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…