My Brain AVM Story: In the Recovery Room
After the open-brain surgery to fix my brain AVM, I awoke in the recovery room to find myself still intubated. They didn’t want to extubate me, my father explained to me, because they might need to go back in and see if they could get they could get a little bit of brain AVM that they hadn’t been able to get the first time. Did I understand that? Blink twice if I understood.
I understood. I blinked twice.
Blink twice if you give consent for them to do that.
I understood that this brain AVM experience might not be over.
Plastic on my Tongue
So I lay in the recovery room with my Dad and my sister, Rachel, with a tube down my throat. I knew that the tube was a necessary evil; we’d been through this with my mother a couple of years ago. But I didn’t know from our experience with Mom that when there’s a tube in your throat, there’s also an annoying piece of plastic pressing down on your tongue. I couldn’t get my tongue around it and I really wanted someone to move it.
But when my hand went toward my mouth, the nurse assumed I was going to rip the tube out. “Don’t let her do that!” she said sharply, and suddenly Rachel had grabbed my arm. “You need to leave that in,” she said.
I don’t remember what I was thinking. I was probably on auto-pilot. My brain, in its post-surgery wisdom, decided that I should start finger-spelling to my sister. After all, we’d both been Brownies. She should know what I was doing.
“Plastic on tongue. Move it.” Was what I meant to sign. I got through “Plastic” before Rachel started shaking her head.
“I don’t know what that means,” she said.
My heart sank. I just had surgery and still have some brain AVM in my head and I remember how to finger-spell, I thought. Why don’t you? I scanned the room for the nurse. She appeared to be helping someone else. I thought I had some time. I tried to open my mouth, to point at my tongue.
“We’re going to have to restrain her,” the nurse said, suddenly. She’d come out of nowhere! The next thing I knew, my wrists were being tied to the bed.
“They’ll Just Put It Back In”
I wasn’t done yet, though. I wasn’t even thinking about the news that there was still some brain AVM in my head and that I might need more surgery. I just really, really, just wanted someone to move the piece of plastic off my tongue. Convinced that I could make Rachel understand if she’d just watch my finger-spelling carefully, I managed to work one of my hands out of the restraints.
The nurse caught me immediately. “Oh no, you don’t,” she said. I didn’t have a chance of getting out of the restraint this time, I soon realized.
“You can rip it out if you want,” Rachel said, her eyes sad. “But they might need to get the rest of the brain AVM today, so they’ll just put it back in.”
(Looking back now, I realize that I had every right to insist that the tube be taken out…not necessarily by me, but that’s another story. I’d already consented to having another procedure done to get the rest of the brain AVM if necessary, but I could have changed my mind about that at any point and rendered the tube unnecessary, unless there was a reason for keeping it in that I wasn’t told about. But if l knew that at the time, I wasn’t thinking about it.)
The Frustration of Not Being Able to Communicate
That was the first time I was restrained in the hospital. If I’d known how to communicate what I wanted, I sure would have, because I didn’t have any intention of ripping that tube out of my throat by myself, even with the fearful prospect of more surgery looming over me, and there really was no reason to restrain me. I don’t remember what happened after that, but I imagine that I went to sleep fairly quickly. I was, after all, just out of over 12 hours of brain surgery.
The second time I was restrained was a little more dramatic; I’ll tell that story another day. But here’s something to think about: If you had a disability that left you unable to communicate with people (or unable to communicate effectively with people), what behaviours do you think the frustration would drive you to? What assumptions do you think people might make about how are you in general based on those behaviours? Would those assumptions be true?
Oh, I do remember something else about that day…my father said, “None of your mother in you, is there?”
That’s probably one of the nicest compliments I’ve ever gotten.
Afterthought: They never did go back in for the brain AVM. That is a story for another day.