Back from Our Retreat, Straight Into the Storm
Back from Our Retreat, Straight Into the Storm
We’ve been back for over a week now, and well… the sh*t has officially hit the fan. I had about a million updates swirling in my head, but only now am I finally sitting down, strapping on my writing cap.
After 10 days of blissful retreat—being utterly spoiled by James' longtime friend—we landed back home, smack dab in reality. But wait… those 10 days were real too, weren’t they? So maybe I should say: we’re back in the messy, exhausting, why-is-life-like-this version of reality. Denial was so much easier while we were away. More details on our home and living situation in another update (which I’m secretly hoping Coby will take on—hint, hint).
For now, here’s what’s been going down in the last week and a half:
We made our second trip to UCSF since James’ diagnosis, and let me tell you—our neurologist is the bomb. She waltzed into the waiting room with a spring in her step, greeted us like old friends, and had us both cracking up within minutes. She’s got this perfect balance of being hilarious and fun and totally dialed-in when it matters. Basically, if we’re going into battle, we want her leading the charge.
She ran James through some physical tests and noticed some setbacks in his movement. As a result, she prescribed Sinemet, a common Parkinson’s medication, and warned us about possible side effects. But so far? We’re in the green! Even on the lowest dose, I can already see improvements in his mobility.
We also had a heart-to-heart about our massive failure with the CPAP machine. She wasn’t too worried but encouraged us to throw in a few “machine nights” here and there, just to see if we can make peace with it. Baby steps again.
On another note, we’ve both joined support groups—James in one for folks dealing with neurodegenerative diseases, me in one for caregivers. And let me tell you, it’s been a game changer. Who knew a bunch of strangers could make you feel so much less alone? The other day, I had to leave my group early, and when I came back to check on James, he was laughing. Turns out, his group had been cracking jokes about their own forgetfulness. Because, really, what else can you do but laugh sometimes? He even got invited to a little music session in Sausalito this Sunday.
Last week, when the rain just wouldn’t quit and I felt myself slipping into a hole, I pulled myself out by doing what always works: counting our blessings. And let me tell you, they are many. This community. The kindness that surrounds us. The love and support pouring in from friends, neighbors, and even people we’ve never met in person. It means everything.
And of course, we keep Mabelizing (yes, James invented this perfect word)—which means obsessively watching every little video and photo of our granddaughter Mabel, sent with love from my amazing daughter. It’s the best medicine.
Through all of this, you have been our team, our safety net, our knights in shining armor. We truly wouldn’t be standing as strong without you. Thank you for being here. Thank you for giving a damn. We are grateful beyond words.
With love and endless appreciation,
James and Margit
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