Five Months Post-op, Two New Words, and an Epigraph
“You look great!” is the comment I hear most often. I’m grateful.
My hair is growing back.
Instead of a bald spot where holes were drilled into my skull, I have spikey hair!
But “injury” looks different sometimes on the inside then on the outside. It’s difficult to explain the journey I’m on. When I try, I sound like I’m on drugs. But here goes. I’ll give it a try. (The explanation … not the drugs.)
Proprioception: The Sixth Sense
Proprioception is the body’s ability to sense position, movement, and actions.
After my surgery, a blood clot and spinal fluid pressure did some wacky things to my brain. One of the most far-reaching and frustrating is that my proprioception is all out of whack.
Here’s what it’s like:
When I walk, I feel like I’m bouncing on a trampoline, up down, up down with every step.
From the waist down I’m “grounded” from the waist up I feel like an astronaut semi-floating in moon gravity.
From the neck up, my head is not attached. It floats two feet above my shoulders.
I can’t walk a straight line. I frequently feel like I’m going to tip over. My body feels like it's tilted forward.
Like I said: I sound like I’m on drugs! But this is my life right now. All discombobulated and detached and just science fiction weird.
I’m dizzy 24/7 and nauseated much of the time.
Habituation
Habituation is a new word my physical therapist taught me. Basically, what you DO, you get used to DOING.
I’ve been wanting to travel but can’t spend more than five minutes in a car without getting sick. All the potholes, the curves and swerves, the motion of the cars whizzing by and the stops and starts. It’s just too much.
Habituation means going for a five-minute drive, then ten, then fifteen. My longest trip was twenty minutes out and twenty minutes back.
I’m up to 40 minutes!!
Wins
My wins are slow and far between and I’m very proud of each of them.
I bought a set of Equipeak Folding trekking poles.
T
hey have helped my balance when I walk.
It took a while to learn how to use them (right hand/left foot ... left foot/right hand) but I did it! At first, I went a block or two. Very slowly. Thinking. Concentrating. Which foot. Which hand. After using the trekkers for a month, I could walk on my own.
I’m up to about three miles now!! Freedom! It’s fantastic.
Last week, I picked up my poles, tucked them into my arm pits and ran a block. It felt like “me” to run again.
I’m sure it looks ridiculous as I weave and tilt and run. I bet I look like a drunk chicken sticking out her wings. But I don’t care! I ran!
To help my floaty head and body, I bought a Henkelion weighted vest.
It weighs six pounds. When I wear it, I’m no longer floating in thin air. Most of me is grounded. It’s just my head that keeps floating. But I’m hopeful one of these days my head will return to its rightful place on my shoulders.
A quick peek into my life right now would look something like this.
Eye therapy twice a day. Walking twice a day with poles and vest. Balance exercises every day. P.T. once a week. Sacral-Cranial massage once a week. Tai Chi. And lots of rest, sleep, hydration, and quiet.
I’m extremely thankful that computer time, typing, and writing are going better and better.
I can spend an hour with my writing before I need a break.
My forthcoming book, The Clean Daughter: A Cross-continental Memoir, is going through edits. and I chose a Rainer Rilke quote to be the epigraph (beginning quote or poem) in the book. I’ve always loved Rilke’s words. What surprises me, is how they continue to speak to me in my new brain-recovery life.
“Have patience with everything that remains unsolved in your heart.
Try to love the questions themselves, like locked rooms
and like books written in a foreign language.
At present you need to live the question.
Perhaps you will gradually, without even noticing it,
find yourself experiencing the answer,
some distant day.”
~ Rainer Rilke
Thanks for joining me on this strange journey. Life is, if nothing else, a very interesting gig.
love always,
Jill