I read a lot of blogs–not all cancer-related. Indeed, if I knitted as much as I read the blogs of knitters I’d have knitted a sweater for every human being in my neighborhood–not to mention a few chihuahuas. It amazes me how many of us blog about our cancer experiences. If we were blogging solely to educate there would be a miniscule fraction of people actually blogging. But by virtue of living with and exploring this collective circumstance, education takes place. We each find our niche, our audience, and our influence. For as many different people there are out there, there are just as many blogs.
With breast cancer blogs I like the variety of styles and approaches; I always learn something new and there’s always something said that makes me think. And, collectively, we create this cancer zeitgeist wherein certain threads appear more or less frequently. Pink culture is a big one, treatments and their side effects, the hierarchies of illness–just to name a few. More recently, though, the thread of how to speak to, with, or about someone with cancer has electrified the collective consciousness. Blogs, newspapers, magazines–it’s everywhere.
All of these posts and articles have done the right thing–they’ve made me think and perhaps enlightened a few folks. And it’s not like the points of these many authors aren’t salient. I do believe they are and the information is valuable. But I feel the spirit of The Gadfly coming upon me, brothers and sisters! And, as gadflies are wont to do, I’m going to bite.
One of the things about being human is how self absorbed we can become in our own life experiences. I mean, it’s almost impossible not to be self absorbed; we’re living an experience that may be very different from those around us and by virtue of that not everyone will understand how we feel or what we need at any given moment. When you get the cancer, it’s all about you. When you get engaged, it’s all about the nuptials. When you have a baby it’s all about pregnancy books and child rearing. I had a boss who was so self absorbed she could easily spend hours telling you all about her allergies, urinary tract infections, and skin biopsies.
I am very open about having cancer. I don’t particularly care who knows or what they think. Granted, my lovely friends have all been a warm and receptive sounding board for me in many ways and I am–and forever will be–eternally grateful to them for their patience. And there are times, when I’ve prattled on about my latest pill container purchase or life decision, I feel guilty for ragging their ear about the same damned thing all of the time. And I find myself now wanting to know more about other people, because cancer can get boring. It’s such a large part of my life at this point, it’s hard to remember that not everyone understands that or wants to listen to it. I am not an island; I need to consider others as well.
Like, when someone is clearly asking me what is wrong without actually asking me I answer this way: I scrunch up my face, tilt my head, and say, in my best Long Island accent parody, “Oi have breast canceh.” I don’t know why I do this. On one hand I don’t want to say it with pride: “I have breast cancer!” And I don’t want to do the passive-aggressive move where I pat my breast and whisper that “I’ve got the cancer.” I feel awkward so I try to make light of it. Making light of cancer! Sheesh! But the truth is that I feel their awkwardness (not to mention my own) and I try to defuse it with something humorous. If it’s making me feel awkward, then I know the person across from me feels awkward.
In New York City space is at a premium. On the sidewalk, in the park, in a grocery store–people are very aware of space. Which is why I have a particularly pointed dislike of those parents who insist on bringing their double-wide strollers into supermarket aisles barely able to accommodate the monstrosities. And these same parents look at me–as I eye them with absolute dismay–and demand that I give way. It’s always a standoff. If these same folks were reading and writing blogs about parenting (rude parenting), someone somewhere will have brought up the problem of how people without children just don’t understand the difficulties of people with children and people without children need to be more understanding of people with children. “I don’t care if I’m blocking a fire aisle, you can’t tell me to move my child.”
All of this is to say that it is my contention that when it comes to cancer–breast cancer in this instance–we have become so self absorbed that we forget–or refuse–to acknowledge what life was like before cancer. I’m not throwing stones, I’m just as self absorbed (we kind of have to be to navigate this nightmare), but like the parent pushing a front loader through a supermarket that could fit on my ass, we think people must understand us. They need to know how we feel. They need to say the right things so that we do not feel bad.
Why do we need to be protected so? What, we woke up in a different culture and in a different space in time? You’re going to tell me that if you never had prior experience with cancer of any kind that you never once . . .
- . . . expected a stage iv cancer patient to look like a blanched starvation victim and were surprised that they looked outwardly “healthy”? And had hair?
- . . . tried to ease a friend’s fears by saying, “You’re going to be fine. I just know it.”?
- . . . wanted to check out your friend’s implants to see what they felt or looked like?
- . . . NOT wanted to help, but you just didn’t know how?
- . . . kept your distance–even in the smallest way–because you didn’t want to bother your friend or colleague? You just didn’t know what to do? And, frankly, you were scared?
Now look, I’m not saying people aren’t idiots and can’t say and do some pretty awful things. And I’m not talking about some verbally and emotionally abusive monster in this essay. But I take absolutely no offense when someone, who has heard about my diagnosis, says “Scorch, you look great.” Because I think, “I’ve got stage iv breast cancer and you’re goddamned right I look great. I’m alive, honey.” Even I am a little mystified that I’m walking down the street feeling awesomer than awesome and then the thought hits me that I have this diagnosis; I think “How could this be?” So why would I begrudge someone’s awkwardness in the face of this thing?
Two very dear friends of mine always say, “You’re going to be fine, Scorchy. I know it. You’re a fighter. Nothing gets the best of you.” Sure, I know I’m not going to be fine in the long run, but they’re scared. They want to believe I’m going to be fine. Let ’em say what they want. I know where their hearts are. When the time comes and it’s time to draw the line and tell them to take off their rose colored glasses I’ll tell them, until then it’s not hurting me any.
A couple of my colleagues have said to me, “I have known so many women with breast cancer and they’re doing fine today.” I don’t think that’s insensitive. They’re relating their experience–which has been positive! Providing we were spared the horror of family members or close friends who have died from breast cancer, we thought the same thing: get a mammogram, catch it early, do yoga, you’ll be fine! One of my friends mentioned that her nephew’s mother died when he was six–breast cancer at age 31. Mortified, she apologized. No apology was necessary. It is what it is; I might even want to know more about it. What is the difference between that and a site that chronicles the death of a beloved spouse from MBC? The latter is a hell of a lot harder for me to look at, let me tell you.
Someone who isn’t a physician says to you, “My Aunt Louise had lung cancer. She went through hell, but she’s alive today knock wood!” We get insulted? It would behoove us to remember that all cancers are the same to people who never had cancer. Now, if a doctor said that to me I might ask that he hand over his license, but you get people from everyday life who–if they’re fortunate–only read about it, see it in the movies, or are two shades removed from it. What the hell do they know? Leave ’em be.
I’ve read plenty of discussion boards these last eight months and I have lost count of the number of times women with breast cancer have responded to posts insisting that a positive attitude would make someone prevail, a belief that the person to whom they’ve responded will be fine, or regaled readers with stories of every other cancer war story they’ve ever heard and then equated it with someone’s breast cancer. Or the women who shrugged off one man’s emotional abuse and lack of support as a “guy thing.” People with cancer can be just as clueless as those without.
I think we have every right to express our dismay or disappointment because the people around us don’t always understand. How can they? We live with it every day, so when we talk about it we’re in a safe zone of shared experience and understanding. We can bitch about the dismissive “friend,” the rude stranger, the clueless acquaintance, and the ignorant fool. Certainly parodies of the stupid things people say are spot on in their commentary. Those of us with cancer have to grow a skin that is thicker than normal. Wanting those who would not normally have a care in the world about cancer to stop and consider how we feel is normal; expecting them to do so is Utopian.