Guilt of the Living

Coping with guilt when someone you love is dying.

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There was a visceral, discernable sense of guilt I felt the day I learned of my mother’s diagnosis, and against my best efforts at shaking that feeling, it persisted for months. For lack of a better phrase, I’ll simply call it “survivor’s guilt.” I kept repeating, over and over, “It’s not fair.” I said this mantra to myself when I’d cry in the shower every morning, to friends I’d spoken with about the diagnosis, to seemingly anyone willing to listen – it isn’t fair.

The events of the past few weeks have resurrected this concept in my mind with even greater clarity. Survivor’s guilt is typically experienced by victims of trauma: survivors of natural disasters, acts of terror, any tragedy in which a person watches other people die and yet somehow, against all odds, manages to survive. Psychologists characterize this phenomenon as a self-imposed sense of guilt over things beyond an individual’s control, as though a person had somehow done something wrong or committed some act of immorality by surviving what others could not.

It’s been over a year since my mother’s diagnosis (a Freudian slip – I mistakenly typed “over a tear”), and yet I still struggle with these feelings of guilt. I haven’t survived a traumatic incident – thankfully, I’ve never witnessed any disaster more severe than a car wreck – but I can empathize with the sense that one might feel afterwards. This kind, loving woman I care about is dying of a degenerative disease, and yet I’m somehow unscathed. I find myself simultaneously fearing the possibility that this disease is hereditary and, at the same time, feeling guilty for even having those fears for my own wellbeing while my mother’s health declines.

After growing up in a Catholic home and attending weekly mass for the first half of my life, I haven’t considered myself a Catholic in a long, long time. I stopped going to church many years ago, though I still frequently felt compelled to pray. Through the years I’ve struggled with the dissolution of my faith, but when my mother received her diagnosis I began to pray every day. I prayed that her diagnosis might be incorrect, that she would be okay, and I prayed that if someone had to die it ought to be me instead of my mother – anyone but her. She’s always been the kindest, most patient and caring person I’ve ever known. She didn’t deserve her diagnosis, and by extension, I felt that I didn’t deserve my health.

A memory: I was very young, around eight or nine years old and driving with my mother on a Saturday morning. We stopped at the bank on French Road and Transit in my hometown and my mother made a withdrawal in the drive-through. She parked to count the money and realized that the teller had mistakenly given her an extra $20.

“Wow!” I said. “That’s good luck!”

“No, we can’t keep it,” my mom said. “It’s not ours; it wouldn’t be right to keep the money.”

To my disbelief, she ran inside and returned the money to the bank. It’s a moment I’ll never forget because it was instrumental in helping me form my worldview. It made me realize that the world is not a moral place; the world is made good or bad by the people who inhabit it. As a young child, I realized so clearly in that moment that we are in control of our own morality.

But how, then, is it fair that someone so selfless and considerate should find herself losing control of her own body?

I suspect that everyone who loses a loved one or otherwise watches them suffer has had the thought at some point: it’s just not fair. No one deserves this type of diagnosis, and yet our initial response is almost invariably, “It should have happened to anyone else but them.” But who truly deserves these horrible circumstances? If you were granted the power to transfer illness or misfortune from one person to another, knowing that your power could ruin or kill a stranger, would you do it? Could you do it?

I struggle every day to make sense of the illness that’s affecting my mother. It’s taken me almost a year to actually acknowledge to myself that her ailing health is not my fault. I struggled with these feelings of guilt as I remain healthy. It’s taken months of therapy to be able to recognize and to say to myself: I haven’t done anything to cause these problems, and unfortunately, there is nothing I could possibly do to resolve them. There’s no logic or order to it – just a random genetic mutation by all accounts – and yet that in itself is part of the fear. We depend on systems of order, needing them for our continued sanity and sense of safety. When the fragility of those systems becomes apparent, I often find myself wondering, “If this could happen, what else could happen? What other unseen tragedies and misfortunes lay ahead?”

The sense of guilt over my good health, coupled with the fear of unexpected calamity and chaos, often leaves me feeling lost and confused. Because I have obsessive-compulsive disorder, I’m often compelled through some hard-wired impulse to try and make sense of the world, to order the chaos around me, even in small and insignificant ways: rearranging things on a table top, washing my hands even when they’re clean, counting ceiling tiles, looking for patterns in the grain of a wooden door or table, even just asking for confirmation from others that they’re not upset with me over some minor slight (real or imagined). It helps me feel in control of my circumstances, my surroundings, at least for a fleeting moment.

The problem is, there’s no way to make sense of the senseless, the chaotic, the random awfulness that pervades our lives. When catastrophes have fallen on friends in the past, I’ve told them again and again that they can’t blame themselves – that there’s no one to blame, no one at fault. These things just happen. And yet I struggle to allow myself this same comfort, just as I’m sure many others who’ve watched their loved ones suffer have also found ways to blame themselves. The anxious mind performs acrobatic feats to justify self-blame, self-doubt, self-loathing, and every day I struggle to see the clear, objective reality of the situation.

The reality of the situation is that bad things sometimes happen to good people. When I strip away the veneer of order I’ve tried to impose on the world, I see the chaos that lies beneath. My mother, however, has maintained her faith. I’m always moved by the firmness of her beliefs; in truth, I envy it sometimes. Where I see a random mutation, a disastrous illness, my mom sees God’s work. I’ll never forget her words when she first described her illness: “I had hoped to live longer, but God has other plans for me.” I’m still moved to tears when I think about those words.

In truth, I’m not sure what faith means to me today. I understand that for others it can provide a sense of purpose, an emotional and spiritual comfort during times of trouble. I adhere to a lot of Buddhist beliefs and ideologies, but it’s not something I can really feel capital-f Faith in. I still pray in my own way, but it’s more a deep-seated hope that everything will be okay. I suppose more than anything else I find myself believing in other people. I believe in my mother, my father, my partner, my friends and family, acts of kindness from strangers. It sounds hoaky, I know; but what else is there to take stock of in this life? If the people who inhabit the world make it a pleasant or a miserable place to exist, then surely the people who actively work to be kind and patient in the face of adversity are living saints among us.

I believe in people because I need to know that there is good in the world, that there can be some semblance of order amid the chaos. To those who are suffering, who are watching their loved ones suffer, my only advice is this: remind yourself daily that this is not your fault, and don’t give up your faith – even if it’s nothing more than believing in being kind to strangers, always hold onto that belief and try very hard (even when it feels impossible) to believe in yourself as well.

Author: thisbittersweetlifeblog

I’m a writer, editor, and hiker living in Los Angeles. In 2016, my mother was diagnosed with ALS. In 2017, she moved out to California so we could make the most of our time together. This blog is about making the most.

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