And we were the recipients of such generosity. Here, have my car. Here, stay in my home. Here, let me cook many meals for you. Here, let me spend a week with you, I’ll care for and drive you. Here, have my woolen shirt. Here, i’m going to fundraise so you don’t have to money-worry. Hey, I’ve shined your shoes. Not to mention the gifts you gave me that i will wrap and pack with care.°

I sought clarity on some past hurt, and sometimes received justification that confirmed the gap between us and other times truthful and healing words wove us closer together.

Some people could receive me in my grief and pain, walking me closer to embracing what is. Like my cousin talking me to a stream not too far from where her own baby died. He died in the same year as my miscarriage. And she held me as I deleted the pregnancy apps from my phone through my tears. Or you holding me as I wail and wail and wail for everything that I am losing. Or you staying present when I scream with frustration when i want you to hear but my mouth can no longer make words you can understand. Or when i choke and the smoothie burns like fire in my lungs and nose.

Many people, like my past self, have little practice in “grieving with the dying.” And it was difficult for me and for them too. I wrote a letter sharing my experience of feeling isolated in grief, and that led to healing conversations.

I walk away with a deep sense of connection to people and place. Having been nourished by you, I feel more ready to trust this withering away. My people in Pittsburgh have also been a stellar support system. i am returning to that home with a sense of their arms stretching across the ocean, like the light of the full moon on water, to welcome me

I also walk away with heartache. Many of the places we visited have since been scarred by floods, fires or massive waves. The camp we stayed at at Pilansberg, and hectares of veld around it, are now burnt to the ground. The Marina Beach cafe where you had your ice cream was smashed in by waves. The town of Stanford where we spent a night is under water—the worst floods in a hundred years.

I feel the presence of climate catastrophe, a result of our modern life. And I know that I am contributing to it with all the miles I travel and my Western lifestyle. It is ironic for me, flying back to the US soon, that the airplanes and cars I rely on to bring me home are destroying the home of my body. (Here is an article linking environmental toxins to ALS).

Maybe that is the modern conundrum. I am not the only one in this sticky taffy. We all experience, to some degree, that what secures our comfort comes at the expense of something or someone else. The inequity in South Africa is a burning sore in my heart. I want for all people to feel safe enough and have their needs met, and we are so far from it. I acutely feel the urgency of working together over racial lines to heal and restore and rebuild.

But in my experience not many people share this urgency for action with me. Many people, like my past self, do not see a way to engage in shifting things. I’m not talking about being kind to black folks, or the fact that one has black friends or that one treats your domestic worker exceptionally well. I am talking about being engaged with others, across racial lines, in the work of facing the wounding of our past and the pain of the present and finding the healing and repairing action we need now. For while it is incredibly difficult, it is also sacred healing work that restores us to each other, that gives us back a sense of belonging and I hope, a chance for a thriving future.

It is my dying wish that everyone of us might find our role to play in healing and repairing past harms, and invest in the rainbow nation and beloved community. Smile. Yes, I am serious when I write this because I love you, your children and our country and I want y’all to thrive, together. I want everyone to feel at home, to be at home and not destroy the livelihood of others to do so.

I worry that I am sounding preachy. Please listen through my words to hear the deep ache for wholeness.

Addendum: How’s Hanna?

Some notes for those of you wondering about Hanna’s physical condition, her symptoms, how her ALS is progressing.

Hanna’s back is much better. So far as I know she has experienced only one spasm during the last three weeks.

But her core strength continues to weaken. She can’t really sit up in bed by herself any more. She needs the right support, and has to roll over and kneel on the floor to get up.

She can’t walk as far as she could when she came to Africa the end of July. Maybe half as far, and then she needs support.

Hanna can no longer wash her own hair or under her arms. She feels her arms are weakening significantly. Her left hand is much weaker than her right.

Because of all this, she needs someone to dry her after a shower, and help her get dressed. Eating is becoming increasingly difficult and messy. She needs help cutting food.

This will eventually affect her use of technology for creating and communicating. She continues to write almost daily on her laptop. We have begun the process of identifying and acquiring eye-tracking tech (“I can type with my eyes!”) so she can begin practicing its use for communication, writing, web surfing, entertainment, etc.

And it continues to become more difficult for Hanna’s to communicate with speech. It takes effort for her to be clear, sometimes even with people who talk with her every day. Tools like the speech tablet and “Boogie board” erasable writing tablet are hugely useful.

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