Am I Surviving “Right”?

by Jessica MacePatient, Breast CancerAugust 10, 2022View more posts from Jessica Mace

I thought I had never experienced survivor’s guilt. The idea of guilt over surviving didn’t fit with the way I understand my feelings about the trauma of cancer, which we know can have many layers for us young adults. In the losses I’ve experienced since becoming a part of this community, I have felt utter heartbreak, outrage at how unfair life can be, and despair over the realization that we are not in control. But not guilt over being alive. Or so I thought.

I sat down ready to fiercely defend the fact that my feelings about being alive were closer to glee than to guilt, and offer my recommendation to spend your one beautiful life relishing your time on this planet. But in trying to explain myself, I realized I do in fact have a tremendous sense of survivor’s guilt. My specific experience of this phenomenon relates to feeling guilty—not for being alive, but for the way I’m living. It can be summed up by the question I often ask myself: “How do I lose sight of how lucky I am to be here, especially when I know others who are not?”

In my case, much of this guilt has to do with how I am parenting my young children. I feel like I am frequently losing the perspective I gleaned from the stage IV cancer diagnosis I was dealt in my mid-30s. But another aspect has to do with how much time I spend worrying. For in doing so, I wonder to what extent am I voluntarily allowing the cancer to play a role in my life, when others have not had a choice.

My older daughter was only one year old when I got sick (my second was born via gestational carrier), so I was still very new to the experience of parenthood at the time. But I could see that it was probably going to be some combination of pure joy and struggle. I remember sitting there in the throws of treatment, vowing that I would never take any of it for granted. I would embrace the good and the bad and be patient and calm, because why not! I had now seen it all. I would not lament the challenges of child-rearing out of respect for those who did not have the privilege of doing it any longer. And I wouldn’t even complain that having cancer might have made some of the parenting moments harder, because I knew how grateful I ought to be for merely surviving.

I’d venture to guess I’m not the only one who has ever made these bargains, but it hasn’t exactly gone that way for me 100% of the time. And that is where the guilt comes in. And shame. I feel it when I am exhausted, exasperated with a tantrum, or when my emotional capacity is zapped. “Where is your gratitude?” I ask myself. I know how much there is to appreciate about life and parenthood—the survivor’s mantra of “we should know better than anyone!” because we have been forced to contend with just how fragile life can be.

My thoughts about fear have been similar. I know I am lucky to be here right now, to have time. So why would I spend that time thinking about things that haven’t happened, and may not? I suppose I could make the case for some amount of worry to be rational in the cancer setting—it is a life-threatening disease. But the guilt creeps in again. For me personally, where I am with my cancer, worrying feels like a choice. It’s not go-time yet. So any time spent living in the distress of the past or uncertainty of the future feels like an affront to those who are no longer here, but would have given anything for an extra day on Earth no matter what it held.

I think what it comes down to is I know what I was supposed to learn from all of this: that there was, in fact, a gift from being forced to stare my mortality in the face at a young age and never live another day without the reminder that all of this is so precious. And brief.

But maybe there was also a more subtle lesson, from the guilt itself. And it’s that we are human and imperfect, and that these struggles don’t have to mean that we’re doing it “wrong”. We fall into thinking that those who didn’t survive would begrudge us these failings. But perhaps instead they wouldn’t want us to beat ourselves up so much.

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