Learning to Lean Into Fear

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

In 2015, my friend Courtney Baechler’s daughter Sophia died unexpectedly at the age of 7. After a loss such as this, it’s hard to imagine how you’ll continue on. How do you not live in constant fear that another tragedy is about to happen? My friend said that, had she chosen to live in fear, her will to live would have ended the day that her daughter died. I admire Courtney for the clarity of her vision and the fortitude it takes to live this way.

My parents could have chosen to live in fear as well. As mentioned in an earlier blog post, they lost their first baby, Andrew. He was born at 28 weeks, and just like other premature babies needed NICU support. Everything seemed okay until Andrew had a feeding tube inserted. To this day, my parents wonder if the feeding tube was inserted incorrectly and his esophagus got perforated, leading to his death. My parents mourned the loss of Andrew – they still do to this day – and they chose to get pregnant again.

As an adult, I know that the feeding tube I had as a child saved my life. By overloading my unresponsive body with thousands of calories per day, my metabolic system slowly learned how to process food again.

Knowing Andrew’s story as an adult, I can’t imagine how scared my parents must have been when they recognized that the feeding tube was the best route for keeping me alive.

To complicate matters, the nasogastric tube was removed in the morning and reinserted in the evening, since I was having therapy during the day and I was re-learning how to do basic things, such as eating solid foods. That meant the risk that something could go wrong was exponentially increased.

Of course, we didn’t know this back then, but it would turn out that I would need to do this procedure every single night for close to 365 days.

__________

The following excerpt is from Chapter 9, Scare. I’ve been in the hospital for a couple of weeks when this scene takes place.

In The Hospital, my schedule consists of physical, occupational, and speech therapy. It’s not a lot of fun, but it’s predictable. It’s midway through the third week of August when the predictability of this schedule all comes to a screeching halt. For some weird reason, I wake up in the middle of the night and start coughing uncontrollably.  I just…can’t…stop…coughing. Beth (my nurse) rushes to my bedside. “Are you okay?” she asks.

Between wheezes, I say, “My…chest.” The silver rails on the sides of my bed are up like they usually are, but for some reason they seem even closer than usual, like I’m running out of space. I move my stuffed Gund polar bear from my side to the end of the bed so I feel less cramped. Ugh, my chest is so tight.

Beth checks my vitals. “Hmm….” Beth’s mouth forms into a frown as she makes notes in my chart. “I’m going to turn the feeding tube off for now,” she adds.

Ten minutes later, Beth reappears. “I’ve scheduled an x-ray for you. I’m worried that the tube was inserted incorrectly and you’ve aspirated some formula.”  

Aspirate? I wish these people would talk in a language that I could understand.  

“I’ve called your parents, too,” Beth says, “and they’re on their way. They should be here by the time you’re back from radiology.” She nods her head as she says this, as if this is supposed to make me feel better. Doesn’t she know that my parents never return after visiting hours? That everything about this seems far from okay?

“Meg, Meg, we’re here,” my mom says. I open my eyes and watch my dad wrap my smaller hands inside his bigger hands. My mom walks over and sits down by my side on the bed. I notice that she’s wearing just a t-shirt and jeans, without her trademark lipstick. She really must have been in a hurry to get here.  

I’m disoriented at first. But only for a few seconds. The pain in my chest reminds me why my parents rushed to get here.

“Honey,” my mom says. “How are you doing?”

“Tired,” I whisper. “What…happened?”

“The x-ray came back and they found that your feeding tube was doubled up in your esophagus,” my mom says.

My eyebrows dart down. What does that mean?

“The feeding tube was inserted wrong,” my dad adds. “And they think you must’ve gotten some formula in your lungs.”

So that must be what aspirate means, I think. Clearly not a good thing, but I wonder why everyone has made such a big deal out of this. Why the constant monitoring of my vitals? Why the x-ray? Why the call to my parents during the middle of the night? It seems a little over the top. I just want to go back to sleep.

“You’re a trooper.” My dad leans over and gives me a kiss on the forehead.

“You are, sweetie,” my mom adds.

__________

I led my life in fear for a long, long time. For years and years. Too many to count. There were so many unexplained things about my childhood illness. Could something like this happen again? It could. After all, I still have the same defective enzyme that I had when I was younger. That hasn’t gone away, nor will it ever during this lifetime.

In addition to this incessant fear, my other challenge was that I couldn’t get myself to talk about the things that had happened when I was younger. Or, more accurately, whenever I tried to talk about anything to do with my illness, I’d start to shake uncontrollably. This definitely served as a deterrent. Who likes to talk and shake at the same time? I don’t.

Given this, perhaps it was inevitable that something would eventually trigger me so much that I would be forced to take action and seek out a therapist, and that I would just need to learn to deal with all the shaking as I talked through things.

If I had to do it all over again, I would have looked my fear straight in the eyes earlier. I would have recognized the wisdom in my friend’s and my parents’ approach to life. For, believe me, as much as I thought I was tucking that fear away in a tight little box, it kept showing up at unwanted times.

I now know that the best way I can live my life is acknowledging that something terrifying happened and giving voice to it. This has allowed me to get to the point where I can be present in my daily life without getting constantly derailed.

It turns out that being present for your loved ones is one of the most beautiful gifts you can give.