Jay Lake (jaylake) wrote,
Jay Lake

[personal] Cancer, privilege and dialect

I was thinking yesterday about privilege and experience in our society, specifically in the context of my cancer journey. It's an interesting intellectual trail, at least to me. Most of this is stuff I've said before, but this iteration of my thoughts gave these ideas and this personal history of mine some added dimensionality.

Both on the face of it and deep down, I am the beneficiary of most forms of transparent privilege in contemporary American society. I'm white, male, slightly taller than average, with a short English name and a college education. To put it in one framing, I am a card-carrying birthright member of the patriarchy. To put it in another framing, I fit into many people's default conception of responsible authority. As I've sometimes joked, if I were 50 pounds lighter and $500,000 richer, I would be The Man. (Well, and maybe dress a little more formally and wear a little less ink on my skin.)

This privilege shows up in everything from the way I'm treated at shop counters to my well-paying high tech job. And believe me, I'm very, very aware of that. I try quite hard to not leverage my position in society when that's under my control. There are surely far more places where it is not only not under my control, but completely invisible to me. That's why they call it "privilege", after all.

Yet even in those terms, I'm not quite what I appear to be on the surface. There are some important invisible differences. Born and raised overseas, I'm a Third Culture Kid, which gives me a worldview fairly lateral to that of the average American white dude of my generation. As a survivor of sexual abuse in my early grade school years, I embody psychological, emotional and sexual characteristics that aren't reflective of a stereotypical middle class upbringing. As a long-time sufferer from chronic depression (roughly age 12 through age 25), including one hospitalization for a suicide attempt, I have a nonstereotypical mental health history. And though I am a straight-identified cis-gendered man, my sexuality is a lot more complex and dimensional that the heteronormativity implied by those labels.

None of that stuff is visible from a casual encounter with me, nor can it be discerned in most of what's written about me on the Internet. Yet those experiences and aspects strongly inform who I am. Even so, they're pretty holistically a part of me. I don't have a special sense of identification as an "abuse survivor" or a "Third Culture Kid" or whatever. They're just me. An inherent component of my acculturation and socialization.

Cancer, on the other hand, has been very different.

For the first time in my life, I've had a major portion of my privilege revoked. That's the privilege of being healthy (and not having to worry about my continued health). Like most forms of privilege, it's invisible to the people who possess it. The privilege of health was certainly invisible to me until I lost it. While I wouldn't pretend for a moment to complain that the chronically ill are an oppressed minority, we do pay huge prices for our conditions. Many of those prices aren't obvious outside the privacy of our own lives, and many of them unappreciated or misunderstood by others.

As a simple and obvious example, the entire conservative framing of the debate around healthcare reform is profoundly insulting to someone who actually has to deal with pre-existing conditions, out of pocket payments, lifetime treatment caps and end-of-life issues. You're worried about Sarah Palin's completely fictional death panels? Try an insurance company's policy review process sometime. The private market is not your friend once you become a net healthcare consumer. As we all do, eventually.

Cancer has also dragged me through emotional and mental terrain every bit as dreadful as what put me in the hospital back in 1980. The depression this time isn't chronic. Rather, it is savagely situational. And no less hideous or damaging for that.

Cancer has imposed costs on me that are largely invisible to others but no less staggering. These range from the trivial (increased home heating expense due to decreased cold tolerance) to the substantial (lost income from months of writing time lost, delaying book production). Not to mention the horrendous direct costs of out of pocket expenses, deductibles and co-pays ranging as high as $200 per week while on chemotherapy. And all that with good health insurance, conservatives opposed to HCR take note.

Even there, I am very lucky. My white, male, middle class privilege has brought me to a profession and a job where I can perform my duties even when too sick to leave the house. I am paid well enough to address most of those extra costs, even though it strains me financially.

Most of all, cancer has brought me to a new domain of experience. This is one I wouldn't wish on anyone, anywhere for any reason, but here I am.

So many of the markers of status, success, and vulnerability arise from the conditions of our birth. We're all born into an ethnic identity, a gender, a social and economic class. Any of those things can potentially be changed, some at much greater personal cost than others, but none of them are easy to revise.

But there are also experience domains that change and shape who we are. Women who've undergone pregnancy and childbirth have something in common that no one who hasn't been on that journey can really understand. Likewise combat veterans, or emergency responders, or emergency room physicians, or the desperately poor. I have been none of these people, I have done none of these things.

So it is with cancer patients. We share an immediacy of mortality that's unknown among the healthy, and differently shaped for people with other illnesses. We share a medical experience in the form of chemotherapy that is brutal beyond description, one of the most barbaric frontiers of contemporary healthcare. We share a profound sense of loss — loss of innocence, loss of hope, financial loss, emotional loss.

And that gives us a common dialect that cuts across lines of ethnicity, gender, class and really anything else. I can participate in conversations with fellow cancer survivors that have profoundly different meanings than even those exact same words shared with someone in baseline health.

This experience, cancer, is the first time in my life that I have felt different. Even those other lateral aspects of my character and upbringing that I noted were and are just part of me. Like being right-handed, or having pale eyes. Cancer feels imposed, unignorable, impossible to evade or escape or outlive. It's a gut-wrenching lesson in being on the other end of life's big stick.

Most of all, perhaps, cancer gives me far more to say, and far less time to say it in. If I do die of this soon, which seems rather more likely than not these days, I will regret most what cancer kept me from them by stealing these years away both before and after my death.

What must it feel like to have such regrets from the moment of one's birth?

Tags: cancer, culture, gender, health, healthcare, personal, race

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