In Support of Lulu Locks and Kathy Gearon
Hi, I’m Lulu, the one with the bun, on the left.
TLDR: I need to have a spinal birth defect repaired. It sucks, the journey is long long long, but I’m determined and grateful for excellent care/support. I’m finding bright spots where I can.
TLDR: I need to have a spinal birth defect repaired. It sucks, the journey is long long long, but I’m determined and grateful for excellent care/support. I’m finding bright spots where I can.
Photo tax with Kathy Gearon on our 16th wedding anniversary date in a dahlia field.
——
I have tethered cord syndrome.
Basically, my spinal cord is stuck/tethered down at my low back. It’s supposed to float, so every time I bend over I’m yanking on my brain stem. And it explains SO MUCH of a lifetime of “being weird.” Fragile. Needing more recovery time than everyone else. Crashing out. Pain. Exhaustion. My body short-circuiting in ways I could never quite explain.
Over the last few years, everything accelerated. Aging is funnnnnnn.
Along the way, I also learned I have Ehlers-Danlos syndrome, POTS, and MCAS—which are their own full-time jobs to manage. My physical therapist connected the dots and helped uncover the tethered cord.
Suddenly, a lifetime of random shit makes sense.
I’ve been quietly cutting back for years. Less work. Fewer commitments. More recovery time. I HATE IT!
But I keep trying to be my old self in tiny doses.
And I think I’m finally having to admit that I can’t keep doing that without help.
That phrase feels like I’m chewing glass…classic New England eldest daughter.
I’ve run fundraisers for most of my adult life. I know how to rally people, organize things, make the ask, and show up for somebody else.
Receiving? Gross.
Because the next steps are expensive and overwhelming.
Modifying my home is step one. I’m currently in physical therapy 4 days a week. Then there’s absurdly expensive medications (some of which have terrible on boarding side effects), appointments, and an in-countable number of medical adjacent equipment/devices to help me recover safely.
And so… if you’re inclined, there are a ton of ways I could use help.
The Roper Romp is coming up, and this year, somehow, I’m the recipient. It’s at Ogie's Trailer Park in Providence RI on Sept 27
Then on November 7, I’m hosting a “This Is Spinal Crap” gathering at Siren Spirits, also in Providence RI. For this one I’ll hopefully working on t-shirts and some other weirdness. We will need things like snacks and treats if that’s your wheelhouse.
Yes. The dial will go up to 11. IYKYK.
If I’m humbling myself with an ask, it’s gotta be fun.
You could buy a painting from dear Kathy.
www.Kathy-Gearon.com
www.Kathy-Gearon.com
One of the hardest parts has been realizing how small my world can get when so much of my energy goes toward simply keeping my body functioning.
I miss people.
I miss having energy.
I miss being able to say yes without immediately calculating recovery time.
This whole mess makes me nuts.
This whole mess makes me nuts.
Im still by weird self… just in tiny doses.
There are a lot of good things….
Some of the world leaders in treating this are right here in Rhode Island. (OF COURSE because it always come back to RI). I have an incredible community. I have people who love me. I have an amazing wife who has already carried more of this than I know how to put into words. My gardens are full of weeds and flowers. And with a little luck. I’ll get this shit done while the beds are sleeping.
The prognosis fills me with hope.
My physical therapist describes the way I’ve moved through life as “dragging a sled full of rocks.” I cried when he said that. It’s true.
Apparently I’ve been dragging that fucking sled for a very long time.
Updates
Keep up to date as needs change.
Oct 29, 2026
Just a few more sneak peeks of our silent auction!
See ya on 11/7!Surgery is officially scheduled for late December. N...
Oct 24, 2026
Marching towards surgery
Well. It’s funny how the healthcare field seems impossible and slow...
Sep 18, 2026
Ups. Downs. Hilarious merch
Hey friends,First and foremost, thank you for all of yourI can’t be...
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- Created Aug 21, 2026
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