A Sense of Awe

This is an archived post that was originally published at beyond-terminal.com

I recently attended Hennepin County Public Library’s Pen Pals event where Anthony Doerr talked about his newest release, “Cloud Cuckoo Land.”

The research that went into constructing this book is mind-blowing. I learned about ancient Greek texts, space travel, and climate change, all at breakneck speed. Gosh, can he talk fast! What stuck with me the most though is the degree to which Doerr delights in the learning process as he plots out his novel.

One of the things that Doerr said during the discussion was that we need to “…strip away the scales that form over [our] eyes.” Basically, we, as adults, need to recapture some of that awe and curiosity that children so naturally have as they make their way in and learn about the world.

I grew to have a sense of appreciation for every new task that my body could do after I lost all of my skills. It’s not that I didn’t get frustrated and discouraged – I had plenty of that – but mixed in-between these tough emotions was a feeling of profound gratitude. Look at what my body can do!

The excerpt below is a scene from my sixth-grade year, when I definitely felt more discouraged. That said, as long as my body could do the things that it could do the week before, I felt some degree of hope and a desire to work hard.

It helped that I had two incredibly hard-working parents as my role models. On those days that I could attend school, my mom went to the University of Minnesota’s medical library and copied article after article about rare diseases and read these at night, highlighter poised in her left hand. Further, my dad worked around the clock. While he was present with us at dinner, he would pull his briefcase out every single night and continue working.

If my parents worked this hard, there was no reason I couldn’t as well. Further motivating me was the desire to prove The Doctor wrong. Who was he to say what I could and couldn’t do?

_________

This excerpt is from Chapter 6, “The Threat.”

Today is a Thursday and that means that it’s spelling test day. Since I can’t write much anymore, my parents purchased a computer. It’s super bulky, about as deep as it is wide. We’re the first ones in our neighborhood to have one. It was a big deal for my parents to get this, especially with all the doctors’ bills that keep piling up. So I know I should be grateful. I know I need to make this work.   

Since it’s gray outside and there isn’t much natural light, I turn on a bright light above my desk and sit down in front of the computer. Just like last week, my mom’s going to iron my dad’s work shirts while she gives me the test. She sets up her ironing board and looks over at me. “Ready?”

I nod.

“‘You’re,’” she says. “You’re going to do well on this test.”

I look at my hands that are clenched into fists on my lap. They lie on my blue jeans like dead weights.

Move your hand, move your hand! 

I need to be able to do this. I could do it last week. There’s no reason why I shouldn’t be able to do it now.

So I scream at myself again: Move your hand, move your hand, move it!

I need my nerves to wake up. My vocabulary may not be at a sixth-grade level, but I know other words — medical words — that many people my age don’t. I know all about nerves and demyelination. The Doctor uses the word demyelination a lot. He’s even drawn pictures of what this looks like during my appointments. I’ve learned that normal nerves are supposed to have a coat that protects them. But that many of mine don’t — and that’s part of the reason why I can think a thought in my brain but my body doesn’t move. At least not right away.

I hate all of this, yet I’m willing to keep trying as long as there’s some response. Today it takes 15 seconds from the time I start saying the command until my fingers start to move. I stare while I watch my fingers unfold just like the petals on a hibiscus do at the beginning of the day.

The hibiscus is one of my mom’s favorite flowers. She fell in love with it when she vacationed in Hawaii four years ago. Once back home, she told me about this amazing flower, talked about how each blossom was alive for just one day. I’d never heard of a flower like this until that point. And now I find myself thinking about it again.  

When I review the highs and lows of my day later tonight, I remind myself that I’ll need to count this moment — when my fingers still moved — as a “high.” This thought is quickly followed by another one — how depressing. Could my life get any more depressing? There definitely are times when I do think that it’d be easier on everyone if I just disappeared. However, when I find myself thinking this way for too long, I tell myself that this isn’t something that my parents should have to go through. No one should have to lose one, let alone two, children.  

Andrew, my parents’ first child, was born at 28 weeks. Just like other premature babies, he needed help breathing and was put in an incubator. Everything seemed okay after this transition. But after the feeding tube procedure, everything spiraled downward.

In third grade, on what would have been Andrew’s 9th birthday, my mom told me something she’d never told me before. “To this day I wonder if something went wrong when they inserted the feeding tube,” she said. “I wonder if they perforated his esophagus.”

I’d never heard of the word “perforated” before, but I knew enough to understand that my mom thought that a mistake could have been made. And had this mistake not been made, Andrew would be here. I’d have a living older brother. So while I do have some dark thoughts every now and then, I know that I’ve got to fight. I’ve got to fight for my parents’ sake — and mine too.  

I rub my reawakened fingers along my jeans. I feel the coarseness, all the little fibers. It drives me crazy that everything is so hard, but I’ve got work to do. The next step is to have my right pointer finger strike the “y.” With this in mind, I concentrate on keeping my pointer finger extended as I move my other fingers back into their fisted position, all the while raising my arm up, up, like it’s on an elevator. I then zero in on the “y” key and move down, down, and click the right key. This is all ridiculously hard, yet seeing the “y” with the little cursor after it blinking back at me on the screen gives me some hope.

Once I’ve typed y-o-u-’-r-e and my hands are back in their fisted position in my lap, I look over my shoulder at my mom and see that she’s already onto her second shirt.

“Oh, OK, ready for the next one?” my mom asks.                

_________

It wasn’t until three years later, as a ninth-grader, that I was able to coordinate both sides of my body without constantly thinking about what I need to do. And, even then, I often was slower than other kids, especially when it came to writing. But more days than not, I felt a sense of awe that I could move my body in the ways that I could.

What shocks me is that even I, now a 47-year-old adult, sometimes take my body’s ability to move for granted. After what I’ve lived through, how could this be?! How can I work at capturing that sense of awe again?

Another thing that Doerr said that stuck with me is that we need to break up our habits to feel that sense of wonder and awe. Perhaps this is part of the reason I delight in traveling so much. I delight in learning, and I’m never pushed to learn more and think differently than when I travel.

And the reality is that not everything goes smoothly when you travel. The four of us traveled to our second-favorite state, Colorado, over our fall break. We were stuck in standstill traffic on the interstate for over two hours. Literally did not move an inch. It turns out there was an accident involving a semi-truck carrying hazardous materials. We missed our plane, which meant we would not be getting the kids back to school Monday morning.

Was it possible to turn this into a chance to learn to be more flexible and resilient? I wondered. Further, could we encourage our kids to think about those who were directly involved in the accident and how their lives may have been irrevocably changed rather than focusing on how we were going to miss our flight? Oh, our poor kids – they weren’t up for a “lesson” at this time (hah!). We did eventually reflect on these things, although it was much easier to put things in perspective when we were back in Minnesota and well-rested!

This all leaves me thinking about how my life experiences impact the way in which I view the world. What about you? How do your life experiences impact the way in which you view the world?