many moments of joy, she’s getting things done. I imagine she would say she can’t do everything she wants or thinks she should do. But if you’re distant from Hanna you should think of her as someone still very much engaged in life.

New gear aplenty
Over the past month, a lot of helpful gear has arrived at Chez du Plessis. A few are helpful on the voice and communication front. This includes a “boogie board”—a thin, butt-simple tablet for quick messages like, “A small oat milk latte please” or, “Baie dankie, my skattebol.”

There’s an iPhone app called Speech Assistant that makes it quick for Hanna to type things which the app then speaks out loud. It uses a proper-sounding English-accented lady voice that I find pretty amusing.

And thirdly, Hanna has a voice amplifier like you might see someone using who’s leading an exercise class. It has a thin headset microphone and a not-too-big amplifier and speaker on a strap. She can wear it around her neck and be heard in a large room or at a noisy dinner without working hard to raise her voice. We learned from a speech pathologist that the effort to be heard contributes to Hanna’s depleted energy at the end of the day. This voice amplifier helps.

And there’s more! The arrival of the ventilator and cough-assist device was a big day. When you hear “ventilator” you might picture someone at a hospital hooked up to a machine that breathes for them. This is not that. This is portable, much like a CPAP device for people with sleep apnea. Hanna can use it at night with a mask to help her breathe well while sleeping, or she can use it during the day with an attachment that looks like the stem of an oversized smoking pipe. If she’s talking a lot or otherwise feels short of breath, she can put that in her mouth, inhale, and the ventilator helps by providing pressure. She gets deeper breaths with less effort. More blood oxygen, more energy, better days.

Which is all great. At the same time, all these devices are reminders that Hanna is someone who needs them. The day of the ventilator’s arrival was emotional. Difficult. It’s wonderful to have good deep breaths, it’s wonderful to be understood and participate in conversations. And it’s difficult to realize you need help with these basic aspects of life.

How is Hanna? Stubbornly joyful.

How did Creative Mornings go?
It was really great. It was moving, profound, and very huggy. They are working to edit a video of the session. We’ll post it here as soon as it’s available. Meanwhile here’s a photo gallery.

So is the diagnosis final then? Still having tests?
Yes, the diagnosis is final. There’s a rhythm of visiting the ALS Clinic every three months, engaging the clinic’s various specialists as needed in between. Clinic visits include a breathing test and strength tests as well as a standard protocol that’s repeated each visit to monitor progress of symptoms. When Hanna returns from Ireland she will begin a new medication (“tastes like bunny dook!”) which for many people slows progression and extends life.

I hope it’s okay to ask, but how’s the money situation?
The short answer: this is currently not a source of stress, and there has been incredible progress.

The longer answer: we’ve made great progress in enrolling Hanna in programs that qualify her for different kinds of insurance (hello, Medicaid), which will greatly reduce or eliminate some of the most expensive co-pays. There’s still work to do on this front, but things are falling into place.

Then there are expenses we can only anticipate without knowing when they will arise. That’s why we started the donation fund last month, and…

Holy smokes, you all. The generosity. The fund is now just short of $18,000. More than half of that came from two donors. The care, connection, and generosity has left me speechless and has touched Hanna so deeply.

I can feel embarrassed by this bounty. I talked with my neighbor about this. She is a cancer survivor, well familiar with what it’s like to navigate the finances of a serious illness. Her advice to me: “It’s too early to relax. Don’t say no to offers of help, thinking you’ve got it covered. There will come a time when the costs go up and the story is no longer a fresh concern for people. You’ll need everything you can gather.”

As a bright-side-looker, I feel it’s important to hear balancing lessons like this. So we’re going to leave the donation link up. A thorough and humble thank you to all who’ve given in this way. (And others in so many other ways!)

Thank you. Thank you.

Marc

Hello,

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

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

See summa yinz there!

Marc

Hello dear folks,

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

Here are the headlines….

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

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

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

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

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

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

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

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

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

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

There are now two ways to help financially.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Francis Weller, The wild edge of sorrow

Hello dear people,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yes, there is daily joy. 

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

Marc

Hello dear people,
(This is Marc writing.)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love and buoyancy to you.

Dear friends,
Here are some moments from my week.

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

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

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

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

I shake my head left to right.

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

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

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

I keep crying.

“I’ve been praying. Is it working?”

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

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

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

– – –

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

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

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

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

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

Feeling so many things including gratitude,

Hanna