Tuesday, January 10, 2012

Day 615: Survivor's Guilt


Almost a year and a half ago, I wrote a cryptically-titled piece called “Pontificating Blog” the day before I went in for my last AC chemo treatment. Though you can’t tell from the title what the blog entails, it has become one of the most popular of any that I have written. I suppose at its core it is a long and ponderous word maze through what it means to be a “survivor” of things, be it epilepsy, horrific car accidents, cancer, or any other method of cheating death. Sometimes when I read back on such pieces I am amazed that I had the presence of mind and the self-awareness in the middle of chemo to write about cancer the way I actually felt it, the way I actually experienced it, without caring about what other people thought I should say. For a long time I have felt that everything I needed to say about being a cancer survivor has already been said, was probably articulated at the very beginning of this so-called journey. Just the other day I told Gabe I wanted to quit writing the blog.


I think I was wrong, at least about everything being said already, though my days of writing this blog might be numbered. There is an aspect of being a cancer survivor that I didn’t anticipate when I was in the middle of fighting it: survivor’s guilt. I am not actually qualified to feel this yet in relation to cancer, and I’ll explain that further in a bit. But I am well-versed in what it means to feel survivor’s guilt in general. I was talking about this with Gabe last night, and I told him that sometimes I feel that if I understand anything in the world, I understand what might be termed the penultimate level of suffering. You know, the suffering you endure short of the ultimate suffering. In other words, I’ve spent a good deal of time looking over the precipice, into the abyss of brain damage, permanent paralysis, and even death, without actually having to go there.


Most people reading this know what I mean. I was the six year old who had upwards of 100 seizures a day and still performed at the highest level in school. The extremely toxic medication that I took to control those seizures for years thereafter almost killed me, poisoning my insides, permanently altering my liver, but granting me a three year reprieve from further medication by leading doctors to falsely label me “cured.” The “classic” tonic-clonic/grand-mal seizure that I had in front of the entire sixth grade put me back on medication but didn’t alter my life drastically.


The car that hit me when I was nine almost killed me, put me in a wheelchair for months, forced me to learn to walk again on my own with no physical therapy, gave me night terrors for a year and a lifetime of arthritis, but ultimately had no discernible impact on the way I’ve lived my life.


Enter cancer. I have gone through multiple surgeries, extreme doses of chemo, radiation, menopause, baldness, and fear. I’m still here, wearing this strange “cancer survivor” moniker, supposedly some kind of ass-kicker, an example of what it means to fight and win. But I am actually not that at all. I am only 20 months in, not at the critical two-year mark or the more comfortable three year mark that would tell me that I might have a reasonable chance of ultimately surviving triple negative breast cancer. One of the many reasons I have decided not to join cancer support groups, besides that being something that doesn’t fit with my personality, is that I can’t imagine I have any insight to give. I have survived breast cancer the same way that most women do. It is not the type of disease that usually kills you right away. If you are able to look back on your life ten years later, well, perhaps you are a breast cancer survivor. Until then, however, it’s the same business I’ve grown accustomed to: that penultimate experience, that constant question of what if? And never—really, for me, never—why did I have breast cancer? The question I ask myself is a why me? of a different sort. Why was I only stage one when the odds were so stacked against me to even detect my cancer? Why, when I have been on the shit end of the odds stick, with a rare form of cancer at an age when cancer shouldn’t even be an issue, would I not one day find myself with metastatic disease? Why would I survive this, when so many others do not?


There it is—a classic case of survivor’s guilt, which I would argue is not guilt at all, but actually realism rearing its ugly head in a society that believes that physical limitations impart weakness. This has come up so often over the years. Once on a blind date I discovered the guy I was meeting was disabled; he used crutches or a wheelchair due to spinal meningitis he contracted as an infant. He didn’t want to tell me beforehand, assuming I would refuse to meet him. We were able to talk about my experience being unable to walk, being confined to a wheelchair, and he seemed to find it interesting to find someone who had a taste of his life. But that’s it, just a taste, just a dabbling. That didn’t stick with me forever. I glimpsed the pre-ADA world of people with disabilities, but I didn’t live there for good. I was told I couldn’t return to school, because there were no accommodations for me. The assumption was that I would return when I was “better.” Of course, so many people never get “better.” How would life have been different for me if that were the case? There I was, a smart and curious fourth grader, being denied an education that would eventually lead to graduate school, all because a bunch of morons were waiting for me to shake off that pesky limitation called “being unable to walk.” As if it were their burden to carry, not mine.


I was almost denied even that same education years earlier, when teachers assumed I couldn’t perform well if I had epilepsy. My parents fought that notion and I remained in “mainstream,” even “gifted” classes. But there were many kids who were not so fortunate. I had no brain damage, no speech impediments, no visible marks of epilepsy, unlike thousands of other kids who had real cognitive delays or perceived cognitive shortcomings due to the disease. When I wrote a piece for CURE, just weeks before my breast cancer diagnosis, about my experience with epilepsy, I was unsure of what to say. What did I know, after all, about what it means to have epilepsy? To fight it the way my aunt does--with multiple types of uncontrolled seizures occurring every day, making it impossible to drive or even listen to music or use a computer--but raise a family and hold a job and live life like everyone else? I doubted the usefulness of my story, but came up with some anecdotes anyway, including one about having to tell boys that I had epilepsy when I went on dates as a teenager.


At some point in my life I remember telling someone about one of these experiences. When I was 14, I went out with a boy on the football team, and his mother drove us to the movie on our first date. There we were in the backseat, and I told him about my epilepsy, as my mother had instructed me to do, to protect him (never was I told that it was about me—I understood that part of the burden of illness was to protect other people from its effects) from being caught off-guard if I had a seizure when we were alone. I remember his mother looking at him in the rear-view mirror, assessing how well she had raised this child before he answered. He didn’t balk or even barely flinch, and he seemed to strangely relish the idea of rising to the challenge. I recalled how he got all chivalrous in that misplaced adolescent way, puffing up his chest and asking what he should do if that happened, how could he protect me? It seemed so bizarre all these years later, so absurd, and I laughed at the memory.


My friend’s response to this story was insightful: “Huh. You had epilepsy. And you dated boys on the football team?”


Given the ridiculous nature of those early romantic forays, I have to admit I had never thought of it that way. Other everyday things were ultimately surprising for their normalcy as well. My hips were broken in multiple places on both sides—a tough feat to accomplish unless you get struck with a force so fierce that it breaks the one side and flings you into the concrete so hard you break the other side as well. Yet I delivered two babies naturally, even after my OB told me the only way I might have trouble delivering is if “you know, you had fractured your pelvis or something.” Right Doc--all over the place. What price did I ultimately pay for that? Just a few awkward moments of him looking at me strangely, asking me to stand up naked, then assessing my hips with his eyes and declaring “what the hell. You’ll be fine.”


I’ve been robbed at gunpoint and made the stupid decision to talk to the assailant who had the gun at my head so I could get my keys out of my bag without him noticing. I’ve fought off many people who were bigger than me, boys and men stronger than me, and I’ve never been raped. I’ve seen my infant daughter suffer a terrible allergic reaction to cereal when we were in the remotest area of Wisconsin, far from medical assistance, only to have her recover on her own before the ambulance arrived. I’ve experienced horrifying bleeding at 26 weeks when pregnant with my son, only to have it turn out to be nothing but a burst blood vessel. There are so many examples, and I know I’ve gone over these here, but I’ve always come out on the other side. My life hasn’t been about these things at all. It’s been so relatively calm, interesting, fun, and yes, even normal. I’d venture to say it’s a normal, almost pedestrian life I’ve lived, with some curveballs thrown in, keeping it all in perspective.


I’ve often wondered what it would feel like to just live in your body as if that was the natural thing to do. Those who survive cancer are supposed to get back there someday, to that new normal. Regardless of cancer, I just don’t remember what it was like to take it for granted that I could think, walk, talk, go through the motions. We have so much focus on conquering our bodies, proving to ourselves that we can do amazing things, accomplishing athletic or physical feats that we thought were impossible. Though I focus on some of these things myself, I am never able to get too far into that mindset, having never had an assumption of youth, health and cognition on my side. The amazing thing is to do any of this at all, to put one foot in front of the other, every day, to wake up and find that these parts still work, and that yes, on some level, I am still young and vital. The amazing thing is how far away the alternative seems, no matter how many times I’ve stared it down. The things that haven’t happened seem impossible, even if they have almost happened to me, even if they happen to all kinds of other undeserving people every day.


I’ve said it before—“somebody else” is always somebody else to everybody until that person is you. Sometimes the only way to deal with this reality is to write long, ponderous blogs where you can admit that the word survivor is a strange, complicated, potentially even untrue term in your particular case, blogs where you can admit that the fact of survival right now, this very minute, produces feelings of both exhilaration and of guilt. Because even as you write you are thinking, it’s best to write this now, to document how it felt to have overcome these things, before they come back. It’s best to picture yourself in the getaway car before you get caught; just try not to look over your shoulder too much.



  1. It shouldn't be called survivor's guilt. That conjures to mind the image of a sinking ship with overloaded life rafts... A situation where tangible, comprehensible action maybe could save someone else (and maybe only through your sacrifice - you versus her, us versus them.)

    It's definitely the matter of perspective, however - I certainly hope you continue to be one of the lucky class who brushes with grim prospects but never truly suffers them. Those who truly suffer may not well be able to express their suffering nor advocate for themselves whereas you, sensitive to the possibilities, may have a purpose in continuing this blog and otherwise remaining involved breast cancer activities be it ROW or other organizations, or just continued sharing of your thoughts, feelings, and evolving perspective over time, to better help those of us who haven't been through it understand.

    I, a non-breast cancer survivor, certainly don't have any sense of guilt that you've somehow been lucky to survive. I still curse the fate that befell you to suffer as you already have and continue to hope that this has been the worst of any (pen)ultimate suffering you will endure for many years unto a ripe old age whence you may peacefully pass away in your sleep one night - either by fate on the same night as me or any time afterwards as you see fit. These are not choices to make... we will endure whatever we have to during the difficulties that life throws in the path of people as best we can, molded by the experience of human frailty as we age. In the meanwhile I think most anyone who is not in the "survivor" category doesn't have the faintest concept of this guilt... I am simply grateful that you are healthy and saddened when I hear news of someone dying from breast cancer, reminded of the prospect of your vulnerability and potential mortality.

    As a friend's mother and fellow breast cancer survivor imparted to me recently at a funeral for another neighbor (who did not die of breast cancer but had the kind of peaceful old age passing that I hope for everyone), "A breast cancer diagnosis just hangs over you like a shadow the rest of your life." I say shine a light in that shadow, forget the guilt, do what you can to improve the lives of those who may yet have even some small spec of their suffering reduced by the path you've already tread. Tell your doctors they SHOULD prescribe physical therapy early on after surgery - even during chemo you likely could have been recovering with less pain had they listened to what, in their perspective, were minor complaints: "She has a 3 on the pain scale but she might be dying of cancer so there's no real problem to treat here medically!" Perhaps they'll regard future patients differently based on your experience and results. Keep sharing your experiences with others. Continue to recommend that University of Chicago clinic to help women with the challenges presented to patients and survivors sexually. Periodically mention that 3D ultrasound and hopefully other patients will bug their doctors to get them into similar experimental programs to avoid what seems to be an almost medieval affectation the current protocol has for the clinical effectiveness mammogram. Keep suggesting that maybe much of the negative symptoms patients experience while undergoing chemotherapy treatment stems not from the chemotherapy but from the additional drugs supplied to treat the chemotherapy symptoms. Advocate for SOMEONE, ANYONE to be in the room with a patient when they come out of their tumor surgery to assist with the heavy emotional impact of whether or not the cancer has spread. You want to start a counseling service for teenagers whose parents are going through cancer treatment? Let's figure out how.

  2. I'll be damned if any of these things you've expressed don't in their positive outcomes far outweigh any sense of guilt you might have. You've gone through a lot, no doubt, and yes others have gone through worse, but I'm nothing but proud of how you've always handled yourself and been aware of yourself and your needs. Those of us who are healthy sad to see you go through it, would trade places with you to prevent your suffering were it possible, and yet are glad we're healthy. I don't think anyone dying of cancer would begrudge your survivor status however recent or premature it may be. They wish they could be you!

    So, it's a survivor's perspective you have, and you can label it guilt on a spectrum of guilt from perfectly healthy to death's door if you'd like - we all share in some piece of that pie, but it's not so much a thing to feel truly guilty for unless you're not doing what you can for yourself or to be there for and to help others. By that measure, you're doing just fine. Now, if you start talking about survivor's SHAME we've got a problem because it means you haven't been true to yourself.

    [I got a little wordy today - had to split this into two comments!]