One-year tethered cord surgery update

Transformation What a year a difference can make. One year ago, I flew home from New York after having surgery to fix a tethered spinal cord - a manifestation of my hyper-mobile Ehlers Danlos Syndrome (hEDS). I woke up after my surgery on the precipice of transformative emotional and physical healing - an experience several … Continue reading One-year tethered cord surgery update

Three month post-SFT surgery update

Chronic illness dismantles our life force, but what does it look like to reassemble it? As I reflect on the three-month mark since my surgery for tethered cord syndrome, I realize that recovery can't be captured by a list of symptom improvements (though scroll to the bottom to Table 1 for the TL; DR version). … Continue reading Three month post-SFT surgery update

Flying for surgery during the pandemic

Like most with ME, I have worked pretty hard not to get COVID. My goal was to keep my family and me safe until the vaccines arrived, knowing the pandemic is not over, and we are still at some risk while vaccinated. Even with my doomsday mentality, I never could have guessed I would be … Continue reading Flying for surgery during the pandemic