A long-overdue update re-entry, adjustment, plague, and moments of light :

Dear Ones,

I’m sorry I’ve been quiet. I kept meaning to write an update, but recovery, medical appointments, insurance problems, and ordinary survival have taken nearly everything I have.

I have been home for a month from my July tethered-cord surgery and the much longer-than-expected stay in New York. My surgeon found severe recurrent tethering and extensive scarring, far more than anticipated. Recovery is slow and bumpy. Some things have improved, which gives me real hope: the phantom gasoline smell I had lived with is mostly gone, and I have seen some improvement in the neurological problems affecting my legs, bowel, and bladder. But I am still far from my previous baseline. I continue to rely on my rollator, have very limited stamina, and need a great deal of help with daily life.

And the , because apparently our household needed another plot twist, Rose and I both got  COVID. She as  been hit especially hard, and I am trying to recover without triggering a major setback in my already complicated collection of conditions. Meanwhile, I was dx as immunocompromised which is meaning various changes. Mostly, we are resting, taking care of each other as best we can, and trying to keep everyone fed and the household functioning.

Financially, we are still in a very difficult position. The extended surgery trip—including the additional hotel, food, transportation, and changed flights—cost far more than we had planned, and we had to borrow money to get through it. Now I have more rounds of expensive medical appointments, testing, treatments, prescriptions, and insurance costs ahead of me, while our normal bills have not paused for illness. I remain unable to work, and our financial safety net is simply exhausted. The whole family are havjng medical issues… it’s just a challenging time.

If you are able to contribute, send food, or share this page, it would make an immediate difference. Donations are helping us cover medical expenses, safe food for a household with complicated dietary needs, transportation to appointments, and the basic costs of keeping our family afloat while I continue recovering. I wish we could take home cooked food but we have to be so careful between MCAS and Celiac, so DoorDash or instacart are better.

Thank you for continuing to stand by us—even when I disappear for a while because I am too sick or overwhelmed to explain what is happening. We are profoundly lucky to have our beautiful, big, weird, loving tribe.

I send so much love, and some photos from a recent slow walk down to the cliffs by our house. 

Lariaaa