@itskaitlynj: they never talked to us pre surgery how this might have been an option, so when I woke up from my Brain and spine surgery I couldn’t talk or even move my hands. They were handcuffed to the bed (bracelet reminders) for my safety, so I wouldn’t pull out the ventilator. I had so much swelling from surgery I couldn’t breathe, so they had to wait till swelling went down until it was removed, but waking up like that is absolutely terrifying. I started writing letters on my mom’s hand and the first thing I wrote was an “R” for Rivers, my boyfriend #craniocervicalinstability #chiarimalformation #ehlersdanlossyndrome #brainsurgery #chronicillness #spinesurgery #cci #ventilator