Let me describe her before she’s gone. Because I have a feeling she’ll go. That, or I’ll learn to live with her in a way that I barely notice her presence anymore. Call it my new normal.
For brief moments, I already feel like she’s gone. After a nap. After a good night’s sleep. It’s just me and my limitless brain.
Then I go a bit above and beyond, or sometimes not even that. I commence one errand too many. I do something technically simple, like discuss summer plans when I’ve already maxed out my cognitive gas tank.
Then she’s back.
Or, she didn’t actually go anywhere. I just neglected to attend to her and she was forced to reappear.
For the longest time I didn’t even know she had a name.
Right after my brain injury, she was simply a part of me. I slept. I slowly made my way from point A to point B.
One morning, I found myself on the bathroom floor. I think that was the first overt sign of her presence.
As the months went by, I’d begin to feel a massive tiredness coming on, ostensibly out of nowhere.
“I’m going to hit a wall!” I’d say in a panic to my girls.
It was only when I started neuro-rehab, when I began uncovering how I felt in my body that the tiredness started to morph into something different.
People would ask, “What does it feel like?”
And I’d say, “Like a curtain coming down over my head.”
One day in January, my social worker and I were discussing the whole tiredness thing. “Things that never used to make me tired now tire me out,” I said. The things could be physical, mental or emotional. A one-hour walk could feel like a 75-kilometre bike ride. Even writing was a chore.
“You’re regenerating; that’s why you’re tired,” said my social worker. “Your brain needs to give you a break.”
She called the tiredness “a cloud of fatigue.”
“You’ll be in the driver’s seat,” she said. “You’ll see it coming in the distance.”
So I had a new challenge: pre-empt fatigue and regenerate before a crash.
I tried three-minute breaks every 15 minutes. (Talk about tedious dinner dates. Just ask Sarah!)
I’d set my timer to 20 minutes and pop out for a breather.
I tried all kinds of things to deal with fatigue, but something was still not right. I was exhausted from all the work. I was pissed off at being so tired.
In February 2018, I described my fatigue as the heel of a huge hand pressing me down into the ground. In March, it was something pulling me into the earth. In April, it was little strings attached to my eyelashes, tugging them shut…
“What makes work work?” asked Dr. Bicycle, as we discussed my latest blog, and what he said seemed like a successful path to recovery.
“You mean work?” I said. “Or work?”
I teared up.
There were such similarities between the frustration of having to stop doing and the frustration of having to start doing. I didn’t want to stop in the middle of checking email, attending a pottery class, or absolutely anything else, for that matter. Conversely, after a great nap or rest, I didn’t want to get up!
How to find middle ground? How to allow myself to rest and forgive myself for not going 100%?
Dr. Bicycle said that as a kid he had issues with learning to swim. “I would fight buoyancy,” he said. “I was a pro at walking on the bottom of the pool!”
Ditto skiing. “It’s hard to go down if you don’t give in to gravity,” he said.
I was at Shoppers, hoping to get through more than just one errand for once, when I felt the cloud of fatigue descending on me.
At other times I would get angry at myself. I would curse myself that I shouldn’t even try these things. I would make a quick exit before feeling overwhelmed or nauseous or any of the other things that happen when I get overtired.
But this time I had an almost religious vision.
An alternative me draped a cloak-like arm around my shoulders and urged me toward the exit. Let’s go, she said. Let’s take Fatigue home. Fatigue needs rest.
Fatigue was my baby sister. Self-compassion was my mother. Sleep was my friend.
It was the first time that I consciously accepted my need to rest with such grace. We made our way to the car. I pressed pedal to metal, narrowly missing a man crossing Pape.
We got home and proceeded upstairs to my bedroom, where my alternative me sat on the edge of my bed until I fell asleep.
When I woke up Fatigue was gone.
Meanwhile Self-compassion was just beginning to make an entrance.
A few weeks later I was reading, I was meditating, and I was trying to understand what was going on.
Then I saw the formula: Pain X Resistance = Suffering.
Wow! Did I crack the code?
If I resist looking after my brain, then Fatigue appears. If I still don’t pay attention, then she calls in the troops.
Lay it on, says Fatigue. See how Mara feels being a crybaby. Take away her ability to make decisions. Make her so overwhelmed she becomes a five-year-old child.
Fortunately, someone else has stepped in. Call her Self-compassion. Call her my inner goddess. Call her a part of me that’s been missing.
Rest and be well, she says. Then you can get up and do.
[I started this piece on May 8, the day I started my neuro-rehab mindfulness group. It helps brain and spinal cord patients.]
I just added this book to my related reading list.
The Mindful Path to Self-Compassion by Christopher Germer
“When we’re suffering and feel the urge to help ourselves, we’re experiencing self-compassion.”