• Ellen Fiedler

Grace in the Face of Guilt

I’ve had a limp for as long as I can remember. I favor the right side of my body heavily, not just in writing but in walking and standing. If I concentrate hard enough, I can conceal it, but sometimes I get lazy or tired and forget. People mostly ignore it, but sometimes they ask, “What happened? Why are you limping? Are you okay?” I know they ask this out of concern, and I want to tell the truth - I really do - but most of the time I come up with something half-heartedly off the top of my head. The vice principal at my high school must have thought I was the most clumsy person in the world - I think I told him I twisted my ankle three or four times throughout the school year. This is an easy injury to explain away: I tripped and fell, I misstepped, I landed wrong while skydiving - whatever. Everyone understands, everyone twists their ankle. Something these concerned strangers don’t know about me, however, is that eight years ago I had a surgery that makes it physically impossible for me to do so.

Soon after I turned six years old in February of 2006, I started to feel an ache in my left leg. My pediatrician attributed the ache to growing pains, and said that it should subside soon. Instead of going away, it got worse, and I was constantly in pain. I went to countless specialists, got pricked by countless needles, got scanned by countless machines. No one knew what was wrong - there were guesses made, but none were correct.

One day in April 2006, I fell while getting out of bed and couldn’t pull myself to my feet. My parents rushed me to the hospital, where the doctors determined I had a cancerous tumor growing in my abdomen that affected my entire left leg. It was called a ganglioneuroblastoma - which is quite the mouthful! I won’t pretend to fully understand the oncological definition, so if you’re really interested, you can learn about this type of cancer here.

I was incredibly lucky that two surgeries were able to remove almost all of the tumor and that I didn’t need any radiation or chemotherapy. I was in the hospital for only a couple weeks, then I was able to go home and recover with my family. I even returned to kindergarten for half days, in a wheelchair and accompanied by my mom, at the end of the school year. I didn’t realize how lucky I was then - all I knew was that I couldn’t go on the playground with my friends during recess and that I had to do leg exercises with some guy named Brian every week. I had three more surgeries on my left foot throughout the following years, the final one fusing some bones together as a kind of last resort, but even this is mild compared to what others my age have endured. Looking back, knowing what I do now about childhood cancer and its terrifying mortality rate, I recognize how fortunate I am to be alive, to have this second chance.

Me, my parents, and my brothers before my second surgery.

But sometimes this gratefulness is clouded by confusion, doubt, and profound guilt. Who am I to receive this second chance when there are so many others who are far more deserving? Maybe another child who died of the same illness I was cured of would have accomplished so much more than me in their lifetime for the good of the world, while I’m here, taking up space that should have been reserved for them. My entire life has been spent trying to prove that I deserve the space I occupy, but I always seem to fall short. I hold myself to impossible standards when it comes to goodness. Incredibly human things like being a little selfish or losing your temper every once in a while are evil to me, and I imagine this darkness taking root inside me every time I’m anything but perfect. Sometimes I fear that one day, there will be no light left.

When I’m not feeling guilty, I find myself ruminating on the few misfortunes that I have experienced because of my illness. My left foot is decorated with scars that will never completely fade and curled toes that physical therapy could never quite straighten out. I’m constantly paranoid that people are looking at these little imperfections, repulsed, anytime I wear shoes that don’t cover them. I dislocated my left knee a couple years ago because of how weak my joints in that leg are. The increased possibility of a second dislocation combined with the weakness in my foot make any high-impact exercise incredibly difficult and scary, which has manifested itself in body image issues and unhealthy eating habits. When I find myself dwelling on these feelings, I grow angry. Angry at the unfairness of my situation, angry at my doctors and physical therapists for not doing more, and most of all, angry at myself for being so ungrateful.

How could I feel this way when I have so much to be thankful for, when I have been so much more fortunate than others?

Me and my favorite teaching assistant on the last day of kindergarten.

I’m aware that I’m being hard on myself. Whenever I talk about thoughts like these I like to separate my brain into two parts: my rational brain and my anxiety brain. My rational brain knows the facts and figures of my situation, and that these feelings of insecurity, guilt, and anger that I’ve had since early high school are valid and normal. It also knows I don’t need to spend my life proving that I was worth saving. But my rational brain rarely wins, and my anxiety continues to tell me that I need to live up to these standards that I believe were set for me the day I was declared cancer-free. There’s an invisible debt to the Universe hanging over my head that I’m not sure I’ll ever be able to pay.

Despite my constant frustration with it, I secretly take immense pride in being an enneagram type two. I believe that many prominent aspects of my personality - both negative and positive - are encapsulated perfectly in that type. However, in this context especially, it’s impossible for me to ignore my wing one. I hold these high standards because my greatest fear is being perceived as anything other than good. When I do or say something that I don’t perceive as “good,” I deprive myself of all good things - grace, kindness, compassion, love. When I get into this headspace, I try to remember these words from musician Sleeping At Last’s song “One,” which is part of his series on the enneagram:

The list goes on forever

Of all the ways I could be better, in my mind

As if I could earn God's favor, given time

Or at least congratulations

Now, I have learned my lesson

The price of this so called perfection is everything

I've spent my whole life searching desperately

To find out that grace requires nothing of me

I’m intentionally publishing this blog on April 26th, the day I had the surgery that removed all the cancer from my body back in 2006. Fifteen years of being unkind to myself has weighed heavy on my spirit, but I’m working to shed some of that weight. I’m trying to let the light in, even on days I don’t feel that I deserve it. Most of all, I’m learning that the Universe does not ask me to compensate for the lives of those who haven’t been able to see the days that I’ve been fortunate enough to see. Grace does not require this, and I should not require it of myself. I am worthy of kindness, compassion, love, and all other good things, and no imaginary debt can take that away from me.

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