May 1, 2017 at 1:51 pm (Uncategorized)

For years I’ve been at war with myself. I’ve been fighting sarcoidosis. I’ve envisioned myself in mortal combat for my life. It’s not just me that’s been thinking about warfare. I’ve had doctors talk to me about killing the disease, and friends encourage me to keep fighting. For the 13 long years I’ve been in Chronic Town, I’ve kept at, getting medication dripped into me that promises to be ferocious. Just a few days ago, I got an all-day infusion of Cytoxan—literally “cell killer”— in an attempt to manage yet another flare up of this damn disease.

As the IV dripped into me, my mind wandered. It has a tendency to do this on infusion days because I need horse doses of Benadryl to tolerate the toxins they call medicine. Cell killer. Just whose cells are getting killed? The idea, of course, is both to suppress my immune system that has gone awry and to target fast-growth cells that build the troublesome little balls called granulomae that are the hallmark of sarcoidosis. Usually I stop there. I’m a good patient. I follow doctors’ orders, swallow my pills on schedule, and have never once in nine years missed a chemo appointment. “You’re a fighter,” I’ve had more than one doctor tell me in praise. Part of my self-imposed job description has been not to think too hard about just whose cells my cell killer is obliterating. I’ve kept my head down and fought on.

But lately I’ve been picking my head up and taking a look around me. The nature of autoimmune diseases is problematic, even as a concept. It’s one thing to be invaded by a foreign attacker, say, bacteria, but quite another to have one’s own body turn against itself. How do you treat that? Strip away the clinical language of “suppressing an overactive immune system” or “targeting fast growth cells” and you are left with the idea of going after yourself, a kind of “we had to destroy the village in order to save it” type of thinking.

I’m tired. Being at war against oneself for thirteen years is just plain exhausting. Nine years of chemo is brutal. I’ll admit there are days when I intend to give up, to call it quits on all “treatment” options and let the proverbial chips fall where they may. Sometimes that sounds like the easiest path. But what is easiest is not always best. No, I am looking for something more nuanced than being a quitter. I’m not ready to consign myself yet to a life wholly bedridden or to death. I just want some peace.

How can I find it? I think it starts by changing of how I conceive of the disease. I’ve had enough of the language of warfare when it comes to my body. When I envision every day as a “fight” for normality, for a modicum of health, I’m simply wearing myself down more. I believe language matters. And the little voices in the back of my mind need a new script. No more battling, grinding, struggling, attacking, fighting—or, at least less of it. I’m aiming for way of living with this disease. After all, the disease is of me and in me. It pulses in time with my heart, flows through my veins. Living in a state of civil war for the rest of my life just isn’t possible.


  1. LivRancourt said,

    Beautiful piece. I sincerely hope that in changing the paradigm, you find what you’re seeking.

    • Rebecca Stanfel said,

      Thanks so much Liv

  2. Patricia L Heinicke said,

    The martial image has worked for you, for a long time. Here’s to it!

    And an even louder cheer for you as you step into a new paradigm. Hip hip hooray! We all need it!!

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