Hello Friends,

Our dear friend Becky needs your support. We all know how uplifting it feels to show up for someone we love — and how deeply held we feel when our own community shows up for us. This is one of those moments.

Becky's Diagnosis

After 22 years of debilitating, complex chronic illness, Becky has finally found the root cause: severe craniocervical instability (CCI). This means that the ligaments that hold her head to her neck have failed, causing longterm compression and dysfunction of her brainstem, veins, nerves, and spine. Imagine carrying what feels like an unsupported 100lb bowling ball that is constantly crunching your brainstem and spine and making basic life functions extremely difficult — that has been Becky's reality for decades.

You can see in the photos Becky’s tears of relief, shock and joy during recent testing when her head was mechanically lifted off of her spine! Now, at last, there is a path forward to longterm relief for Becky.

Upcoming Surgeries

Becky will undergo multiple surgeries very soon: one to fuse her head to her neck, and another to remove bone that is currently blocking her blood flow. She is additionally experiencing dangerously low intracranial pressure, and further investigation to find and treat the suspected leak cannot wait.

Becky has recently completed invasive pre-surgical testing with a neurosurgeon in New York who specializes in exactly these procedures, and she will return to NY April 1 for the major fusion surgery, and further invasive testing. Additional surgeries and follow-ups will take place in the months ahead.

Funds raised here will go toward the extensive medical costs of surgeries, travel, and a year of intensive recovery and rehabilitation.

Creating Home

Alongside all of this, Becky has been doing something beautiful: building a home on Orcas Island. With vision, an open heart, and the help of community, she is in the process of completing a cabin that will support her in thriving — in both body and heart. The cabin is well underway (see the photos!), but Becky’s energy and modest building fund have been diverted to attend to these unforeseen medical realities.

Funds raised here will help finish the cabin and give Becky a sanctuary in which to rest and recover after these intense surgeries.

Please give whatever you are able, and share this widely with anyone who might wish to contribute.

With deep gratitude,

Djuna Devereaux

For those curious to learn more:

Doctors suspect that a viral infection earlier in Becky's life — possibly contracted while she was living in East Africa at age 21 — triggered an attack on her connective tissue that went undetected for years. There is a growing subset of patients with debilitating, complex chronic illness who have been found to have CCI with a suspected infectious origin. If this resonates for someone you love, the blog https://www.mechanicalbasis.org/ is a wonderful resource, with a link to a new peer-reviewed publication on the topic.

And for the detail-minded, construction tasks that remain for Becky’s cabin include building small entry decks, installing remaining doors and windows, electrical wiring, wall and ceiling insulation, sheetrock, ceiling and flooring, installing a heat pump, siding, awnings and interior detailing.