Update 9-24-2026

Today marks 7 complete days of “vacation” at the Marriott Bonvoy Novato. The staff have been fantastic, providing Michelle with a private space to work, wrangling Roxie when she runs out to the lobby, and keeping me comfortable as I recover from UTI and pneumonia.

Five days have passed without a fever. Each night since Saturday, gabapentin has helped me sleep through the night, which has a wonderful effect of helping Michelle sleep through the night.

I am still quite weak. I need help with everything. Getting in and out of bed. Dressing. “Bathrooming.” “Eating.”  Everything!

Michelle and Bia help with all that. Michelle is trying to find a third caregiver.

I am working a bit everyday.  Cool the Earth.  Dancefest.  My own writing.

My biggest daily challenge is to keep from choking on my own secretions.  Just sitting here and typing, sometimes a bit of stray phlegm or saliva hits a trigger spot causing me to cough violently for a minute. Not a big deal in the moment, but aspirating my own secretions is a possible trigger for pneumonia.

I miss the comfy house.  The hot tub.  Watching goldfinches play in the fountain.

The mold remediation and bathroom ADA upgrades continue.

I have to tell myself, “Patience, Grasshopper.”

Meanwhile, friends and neighbors pitch in to help. Neighbors Tom and Sue assembled a sit-to-stand mobility aid, and friends Patty and Peter delivered it. Neighbors John and Shannon and Patrick assembled a trapeze. 

I am lucky!!

Update 9-19-2026

It is difficult to have a UTI for the first time ever — and hopefully last time ever. But the symptoms are subsiding as I am on an antibiotic that fights it.

It is difficult to have pneumonia for the  first time ever — and hopefully last time ever. But the symptoms are subsiding as the antibiotic I am on — the same antibiotic! — fights it.

It is difficult to have black mold under the house for first time ever — and hopefully last time ever. But the mold is being cut away and the areas treated with chlorine to mitigate the problem.

It is difficult to have a catheter thrust into my bladder through the only readily available port, and wear a plastic bag full of pee.

If I look at the list above, it is miraculous that I feel grateful. Not just grateful, but cheerful! 

I woke up this morning after a restorative night’s sleep thanks to a new prescription for gabapentin (Neurontin), which Michelle obtained last night after struggling with the medical system all day and dashing to the pharmacy with minutes till closing.

We moved out of 1409 West Court late on Thursday, with a team effort from Michelle, Bia, and Roxie, as well as an angelic assist from our plumber Andrew Ong, who volunteered his time and truck to move our hospital bed, Hoyer lift, and sundry other items to the Marriott in Novato (Hamilton). So now we are in a comfortable room just a few miles from home. Michelle gives the staff here mad props for accommodating us so readily.

We will likely be here 2 weeks while both bathrooms are demolished and rebuilt. Andrew is doing the plumbing, and a contractor he knows is doing the general work.

I am set up to heal. 

I am also set up to write and work, not quite my usual self, but a fair approximation.

My big complaints are too much sticky phlegm, too much saliva, occasional muscle cramps, muscle weakness, and reduced stamina. My underlying ALS symptoms are still there, in other words. As Joe E. Brown says to Jack Lemmon at the end of Some Like It Hot, “Well, nobody’s perfect.”

I surely do miss my healthy body. But if I could make a deal to get it back, and that deal included losing you, dearly beloved family and friends, the answer would be “Hard pass."

Update 9-17-2026

 Yesterday, after 7 days of undulating fever, fatigue, and muscle weakness, I went to Urgent Care, who recommended I go to the ER.  At the ER, after an X-ray, the doctor confirmed a spot of pneumonia, which, along with the UTI diagnosed 8 days ago, explained a lot about how lousy I felt.

I now have a new antibiotic to fight the UTI and pneumonia.

Also, yesterday, after the plumber began repiping our deficient pipes, he discovered black mold eating away the wood beneath the bathrooms. It’s a big project to mitigate the mold.  We will have to move into a hotel for at least a week.

Meanwhile, the electrical renaissance continues. At some point, we will have a fully upgraded electric infrastructure with failover to a big battery.

Needless to say, all the change, struggle, and chaos make it a challenging time to recover from illness.

On the good news side of the health ledger, I have an appointment to see a urologist today, so maybe I will be rid of the catheter I’be been wearing since the 3rd of the month. We shall see.

And the new hospital bed has helped me sleep longer and more soundly. It’s unclear how much of my sleeping difficulty was due to underlying routine ALS symptoms. But certainly, whatever their provenance, the bed is a big positive step.  I haven’t had a restorative night’s sleep in weeks.  Perhaps, someday, I will.

Michelle and Bia have continued to provide world-class care. I am so limited now.  Yesterday, I couldn’t walk to the bathroom, even with the Rollator walker.  I can’t get into or out of bed by myself.  

We are looking for a nurse who can work overnight so Michelle can get some sleep.  Unfortunately, as I wake up many times each night, she has to wake up too.  I need a sip of juice, my mask adjusted, my bedding remade.  And then she has to work the next day.

I’ll try to update you soon,