When do you become a Survivor?

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In the SL cancer survivors group meeting today, a friend raised the question of the definition of the term “survivor”. For most of us, we understood it as being a person who has gone into remission. But that’s not the definition they use. (And by “they” I think I mean the American Cancer Society.) To them, you become a survivor the moment you get your diagnosis.

We debated that. I understand wanting to use the term that way, to help people stay out of victimhood. (Though: sometimes you really are a victim. Do we use the world “survivor” to obscure this fact? Is it healthy to obscure it?) The leader of the group is a fan of this method, and I’m sympathetic to her motives. Who wants to tell someone that they’re a victim right now, but one day soon they’re going to move into the role of survivor? (Now that I think of it, that doesn’t sound all that bad at all.) We discussed the concept at some length. Many of us had moments where we felt we moved into survivorship; for some, you become a survivor the moment you decide to fight back. The youngest of us in the group (aged 26, stage 4 lymphoma, currently in remission) says he decided to fight back a second after he got the diagnosis.

I didn’t. For the first few weeks I felt that my incision belonged to my surgeon. I wasn’t a “survivor”. I was a battleground. I felt very passive. Now, even though I’m still struggling with some after effects and I probably have another 6 months before I start to get back to being my old self, I feel like a survivor. I think it might come when you decide to claim it.

I’m not even sure what that means.

At the beginning it was only fear, a fate I couldn’t bear to think about. It was too big for me to cope with. Once the surgery was over with, I felt certain that it didn’t matter to me anymore, the treatment was already done, right? The thing was out, it was over. I underestimated the importance of that final, confirmed diagnosis. It was cancer. I couldn’t say the word. I thought I had accepted it then, but I really hadn’t.

Through treatment I felt like I was going through the motions laid out by my doctor and the nuclear techs. I did what I was told, exactly the way I was told to do it. I clung to the lists of rules. I didn’t take shortcuts. It was like dance by numbers, follow the pattern of feet on the floor. Except in my case it was the outline of my body, and my job was to lay down and wait it out. I didn’t feel like a survivor then either. I felt pretty much like a puppet whose strings are pulled by someone more knowledgeable and more powerful. I was an avatar of cancer treatment.

I didn’t feel like a survivor when the depression sunk in, when I couldn’t stop crying. When my hips burned in pain. I didn’t feel like a survivor when I struggled just to walk from my bedroom to the bathroom. I definitely didn’t feel like a survivor the day after my wedding, when getting out of bed caused pain in every joint and all I wanted to do was lie down and cry.

I didn’t even feel like a survivor when my endocrinologist gave me the first all clear. (Hopefully I’ll get the second all clear in a couple of weeks when I see her again. Apparently this life is going to be a series of all-clears, or the opposite. If you never have cancer, you don’t get told that you still don’t have it. But once you’ve had it, I guess they’re always going to be checking, and giving me the all-clear, again and again and again. Unless I’m unlucky.) You’d think that would be the moment, when you’re finished and it’s gone. Nope.

I think I started to feel like a survivor when started building it and communicating about it. I blogged about it all the way along, that isn’t what I mean. There was something pretty magical about turning it into virtual-physical form that made a huge difference. It made me less afraid. No, not less afraid: less in denial. Once I turned the experience into something concrete, and other people started experiencing it with me in this way, telescoped out with lots of discussion and questions, it was then I started to feel like a survivor.

Maybe you become a survivor when you’re no longer in denial about what’s happening to you. You survive the denial, you move past it. It’s harder to move past cancer. Maybe we need more words for this. Words that pop into mind that are useful: victim (because let’s face it; this is one of the stages we go through), battleground, warrior, survivor.

If there’s one thing I’ve learned through all this it’s that there aren’t enough words in the English language. Not by a long shot.

5 responses »

  1. It is a difficult topic… and I definitely agree that everyone comes to the word survivor at different times. I’ve had cancer three times and I thought of myself as a survivor at different times with each one (I’m now 11 months in remission from the last one). The one word I don’t think I’ll ever use about myself again is “cured”.

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  2. Yeah, I know what you mean, “cured” is such a loaded term. It’s like you’re jinxing yourself.

    Yay on 11 months in remission, though! Are you in Second Life? You should come to the survivors group meetings, they’re really awesome, great people there.

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  3. “Survivor” is such a loaded word, it’s hard for me to decide whether or not I like its use in cancer circles. If the term is applied at diagnosis, what does that mean about people who don’t survive?

    Growing up, my mom “sruvived” breast cancer twice, though she never really called herself a “survivor.” When I was diagnosed, I didn’t see myself as a survior either, nor a victim. It just was another thing to deal with.

    I understand it can be empowering for some people, and if that’s what it take to help them through a tough time, who am I to argue?

    I also am freaked by the term “cured”. It’s only been a year since chemo, and I like to think this is all behind me, but I also don’t want to jinx it.

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  4. Thanks for the cheer! It has taken a bit longer for me to feel comfortable with the word “remission” this time around. Interesting the feelings that words can evoke in us…

    I am not on SL as of yet. I have a nasty habit of losing myself in online communities and I have to work to stay grounded in the real world.

    The best of luck to both you and Kendra.

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  5. I’m coming to my 19th year of ‘survivorship.’ I wanted to thank-you for acknowledging that ‘victim’ is a stage and it is indeed gone through.

    What I have found the most frustrating is getting ppl to understand that I was victimized by the the treatment – mainly because I’ve managed to stay alive for so long and I “look” fine. “Why isn’t she over it yet?”

    Over all this time I’ve traded one stage for another many times and am coming up on my latest return to strength. While the 2 1/2 years of chemo was hell, it weirdly had an easy element to it. It had a beginning and an end. I marked days off on a calendar. I celebrate anniversaries. It was fixed and now it’s over.

    The late effects/chronic health problems I have now have varied between annoying and completely debilitating. They have no clear end in sight are a slow leak of hell that constantly either hangs over or threatens my relationship with work, family, lovers and friends.

    I’m on an upswing again due to figuring out the specific toxin that’s been at work and detoxing it the hell out. But I don’t know what the world will look like when my head comes up for air this time. I don’t know when I’ll start feeling like a survivor again. But I do like knowing that it ebbs and flows.

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