In the spirit of my life the event will be variety show style.

The essence is to say thank you, I love you, goodbye or—as we say in Afrikaans—tot weersiens, until we meet again. You have permission to poke at my foibles! I want to be remembered as a whole human that people can relate to. Make something that captures what it is you want me to know before I depart.

I invite you to reach out to friends we share (see groups I can think of at the end of this message), and collaborate to make something together.

Interested? Thinking about it? See details at the end of this invitation.

No one can tell how long I will live. But here is what we do know:
• The average life expectancy for bulbar-onset ALS is two years from diagnosis.
• It was October two years ago when I started to notice that I am not well. I had my first medical exam in early November.
• I have an unusually aggressive case for my age.
• My neurologist describes me as being in the advanced stages of ALS and I am on hospice care.
• My lungs are so compromised that if I get a lung infection, I‘ll wave goodbye quickly. If I don’t and progression is slow, I’ll see you for Christmas.
• Since we don’t know, we thought it best to celebrate whilst I am still up for a party, because you know I am down for a good time!

(This is Marc writing.)

It is a remarkable time, with the intensity of life in this season, the constant presence of loss and love, the thousand moments every day of participating in one another’s experience of it all, daily difficulties and hilarities.

How is Hanna? Part of the answer is that her symptoms continue to progress. More things take more time and more effort. Movement. Communication. Getting up in the morning. Going to bed at night. She gets around in her powered wheelchair, in the house, around the neighborhood, and on adventures. She uses a walker to transfer from her chair to the bathroom or her bed.

Hanna continues to write, using a device controlled by tracking her eye movements. On the one hand, holy smokes that’s amazing. On the other hand, you know how frustrating it can be to use a lot of software? That, but now you can’t use your hands. It makes so much possible, at the price of great patience and ALS-inflected cuss words.

Pain is still present, especially at night in her shoulders and arms. Medications help manage it, allowing Hanna to sleep for good stretches of hours. But it’s still pain. The people in the “Care Force” have learned a series of stretches and movements we do with Hanna each morning and other times during the day, which help maintain her range of movement and hopefully help manage pain. (Too often we forget or get caught up in All The Things and don’t do daily hand stretches, which is frustrating for Hanna.)

Food is still a pleasure. Hanna gets most of her nutrition through her feeding tube, supplemented by so many people’s tasty and healthy gifts. During these hot days, watermelon and ice cream are essential staples.

Whatever small pleasures there are through the days, the limitations that come with ALS can create a sense of being disconnected, isolated from life and the relationships that are such an essential part of Hanna’s life. If you’re doing something, consider inviting Hanna!

A few recent outings
– Swimming! One of the Pittsburgh public pools has a lift that can help this water-girl get in the water.
– Braai! (S’what Afrikaaners call grilling.) Cook out in front of Hanna’s house.
– Fireflies! Soaking in the magic that is a firefly-filled dusk in Homewood Cemetery

The headline for this book’s press release says,

It has been almost three years since Hanna started the first sketches for this book, and it’s finally available! It’s really funny and gorgeous! Not because I say so*—I’ve watched people get lost in the stories, chuckling over the words and illustrations. I’ve had moms tell me their kids want to hear it over and over again. So yes, Boppa’s Bald Stories!

Here is it’s web page, with pictures, a sample story, and links to buy the book.

With your connection to Hanna and the high probability that there are bald people in your life, you might like a copy! US folks, you can order it just about anywhere you like to buy books online (pre-order until the July 31 release date.) South Africans, I have not yet found where Boppa is offered in your country. I want to fix that!

And say, it would be wonderful if you could post a review of the book on whatever site you’d like. Amazon, Goodreads, Barnes and Noble,….

Here’s the most recent update over on givebutter.com/hanna-care, where we’ve seen a lovely burst of generosity, and where we are still collecting support for the costs of qualified caregivers for Hanna:

“Thank you all, so much. The paid caregivers have made a big difference in the lives of all the people involved with Hanna’s care and thriving. 

We’ve had a bit of a windfall, which will help stretch these donations by directing them exclusively to caregivers. We anticipated high expenses for a wheelchair-accessible van. To our surprise, a local person who is replacing the van they’ve used for their son has offered the old van to Hanna for just $500 (plus the cost of repairs). It’s a wonderful gift that lets us stretch your donations further.”

The amount of labor involved in finding, contacting, vetting, and scheduling paid caregivers is just huge. Many have helped with that work, but here’s a particular shout-out to Erika Gold Kestenberg for her enduring efforts and bulletproof good cheer.

The expense of this is high. So far we are in reasonably good shape, but continually keep an eye on our burn rate, the resource pool, and the calendar.

Thank you all SO MUCH.