4 October 2023

Hello dear people,
We didn’t mean to let this much time go by without an update. But here we are. And here we are with notes from Hanna on her time in South Africa, with helpful footnotes by Marc. We close with a few points on the question, “How’s Hanna?”—highlights on her condition and experience.

Hanna writes… 

I don’t know what to say about my time here in South africa. So I’ll start with the easy thing by giving you numbers. I spent 67 days here and slept in 14 different homes. I traveled far by car and plane, too many miles to count. And I visited with 80 people between the ages of 4 months and 97 years, sometimes one-on-one, sometimes in a small group. As I am writing this I feel tired and oh so-so-so-so enriched.

I was with my people and I love being with them. I had the joy of my family coming together, taking time off work, flying up, constructing temporary multi-generational homes, preparing feasts, playing games, exploring each other’s stories and life outside the playing games, exploring each other’s stories and life outside the stoep°. It soothed me in a deep way to see them step in as my ability to be a mom and companion recedes. We are cared for.

I was in my country, from visiting a township where people struggle to get by, to staying two nights in a fancy, fancy lodge. I got to be near, if not in, my medicine places—at the foot of a fynbos° mountain, at the edge of the sea with the salt spray in my face (and once falling into it by accident!), for a moment in tea-colored fynbos water, sitting at the ocean whale watching, noticing spring unfurl. The scent of dust and rain, the sight of the southern cross.

I got to have micro adventures, like my cousin borrowing a wheelchair from the hospice and pushing me on a thrilling ride on a red dirt down hill bike path°.

Marc's footnotes

If you’re in the Western US, the porch. If you’re in the East, the stoop. Veranda, if you’re fancy.

An unbelievably diverse, dense, colorful, verdant mix of plants—bushes, grass, flowers—across the Western Cape of South Africa. When sage prairies of the Western US look at sexy magazines, they’re hoping for pictures of fynbos.

Thrilling ride
It is very fun to give Hanna a fast ride downhill in that sporty wheelchair. Imagine the thrill of wondering whether you can bring the whole package to a stop at the bottom of the slope. (Let’s not speak of the trip in the other direction, uphill through the fynbos.)

I got to celebrate two of my beloveds getting married and witness a community celebrating these two men’s love and union. And I got to dance with both grooms, our hearts and eyes flooding with love and laughter.

I loved being with your kids! Looking for chicken eggs in your garden. Drawing together. Holding the twin future Springboks.° Laughing together as the triplets danced. Listening to this person finding his or her way in the world. Seeing you in them and wondering who they will become, wishing I could stay to be here as they grow up.

I got to remember stories with my people. Jumping off cliffs at eighteen.° Burp-tennis championships°. The transition to post-apartheid. Our weddings and our college professors. I got to bear witness to my people’s lives: such joy and such difficulty.

I received the most tender care. My uncle making a fire° and filling a hot water bottle for my chilly feet.° My aunt sewing velcro on my pants so i no longer need a button. My cousin washing my back and my feet, holding my foot to her cheek while crying. My sister-in-law soaping up my body while making me laugh. My sister providing all the meds we need. and my mom, my always mother caring for me diligently and with such devotion, everyday she could.

The South African National rugby team, of epic significance to the country. For one taste of the reasons why, see the movie Invictus. These twin babies were dressed in green Springbok onesies. One baby was smiling, one baby was crying, so no clear divination on the Bokke prospects this weekend against Ireland.

I heard the story of this cliff-jumping from someone who was there, and who told the story at an amazing decibel level. He showed me a picture of the cliff. I think it was easily 100 feet high. “Every man who goes up there hesitates a long time before he jumps. Some of them decide they can’t do it. But not Hanna. She approached the edge and said, ‘Is this where people jump from?’ I said it was. Then she just took a step and jumped, without a thought about it.”

Burp tennis
I look you in the eye to make sure you’re ready. Then I swing my imaginary racket and give my best burp just when I contact the imaginary ball. Follow through is important. Now it’s coming to you. You burp-swing to return my serve. We keep going until one of us fails to burp. 15-Love.

Making a fire
With a propane blowtorch. Yes. I’m used to the idea that you try to start a fire with a single match—at least three sizes of wood between kindling and the big stuff, arranged in a careful lean-to. No stove or fireplace I saw in South Africa offered kindling. Just a stack of big logs and packs of kerosene-soaked biscuits called “fire starter.” And now here’s Hanna’s uncle, filling the stove with big chunks of wood, pushing a nozzle into their midst, and turning on the afterburner.

Hot water bottle
People kept offering me these! And I didn’t understand. We’d check into a guest house, and bottles would be waiting at the foot of the bed with little fuzzy coats on. Here’s the thing. It’s rare for a house in South Africa to have central heating. Winters aren’t cold-cold, but even so the sheets aren’t welcoming when it’s 6 Celsius / 43 Fahrenheit. So after a couple nights of Tundra-Boy prideful rejection, I tried going to bed with a hot fuzzy-coated rubber bottle at my feet. Pretty good, pretty good.

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.

The rest of this update takes a more serious tone, so I will stop these light-hearted footnotes. But before I go I want to tell you that there is one bird here that sounds just like those up-and-down slide whistles. “BEEEeeeooooo. booooEEEE?” And there’s another that yells like it’s afraid of heights.

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.